Effectiveness of a Peer-Led Self-Management Program for Older People with Type 2 Diabetes in China

Effectiveness of a peer-led self-management program for older people with type 2 diabetes in China

Huixia Shen MHSc (Nursing), RN

A thesis submitted in partial fulfilment of the requirements for the degree of

the Doctor of philosophy

School of Nursing, Faculty of Health

Queensland University of Technology

2008

Abstract

Type 2 diabetes is a common chronic disease, which has a negative health impact and results in enormous economic burden. The prevalence of type 2 diabetes is increasing dramatically and it affects older people disproportionately. The healthcare system in China is faced with an overwhelming burden due to a large ageing population, high prevalence of diabetes and limited healthcare resources.

Self-management has been widely accepted as the cornerstone of the clinical management of type 2 diabetes. Since self-management usually involves complex behaviour change and can be emotionally challenging, effective education is essential to facilitate this transition. However, there has been no existing program of type 2 diabetes self-management for older patients in China until now. Furthermore, the generalisation of any health education programs is often hampered due to limited healthcare resources in China.

The primary purpose of this study was to develop a socially and culturally suitable self-management program, which addressed self-efficacy and social support to facilitate behaviour change and subsequent health improvement, for older people with type 2 diabetes living in the community in China. The secondary purpose was to test a feasible delivery model of the program through involvement of peer leaders and existing community networks.

i This study was conducted in three phases. Phase one gathered information about barriers related to self-management behaviours and help needed to address them, from the perspective of older people with type 2 diabetes and community health professionals, through focus group discussion. Data from Phase One, together with guidelines of the selected theoretical frame work, results from an extensive literature review, and experiences of previous relevant studies provided the basis for development of a peer-led type 2 diabetes self-management program (Phase Two).

Phase Three involved a pre-test, post-test non-equivalent control group design to test the effectiveness of the self-management program on older people with type 2 diabetes in the community. The impact of the program on peer leaders was examined using a one group pre-test, post-test design. In addition, evaluation of the program from peer leaders’ and older people’s perceptions was conducted through a post-test questionnaire.

Older people with type 2 diabetes and health professionals expressed broadly the same concerns, which were: social support; confidence to practice self-management behaviours; self-management behaviours; barriers to self-management behaviours; and advice for ongoing health education. However, their points of view were not always identical and different emphases were identified.

The peer-led program produced significant improvement in social support,

ii self-efficacy, self-management behaviours and depressive status in the experimental group, as compared to the non-equivalent control group. However, there was no significant effect on quality of life nor health care utilisation. Therefore, the effectiveness of the program among older people with type 2 diabetes was partially

confirmed. In addition, the participants were supportive, giving positive feedback

about the program. Suggestions for future improvement were provided as well.

After receiving specific peer leader training and assisting in most of the delivery process of the program, the peer leaders improved, significantly, in overall self-management behaviours and in specific areas of social support and self-efficacy, though they did not improve in depressive status, quality of life and health care utlisation. In addition, these peer leaders enjoyed being peer leaders, and gave very positive feedback about the whole program.

In conclusion, this study has implications for understanding and facilitating self-management behaviours for older people with type 2 diabetes in China. The peer-led self-management program was effective in improving levels of self-efficacy, social support, self-management behaviours and depressive status among older people with type 2 diabetes living in the community in China. The delivery process involving peer leaders was deemed feasible to implement within the health care system in China. The program is suitable to be used by community health

iii professionals in their practice in China. The study also has potential wider benefit to nursing practice and global health practice.

iv Key Words

Type 2 diabetes

Older people

Self-management

Self-efficacy

Social support

Peer education

Intervention

vi Table of Contents Contents Abstract………………….………………………………………………………………. i Key words……..……………………………………………………………………….... v Table of contents……..…………………………………………………………………. vii List of figures…………………………………………………………………………….. xi List of tables.…………………………………………………………………………….. xiii List of appendixes……..…………………………………………………….………….. xv Authorship……..……..………………………………………………………………….. xvii Acknowledgements …..………………………………………………………………….. xix

Chapter 1 Introduction 1 1.1 Background ……………………………………………………………………...…… 1 1.2 Theoretical framework ……………………………………………………….………. 9 1.2.1 General introduction: triadic causation reciprocal model………………….……….. 9 1.2.2 Self-efficacy & behaviour…………………………………………………………... 13 1.2.3 Sources of self-efficacy……………………………………………………………... 15 1.2.4 Social support & behaviour………………………………………………………… 16 1.2.5 Social support & self-efficacy………………………………………………………. 18 1.2.6 Self-management behaviour and health outcome…………………………………... 19 1.2.7 Summary…………………………………………………………...... 20 1.3 Definition of terms……………………………………………………………………. 21 1.4 Purpose……………………………………………………………….……………….. 23 1.5 Objectives, questions and hypotheses…………………………………………...... 24 1.5.1 Objectives………………………………………………………………………...... 24 1.5.2 Questions……………………………………………………………………………. 25 1.5.3 Hypotheses………………………………………………………………………….. 27 1.6 Overview of methodology………………………………………………………...... 29 1.7 Structure of the document……………………………...... 30 Chapter 2 Literature Review Type 2 Diabetes and Self-Management 33 2.1 Overview of type 2 diabetes………………………………………………………….. 33 2.1.1 Definition…………………………………………………………………………… 33 2.1.2 Prevalence………………………………………………………………………….. 34 2.1.3 Health influence……………………………………………………………………. 37 2.1.4 Cost……………………………………………………………………………….... 38 2.2 Management of type 2 diabetes………………………………………………………. 40 2.2.1 Treatment of type 2 diabetes: glycemia control…………………………………….. 40 2.2.2 Significance of type 2 diabetes self-management…………………………………... 42 2.2.3 Current status of type 2 diabetes self-management in China………………………. 44 2.3 Summary……………………………………………………………………………... 46

vii Chapter 3 Literature Review Type 2 Diabetes Self-Management Education 47 3.1 Type 2 diabetes self-management education………………………….…………….... 47 3.1.1 Importance of diabetes education in type 2 diabetes management……………….… 47 3.1.2 Trends in diabetes education…………………………………………………...…… 49 3.1.3 Brief introduction of contemporary diabetes education…………………………….. 50 3.2. Social cognitive theory and type 2 diabetes self-management education……………. 54 3.2.1 Social cognitive theory and its application in health studies……………………..… 54 3.2.2 Self-efficacy and type 2 diabetes self-management………………………...………. 55 3.2.3 Social support in type 2 diabetes self-management………………………...………. 91 3.2.4 The relationship between self-efficacy and social support……………………...….. 123 3.3 Current studies on type 2 diabetes self-management education in China……………. 125 3.4 Summary………………………………………………………………………...……. 135 Chapter 4 Literature Review Peer Education Program 137 4.1 Overview of peer education program………………………………………………… 137 4.1.1Definition of peer education program………………………………………….…… 137 4.1.2 Utilisation of peer education in health programs…………………………………… 139 4.1.3 Organisation of peer education program …………………………………………… 140 4.1.4 Advantages of peer education program………………………………...... 148 4.2 Integration of self-efficacy & social support in peer education program…………….. 151 4.2.1 Enhancing self-efficacy through peer education program ……………………...….. 152 4.2.2 Strengthening social support through peer education program ……………………. 153 4.3 Feasibility and significance of peer education in China………………………….…... 155 4.4 Summary…………………………………………………………………………………... 157 Chapter 5 Methodology 159 5.1 Overview of the research design ……………………………………..…………… 159 5.2 Research settings..………………………………………………………………….… 161 5.3 Ethical consideration…………………………………………………………………. 162 5.4 Phase One…………………………………………………………………………….. 166 5.4.1 Research design…………………………………………………………………….. 166 5.4.2 Sampling framework………………………………………………………………... 167 5.4.3 Data collection procedures……………………………………………………….… 170 5.4.4 Data analysis…………………………………………………………………..…… 173 5.5 Phase Two…………………………………………………………………………….. 175 5.6 Phase Three…………………………………………………………………………… 177 5.6.1 Effectiveness test among general participants…………………………………….... 177 5.6.2 Effectiveness test among peer leaders………………………….……………….….. 199 5.6.3 Evaluation of the program…………………… ……………………………………. 202 5.7 Summary ………………………………………………………………...…… 204

viii Chapter 6 Findings and Discussions of Focus Groups 205 6.1 Findings of focus group discussion for older people with type 2 diabetes…………… 205 6.1.1 Participants’ characteristics ……………………………………………….………... 205 6.1.2 Themes…………………………………………………………………………….... 206 6.2 Findings of focus group discussions for community health professionals…………… 227 6.2.1 Participants’ characteristics ……………………………………………………..….. 227 6.2.2 Themes…………………………………………………………………………...…. 228 6.3 Discussion ………………………………………………………………………...….. 242 6.3.1 Social support……………………………………………………………………..… 243 6.3.2 Confidence to practice self-management behaviours…………………………….… 246 6.3.3 Self-management behaviours……………………………………………………….. 249 6.3.4 Barriers to self-management behaviours…………………………………………… 252 6.3.5 Advise for ongoing health education……………………………………………..… 255 6.4 Conclusion……………………………………………………………………………..….. 256 Chapter 7 Peer-Led Self-Management Program 259 7.1 Development of the program ………………………………………………...…….… 259 7.2 Aim of the program ……………………………………………………………...…… 262 7.3 Plan of the program …………………………………………………………….…….. 262 7.3.1 Education for older people with type 2 diabetes ………………………………….... 263 7.3.2 Selection and training of peer leaders ……………………………………………… 274 7.4 Pilot test ………………………………………………………………………..…….. 278 7.5 Main study……………………………………………………………………...…….. 281 7.6 Summary ………………………………………………………………………..……. 285 Chapter 8 Program: Effectiveness & Evaluation - Participants Perspectives 287 8.1 Sample description………………………………………...... 287 8.1.1 Sample size and attrition ……………………………………………………..…….. 287 8.1.2 Demographics………………………………………………………………...…….. 288 8.2 Comparison between participants completing and those discontinuing the study…………………………………………………………………………………….… 290 8.2.1 Demographics …………………………………………………………………….... 290 8.2.2 Baseline level of outcome variables ……………………………………………..… 293 8.3 Homogeneity of sample ……………………………………………………………… 295 8.3.1 Demographics………………………………………………………………...…….. 295 8.3.2 Baseline level of outcome variables ……………………………………………..… 298 8. 4 Effectiveness of the intervention …………………………………………………..… 301 8.4.1 Changes in social support ………………………………………………………..… 301 8.4.2 Changes in self-efficacy ………………………………………………………….… 308 8.4.3 Changes in self-management behaviours ………………………………………..…. 316 8.4.4 Changes in depressive status …………………………………………………..…. 325 8.4.5 Changes in quality of life ……………………………………………………....…... 331 8.4.6 Changes in health care utilisation……………………………………………...…… 335

ix 8.5 Program: evaluation …………………………………………………………………. 337 8.5.1 Quantitative data …………………………………………………………………… 337 8.5.2 Qualitative data …………………………………………………………………….. 339 8.6 Summary of Findings ………………………………………………………………… 341 Chapter 9 Program: Effectiveness & Evaluation - Peer Leader Perspectives 343 9.1 Demographics………………………………………………………………………… 343 9.2 Baseline level of outcome variables among peer leaders……………………...……... 346 9.3 Effectiveness of the intervention ………………………………………….…………. 349 9.3.1 Changes in social support…………………………………………..………………. 349 9.3.2 Changes in self-efficacy …………………………………………….……………… 351 9.3.3 Changes in self-management behaviours…………………………..……………….. 354 9.3.4 Changes in depressive status ………………………………… ……………………. 357 9.3.5 Changes in quality of life…………………………… ….………………………….. 358 9.3.6 Changes in health care utilisation ……………………...…………………………... 360 9.4 Program: Evaluation …………………………………………………………………. 361 9.4.1 Quantitative data …………………………………………………………………… 361 9.4.2 Quantitative data …………………………………………………………………… 362 9.5 Summary of findings………………………………………………………………..… 371 Chapter 10 Discussion and Conclusion 373 10.1 Needs Assessment ……………………………………………………………..….… 373 10.2 Baseline level of outcome variables………………………………………...………. 376 10.3 Effect of the program among general participants ………………………….……… 382 10.3.1 Effect of the program on self-management behaviours, self-efficacy and social support …………………………………………………………………….……………… 382 10.3.2 Effect of the program on depressive status, quality of life and health care utilisation ………………………………………………………………………………… 399 10.4 Effect of the program among peer leaders …………………………….……………. 403 10.5 Program evaluation ………………………………………………….……………… 406 10.6 Strengths and limitations …………………………………………………………… 408 10.7 Implications for practice…………………………………………………………….. 414 10.8 Recommendations for future research………………………………………………. 420 10.9 Conclusion ………………………………………………………..………………… 423 Appendixes ………………………………………………………………………………. 425 References ……………………………………………………………………………...… 479

x List of Figures Figure 1.1 SCT – behaviour determinants 10

Figure 1.2 Theoretical framework 20

Figure 5.1 Overview of the research design 160

Figure 5.2 Design for effectiveness testing among older people with type 2 179

diabetes (general participants)

Figure 7.1 Formation of peer groups. 283

Figure 8.1 Flowchart of recruitment of general participants 288

Figure 8.2 - 8.5 Interaction plot of Group X Time for social support 303

Figure 8.6 - 8.9 Interaction plot of Group X Time for self-efficacy 311

Figure 8.10 – 8.13 Interaction plot of Group X Time for self-management 320

behaviours

Figure 8.14 – 8.16 Interaction plot of Group X Time for depressive status 327

xii List of Tables Table 3.1 Self-efficacy & type 2 diabetes: descriptive/correlational studies 59

Table 3.2 Self-efficacy & type 2 diabetes: intervention studies 73

Table 3.3 Social support & type 2 diabetes: descriptive/correlational studies 95

Table 3.4 Social support & type 2 diabetes: intervention studies 107

Table 3.5 Type 2 diabetes intervention studies in China 127

Table 5.1 Stages of thematic content analysis 175

Table 5.2 Summary of used measures 184

Table 6.1 Demographics of patient FGPs participants 205

Table 6.2 Themes and categories from patient FGPs 206

Table 6.3 Demographics of professional FGPs participants 228

Table 6.4 Themes and categories from professional FGPs 229

Table 7.1 Main topics of Basic Diabetes Instruction (BDI) 265

Table 7.2 Time arrangement of the self-management program (BDI + SSS) 269

Table 7.3 Strategies for enhancing self-efficacy and social support 272

Table 7.4 Time arrangement of peer leaders training 276

Table 7.5 Main topics of peer leader training 277

Table 8.1 Demographics of general participants 289

Table 8.2 Comparison between participants completing and those discontinuing 291

the study by demographics

Table 8.3 Comparison between participants completing and those discontinuing 293

the study by outcome variables

Table 8.4 Comparison between experimental group and control group by 296

demographics

Table 8.5 Comparison between experimental group and control group by 299

outcome variables

xiii Table 8.6 Mean social support scores for experimental and control groups over 302

time

Table 8.7 Mean self-efficacy scores for experimental and control groups over 308

time

Table 8.8 Mean self-management behaviour scores for two groups over time 317

Table 8.9 Mean scores of depressive status for two groups over time 325

Table 8.10 Mean scores of quality of life for two groups over time 331

Table 8.11 Adjusted mean scores of bodily pain for two groups over time 335

Table 8.12 Mean scores of health care utilisation for two groups over time 336

Table 8.13 Evaluation of the program by general participants (quan) 338

Table 8.14 Evaluation of the program by general participants (qual) 339

Table 9.1 Comparison between peer leaders and participants by demographics 344

Table 9.2 Comparisons between peer leaders and general participants by 347

outcome variables

Table 9.3 Mean scores of social support for peer leaders over time 350

Table 9.4 Mean scores of self-efficacy for peer leaders over time 352

Table 9.5 Mean scores of self-management behaviour for peer leaders over time 355

Table 9.6 Mean scores of depressive status for peer leaders over time 357

Table 9.7 Mean scores of quality of life for peer leaders over time 369

Table 9.8 Mean scores of health care utilisation for peer leaders over time 360

Table 9.9 Evaluation of the program by peer leaders (quan) 362

Table 9.10 Evaluation of the program by peer leaders (qual) 363

xiv List of Appendixes

Appendix 1 Information sheet and consent form for focus group discussion…………..... 425 Appendix 2 Focus group discussion guide …………………………………...……..…… 431 Appendix 3 Information sheet and consent form for intervention ……………….….…… 436 Appendix 4 Measures for effectiveness test ……………………………………..……… 443 Appendix 5 Questionnaire for program evaluation ……………………………………… 452 Appendix 6 Peer leader training manual………………………………………….………. 454

xvi Authorship

The work contained in this thesis has not been previously submitted to meet requirements for an award at this or any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.

Signature

Date

xvii

xviii Acknowledgements

It hardly seems possible to fully thank the many people who provided support, encouragement and expertise along the way to completing my PhD study.

First and foremost, I wholeheartedly thank my principal supervisor, Professor Helen

Edwards, for being an excellent advisor, teacher, and role model to me. Her guidance, patience, commitment, and ongoing support have been tremendous over the past years. She stimulated my thoughts, gave me independence, and pushed me to the best of my ability. Because of her, I ultimately grow as a scholar and have a greater confidence in myself. I will always be proud that she is my supervisor.

I would also like to thank the associate supervisor, Professor Mary Courtney, for her time, expertise, and mentor. Her guidance and intellect have been instrumental in the development of my interest in self-efficacy. Her critiques and constructive suggestions helped me to clarify my ideas.

I would like to extend deep appreciation to the associate supervisor, Dr Jan

McDowell, who has been both a friend and mentor. She recognised my potential to succeed, trusted my judgment and helped me as a novice scholar. She gave generously and enthusiastically of her time, helping me a lot with statistics analysis

xix and superb editing. Her warm encouragements were always a source of inspiration for me.

I would like to thank Queensland University of Technology for sponsoring my education. Without this financial support I would not have been able to study full-time.

I would like to thank numerous friends and health professionals in Shanghai where the study was conducted, as well as those older people who so gladly participated in my study. I thank them for their confidence in me and generous contribution of their time.

Finally, I would like to express my sincere gratitude to my parents and my husband’s parents for their enduring support, sacrifices and care for the children. To my husband, Yong, who gives me love and always believe in me even when I doubted myself. To my sunshine, Jolly, who was growing inside of me when the project was in process, and encouraging me to be a wonderful mother.

xx Chapter 1 Introduction

1.1 Background

Type 2 diabetes is a very common chronic disease. The population of people with type 2 diabetes is on the rise worldwide. According to a report of the

World Health Organisation, the adult population (≥ 20 years old) with diabetes increased from 135 million in 1995 to 171 million in 2000, and is expected to reach 366 million by 2030 (King, Aubert, & Herman, 1998;

Wild, Roglic, Green, Sicree, & King, 2004), and type 2 diabetes accounts for around 90% of all these cases (World Health Organisation, 2007).

While diabetes is becoming epidemic worldwide, developing countries other than western industrialised countries bear a major part of the numeric increase (King et al., 1998). China is one of the most impacted developing countries by diabetes. The prevalence of diabetes has increased rapidly from around 0.9% in 1980 to 2.51% in 1994, and to 3.21% in 1997 in China

(National Diabetes Prevention and Control Cooperation Group, 1981; Pan,

Yang, Li, & Liu, 1997; Xiang, Wu, Liu, & Li, 1998). In addition, the prevalence is projected to attain 14% by 2010 (Xiang, Wu et al. 1998).

Although the prevalence is still low compared to other developed countries, since China has a very large population, the whole number of patients is

1 profound. According to estimates and projections of the World Health

Organisation, China has and will have the second highest number of persons with diabetes mellitus in the world (Wild, Roglic et al. 2004). In China, type

2 diabetes accounts for 95% of all diabetic cases (Zhao, 2002).

A major concern about this disease is its negative impact on health. Type 2 diabetes has many complications, which include blindness, renal disease, severe infection, amputation, myocardial infarction, congestive heart failure, stroke, etc (Folsom, Szklo et al. 1997; Haffner, Lehto et al. 1998; Molitch,

DeFronzo et al. 2004). These complications impair the physical, psychological and social well being of individuals as well as their families.

Type 2 diabetes also remains a leading cause of mortality. The risk for death among people with type 2 diabetes is about twice that of people without it.

The death rates of type 2 diabetes in urban areas in China are 5.16, 11.90 and 18.09 per 100,000 persons in year 1985, 1995 and 2000, respectively

(Peng, Zhou et al. 1998). Increased death rates are seen for all ages and races, while the highest rates are seen among older people (Roper, Bilous et al. 2001)

Type 2 diabetes places an enormous economic burden on the society. The expenditures include direct and indirect ones. Direct costs are resources

2 used to treat diabetes, including hospital expense, doctor services, laboratory tests and medical supplies. A national survey of 11 capital cities across China in 2002, showed that in urban areas the annual direct medical costs associated with type 2 diabetes was approximately RMB ￥18.82 billion (equivalent to around AUD $ 3.15 billion), or 3.95% of the whole annual health budget, with 81% of the medical costs attributed to treatment of chronic complications (Chen, Tang et al. 2003). A major part of the whole medical costs were consumed by the older population with type 2 diabetes.

In addition to direct costs, there are indirect expenditures due to productivity loss, disability and premature death. The total indirect cost is

RMB ￥2.35 billion (equivalent to around A $ 0.4 billion) in 11 large cities in 2002 (Chen et al., 2003).

The high mortality rate and exorbitant costs of type 2 diabetes are attributed to severe complications. Fortunately, all these complications can be prevented, or delayed, by maintaining blood glucose at near normal levels.

Studies from the Diabetes Control and Complications (DCCT) Research

Group (1993) and the United Kingdom Prospective Diabetes Study

(UKPDS) Group (1998) provide evidence that tight control of blood glucose levels could significantly reduce the risk of developing complications and prolong life for people with type 2 diabetes.

There are several treatments available for people with type 2 diabetes to control blood glucose levels, including lifestyle modification, oral medications and insulin. Among all these options, the fundamental role of lifestyle modification has been widely recognised. Lifestyle modification is a broad concept, including diet control, regular exercise, possibly weight reduction, blood glucose testing and foot-care (Bedno 2003; Bruce and

Hawley 2004; Carroll and Dudfield 2004). From the day when a person has been diagnosed with type 2 diabetes, multiple lifestyle modifications must be adopted in order to maintain a good blood glucose level.

Since the management of type 2 diabetes requires consistency in patient actions on a day-to-day basis, the concept of diabetes self-management has become popular nowadays. Self-management means that “people with chronic health conditions need to be able to deal with taking medicine and maintaining therapeutic regimens, maintaining everyday life such as employment and family, and dealing with the future, including changing life plans and the frustration, anger, and depression” (Redman 2004, P4). In addition, diabetes self-management means the diabetic patients need to accept responsibility for their own disease, thus they can adopt positive and recommended health behaviours to manage daily care and lifestyle needs

4 and maintain optimal well being (Sullivan and Joseph 1998). There is conclusive evidence that effective self-management behaviours lead to optimal glycemic level, improvement of social-psychological functions and better quality of life (Glasgow 1999; Norris, Engelgau et al. 2001; Norris,

Nichols et al. 2002). Self-management itself only needs modest cost, compared to the health care expenditures due to costly complications. So it is an acceptable cost-effective method for management of type 2 diabetes

(Banister, Jastrow et al. 2004).

Promoting type 2 diabetes self-management may be even more significant in China for the following reasons. First, there is a rapidly increasing prevalence of type 2 diabetes. Second, the health care resources are limited and many people have only partial or no form of health insurance (Gao,

Qian et al. 2002). However, the overall level of type 2 diabetes self-management in China is poor. To take an example, the proportion of self-reported practice of blood glucose test is only 14.6% and the practice of other items such as foot-care, exercise are also not good (Wang & Liu,

2003). It is not surprising that most people with type 2 diabetes cannot control blood glucose adequately, 42% patients have a haemoglobin A1C

(HbA1c) level more than 7.5%, since the performance of self-management is low in China (Chen et al., 2003).

Type 2 diabetes self-management usually involves complex behaviour change and can be emotionally challenging, so education is essential to assist patients to go through the transition. In early times, the popular assumption was people with type 2 diabetes do not know how to manage the illness because they lack the necessary knowledge (Mickus and Quaile

1997). Thus, diabetes education was usually focused on knowledge/information delivery. However, knowledge alone is insufficient for behaviour change (Brown 1990; Brown 1999).

From the late 1980s, the term diabetes self-management education was used more than diabetes education in the literature to refer to diabetes education programs that have patient self-management behaviours as a central focus.

The American Diabetes Association (ADA) (Mensing, Boucher et al. 2006) refers to diabetes self-management education (DSME) as an interactive, collaborative, ongoing process involving the person with diabetes and the educator to help the individual achieve identified self-management goals.

Since it is apparent now that improvement in knowledge alone cannot guarantee behaviour changes, current diabetes self-management education

(DSME) has incorporated other mediating factors, in addition to providing

6 information. There have been many theories/models developed to explain change of health behaviours and applied in diabetes education, such as the

Health Belief Model, the PRECEDE-PROCEED model, the

Self-Determination Theory, the Social Cognitive Theory and the

Trans-Theoretical Model. These theories/models have examined various factors in predicting self-management behaviours and accumulated useful evidence.

Type 2 diabetes education has not been incorporated into the current health care system in China. Though people with type 2 diabetes expressed a high need for related education (Gan, Tan, LI, Ye, & Zhang, 2001; Li, Ye, & Han,

2001; Wang & Sun, 2003), education programs are very limited, occurring only as episodic events in hospitals/communities or for research purposes.

Among current studies exploring self-management programs for people with type 2 diabetes in China, limitations can be identified, such as the lack of supporting theoretical frameworks, a reliance on knowledge delivery, and paying sole attention to physiological criteria such as HbA1c. Thus, the real effectiveness of these programs cannot be guaranteed. Furthermore, the older population has its own physical, psychological and social features and should be given special consideration when implementing education programs (Frich 2003). However, till now, there has been no program aimed

7 at this underserved group in China.

Health care resources are very limited in China. The total expenditure for public health was 7590.3 million RMB (which is equivalent to around

A$ 1265.05 million) annually, and there was an average of 1.51 doctors per

1,000 population (National Bureau of Statistics of China, 2006). The lack of health professionals and funds hampers the implementation of health programs. Identifying a program, which is feasible to be generalised under the local situation as well as meet target population’s needs, is imperative in

China.

Peer education programs have been used in a variety of health promotion and disease prevention programs, such as older people care, smoking cessation, breast cancer screening and safe sex practice (Earp et al., 2002;

Fabacher et al., 1994; Kim & Sarna, 2004; Martijn et al., 2004). After specialised training, working under the direction of nurses or other health professionals, peer leaders can be given some responsibilities usually undertaken by health professionals, such as providing education. The innovative behaviours/attitudes could be transferred from peer leaders to peers as a result of social influence. Peer education programs can lower the cost of health education programs as well as strengthening social support

8 and individualising intervention (Kim, Koniak-Griffin, Flaskerud &

Guarnero, 2004; Martijn et al., 2004; Schulz, Israel, Becker, & Hollis,

1997).

1.2 Theoretical framework

Good health promotion programs are the product of much effort and should be based on a supportive theory. Among various theories, The Social

Cognitive Theory (also known as its predecessor, the Social Learning

Theory) by Bandura may be more comprehensive than others because it is able to predict behaviour, as well as provide a basis for learning strategies and interventions for effective behaviour change (Bandura 1986; Schuster,

Petosa et al. 1995).

In this study, the Social Cognitive Theory (Bandura 1977; Bandura 1986) was used throughout the whole process: analysing the emphasised behaviours, the determinants of that behaviour, developing interventions to change the behaviour, organising implementation of the intervention, and finally evaluating the behaviour and the following outcomes.

1.2.1 General introduction: triadic causation reciprocal model

9 “People are neither driven by inner forces nor buffeted by environmental stimuli. Rather, psychological functioning is explained in terms of a continuous reciprocal interaction of personal and environmental determinants” (Bandura, 1977, p11). According to Social Cognitive Theory, human behaviour is affected by personal factors, environmental influences, and attributes of the behaviour itself (Bandura 1977; Bandura 1986). The relationships between the three determinants are shown as Fig.1.1.

Behaviour

Person Environment

Figure 1.1 SCT – behaviour determinants

The personal factors include cognitive, affective, and biological events

(particularly beliefs and cognition), such as how the individual feels about the behaviour, and their physical and/or emotional state. The environmental influences may include the physical-environment/surroundings as well as social-environment that may influence an individual’s behaviour. The

10 attributes of the behaviour itself may describe the degree of difficulty involved with the behaviour, any potential ramifications of the behaviour on the individual.

There is a dynamic interactive process among these three attributes. This process is constant and is defined as reciprocal determinism, which means there is mutual action between causal factors and anyone of them may affect each of the other two. Reciprocity does not, however, mean symmetry in the strength of bi-directional influences. Nor is the patterning and strength of mutual influences fixed in reciprocal causation. The relative influence exerted by the three sets of interacting factors will vary for different activities, different individuals and different circumstance. But, in most instances, the development and activation of the three sets of interacting factors are all highly interdependent (Bandura 1986).

1.2.1.1 Person & behaviour

Personal factors and behaviour can operate on each other. What people think, believe, and feel affects how they behave, and the outcome of their behaviour changes their perceptions. To take one example, the strength of people’s convictions in their own effectiveness determines whether they will even try to cope with difficult situations. People fear and avoid threatening

11 situations they believe themselves unable to handle, whereas they behave affirmatively when they judge themselves capable of handling successfully situations. And the cognitive events, in turn, are induced and altered most readily by experiences of mastery arising from successful behaviour

(Bandura 1977).

1.2.1.2 Environment & behaviour

Social-environments provide especially wide latitude for creating conditions that can have a reciprocal effect on one’s own behaviour. For example, groups similarly can use the power of collective pressure to develop and/or change social behaviours in ways that improve their life situation. On the other hand, behaviour can create environmental conditions, as well as regulate their impacts. For example, the behaviour of one social member activates particular responses from the repertoire of the other members, which, in turn, prompt reciprocal counteractions that mutually shape the social environment in a predictable direction (Bandura 1986).

1.2.1.3 Environment & person

Environmental influences can also affect individuals apart from their behaviour, as when thoughts and feelings are modified through modelling, tuition or social persuasion (Bandura 1977). People also evoke different

12 reactions from their social-environment simply by their physical characteristics or their social roles/status. For example, those who have high prestige and power may elicit more deferential and accommodating reactions than do those of a lower status. Thus, by their observable characteristics people can affect their social-environment before they engaging in any behaviour. The social reactions so elicited, in turn, affect the recipients’ conception of themselves and others in ways that either strengthen or reduce the environmental bias (Bandura 1986).

1.2.2 Self-efficacy & behaviour

Among personal factors in Social Cognitive Theory, efficacy expectation, which has come to be known as self-efficacy, may be the most important cognition. Self-efficacy refers to one’s beliefs in personal capabilities in organising and accomplishing the courses of action required to produce given accomplishments. Self-efficacy affects the intention to change risk behaviour, the effort expanded to attain this goal, and the persistence to continue striving in spite of barriers and setbacks that may undermine motivation (Bandura 1997).

The initial work in the development of Social Cognitive Theory tested the assumption that psychological procedures could result in behaviour change

13 by altering an individual’s level and strength of self-efficacy. Bandura (1997) postulates that self-efficacy is the most predictive factor in the development and maintenance of a new behaviour. People who are persuaded that they can succeed are more likely to expand the effort needed to perform the behaviour, which means finally they may perform better just because they feel they are capable of doing so. Till now, self-efficacy has been highlighted as one of the most predictive factors in behaviour change.

The concept of self-efficacy has been incorporated in a lot of health education programs, such as arthritis, pain management and myocardial infarction, and achieved positive changes in health behaviours

(Wells-Federman, Arnstein et al. 2002; Allison and Keller 2004; Siu and

Chui 2004).

In relation to type 2 diabetes self-management, self-efficacy refers to an individual’s own perceived ability to make appropriate judgments in planning, monitoring and performing the care regimen over one’s life period

(Aljasem, Peyrot, Wissow, & Rubin, 2001; Johnson, 1996). Studies have demonstrated strong association between self-efficacy and type 2 diabetes self-management behaviours (Hurley and Shea 1992; Aljasem, Peyrot et al.

2001; Shiu and Wong 2002).

1.2.3 Sources of self-efficacy

Sources to influence self-efficacy include four principal aspects: performance accomplishments, vicarious experience, verbal persuasion, and physiological feedback (Bandura 1997).

Performance accomplishments provide the most influential source of efficacy information. Actually performing an activity strengthens self-efficacy. Additionally, one’s perception of efficacy will vary with the difficulty of the task, the amount of effort and external support needed to complete the task, the circumstance under which the task is accomplished and past success and failures.

Vicarious experiences mean that an individual is capable of learning through the experiences of others. Observing others succeed or fail at a behaviour will influence an individual’s self-efficacy, especially if the one modeling the behaviour has a similar status. Efficacy derived from this source may be weaker than that from performance attainment.

Verbal persuasion refers to verbally telling an individual that he/she possesses the capability to master the given behaviour. Verbal persuasion is

15 particularly appropriate when the individual is engaging in a new behaviour and needs feedback from someone with more experience, and it will be more effective when the persuader is regarded as a knowledgeable and credible source.

Individuals rely in part on information from their physiological/affective state to judge their abilities. Physiological indicators are especially important in relation to coping with stressors, physical accomplishments, and health functioning. Individuals evaluate their physiological state, and if aversive, they may avoid performing a particular behaviour.

1.2.4 Social support & behaviour

Environment includes physical environment as well as social environment.

Social support is an important one among all the social environmental factors. There are various definitions of social support, explaining it from structural aspects and functional aspects. In this study, social support will be studied primarily from the functional perspective. Functional social support refers to the degree to which interpersonal relationships serve a particular function. The five core attributes of social support include tangible support, affection, positive interaction, emotional support, and informational support

(Sherbourne and Stewart 1991).

Although there have been many definitions of social support, there seems to be consensus that social support is one of the key element of the social environment that influence health behaviour (Levy 1983; Terborg, Hibbard et al. 1995). Support can help people boost and maintain their confidence, enthusiasm and motivation. Social support—by significant others or support networks—helps patients cope with chronic illness and reinforce health behaviour (Groessl and Cronan 2000; Glasgow, Toobert et al. 2001), especially in the elderly (Pinquart and Sorensen 2000).

Current self-management discussions always mention social support as a potentially important positive influence. Similarly, self-management interventions often include significant others (Gallant 2003). Substantial empirical evidence has been accumulated that social support plays a significant role in behaviour change, including smoking cessation, arthritis, heart disease and diabetes (Jakobsson and Hallberg 2002; Williams and

Bond 2002; Hughes, Tomlinson et al. 2004; May, West et al. 2006).

What is interesting is, the relationship between social support and self-management behaviours may be stronger for diabetes than for other illness according to a systematic review (Gallant 2003). It is possibly

17 because diabetes self-management behaviours involve more social components, such as those relating to diet, and may be more open to social network influences.

But it has to be acknowledged that studies addressing social support and self-management together are relatively limited till now. This may be because social support is commonly viewed as an influencing factor other than a real intervention.

1.2.5 Social support & self-efficacy

Bandura (1986) suggested two mechanisms through which social support is expected to have a large impact on self-efficacy. These include verbal persuasion and emotional arousal. Within supportive environments, people have opportunities to observe others achieve success, thereby influencing their own sense of efficacy regarding their ability to execute the same behaviours. Family and friends are sources of encouragement, as they often use persuasive communication to point out one's strengths, minimise weaknesses, highlight positive outcomes, and minimise negative ones. Such support is helpful in overcoming obstacles in the pursuit of behavioral goals.

In contrast, non-supportive individuals tend to suppress the development of positive self-efficacy beliefs, leading to lack of confidence in abilities.

1.2.6 Self-management behaviour and health outcome

According to Norris (2002), health outcomes can be classified as either short-term or long-term outcomes. Short-term outcomes may include glycemic control, physiological outcomes such as weight, blood pressure, lifestyle and mental health outcomes such as depression. Long-term outcomes may include complications, mortality, quality of life and economic outcomes such as health care utilisation.

Bandura (1997) stated that people who adopt healthful habits not only live longer, but also are healthier, with less need and demand for medical services. Thus, he believes self-management behaviours can improve the quality of health and reduce the need for medical services.

An accumulating body of empirical literature also demonstrates that successful self-management of chronic disease is related to better overall physical and psychological health outcomes. In addition, randomised controlled trials of self-management educational interventions have been shown to influence positive health outcomes for individuals with heart disease, arthritis, diabetes and other disease (Lorig, Gonzalez et al. 1999;

Clark, Janz et al. 2000; Wells-Federman, Arnstein et al. 2002).

1.2.7 Summary of theoretical framework

Human behaviour is based upon the interaction between cognition and social environmental processes. Since these two factors function as interdependent determinants, rather than autonomously, research aimed at estimating the relative percentage of behavioural variation due to persons or to environment is ill suited for clarifying the transactional nature of human functioning (Bandura 1986). In summary, Social Cognitive Theory emphasises that for effective behaviour to take place, self-efficacy conducive to that behaviour must be enhanced and supportive social-environment must be created.

Behaviour Health outcome

Self-efficacy Social support

Peer-led self-management program

Figure 1.2 Theoretical framework

20 In the current study, a peer-led self-management program is proposed to change self-management behaviours and subsequent improvement of health outcomes, through influencing self-efficacy and social support (Fig. 1.2 )

1.3 Definition of terms

The following terms are defined as used in this study.

Type 2 diabetes

Diabetes mellitus is a group of metabolic diseases characterised by hyperglycemia resulting from defects in insulin secretion, insulin action, or both. Type 2 diabetes, which was previously referred to as non-insulin-dependent diabetes, type II diabetes or adult-onset diabetes, is the most common form of diabetes mellitus. It may range from predominantly insulin resistance with relative insulin deficiency to a predominantly secretory defect with insulin resistance (American Diabetes

Association, 2007).

Older people

Commonly, older people are defined as aged 65 years or more. Since this study will be carried out in Shanghai China, the local standard is adopted.

Older people refer to “any person who is at least 60 years of age” (Shanghai

21 Public Health Bureau, 2000b).

Peer education program

Peer education program means those of the same social status, whether relating to age, ethnicity, gender, cultural or sub-cultural membership, who educate and help each other about a variety of issues or a specific concern

(Parkin and McKeganey 2000).

Diabetes self-management education

Diabetes self-management education (DSME) is an interactive, collaborative, ongoing process involving the person with diabetes and the educator(s) (Mensing, Boucher et al. 2006). This process includes assessment of education needs, identification of self-management goals, education and behavioral intervention, and finally evaluation.

Diabetes self-management

The concept of diabetes self-management means that the diabetic patients need to accept responsibility for their disease, thus they can adopt positive and recommended health behaviours to manage daily care and lifestyle needs and maintain optimal well being. Self-management may include adapting to a regimen of administration of oral medications or insulin or

22 both, monitoring of blood glucose levels, meticulous foot-care, exercise planning, and control of dietary fats and sugars (Sullivan and Joseph 1998).

Self-efficacy

Self-efficacy refers to one’s beliefs in personal capabilities in organising and accomplishing the courses of action required to produce given accomplishments (Bandura 1977). In relation to diabetes, self-efficacy refers to an individual’s own perceived ability to make appropriate judgments in planning, monitoring and performing the care regimen over one’s life period (Johnson 1996; Aljasem, Peyrot et al. 2001).

Social support

Social support refers to the degree to which interpersonal relationships serve particular function. It is comprised of five attributes, including tangible support, affection, positive interaction, emotional support, and informational support (Sherbourne and Stewart 1991).

1.4 Purpose

The primary purpose of this study is to develop a socially-culturally suitable self-management program for older people with type 2 diabetes living in the community in China. The secondary purpose is to test an effective delivery

23 model of the program through involvement of peer leaders and existing community networks. The effectiveness of the program was determined by measuring changes in the self-efficacy, social support, self-management behaviours, depressive status, quality of life and health care utilisation over time. The whole program was evaluated by those participants.

1.5 Objectives, questions and hypotheses

This study was a combined qualitative and quantitative design, being guided by the following research objectives. From these objectives, more detailed questions and related hypotheses were developed.

1.5.1 Objectives

1. Explore the barriers related to self-management behaviours faced by

older people with type 2 diabetes living in the community, and help

needed to address the barriers.

2. Describe self-efficacy, social support, self-management behaviours,

depressive status, quality of life and health care utilisation of older

people with type 2 diabetes living in the community

3. Develop and examine the impact of a type 2 diabetes self-management

program on self-efficacy, social support, self-management behaviours,

depressive status, quality of life and health care utilisation

24 4. Evaluate the program from the perspectives of peer leaders and older

people with type 2 diabetes.

1.5.2 Questions

Question 1.1 What are the opinions of older people with type 2 diabetes

about the barriers related to self-management behaviours

and the help they most need?

1.2 What are community health professionals’ opinions about

the barriers related to self-management behaviours faced by

older people with type 2 diabetes and the help they most

need?

Question 2.1 What is the level of self-efficacy among older people with

type 2 diabetes as measured by Chinese Diabetes

Self-Efficacy Scale (C-DSES)?

2.2 What is the level of social support among older people with

type 2 diabetes as measured by Medical Outcome Study

Social Support Survey (MOS-SSS)?

2.3 What is the level of self-management behaviours among

older people with type 2 diabetes as measured by Chinese

Diabetes Self-Care Scale (C-DSCS)?

2.4 What is the depressive status of older people with type 2

25 diabetes as measured by the Center for Epidemiologic

Studies Depression (CES-D)?

2.5 What is the level of quality of life among older people with

type 2 diabetes as measured by the Medical Outcome Study

36-item Short Form Health Survey (SF-36)?

2.6 What is the level of health care utilisation among older

people with type 2 diabetes as collected by a health care

utilisation data collection form?

Question 3.1 Is there a difference in self-efficacy, social support,

self-management behaviours, depressive status, quality of

life and health care utilisation of older people with type 2

diabetes following the implementation of a peer-led

self-management program as compared to a

non-intervention control?

3.2 Is there a difference in self-efficacy, social support,

self-management behaviours, depressive status, quality of

life and health care utilisation of peer leaders following

participation in the program and acting as peer leaders?

Question 4 What are peer leaders’ and older people’s perceptions of the

significance, suitability and feasibility of the program?

1.5.3 Hypotheses

In order to answer research question 3, the study set out to test the following research hypotheses :

Hypothesis 3.1.1 There will be significant change in level of social

support between the experimental group and the control group across

the study periods (baseline, 4 week, and 12 week).

Hypothesis 3.1.2 There will be significant change in level of

self-efficacy between the experimental group and the control group

across the study periods (baseline, 4 week, and 12 week).

Hypothesis 3.1.3 There will be significant change in level of

self-management behaviour between the experimental group and the

control group across the study periods (baseline, 4 week, and 12 week).

Hypothesis 3.1.4 There will be significant change in level of

depressive status between the experimental group and the control group

across the study periods (baseline, 4 week, and 12 week).

Hypothesis 3.1.5 There will be significant change in level of quality

of life between the experimental group and the control group across the

study periods (baseline, 4 week, and 12 week).

27 Hypothesis 3.1.6 There will be significant change in level of health

care utilisation between the experimental group and the control group

across the study periods (baseline, 4 week, and 12 week).

Hypothesis 3.2.1 There will be significant change in level of social

support among peer leaders across the study periods (baseline, 4 week,

and 12 week).

Hypothesis 3.2.2 There will be significant change in level of

self-efficacy among peer leaders across the study periods (baseline, 4

week, and 12 week).

Hypothesis 3.2.3 There will be significant change in level of

self-management behaviour among peer leaders across the study

periods (baseline, 4 week, and 12 week).

Hypothesis 3.2.4 There will be significant change in level of

depressive status among peer leaders across the study periods (baseline,

4 week, and 12 week).

Hypothesis 3.2.5 There will be significant change in level of quality

of life among peer leaders across the study periods (baseline, 4 week,

and 12 week).

28 Hypothesis 3.2.6 There will be significant change in level of health

care utilisation among peer leaders across the study periods (baseline, 4

week, and 12 week).

1.6 Overview of methodology

A combined qualitative and quantitative design was used for this study, which was conducted in three phases.

Phase One aimed to explore the barriers related to self-management behaviours faced by older people with type 2 diabetes, as well as to investigate the help needed to address the barriers. Two focus group discussions for older people with type 2 diabetes living in the community and two focus group discussions for community health professionals, each with eight to nine participants, were organised to collect the data.

In Phase Two, the findings from focus group discussions, together with the principles of the selected theoretical framework, result of a literature review, and experiences of previous relevant studies were integrated into the development of a self-management program for older people with type 2 diabetes living in the community in China. The program was then piloted with a small group (N=14) of the targeted population.

There were two categories of older people with type 2 diabetes involved in

Phase Three. One category was the general participants, including experimental group and control group. Another category was the peer leaders, who assisted in most of the delivery process of the self-management program. A pre-test, post-test non-equivalent control group design was utilised to test for effectiveness of the program among general participants. A one-group pre-test, post-test design was used to examine the impact of receiving peer leader training and acting as peer leaders. Outcome variables were those described in Section 1.5.2 -1.5.3.

Data were collected on three occasions: at baseline, and four and twelve weeks from implementation of the program. An evaluation of the program from the perspectives of peer leaders and older people with type 2 diabetes was organisied at the completion of the study through questionnaire survey.

1.7 Structure of the document

Chapter One begins with a discussion of background information to the research project. A theoretical framework for this study and the definition of related terms are provided. The purpose, research objectives and specific questions of this study are outlined. An overview of the methodology is also presented.

Chapter Two describes the prevalence, health influence, cost and current management options of type 2 diabetes, emphasizsng the significant role of type 2 diabetes self-management. The situation of self-management performance in China is also reported.

Chapter Three provides a description of diabetes self-management education and its evolving trend. A review of literature on the application of

Social Cognitive Theory in type 2 diabetes self-management education follows. Special consideration is given to two important concepts, self-efficacy and social support. Possible strategies to enhance them are discussed. Finally, current research in this field in China is critiqued, with further discussion about limitations for future research.

Chapter Four presents an overview of Chinese health care resources, followed by the introduction of peer education programs and their utilisation in health studies. The possible advantages and the feasibility of using peer education programs in China are also explored.

Chapter Five outlines the methodology employed for the three phases of the study in detail, which includes research design, research questions,

31 recruitment, measures, data collection procedures, and data analysis.

Chapter Six reports the findings of Phase One (focus group discussion), implications drawn from which for future program development are reported as well. Chapter Seven describes the development of a peer-led self-management program for older people with type 2 diabetes in China.

The process and result of a small-scale pilot study is presented as well.

Chapter Eight presents the results of the effectiveness test of the program among older people with type 2 diabetes (general participants) and their evaluation of the program. Chapter Nine presents the results of the effectiveness test of the program among peer leaders and their evaluation of the program. All results are discussed in Chapter Ten. Strengths and limitations of the current study, implications for clinical practice and recommendations for future research are also outlined in Chapter Ten.

Chapter 2 Literature Review Type 2 Diabetes and Self-Management

2.1 Overview of type 2 diabetes 2.1.1 Definition

Diabetes mellitus (DM) is a group of metabolic diseases characterised by hyperglycemia resulting from defects in insulin secretion, insulin action, or both (American Diabetes Association, 2007). Diabetes mellitus can be categorised into two major types. Type 1 diabetes, previously encompassed by terms insulin-dependent diabetes, type I diabetes or juvenile-onset diabetes, is characterised by beta cell destruction caused by an autoimmune process or by an idiopathic process, usually leading to absolute insulin deficiency. Type 2 diabetes, which was previously referred to as non-insulin-dependent diabetes, type II diabetes or adult-onset diabetes, is the most common form of diabetes mellitus, accounting for around 90% of all diabetes cases worldwide (World Health Organisation, 2007). It may range from predominantly insulin resistance with relative insulin deficiency to a predominantly secretary defect with insulin resistance (American

Diabetes Association, 2007).

2.1.2 Prevalence

The prevalence of diabetes mellitus in the adult population (≥ 20 years old) worldwide in 1995 was approximately 135 million, according to a World

Health Organisation study (King, Aubert et al. 1998). In 2000, the number of adults (≥ 20 years old) with diabetes mellitus worldwide rose to 171 million, or 2.8% of the whole population (Wild, Roglic et al. 2004). By

2030, the number of adults (≥ 20 years old) with diabetes mellitus in the world is expected to grow to 366 million, or 4.4% of the whole population

(Wild, Roglic et al. 2004). Type 2 diabetes accounts for around 90% of all diabetes cases (World Health Organisation, 2007). Although these studies do not differentiate between type 1 diabetes and type 2 diabetes, it can be safely concluded that a worldwide type 2 diabetes epidemic is underway and this problem may be much worse as we continue into this new century.

While diabetes is becoming epidemic worldwide, developing countries other than western industrialised countries bear a major part of the numeric increase (King, Aubert et al. 1998). China is one of the most impacted developing countries. According to estimates and projections of the World

Health Organisation, China has the second highest number of persons with diabetes mellitus: the number of adults (≥ 20 years old) with diabetes

34 mellitus rose from 16.0 million in 1995 to 20.8 million in 2000 and will reach 42.3 million by 2030. Among these cases, most are type 2 diabetes

(Wild, Roglic et al. 2004).

Type 2 diabetes has been a disease rarely known in China and there have been very limited population surveys or other research about type 2 diabetes in China. National-level prevalence data for China were available for the first time from a 1980 survey, which found an overall rate of diabetes at

0.9% with considerable regional variation (National Diabetes Prevention and Control Cooperation Group, 1981). In 1994 a population-based epidemiological study estimated the prevalence of diabetes mellitus was about 2.51% (Pan, Yang et al. 1997). In 1997, the Chinese Academy of

Preventive Medicine conducted a nationwide survey. Results showed that the overall prevalence rate of diabetes mellitus was 3.21% (Xiang, Wu et al.

1998). From 2000 to 2001, the International Collaborative Study of

Cardiovascular Disease in ASIA stated that the prevalence of diagnosed diabetes mellitus and undiagnosed diabetes mellitus in Chinese adults were

1.3% and 4.2% respectively (Gu, Reynolds et al. 2003). According to projection, the prevalence of diabetes will reach 14% by 2010 (Xiang, Wu et al. 1998). Although some statistical data do not differentiate between type

1 and type 2 diabetes, type 2 diabetes accounts for 95% of all diabetic

35 patients in China, and most type 2 diabetes cases are in the adults group

(Zhao 2002). Therefore the rising prevalence of type 2 diabetes in the

Chinese population is a major issue.

While all of China is undergoing major changes, urban areas are centers of rapid economic development, and people living there have been experiencing a major shift in their traditional lifestyle over the last two decades (Cockram 2000). The prevalence of type 2 diabetes is much higher in larger urban cities than in medium or small urban cities (Wang, Li et al.

1998; Wu, Xie et al. 2005). A survey carried out in Shanghai in 2000 found

9.8% of the adult population (20-94 years of age) had type 2 diabetes (Jia,

Xiang et al. 2002). At the same time, a survey carried in Beijing found

12.81% of the adult population (aged 35 years and over) had type 2 diabetes

(Zhang, Jiang, & Wang, 2001).

One point to be mentioned is that type 2 diabetes impacts on the ageing population disproportionately though it can influence all age groups. The prevalence of type 2 diabetes increases dramatically with ageing. The prevalence of type 2 diabetes in people aged 50 years old and over is approximately three times higher than in general population in China (Zhou and Tao 2003).

2.1.3 Health influence

Type 2 diabetes mellitus remains a leading cause of mortality. The risk for death among people with type 2 diabetes is about twice that of people without type 2 diabetes. The death rates of type 2 diabetes in urban areas in

China are 5.16, 11.90 and 18.09 per 100,000 persons in year 1985, 1995 and

2000, respectively (Peng, Zhou et al. 1998). Increased death rates are seen for all ages and races, while the highest rates are commonly seen among older people (Roper, Bilous et al. 2001).

Type 2 diabetes has many kinds of complications, which can be categorised into microvascular or macrovascular. The microvascular complications affect small vessels and are manifested in retinopathy, nephropathy and neuropathy, which can cause blindness, renal disease, severe infections and amputations (Molitch, DeFronzo et al. 2004). The macrovascular complications of hypertension and cardiovascular disease can cause myocardial infarction, congestive heart failure and stroke (Folsom, Szklo et al. 1997; Haffner, Lehto et al. 1998). The ageing process appears to interact with hyperglycemia, and to accelerate the onset of late diabetic complications with their onset occurring within 5 years of the diagnosis of diabetes, such as retinopathy and nephropathy (Morley 1998).

Type 2 diabetes can have a major impact on the physical, psychological and social well being of individuals and their families through poorer functioning, increased inconvenience and impaired personal relationships.

Furthermore, complications resulting from type 2 diabetes are responsible for morbidity as well as cognitive and mental health problems, especially for older people (Stewart and Liolitsa 1999; Blaum, Ofstedal et al. 2003).

Depression, which is a very common disorder in later life, occurs more commonly in people with diabetes than in non-diabetic people, particularly in those patients with complications (Argyriadou, Melissopoulou et al. 2001;

Goldney, Phillips et al. 2004). Furthermore, the presence of depression is strongly associated with deteriorating quality of life, especially among elderly people (Goldney, Phillips et al. 2004; Paschalides, Wearden et al.

2004; Kim 2005) and needs special consideration.

2.1.4 Cost

Because of its life-long nature, the severity of its complications and constant treatment, type 2 diabetes is a costly disease. Direct costs are resources used to treat diabetes, including hospital expenses, doctor services, laboratory tests and medical supplies. These costs range from relatively low-cost items,

38 such as primary-care consultations and hospital outpatient episodes, to very high-cost items, such as frequent visits to the emergency room, longer hospitalisation for uncontrolled type 2 diabetes and serious complications, such as blindness and amputation.

A national survey of 11 capital cities across China in 2002, showed that in urban areas the annual direct medical costs associated with type 2 diabetes was approximately RMB ￥18.82 billion (equivalent to around AUD $ 3.15 billion), or 3.95% of the whole annual health budget, with 81% of the medical costs attributed to treatment of chronic complications (Chen, Tang et al. 2003). A major part of the whole medical costs were consumed by the older population with type 2 diabetes. Commonly, the medical cost of an older patient is much higher than that of a young patient (Xing and Yu

2003).

Type 2 diabetes is costly for the affected individuals as well as society.

Because health care insurance is not available for the whole population in most developing countries, a large number of patients have to pay all or a major part of the health expenditure themselves.

In addition to direct costs, there are indirect costs attributable to type 2

39 diabetes. These expenditures include productivity loss, cost of disability and premature death. Many people with type 2 diabetes may not be able to continue working, or work as effectively as they could before. Sicknesses, absenteeism and premature retirement all contribute to a loss of productivity

(Valdmanis, Smith et al. 2001; Weijman, Ros et al. 2003). Although it is more difficult to estimate, indirect costs are still an important factor to consider when evaluating the whole costs of type 2 diabetes. The total indirect cost is RMB ￥2.35 billion (equivalent to around AUD $ 0.4 billion) in 11 large cities in 2002 (Chen, Tang et al. 2003).

2.2 Management 2.2.1 Treatment of type 2 diabetes: glycemia control

The high mortality rate and exorbitant costs of type 2 diabetes have been directly attributed to the development of severe complications, such as blindness, heart disease, limb amputation and so on. Fortunately, all these complications can be prevented, or delayed, by maintaining blood glucose at near normal levels. The Diabetes Control and Complications Trial (DCCT)

Research Group (1993) suggested that maintaining tight control of blood glucose levels could significantly reduce the risk of developing complications. The United Kingdom Prospective Diabetes Study (UKPDS)

Group (1998) demonstrated that glycemic control is important in reducing

40 the risk of long-term micro-vascular and macro-vascular complications and prolonging life for people with type 2 diabetes. Proper glycemic control can also improve cognitive function, psychological status, and quality of life of people with diabetes (Goddijn, Bilo et al. 1999; Jacobson 2004; Lau,

Qureshi et al. 2004).

There are several pathways available for people with type 2 diabetes to control blood glucose levels, including lifestyle modification, oral medications and insulin. Many studies have demonstrated the effectiveness and feasibility of lifestyle modification in treating type 2 diabetes. Blood glucose levels can be improved through diet control, regular exercise, weight reduction, and frequent monitoring of blood glucose (Bedno 2003;

Bruce and Hawley 2004; Carroll and Dudfield 2004). In case of failure of these measures, oral medications are introduced. Now there are five main types of oral medication, e.g. sulfonylureas, biguanides, thiazolidinediones, meglitinide and alpha-glucosidase inhibitors. These oral medications can effect through promoting insulin creation, increasing cells’ sensitivity to insulin and decreasing absorption of sugar. If response to oral medications is still inadequate, insulin can be used for diabetes treatment (Florence and

Yeager 1999; DeWitt and Dugdale 2003).

41 Among various treatment options, the fundamental role of lifestyle modification in managing type 2 diabetes has been widely recognised.

Positive outcomes of comprehensive lifestyle interventions have been demonstrated through several studies. Many people with type 2 diabetes can control their condition for years by maintaining healthy lifestyle habits without other intervention (Maislos and Weisman 2004; Wolf, Conaway et al. 2004). Type 2 diabetes treatment guidelines state that after a patient is diagnosed, he/she should be initially treated with lifestyle changes. Only if these measures cannot control blood glucose levels, oral medications and insulin will be introduced (American Diabetes Association, 2003). Even if oral medications or insulin treatment are used, they still cannot take the place of lifestyle modification. People must adopt healthy lifestyle as well as medications or insulin to achieve an ideal blood glucose level.

2.2.2 Significance of type 2 diabetes self-management

Lifestyle modification impacts upon almost every aspect of life, thus people must make necessary adjustments for disease control, which may mean compromise and giving up preferred tendencies and habits as well as social demands. Furthermore, due to its chronicity, type 2 diabetes requires strict long-term maintenance of management. How to help people deal with the strain of disease and enable effective compliance with healthy lifestyle

42 principles may be the most challenging problem for both people with type 2 diabetes and health professionals.

The concept of diabetes self-management means the diabetic patients need to accept responsibility for their disease, thus they can adopt positive and recommended health behaviours to manage daily care and lifestyle needs and maintain optimal well being (Sullivan and Joseph 1998). Diabetic patients who perform effective self-management behaviours can achieve, as well as maintain optimal glycemic level (Glasgow 1999; Norris, Engelgau et al. 2001; Norris, Nichols et al. 2002). As a result, disease progression is slowed and the risk of developing complications is substantially reduced. In addition, during the self-management process, people become more aware of their own ability in the day-to-day management of their disease and become more independent. The feeling of empowerment will lead to better physical and psychological well being, along with less depression. All these have positive influence on quality of life in the long term (Glasgow 1999;

Norris, Engelgau et al. 2001; Norris, Nichols et al. 2002).

Since self-management indicates modest costs, when compared to the health care expenditures due to costly complications, it is an acceptable cost-effective method for treatment of type 2 diabetes (Banister, Jastrow et

43 al. 2004). Nowadays, type 2 diabetes self-management has been considered as the cornerstone of the clinical management of type 2 diabetes (Mensing,

Boucher et al. 2000).

2.2.3 Current status of type 2 diabetes self-management in China

Qian et al. 2002). However, the overall level of type 2 diabetes self-management in China is poor.

People in China rely heavily on medication with the proportion of self-reported compliance to medication varying from 68% to 93% of medication usage (Gan & Ding, 2003; Wang & Liu, 2003; Ying et al.,

2003)(Gan and Ding 2003; Wang and Liu 2003; Ying, Jiao et al. 2003). In contrast, the overall level of lifestyle modification is poor. Diet control is the most popular activity adopted by people with type 2 diabetes (Gan &

Ding, 2003; Ying et al., 2003; Zhang & Zhu, 2003). Exercise has also been adopted by a majority of people (Gan and Ding 2003; Ying, Jiao et al. 2003;

44 Zhang and Zhu 2003). However, the situation of blood glucose testing, weight control and foot care is worse, adopted only by 32.9%, 28.5% and

10.0% of people with type 2 diabetes respectively (Wang & Liu, 2003; Ying et al., 2003). One study further found that of the people adopting diet control, exercise and weight control, only 24.2% people adopted them simultaneously (Ying, Jiao et al. 2003).

What has to be acknowledged is that the situation of type 2 diabetes self-management in China is possibly overrated by some studies. In one study, self-reported diet control and exercise behaviours were 92.0% and

84.6%, respectively, but there was no correlation between blood glucose level and these factors according to further analysis in the same study. The author acknowledged this might be related to the misunderstandings of participants as well as the ambiguity of the questionnaire (Zhang & Zhu,

2003). One study reported a much higher figure than the other studies with the proportion of people paying attention to blood glucose reported as

91.92% (Gan and Ding 2003). The reason might be because some questions in the study were ambiguous. For example, “pay attention to blood glucose” may be interpreted differently, including measuring glucose regularly or just knowing blood glucose is an important index. Furthermore, this survey used simple Y/N questions, so it may have been hard for patients to select and

45 may have lead to inaccurate answers.

The age of the participants commonly ranged from 35 to 85 years in current studies in China. Since few studies provide specific figures for the older age group, it is hard to know the real situation of self-management behaviours among older people with type 2 diabetes. But it is widely accepted that older people with type 2 diabetes may experience greater barriers to practice self-management behaviours due to the impaired physical and cognitive functions (Sinclair, Girling et al. 2000), so it is likely the self-management behaviours in older population with type 2 diabetes in China are even worse.

2.3 Summary

Type 2 diabetes is a very common chronic disease, which is responsible for a tremendous public health burden. Fortunately, the progress of type 2 diabetes can be prevented or delayed by good blood glucose control. Type 2 diabetes self-management is a very important concept in managing blood glucose, as it encourages people to take responsibility for their own disease and adopt necessary behaviour change. However, the situation of self-management is poor among people with type 2 diabetes in China.

46 Chapter 3 Literature Review Type 2 Diabetes Self-Management Education

In this chapter, a review of the literature is conducted to gain an understanding of the situation of type 2 diabetes self-management education. The literature review begins with description of diabetes self-management education and its evolving trend. This is followed by a review of the literature on the application of Social Cognitive Theory in type 2 diabetes self-management education. Special consideration is given to two important concepts, self-efficacy and social support. Possible strategies to enhance them are also discussed. The final section addresses the situation of type 2 diabetes self-management education, implications and limitations, in China.

3.1 Type 2 diabetes self-management education 3.1.1 Role in type 2 diabetes management

Type 2 diabetes self-management means, to a large extent, individuals undertake the responsibility of day-to-day management by themselves, in collaboration with health professionals. In addition to usual health maintenance, people have to practise diet planning, physical activity,

47 blood glucose monitoring, foot checks, management of acute complications, and possible adjustments in other aspects of lifestyle.

Since type 2 diabetes self-management involves complex behaviour change and can be emotionally challenging, diabetes education is essential to assist patients to go through the transition. Diabetes education can provide patients with necessary knowledge, behavioural instruction, psychological support, and cognitive ability to mange the illness, and motivate them to assume responsibility for their disease.

A large body of literature exploring diabetes education and its effectiveness exists. It is difficult to make comparison between studies due to varying education types, different designs and inconsistent outcome measurements. Despite these drawbacks, results from systematic reviews and meta-analysis support the views that diabetes education plays a key role in improving diabetes outcomes (Fain, Nettles et al. 1999;

Norris, Engelgau et al. 2001; Norris, Lau et al. 2002). Self-management behaviours can be facilitated by diabetes education. Furthermore, diabetes education can improve the subsequent health outcomes such as metabolic control, psychological adjustment, and quality of life.

48 3.1.2 Trends in diabetes education

Early type 2 diabetes education was usually content-based and focused on knowledge/information delivery to the clients. The assumption was that people with type 2 diabetes do not know how to manage the illness because they lacked the necessary knowledge (Mickus and Quaile 1997).

Thus, increased knowledge would lead to enhancing practice. However, while improvement of knowledge is necessary, it is often insufficient for behaviour change and improved clinical outcomes (Brown 1990; Brown

1999). Meta-analysis also reported that diadactic education was one of the few types of interventions that did not constitute a significant mean effect size for metabolic outcomes (Brown 1990).

Since teaching diabetes knowledge alone is ineffective for diabetes self-management, researchers began to explore how diabetes education should be delivered, in order to produce better self-management behaviour, and other health outcomes. Diabetes education has evolved from didactic presentations to education employing a combination of behavioural interventions, skills training, and concepts from psychosocial theories.

From the late 1980s, the term “diabetes self-management education” was

49 used more than “diabetes education” in the literature to refer to diabetes education programs that have patient self-management behaviours as a central focus. Sometimes, the terms self-management education and diabetes education are used interchangeably since the main purpose of diabetes education is to teach diabetic patients to manage their disease on a daily basis.

According to the American Diabetes Association’s (ADA) definition, diabetes self-management education (DSME) is an interactive, collaborative, ongoing process involving the person with diabetes and the educator(s), to help the individual perforem self-management behaviours

(Mensing, Boucher et al. 2006). Diabetes self-management education

(DSME) has been recognised as an integral component of the medical care for people with type 2 diabetes.

3.1.3 Brief introduction of contemporary research

Since it is apparent now that improvement in knowledge alone cannot guarantee behaviour changes, current diabetes self-management education has incorporated other mediating factors, in addition to providing information.

50 Researchers have taken into account the social, emotional, cultural and psychological aspects of a person’s life to help him/her adjust health behaviours. There have been many theories/models developed to explain change of health behaviours and applied in diabetes education, such as the

Health Belief Model, the Locus of Control Theory, the Trans-theoretical

Model, the Self-Regulation Theory, and the Social Cognitive Theory.

The Health Belief Model proposed that in order for people to change their behaviours, the following requirements are necessary: people need a reason to comply with the change; they need to believe that they are subject to serious consequences; that the behaviour change can decrease the consequences; and that the benefits in making the change outweigh the costs of maintaining their status (Krichbaum, Aarestad et al. 2003).

This model was mostly used as a guide to examine the predictors of diabetes self-management behaviours, such as perceived barriers, perceived benefits and social support (Schwab, Meyer et al. 1994; Swift,

Armstrong et al. 1995; Pham, Fortin et al. 1996).

The Locus of Control (LOC) Theory is derived from Social Cognitive

Theory. Outcomes can be explained in terms of two factors: internal LOC or personal effect, and external LOC or environmental factors (Tillotson

51 and Smith 1996). A behaviour is more likely to persist if individuals have a belief that they possess some personal control over their health.

Conceptually, adoption and maintenance of behaviour would be likely for individuals with an internal LOC. People with internal LOC believe they possess some control over their environment, thus they would experience fewer perceived external barriers. This concept has been adapted and used specifically in diabetes (Peyrot and Rubin 1994; Surgenor, Horn et al.

2000).

The Trans-theoretical Model, which is also known as Stages of Change, is grounded in the notion that people are at different stages of motivational readiness for engaging in strategies to promote health and/or to cope with illness (Lichtenstein and Glasgow 1997). The stages of change include pre-contemplation, contemplation, preparation, action, and maintenance.

Individuals are hypothesised to move back and forth through these stages several times before developing a stable behavioural pattern. According to this dynamic model, there are different focuses at different stages, such as motivating, changing, or maintaining. This model has been used to assess the people’s readiness for behaviour change, as well as to help intervention design (Kasila, Poskiparta, Karhila, & Kettunen, 2003; Kim,

Hwang, & Yoo, 2004; Vallis et al., 2003)

The Self-Regulation Model assumes that an individual’s personal model of an illness (those factors that the persons themselves believe to be central to their experience of illness and management) is a proximal determinant of both the emotional and behavioural response that a person has to a health threat (Krichbaum, Aarestad et al. 2003). This model has been used to examine the relationships among cognitive representations of diabetes, diabetes-specific health behaviours, and quality of life

(Watkins, Connell et al. 2000; Jayne and Rankin 2001).

These theories/models have examined various factors in predicting self-management behaviours, including both internal and external factors, such as coping behaviours, personal perception and social-environmental factors.

Social Cognitive Theory incorporates many concepts encompassed in other models by postulating that the person, behaviour and environmental events interact in a triadic, reciprocal model. Social Cognitive Theory is one of the most often used theories in health education, since it helps to explain and predict behaviour change, as well as provide practical guidelines to design education interventions.

3.2 Social Cognitive Theory and type 2 diabetes self-management 3.2.1 Social Cognitive Theory and its application in health programs

According to Social Cognitive Theory, human behaviour is affected by personal factors, environmental influences, and attributes of the behaviour itself (Bandura 1977; Bandura 1986). The triadic causation reciprocal model is described in Section 1.2.1 in details.

Social Cognitive Theory explains how people acquire and maintain specific behaviours, as well as provides guidelines to design education interventions aimed at changing health behaviour. Social Cognitive

Theory has been widely applied to the studies of health behaviours. The areas include heart disease (Toobert, Strycker et al. 2002), chronic obstructive pulmonary disease (Lox and Freehill 1999), asthma (Zebracki and Drotar 2004), smoking cessation (Hingtgen 2003), and physical activity (Petosa, Hortz et al. 2005). Furthermore, based on the original theory, many new models/theories have also been developed and applied in health studies, such as Locus of Control Theory, and Self-Efficacy

Theory.

Social Cognitive Theory is a comprehensive theory that encompasses a large set of constructs. Self-efficacy may be the most important cognition among personal factors, while social support may be the most important social-environmental factor. In a systematic review of existing studies,

Glasgow and colleagues (Glasgow, Toobert et al. 2001) confirmed that the general psychosocial barriers that seem most strongly and consistently related to low levels of self-management in diabetes are low self-efficacy and low levels of social support. So, in the following sections, social support and self-efficacy, both of which are pivotal construct of SCT, are reviewed in detail.

3.2.2 Self-efficacy and type 2 diabetes self-management

3.2.2.1 Self-efficacy in health studies

Self-efficacy was originally defined by Bandura (1977) as a specific type of expectancy concerned with one’s ability to perform a specific behaviour or set of behaviours required to produce an outcome.

According to SCT, self-efficacy is the most predictive factor in the development and maintenance of a new behaviour. Self-efficacy affects the courses of action people choose to pursue, how much effort they put

55 forth in given endeavors, how long they will persevere in the face of obstacles and failures, their resilience to adversity, whether their thought patterns are self-hindering or self-aiding, how much stress and depression they experience in coping with taxing environmental demands, and the level of accomplishments they realize (Bandura 1991).

As an important factor in SCT, the value of self-efficacy in health education research has been increasingly emphasised and widely tested.

Self-efficacy has been successfully applied to understanding a wide variety of health behaviours and shown in multiple studies to have a significant influence on behavioural change. The areas that have been examined range from very common problems such as weight control

(Roach, Yadrick et al. 2003; Linde, Rothman et al. 2006), physical activity (Hagger, Chatzisarantis et al. 2001; Nishida, Suzuki et al. 2003;

Welk and Schaben 2004), alcoholism (Maisto, Connors et al. 2000;

Demmel and Beck 2004), and smoking cessation (Dornelas, Sampson,

Gray, Waters, & Thompson, 2000; Ham, 2007; Johnson, Budz, Mackay,

& Miller, 1999), to very specialised problems such as drug abuse (Thunga

2000; Pelissier and Jones 2006), chronic pain (Lin 1998; Barry, Guo et al.

2003), arthritis (Riemsma, Rasker et al. 1998; Brekke, Hjortdahl et al.

2001), safe sex behaviour (DiIorio, Dudley et al. 2000; Kerrigan, Ellen et

56 al. 2003), cancer adjustment (Lev, Paul et al. 1999; Gallagher, Parle et al.

2002; Hirai, Suzuki et al. 2002), multiple sclerosis (Stuifbergen, Becker et al. 2003; Riazi, Thompson et al. 2004; Motl, Snook et al. 2006) and recovery of cardiovascular function (Meland, Gunnar MAJland et al.

1999; Sanz and VillamarAn 2001).

Among the literature, many of the studies are cross-sectional, descriptive studies, indicating that stronger self-efficacy is associated with better adoption and maintenance of health behaviours. Furthermore, there have also been a large number of intervention studies based on self-efficacy to change target behaviour, since self-efficacy seems to be very effective to predict changes in many types of behaviours.

The current study used SCT to promote change in type 2 self-management behaviours and improve subsequent health outcomes.

Thus the following review will focus primarily on self-efficacy and its utilisation in research in relation to type 2 diabetes.

3.2.2.2.Self-efficacy & type 2 diabetes self-management : descriptive/correlational studies

The concept of self-efficacy has been frequently used in health education

57 for understanding and predicting self-management behaviours. In order to specifically understand the relationship between self-efficacy and type 2 diabetes self-management, the database of CINAHL, PRE-CINAHL,

MEDLINE, PsycARTICLES, PsycEXTRA and PsycINFO, were searched using “self-efficacy” and “diabetes” as key words. Further inspection was done by the researcher to check the relevance of the articles.

Results show that numerous descriptive, correlational studies have been done to examine the relationship specifically between self-efficacy and type 2 diabetes self-management behaviour. However, there have been very limited studies since the late twentieth century. This phenomenon is possibly due to increasing acknowledgement of the importance of self-efficacy, so there were not many studies trying to verify its role any more. Instead, latest studies commonly further explore variables associated with self-efficacy (Plotnikoff, Brez et al. 2000) or try to develop/adapt new models incorporating the self-efficacy concept

(Aljasem, Peyrot et al. 2001). Because of this, some research from the early years is also included in this review, in order to better understand the association between self-efficacy and self-management in type 2 diabetes.

58 Table 3.1 Self-efficacy & type 2 diabetes: descriptive/correlational studies

Author Sample Measurement of Self-management variables Major findings Description self-efficacy (Crabtree 143, Diabetes Self-Efficacy Diet, exercise, medication use, Higher self-efficacy predicted better 1986) aged 18-65, Scale (DSES) and general self-management diet, exercise, and general type 1 or type 2 activities self-management; No predicting effect for medication use (Kingery and 127, Self-Efficacy Scale Diet, exercise and glucose Higher self-efficacy predicted better Glasgow (McCaul, Glasgow et al. self-monitoring performance in all three fields; 1989) type 2 1987) Self-efficacy is a more potent predictor over a short term than a long term (Padgett 147, Crabtree’s DSES Complex regimen adherence, Higher self-efficacy predicted better 1991) aged 18 and over (Crabtree 1986) including diet, exercise, urine regimen adherence; mean age = 59 testing, foot care, oral medication type 2 and blood glucose self-monitoring (Hurley and 142, Insulin Management Self-management behaviours, Higher self-efficacy predicted better Shea 1992) aged 18-73, Diabetes Self-Efficacy including general management, overall self-management and type 1 or type 2, Scale (IMDSES), which diet and insulin administration performance in all three subscales. insulin-requiring was adapted from DSES (Crabtree 1986)

Table 3.1 Self-efficacy & type 2 diabetes: descriptive/correlational studies (continued) Author Sample Measurement of Self-management variables Major findings Description self-efficacy (Prendergast 75, Crabtree’s DSES Diet, exercise, and medication Higher self-efficacy predicted better 1993) aged 41-90 (Crabtree 1986) use diet, exercise; type 2 No predicting effect for medication use (Ludlow and 136, Adapted Hurley’s Self-management behaviours, Higher self-efficacy predicted better Gein 1995) aged 29-75, IMDSES (Hurley and including general overall self-management and type 2 Shea 1992) management, diet and insulin performance in all three subscales. administration (Skelly, 118, Self-developed self-management behaviours, Higher self-efficacy prediceted better Marshall et al. mean age=57 Self-Efficacy including diet, exercise, overall self-management, diet and 1995) type 2 Questionaire medication/insulin use, home exercise, glucose monitoring Self-efficacy cannot predict behaviour consistently over time (Bernal, 97, Spanish version of Self-management behaviours, Lowest self-efficacy was found in Woolley et al. aged 29-81, Hurley’s IMDSES including general behaviours that required problem 2000) type 1 or type (Hurley and Shea 1992) management, diet and insulin solving in changing circumstances; 2 insulin administration Attending diabetes classes and having requiring home nursing visits were associated with increased self-efficacy

Table 3.1 Self-efficacy & type 2 diabetes: descriptive/correlational studies (continued) Author Sample Measurement of Self-management variables Major findings Description self-efficacy (Aljasem, 309 Adapted Self-management behaviours, Self-efficacy composed of 5 factors, Peyrot et al. aged 24-88, Self-Efficacy for including common domain and Different factor predicted 2001) type 2 Diabetes Scale domain related to blood self-management behaviours in (Grossman, Brink et glucose management different aspects al. 1987)

(Williams and 94 Self-Efficacy Self-management behaviours, Higher self-efficacy predicted better Bond 2002) aged 22-86, Questionaire (Skelly, including diet, exercise, overall self-management, diet, mean age=62 Marshall et al. 1995) glucose monitoring and exercise, and glucose monitoring. type 1or type 2 medication use Relationship between medication use and self-efficacy was not mentioned. (Wen, Shepherd 138, Multidimensional Diet and exercise Higher self-efficacy predicted better et al. 2004) aged 55 and Diabetes diet and exercise over, Questionnaire type 2 (Talbot, Nouwen et al. 1997)

Table 3.1 Self-efficacy & type 2 diabetes: descriptive/correlational studies (continued) Author Sample Measurement of Self-management variables Major findings Description self-efficacy (Bean, Cundy et 279 Multidimensional Self-management behaviours Self-efficacy consistently related to al. 2007) aged 18-87 Diabetes including diet, exercise, blood self-management behaviours mean age = 59 Questionnaire glucose monitoring, and through different ethnic groups in type2 (Talbot, Nouwen et medication diet, exercise, and medication al. 1997) (Sousa, 141 Hurley’s IMDSES Self-management behaviours, Self-efficacy related to Zauszniewski et mean age =48.38 (Hurley and Shea including general self-management behaviours al. 2005) type1 or type 2 1992) management, diet and insulin administration (Sarkar, Fisher 408 Self-efficacy Diabetes routine in diet, self-efficacy related to four et al. 2006) mean age =58.1 scale(Skaff, Mullan exercise, blood glucose self-management domains, type 2 et al. 2003) monitoring, foot-care, and including diet, exercise, blood medication glucose monitoring , and foot-care (Chlebowy and 91 Self-efficacy Lifestyle/monitoring, and No relationship between Garvin 2006) aged 19-83 questionnaire treatment self-efficacy and diabetes mean age =55 (Glasgow, Toobert et self-management. type 2 al. 1989)

62 The detailed information about quantitative studies that were done in countries and areas except China is presented in Table 3.1. For these studies, all samples were convenience samples. Sample size ranged from 75 to 408, with a median of 136. Most studies encompassed young, middle and older populations, with participants’ ages ranging from eighteen years to sixty-five and over. Two studies focused exclusively on middle and older people (Prendergast 1993; Wen, Shepherd et al. 2004). Ten studies recruited type 2 diabetes exclusively, the others recruited both people with type 2 diabetes and people with type 1 diabetes. However, the detailed information about the proportion was not provided by these studies.

Among these studies, most of them mention SCT as a theoretical framework

(Padgett 1991; Hurley and Shea 1992; Skelly, Marshall et al. 1995; Bernal,

Woolley et al. 2000; Williams and Bond 2002; Wen, Shepherd et al. 2004;

Chlebowy and Garvin 2006; Sarkar, Fisher et al. 2006). In addition, the

Health Belief Model and Locus of Control were also selected as theoretical framework in a few studies.

Self-efficacy was measured by different scales in different studies. Among the various measures, the Diabetes Self-Efficacy Scale (DSES) (Crabtree

1986) and the Insulin Management Diabetes Self-Efficacy Scale (IMDSES)

(Hurley and Shea 1992) were used the most. The Diabetes Self-Efficacy

Scale (DSES) was developed to measure self-efficacy in managing diabetes through diet, exercise, oral medication use and insulin administration

(Crabtree 1986). The Insulin Management Diabetes Self-Efficacy Scale

(IMDSES) was developed to measure self-efficacy primarily in general management, diet and insulin administration (Hurley and Shea 1992). There are also items about foot care and exercise in IMDSES. Actually, the

IMDSES was also an adaptation of the DSES. Both of the scales have been used in different populations and have established good reliability and validity (Crabtree 1986; Padgett 1991; Hurley and Shea 1992; Prendergast

1993; Ludlow and Gein 1995; Bernal, Woolley et al. 2000; Sousa,

Zauszniewski et al. 2005).

Various self-management areas were studied, including diet, exercise, foot care, use of oral medication, use of insulin, blood glucose self-monitoring, urine testing, and general self-management activities. Aljasem and colleagues (2001) divided self-management behaviour into two major categories in their studies. One is traditional behaviours related to lifestyle

(diet, exercise and medication use), the other is behaviours related to active blood glucose management (blood glucose testing, adjusting insulin to avoid/correct hyperglycemia, and adjusting diet to avoid/correct

64 hypoglycemia). Chlebowy and Garvin (2006) measured adherence to diabetes regimen using the diabetes activities questionnaire (TDAQ )

(Hernandez 1998), which divided diabetes regimen into two subcategories: lifestyle monitoring and treatment.

In addition to quantitative studies done in foreign countries, there have been two correlation studies exploring self-efficacy in China. Wang translated and adapted the Insulin Management Diabetes Self-Efficacy Scale

(IMDSES) (Hurley and Shea 1992) as a Chinese Diabetes Self-Efficacy

Scale(C-DSES), then used it in Taiwan to understand self-management behaviours and related factors (Wang, Wang, & Lin, 1998)(Wang, Wang et al. 1998). A correlational study with a purposeful sample of 130 adults newly diagnosed with type 2 diabetes was conducted. The results indicated self-efficacy scores correlated significantly with self-management behaviours and self-efficacy could explain 74.0% of the variance of self-management behaviours according to a multiple stepwise regression analysis.

Following that, Wang applied the Chinese Diabetes Self-Efficacy Scale

(C-DSES) in Shanghai (Wang & Shiu, 2004). One hundred and thirty adult outpatients with type 2 diabetes completed the study. Data analysis

65 demonstrated a positive correlation between diabetes self-efficacy and diabetes self-management (ｒ=0.81, p<0.01).

In order to deeply examine the relationship between self-efficacy and type 2 diabetes self-management, some researchers have explored this area using qualitative methods. Savoca and Miller (2001) explored the beliefs and perspectives among people with type 2 diabetes mellitus about dietary requirements, and attitudes about self-management practices, through semi-structured, in-depth interviews. A convenience sample of forty-five adults diagnosed with type 2 diabetes for at least 1 year, attended the study.

Dietary self-efficacy, social support, and time management were identified as important factors that can influence dietary behaviours.

Zgibor and Simmons (2002) studied a multiethnic community to determine factors associated with blood glucose testing. Three hundred and twenty-three participants completed a qualitative study using open-ended questionnaires to determine barriers to diabetes care. Five barriers to diabetes care categories were generated, including internal psychological

(self-efficacy/health beliefs), external psychological (psychosocial environment), internal physical (comorbidities/side effects of treatment), external physical (finance/access to care), and educational (knowledge of

66 diabetes/services) barriers.

Shiu and Wong (2002) explored the perceptions and experience of Hong

Kong Chinese insulin-treated clients. Semi-structured interviews were conducted among 13 participants. Several categories were identified, and an overriding issue, a sense of losing control, emerged from the findings that described participants’ perceptions and experience. The researcher thought developing self-efficacy was a major health need for the participants, and suggested that Self-Efficacy Theory can be adopted as a conceptual framework to guiding nursing practice for enhancing clients’ capacity to exercise control over diabetes self-management.

Some implications can be drawn from these quantitative/qualitative studies, which are summarised in the following paragraphs. First of all, measures used to measure self-efficacy varied across studies, and the populations and samples were also different, therefore making direct comparison between studies difficult. But consensus can still be obtained across studies, that is, there is a strong relationship between self-efficacy and self-management behaviours, and individuals with high self-efficacy are more likely to carry out the self-management behaviour. The similar conclusion was also achieved from qualitative studies (Savoca and Miller 2001; Zgibor and

Simmons 2002). These findings emphasised the importance of incorporating the concept of self-efficacy in the design and implementation of diabetes self-management interventions. Furthermore, many researchers provided suggestions about self-efficacy enhancing strategies and called for experimental studies to determine which approaches are most successful at enhancing self-efficacy among diabetic patients (Hurley and Shea 1992;

Aljasem, Peyrot et al. 2001; Shiu and Wong 2002)

Secondly, diabetes self-management encompasses diverse areas. Though diabetes self-efficacy is a strong predictor of diabetes self-management behaviours, results from previous studies demonstrated that variations exist in the predicting effect of self-efficacy across different self-management behaviours. Diet and exercise are two areas that have been examined most.

Substantial and consistent evidence supported a strong association between self-efficacy and self-management behaviours in diet and exercise (Kingery and Glasgow 1989; Skelly, Marshall et al. 1995; Williams and Bond 2002;

Sarkar, Fisher et al. 2006; Bean, Cundy et al. 2007). However, there is contradiction in medication use. Several studies found no association between self-efficacy and self-management in this field (Crabtree 1986;

Prendergast 1993; Skelly, Marshall et al. 1995; Sousa, Zauszniewski et al.

2005), while others supported the association (Aljasem, Peyrot et al. 2001;

Bean, Cundy et al. 2007). As to the association between self-efficacy and blood glucose monitoring, many studies provided positive evidence

(Kingery and Glasgow 1989; Williams and Bond 2002; Sarkar, Fisher et al.

2006), while some produced different findings (Skelly, Marshall et al. 1995;

Bean, Cundy et al. 2007). Only a few studies explored the area of foot-care, which confirmed the positive association between self-efficacy and self-management behaviours (Padgett 1991; Sarkar, Fisher et al. 2006).

It appears that self-efficacy functions differently in different self-management areas. Many researchers provided possible explanations for this phenomenon. Aljasem and colleagues tested barriers to behaviours and self-efficacy concurrently in their study (Aljasem, Peyrot et al. 2001).

Self-efficacy did not have a significant relationship with behaviours when perceived barriers were low, but when barriers were high the relationship was stronger. Thus, self-efficacy is especially important when the task to be faced is more difficult. The researcher proposed that self-efficacy is crucial to taking on a challenging task and overcoming the obstacles to successful implementation of the behaviour. In addition, some researchers suggested that some other diabetes related factors, such as financial cost, adverse medication effects, assistance from family members should be taken into consideration. These existent barriers may supersede self-efficacy to some

69 extent (Sarkar, Fisher et al. 2006; Bean, Cundy et al. 2007). Therefore, the variation of the predicting effect of self-efficacy in different areas deserves more attention in future studies.

Thirdly, one point that deserves mention is that changes in self-efficacy over time are not clearly understood in these studies. Self-efficacy could predict self-management behaviour instantly or within a short term at around 3 months (Hurley & Shea, 1992; Wang & Shiu, 2004; Wang et al., 1998).

Several studies implied that the self-efficacy cannot predict behaviour consistently over time and the effect decreases after 5 ~ 6 months (Kingery and Glasgow 1989; Skelly, Marshall et al. 1995). Skelly and colleagues suggested that self-efficacy might be an important determinant at one point of time and other psychological variables become important at other points in time, and more psychological variables should be examined in future studies (Skelly, Marshall et al. 1995).

Fourthly, among these studies, the factors associated with self-efficacy were also identified. Self-efficacy seemed to be influenced by the demographic characteristics of younger age, and higher educational level (Padgett 1991;

Prendergast 1993). Among those people already having a high self-efficacy level, the room for further increase of self-efficacy may be little. Thus

70 interventions designed to promote self-efficacy may be more effective by targeting individual risk factors, e.g., low educational level or older population (Padgett 1991).

Finally, respondents gave low to average self-efficacy ratings on their ability to manage all aspects of their disease, but behaviours that required problem solving in changing circumstances received the lowest scores

(Bernal, Woolley et al. 2000). These behaviours included following diet away from home, following diet at parties and knowing what to do when ill.

It seems that special consideration should be given to these areas.

3.2.2.3 Self-efficacy & type 2 diabetes self-management: intervention studies

Although a large body of descriptive/correlational research confirmed the strong relationship between diabetes self-efficacy and diabetes self-management behaviours, there have been only a few intervention studies examining self-efficacy specifically in type 2 diabetes.

In order to understand the effectiveness of interventions based on self-efficacy to predict behaviour change and interventions designed with the intention of enhancing self-efficacy, the database of CINAHL,

PRE-CINAHL, MEDLINE, PsycARTICLES, PsycEXTRA and PsycINFO, were searched using “self-efficacy” and “diabetes” and

“intervention/education” as search terms. Further inspection was done by the researcher to check the relevance of the articles. Finally, eleven studies were identified, which were published after 1995 (with an exception of one article in 1992), written in English, and highly relevant to the review purpose. The detailed information about these studies is presented in Table

3.2.

For these studies, all samples were convenience samples. The sample size ranged from 11 to 410, with a median of 102. Several studies involved just

30~40 participants or even less (Anderson, Funnell et al. 1995; Corbett

2003; DeCoster and George 2005). The power of these studies may be compromised by the small sample size.

Table 3.2 Self-efficacy & type 2 diabetes: intervention studies

Author Sample Design & Intervention Main variables Major findings description (Glasgow, 102 (I-52, C-50) RCT Self-efficacy, Improvement in diet, Toobert et al. aged 60 and over I: 10 small-group sessions, Self-management in diet, exercise, glucose 1992) mean age = 67 focused on problem solving. exercise, and glucose testing, monitoring, and weight type 2 C: Delayed intervention HbA1c, control 6 months F/U Weight, No effect on self-efficacy, Diabetes specific QoL quality of life and HbA1c

(Anderson, 46 (I-22, C-23) RCT Self-efficacy, Improvement in Funnell et al. mean age = 50 I: 6 weekly group sessions, 2h Self-management self-efficacy, HbA1c, 1995) diabetes C: wait-list Attitudes toward diabetes, attitude, and 6 weeks F/U HbA1c, self-management

(Piette, 248 RCT Self-efficacy, Improvement in Weinberger et mean age = 54 I: biweekly automated telephone Depression, self-efficacy, days in bed, al. 2000) diabetes disease management calls + QoL, diabetes specific QoL depression and satisfaction telephone nurse follow-up Days in beds, with health care. C: usual care Satisfaction No effect on QoL or 1year F/U diabetes specific QoL

(Miller, 93 (I-46, C-47) RCT Self-efficacy, Improvement in Edwards et al. aged 65 and over I: 10 weekly group session, Outcome expectancy, self-efficacy, outcome 2002) type 2 1.5~2h Knowledge, expectancy, knowledge, and C: wait-list Decision-making decision-making

Table 3.2 self-efficacy & type 2 diabetes: intervention study (continued)

Author Sample Design & Intervention Main variables Major findings description (Temple 2003) 122 (I-61, C-61) Non-equivalent control group Self-efficacy Improvement in aged 24-88, design Self-management self-management (diet and type 1or type 2 I: ADA self-management Psychological adjustment exercise), overall diabetes program self-efficacy, and 5 weekly sessions psychological adjustment C: usual care

(Yip 2002) 122 (I1-40, I2-41, RCT Self-efficacy, Improvement in C-41) Multiple-group pretest posttest Self-management, self-efficacy in month 3, but mean age=56/55/ design Knowledge decrease in month 6, in 58 I-1: 4 small-group sessions, 2h, HbA1c, community group type 2 + telephone monitoring Improvement in between sessions self-management, but received in hospital, influenced by group and coordinated by a nursing time effect. specialist Improvement in knowledge I-2: 4 small-group sessions, 2h, No change in HbA1C +telephone monitoring between sessions received in community centerl, coordinated by acommunity nurse C: usual care 6 months from entry

Table 3.2 self-efficacy & type 2 diabetes: intervention study (continued)

Author Sample Design & Intervention Main variables Major findings description (Corbett 2003) 35 (I-19,C-16) RCT Self-efficacy in foot-care, Improvement in foot-care aged 38-91, I: foot-care assessment Self-management in practice, knowledge and mean age = 68 Individualised foot-care Foot-care self-efficacy (within) type 2 education Knowledge in foot-care, Improvement in foot-care C: foot-care assessment practice and knowledge 6 weeks F/U (between )

(Garvin, 410 Pre-post test design Self-efficacy, Improvement in knowledge, Cheadle et al. Complex intervention included Social support, self-efficacy, social support, 2004) diabetes support groups and education Diabetes knowledge, and self-management in diet classes Attitudes, and physical activity Health status

(DeCoster and 11 Pre-post design Self-management Improvement in all outcome George 2005) mean age =73.9 Weekly group meeting coordinated behaviours, variables type 1 or type 2 by professional, assisted by social Self-efficacy workers HbA1c, 6 months intervention Weight

Table 3.2 self-efficacy & type 2 diabetes: intervention study (continued)

Author Sample Design & Intervention Main variables Major findings description (Adolfsson, 88 (I-42, C-46) RCT Confidence in diabetes Improvement in confidence in Walker-Engstr mean age = I: 4-5 empowerment group knowledge, knowledge, om, Smide, & 62.4/63.7 education Self-efficacy, No change in other variables Wikblad, type 2 C: usual care Satisfaction with daily 2007) 1year F/U life, HbA1c, BMI

(Kuijer, De 125 RCT QoL, No change in these variables Ridder et al. I-26 diabetes/ 39 I:5 group sessions facilitated by Self-efficacy, But improvement in QoL 2007) asthma nurse Proactive coping, when analyzed using then-test C-16 diabetes/23 C: usual care Dispositional optimism, asthma 6 months F/U Disease-specific self-care mean age = Disease-specific 44.58/41.72/37.81/ self-efficacy 46.35 asthma or diabetes

Most studies recruited adult populations. Two studies focused exclusively on older people (Glasgow, Toobert et al. 1992; Miller, Edwards et al. 2002).

Five studies recruited type 2 diabetes exclusively, and others recruited both type 1 and type 2, or just mentioned participants as diabetic patients. In addition, one study included both diabetic and asthma patients.

These studies incorporated self-efficacy as one important factor in intervention design and/or evaluation. Being a widely accepted psychological factor, self-efficacy has been mentioned in many theories/models. Several studies used theories/models other than Social

Cognitive Theory (SCT) as a framework (Corbett 2003; Kuijer, De Ridder et al. 2007), or mixed other theories together with SCT (Miller, Edwards et al. 2002). There were also some studies without clear information about conceptual frameworks (Garvin, Cheadle et al. 2004; Adolfsson,

Walker-Engstr 枚 m et al. 2007). In addition, many studies did not provide detailed information about how the theory/model was incorporated into the whole program. Without support of a substantial theoretical framework, the effectiveness of patient education intervention is in doubt.

Although there were two studies using one group pretest posttest design

(Garvin, Cheadle et al. 2004), most of the remaining studies selected

77 control group designs. Since control group designs may be the most convincing kind of research design, the conclusions of the intervention effects can be taken seriously.

The intervention differed across studies. Most interventions were organised in small-group session format. These groups were led by trained lay leaders or health professionals/interdisciplinary health team

(Glasgow, Toobert et al. 1992; Garvin, Cheadle et al. 2004; DeCoster and

George 2005; Adolfsson, Walker-Engstr 枚 m et al. 2007; Kuijer, De

Ridder et al. 2007). The group session content included information/presentation on new topics (such as physical activity, healthy eating and psychological skills), personalised goal-setting, experience sharing and group exercise (such as walking) (Glasgow, Toobert et al.

1992; Anderson, Funnell et al. 1995; Miller, Edwards et al. 2002; Temple

2003; Garvin, Cheadle et al. 2004; DeCoster and George 2005; Adolfsson,

Walker-Engstr 枚 m et al. 2007; Kuijer, De Ridder et al. 2007).

Participants were encouraged to bring a spouse, family member or friend to the group sessions (Anderson, Funnell et al. 1995; Miller, Edwards et al. 2002).

In addition to face-to-face group sessions, alternatives included automated

78 telephone disease management (ATDM) call plus telephone counselling from a nurse (Piette, Weinberger et al. 2000); or video education sessions plus telephone monitoring from a nurse (Yip 2002). During the telephone encounters, nurses could ask the patient to report things related to self-management, as well as give feedback and provide reinforcement and support. Another alternative was delivering individualised education through home visits by nurses (Corbett 2003).

Many studies used measures that had been developed and acknowledged before, such as Diabetes Self-Efficacy Scale (Crabtree 1986) and Diabetes

Self-Efficacy Questionaire (Kingery and Glasgow 1989). Several studies used investigator-developed measures. Although the content validity and internal reliability were established, there were still some problems. For example, the content validity of a self-efficacy scale was reviewed by just

4-5 dieticians and nurse educators (Miller, Edwards et al. 2002). There were still studies that used self-developed measures without any validity or reliability information (Garvin, Cheadle et al. 2004). It is hard to decide the real effects of these measures. Furthermore, the capacity of making comparison between similar studies decreased.

Two studies evaluated the intervention instantly at the conclusion (Miller,

Edwards et al. 2002; Temple 2003). Most studies provided evaluation both instantly after the sessions and at follow-up. The follow-up periods ranged from several weeks to one year.

Implications from these intervention studies are discussed in following paragraphs. Firstly, it is interesting that several studies focused on the older population (Glasgow, Toobert et al. 1992; Miller, Edwards et al.

2002). Older people commonly have a long history of diabetes and experience a number of chronic diseases besides diabetes, so they are a relatively hard-to-be-change group (Glasgow, Toobert et al. 1992). The success of these studies demonstrated that education incorporating self-efficacy can improve health behaviours among older adults with type

2 diabetes.

Secondly, Glasgow and colleagues conducted focus groups and evaluation interviews with participants to identify barriers to self-management before the intervention. According to the interview findings, the lifestyle behaviours of diet and exercise were selected as the emphasis of intervention, rather than more medical aspects of diabetes regimens

(Glasgow, Toobert et al. 1992). This study achieved positive outcomes, as well as satisfaction among participants. This successful sample implied

80 needs assessment among the target population could provide clues for intervention design and increase the feasibility of the whole intervention.

Thirdly, among studies focusing on self-efficacy enhancement as an outcome measure, most of them achieved the proposed outcome and provided effective ways to boost self-efficacy (Anderson, Funnell et al.

1995; Miller, Edwards et al. 2002; Yip 2002). However, there were examples that were well-designed clinical trials but did not achieve the expected (Glasgow, Toobert et al. 1992; Corbett 2003; Adolfsson,

Walker-Engstr 枚 m et al. 2007; Kuijer, De Ridder et al. 2007). A possible explanation could be the “ceiling effect”, which means that the pretest self-efficacy was already very high and in the desired range, so there was not much room for further improvement. For example, for dietary efficacy,

50% of subjects had pretest efficacy scores of 90 or higher on the

100-point scale (Glasgow, Toobert et al. 1992). The percentage of people, who felt confident in self-management practice, was already 94%

(Corbett 2003). Therefore, that enhancement of self-efficacy would probably not be achieved in populations who already have high self-efficacy levels. In addition, some researchers suggested that

“response shift” might exist and disturb the effort to detect intervention effect (Glasgow, Toobert et al. 1992; Kuijer, De Ridder et al. 2007).

Response shift means that participants might only have some rough/modest internal standards of some measures, and they might be overly optimistic at the pre-measurement. However, after intervention, they achieved a clearer idea and their internal standards increased accordingly. Therefore, they might be more cautious at post-measurement.

Because of the instable standards levels, the intervention effects may not be detected (Kuijer, De Ridder et al. 2007). Finally, some researchers admitted that some barriers in the implementation process existed.

Although having received 2-day workshop training, the participating facilitators expressed that they needed more time to practice the new approach before they could say they had mastered it (Adolfsson,

Walker-Engstr 枚 m et al. 2007). This study provided insight into the complexity of implementation of a new intervention/ education program.

Confirming that care providers/facilitators really master and utilise new approach is especially important.

Fourthly, it has been widely recognised that self-efficacy is a strong predictor of behaviours, and many research incorporated self-efficacy as an important concept into the development of education programs. Since there is lack of consistency in the various types and duration of diabetes education programs, samples and measures, among the various studies, it

82 is difficult to make comparisons between them. Despite this, there is supporting evidence that diabetes education, incorporating the concept of self-efficacy, improves diabetes self-management in the field of diet, physical activity, weight control, glucose testing, and foot care (Glasgow,

Toobert et al. 1992; Corbett 2003; Temple 2003; Garvin, Cheadle et al.

2004). However, one study found, although participants showed improved self-efficacy in all the aspects of self-management and improved self-management in diet and exercise, the improvement did not extend to medication use and glucose testing (Temple 2003). The researcher suggested that the inconsistency in self-management across different areas was due to the complexity of the self-management activities themselves.

Medication use and blood glucose monitoring may require less complex changes, and be less difficult for patients to maintain. Thus, the effect of improved self-efficacy on self-management might not be revealed in these areas as those more difficult self-management ones, such a diet and exercise (Temple 2003).

Fifthly, the follow-up period varied across studies, and improved outcomes were demonstrated from instantly after the education, to several months after the intervention (Glasgow, Toobert et al. 1992; Anderson,

Funnell et al. 1995; Miller, Edwards et al. 2002; Corbett 2003; Garvin,

Cheadle et al. 2004). One study found that improvements in self-efficacy deteriorate over time (Yip 2002). The improvement of self-management in blood glucose testing was not maintained during a six month follow-up

(Glasgow, Toobert et al. 1992). Since, most research just tested short-term effects of intervention (Anderson, Funnell et al. 1995; Miller, Edwards et al. 2002; Corbett 2003; Temple 2003), changes in self-efficacy and subsequent behaviours over time are not clearly understood. According to a systematic literature review (Norris, Lau et al. 2002), the greatest effects of participatory educational programs in RCT studies have been shown in short-term follow-up. In long-term follow-up, the amount of contact time between the care provider and the patients has been shown to be the only significant predictors. Many researchers also suggest that people with diabetes may need periodic “booster” sessions to maintain self-management (Anderson, Funnell et al. 1995; Miller, Edwards et al.

2002; Corbett 2003).

Sixthly, other than self-efficacy and behaviour change, health outcomes, such as mental health and quality of life, were also measured among these studies. It appears that mental health and general health status can be improved (Piette, Weinberger et al. 2000; Garvin, Cheadle et al. 2004).

However, contradicting results exist in quality of life (QoL). Glasgow

84 used the diabetes-specific QoL scale, and did not find significant improvement. The researcher attributed this to the inappropriate measure, and suggested other quality of life measures, such as the SF-36, be used in future study (Glasgow, Toobert et al. 1992). However, Piette used both diabetes QoL scale and SF-36 in his study, and also found there were no differences in both generic quality of life and diabetes specific quality of life (Piette, Weinberger et al. 2000). Furthermore, according to a systematic review, using a generic measure of quality of life, such as the

SF-36, reported benefits following education/ self-management interventions less frequently than when a diabetes-specific quality of life measure was used. Generic measures have been suggested to be less sensitive than disease specific measures that include concepts closely aligned with concerns of diabetic patients (Faye 2000). Therefore, selection of appropriate measures of quality of life deserves more attention in future studies.

Finally, although a lot of studies were conducted in the community environment, little consideration was given to the effect of environmental factors. Yip identified the significant role of community environment in implementing a self-efficacy program (Yip 2002). When evaluating a telemedicine care for people with type 2 diabetes, two intervention groups

85 were used, which received the intervention delivered by a diabetes nurse specialist from a health center or a community nurse, respectively. Results indicated that the intervention group led by a community nurse significantly improved self-efficacy. In contrast, there was no change in the control group and another intervention group led by a diabetes nurse specialist. The researcher concluded that “the community nurse was able to respond to the patients’ environmental, social and personal levels to influence self-efficacy, as they were provided with resources to perform self-management practices in different situations resulting in positive experiences enhancing self-efficacy” (Yip, 2002, p149).

3.2.2.4 Strategies for increasing self-efficacy

Self-efficacy is important to initiate and to maintain health behaviour change, and self-efficacy is amenable to intervention. Sources to influence self-efficacy include: performance accomplishment, vicarious experience, verbal persuasion, and physiological feedback (Bandura

1997). There are a variety of strategies to increase self-efficacy from these sources, including coping skills training, demonstration and rehearsal, and setting goals. Although the strategies related to each source are discussed separately in the following paragraphs, any one strategy may function from different angles at different times and it is hard to clearly categorise

86 the strategies. Furthermore, these strategies should be used in combination because interventions incorporating all sources of self-efficacy are more likely to be efficacious (Bandura 1986; Bandura

1997).

Performance accomplishment provides the most influential source of efficacy information (Bandura 1997). Actually performing an activity strengthens self-efficacy, while regular failure decreases self-efficacy. In order to effectively enhance self-efficacy, it is necessary to provide people with some successful experiences. This can be achieved by helping people to establish and complete goals. Goals should be realistic and achievable, and at the same time, a bit challenging. These goals should be set in the form of a contract with patients (van de Laar and van der Bijl

2001). Sometimes a task is complicated, and it may appear daunting to patients at the beginning. It will be more practical to split the task into small components, which are relatively easy to perform. Rosenstock

(1985) suggested that simplification gives a person more potential for being successful, which, in turn, improves self-efficacy. Dye, Haley-Zitlin and Willoughby (2003) also suggested that interventions which address self-efficacy should approach behavioural change in small steps to ensure success. So educators must be patient to help people practise every small

87 part, become confident with that part, progressively put all parts together and build self-efficacy about the entire task.

An important basis for self-efficacy is the person’s attribution of previous successes or failures. A person, who attributes success to a stable cause

(e.g. capacities), has a higher expectation of success in a similar new task, while a person who attributes success to a unstable cause (e.g. luck) will not have a higher expectation of success. Self-efficacy can be enhanced by attributing failure to unstable causes and attributing success to stable causes. So it is not enough to just help patients experience a success, it is still important to interpret it as a result of the patients’ own exertions.

Patients need to get immediate feedback on their performance (van de

Laar and van der Bijl 2001).

Rehearsal and role-playing are often used in education programs. They provide a good opportunity for patients to practise behaviours that are newly learned. Furthermore, participants can get feedback from educators and group members. This practice and accomplishment reinforce education effects as well as enhance self-efficacy.

Vicarious experiences mean that an individual is capable of learning

88 through the experiences of others. Observing others succeed or fail at a behaviour will influence an individual’s self-efficacy (Bandura 1997).

The most often used strategy is “modeling”. It is important that the people serving as models are similar to the observers. Similarity includes two aspects: characteristics such as gender, age, ethnic background, socio-economic status or educational level; and shared experiences which are relevant to the issue. The best model is a person who has problems, who fights to surmount them and who adapts from day to day (van de

Laar and van der Bijl 2001). In contrast, those who succeed instantly without problems may be too perfect to be a model, because they may intimidate others. Demonstration is also very useful strategy.

Demonstration of specific skills, such as measuring blood glucose, by educators will give the patients a basic impression of this practice. It will be more effective if the demonstration is provided slowly and repeatedly, with detailed explanation.

Verbal persuasion refers to verbally telling an individual that he/she possesses the capability to master the given behaviour (Bandura 1997).

Verbal persuasion is particularly appropriate when the individual is engaging in a new behaviour and needs feedback from someone with more experience. Verbal persuasion can only produce satisfying outcomes

89 when the persuader is regarded as a reliable source. Of critical importance are the expertise, credibility, trustworthiness, and prestige of the person doing the persuasion (van der Bijl and Shortridge-Baggett 2001). The persuader him/herself must have knowledge in the field, be trusted by the patients and be friendly.

Individuals rely in part on information from their physiological/affective state to judge their abilities (Bandura 1997). Persons who feel stressed will judge their self-efficacy more negatively than persons who feel relaxed. Other negative moods such as anxiety can also decrease self-efficacy. In addition, individuals also evaluate their physiological state, and if aversive, they may have a low self-efficacy, and avoid performing a particular behaviour. What people believe about their illness and how they interpret their symptoms influences their self-efficacy to deal with the disease (van der Bijl and Shortridge-Baggett 2001).

Self-efficacy can be increased by improving the patients’ physical situation, reducing stress, and decreasing negative emotions, as well as by correcting false interpretations of the patients’ physical situation (Allen,

2004). Relaxation exercise, coping skills for negative emotions, stress management, and problem solving are recommended to enhance self-efficacy (Rubin, Peyrot et al. 1993; Jacob 2002).

3.2.3 Social support and type 2 diabetes self-management

3.2.3.1 Social support in health studies

While self-efficacy is an important cognitive factor in Social Cognitive

Theory (SCT), another important construct is drawn from the environmental factors in SCT, this is social support. According to SCT, behaviour is determined by factors internal to the person and by the environment and situation, which refers to all factors external to the person. Social support is an important one among all the social environmental factors. Support from others can help people boost and maintain their confidence, enthusiasm and motivation. Social support appears to be an important determinant of success in changing health behaviours.

Research approaches into social support have varied considerably, focusing on different conceptulisations of social support and different health problems. Social support has been defined in different ways, from functional or structural aspects. As to functional aspects, there are various definitions of domains, such as instrumental support, appraisal support, according to different researchers (Hupcey 1998; Hutchison 1999). In the

91 current study, social support is emphasised from functional aspects, comprised of tangible support, affection, positive interaction, emotional support, and informational support (Sherbourne and Stewart 1991).

Despite various conceptualisations of social support, studies have explored the relationship between social support and health behaviours.

The areas having been studied varied, such as smoking cessation (Nollen,

Catley et al. 2005; May, West et al. 2006), parenting (Barnet, Duggan et al.

2002; Ceballo and McLoyd 2002), breast cancer (Simpson, Carlson et al.

2002; Sammarco 2003), HIV/AIDS(Turner-Cobb, Gore-Felton et al. 2002;

Gaede, Majeke et al. 2006), heart disease (Chesney and Darbes 1998;

Hughes, Tomlinson et al. 2004), and rheumatoid arthritis (Jakobsson and

Hallberg 2002; Evers, Kraaimaat et al. 2003). It is believed that social support is especially important to help people cope with chronic diseases and reinforces compliant behaviour (Lubkin and Larsen 2002).

As to diabetes, social support has been mostly examined in adolescents with type 1 diabetes (Hanna and Guthrie 2001; Pendley, Kasmen et al.

2002), but there has been research examining the effect of social support in type 2 diabetes. The focus of the following literature review is on studies examining the relationship between social support and

92 self-management behaviours among people with type 2 diabetes, including descriptive/correlational studies and intervention studies. Those studies exploring the possible ways to enhance social support are also discussed.

3.2.3.2. Social support & type 2 diabetes: descriptive/correlational studies

In order to understand the relationship between social support and type 2 diabetes self-management, the database of CINAHL, PRE-CINAHL,

MEDLINE, PsycEXTRA, PsycEXTRA and PsycINFO, were searched using “social support” and “diabetes” as key words. Further inspection was done by the researcher to check the relevance of the articles. Finally, eight quantitative studies and five qualitative studies were identified, which were published after 1995, written in English, and highly relevant to the review purpose.

The detailed information about the quantitative studies is presented in

Table 3.3. For these studies, all samples were convenience samples, typically of outpatient populations. Sample size ranged from 46 to 213, with a median of 95. Though most studies focused on the adult population, the age ranges were still quite large. Six studies had samples that

93 encompassed young, middle and older adult hood. One study focused exclusively on late-middle and older people (aged 55 years and over)

(Wen, Shepherd et al. 2004). One study did not provide details about the samples’ age range (Toljamo and Hentinen 2001). Among those studies providing figures about samples’ mean age, the mean age ranged from 40 to 64.

Only four studies recruited people with type 2 diabetes exclusively. The others included both type 1 and type 2 diabetes, but only one study specified the proportion of the types. Type 2 diabetes accounted for

84.4% of the whole sample in this study (Plotnikoff, Brez et al. 2000).

These studies were engaged in exploring the relationship between social support and self-management; however, few presented a clear theoretical framework. Theories/models that were mentioned include Social Cognitive

Theory (Williams and Bond 2002; Wen, Shepherd et al. 2004; Chlebowy and Garvin 2006) and Trans-theoretical Model (Plotnikoff, Brez et al.

2000). The other researchers seemed to base their work on the review of the previous empirical evidence in this field.

Table3.3 Social support & type 2 diabetes: descriptive/correlational studies

Author Sample Measurement of social Self-management variables Major findings Description support

(Garay-Sevilla, 200, Diabetes Social Support Diet Higher social support was associated Nava et al. aged 19-85, Questionnaire Medication use with better adherence to diet and 1995) mean age =58.8 (Ruggiero, Spirito et al. medication use; type 2 1990) Family structure and family functioning factors seemed to have no or just little association with adherence (Plotnikoff, 46, Self-developed scale Exercise social support were significant higher Brez et al. 2000) aged 18-65 for those people in the action stage mean age=43 than those in the pre-action stages type 1 or type2

(Toljamo and 213 Self-developed scale Self-management behaviours, Higher social support was associated Hentinen 2001) mean age=40, including insulin treatment, with good self-care, while no support insulin-requiring diet, exercise, blood glucose was associated with neglect of self-monitoring self-care.

(Williams and 94 Diabetes Family Self-management behaviours, Higher social support was associated Bond 2002) aged 22-86, Behaviour Checklist including diet, exercise, with better self-management in mean age=62 (Schafer, McCaul et al. glucose monitoring and exercise and diet, but this relationship type 1 or type 2 1986) medication use was mediated by self-efficacy.

Table3.3 Social support & type 2 diabetes: descriptive/correlational studies (cont)

Author Sample Measurement of social Self-management variables Major findings Description support

(Gleeson-Kreig, 95, Adaptation of Personal Referred to corresponding No relationship between social Bernal et al. aged 29-79 Resource Questionaire self-efficacy support and diabetes 2002) insulin-requiring (Weinert and Brandt self-management. 1987) (Wen, Shepherd 138, Diabetes Family Diet and exercise Higher social support was associated et al. 2004) aged 55 and over, Behaviour Checklist with better self-management in diet mean age =64 (Glasgow and Toobert and exercise type 2 1988)

(Whittemore, 53, Diabetes Diet and exercise Higher social support was associated Melkus et al. aged 30-70, Self-management with better self-management in diet, 2005) mean age=57.6 Assessment Tool but no significant relation with type 2 (Mulcahy, Peeples et al. exercise 2000)

(Chlebowy and 91 Social support Lifestyle/monitoring, and No relationship between social Garvin 2006) aged 19-83 questionnaire (Sarason, treatment support and diabetes mean age =55 Levine et al. 1983) self-management. type 2

96 Social support was conceptualised in a variety of ways. Among these studies, perceived social support was the most commonly assessed dimension (Garay-Sevilla, Nava et al. 1995; Plotnikoff, Brez et al. 2000;

Toljamo and Hentinen 2001; Whittemore, Melkus et al. 2005). Other dimensions that were evaluated include satisfaction with support, structure of the network, and level of need (Gleeson-Kreig, Bernal et al. 2002;

Chlebowy and Garvin 2006). In addition, two studies measured social support by assessing the frequency of both supportive and unsupportive family behaviours related to diabetes self-management (Williams and Bond

2002; Wen, Shepherd et al. 2004).

Two studies measured social support exclusively from family. One study assessed social support from both family and friends (Garay-Sevilla, Nava et al. 1995). One study included social support from family, friends and health professionals (Whittemore, Melkus et al. 2005). One study assessed social support from family, friends, health professionals, and peers. In addition, this study defined social support from “people closest to you”.

However, what “the closest people” really means is not clear (Toljamo and

Hentinen 2001). One study assessed support from individual to whom they can rely on in specific situation, therefore, social support might came from various sources(Chlebowy and Garvin 2006).

97 .

The measurement of social support is an area of concern. The measurement varied across studies and there seems to be no widely accepted scale in this area. Most studies used previously developed scales, including the Diabetes

Social Support Questionnaire (Ruggiero, Spirito et al. 1990), the Diabetes

Family Behaviour Checklist (Schafer, McCaul et al. 1986), the Diabetes

Family Behaviour Checklist (Glasgow and Toobert 1988), the Personal

Resource Questionnaire (Weinert and Brandt 1987) and the Social Support

Questionnaire(Sarason, Levine et al. 1983). Whittemore and colleagues used a three-item subscale in the Diabetes Self-management Assessment

Tool (Mulcahy, Peeples et al. 2000) to measure social support together with self-efficacy (Whittemore, Melkus et al. 2005). Since the social support and self-efficacy were measured together, their effects could not be identified separately in this study. Furthermore, this subscale contains just three items, so the effectiveness of judging the real level of social support from such few items is in doubt.

Two studies used self-developed scales (Plotnikoff, Brez et al. 2000;

Toljamo and Hentinen 2001). Toljamo and Hentinen (2001) stated that the

13-item scale was developed mostly according to House’s (1987) definition of social support, including areas of emotional, instrumental, informational

98 support, financial support, and peer support. In Plotnikoff and colleague’s study, social support was measured by just one item in a self-developed questionnaire (Plotnikoff, Brez et al. 2000). Given the multidimensional nature of social support, it is questionable whether this item can adequately represent this concept.

In addition to quantitative studies, there were some qualitative studies in these areas. The qualitative studies provided strong evidence that social support is perceived to positively influence self-management. Furthermore, qualitative studies are helpful to understand which kind of support, instrumental or emotional or others, and which sources, family or professional or others, are most important.

Belgrave and Lewis (1994) examined the role of social support in compliance and other health behaviours of African Americans with diabetes.

Data were collected through interviews with 78 adult patients. In this study, social support was defined as emotional, informational, and instrumental support from health professionals, family, friends and community. Social support was associated with adherence to health activities. Furthermore, among all the health activities, including diet, exercise, regular blood pressure test, medication use and foot care, social support was found to have

99 the greatest impact on diet and foot care.

Cheng and Boey (2000) examined the effects of social support and coping on the adaptation to type 2 diabetes in elderly Chinese patients in Hong

Kong. Data were collected in face-to-face interviews with 200 outpatients

(aged 60 and over) with type 2 diabetes. The results indicate that general social support appears to be more beneficial than diabetic-specific support, and support received from friends plays a more significant role in the adaptation process than does the support received from family network.

Savoca and Miller (2001) examined the beliefs and perspectives among

Caucasian people with type 2 diabetes about dietary requirements, food selection and eating patterns, and attitudes about self-management practices.

Semistructured in-depth interviews were carried out. The results indicated eating patterns were influenced by participants’ knowledge of diabetes management. In addition, dietary self-efficacy, social support, and time management were identified as mediating factors. The key source of social support for participants was spousal support, and participants’ relationship with their spouses appeared to have a major impact on food selection and meal planning.

100 In order to explore knowledge and beliefs regarding diabetes, interviews were conducted with 37 adults with type 2 diabetes in a rural area of

Mexico (Valenzuela, Mata et al. 2003). The participants were all aged 40 years and over. The researcher found the central role of family, friends, and neighbors as primary sources of social support when dealing with type 2 diabetes. In contrast, doctors appear to be a less important source of support, having relatively little impact.

Satterfield and colleagues (2003) asked people and communities affected by diabetes for their views about diabetes prevention. In total, 235 adults at risk for type 2 diabetes and community leaders from five racial and ethnic groups participated in 27 focus groups, from five geographic locations across the Americas. Many themes emerged. Relationships with others appeared to be the strongest reinforcers for adapting a healthy lifestyle.

Exercise support groups and buddies increased social commitment and obligation to the activity and provided a sense of belonging, companionship, and entertainment.

Implications from these descriptive/correlational studies are discussed in following paragraphs. First of all, social support can be conceptualised in both structural (e.g. marital status, living arrangement) and functional

101 aspects (e.g., instrumental, emotional). Sometimes, these two aspects were included in one study. Structural social support seems weaker in predicting self-management and health outcomes than functional social support

(Garay-Sevilla, Nava et al. 1995). Furthermore, among functional support, informational and emotional support seem to be more significant (Belgrave and Lewis 1994; Toljamo and Hentinen 2001; Satterfield, Lofton et al.

2003). Suggestion from Connell also confirmed that adults with diabetes do not want a lot of help with tangible aspects, but benefit more from the acceptance, reassurance, and encouragement (Connell, 1991).

Secondly, most of these studies assessed disease-specific support

(Garay-Sevilla et al., 1995; Wen et al., 2004; Whittemore et al., 2005;

Williams & Bond, 2002) rather than general support (Gleeson-Kreig, Bernal et al. 2002). It appears that both have been found to be associated with behaviour and subsequent health outcomes. According to an earlier study,

Glasgow and Toobert (1988) found that diabetes-specific support was a stronger predictor of health behaviour than general support. But results from qualitative studies show older people prefer general social support (Cheng and Boey 2000). There is no conclusion about which one is a better facilitator. Further exploration is needed in this field.

102 Thirdly, most studies focus on support from families and friends. One study specifically explored peer support (Toljamo and Hentinen 2001). Social support was measured by a self-developed scale including areas of emotional, instrumental, informational support, financial support and peer support in this study. Results showed that though higher social support is associated with better self-management behaviour, there was no positive association between the subscore of peer support and behaviour. However, peer support refers to support from a specific source rather than a functional aspect of support, thus it is not appropriate to measure it together with other functional aspects, such as emotional support. Furthermore, the expression of some items in the social support questionnaire was not very clear. For example, “I have someone close to me who likes me and will take care of me “ referred to emotional support from family and friends according to the researcher’s intention, but this item could also be understood as support from a peer. Thus the negative conclusion about social support and self-management from this study is possibly due to the limitation of the measurement.

Two quantitative studies included health professionals as a source of social support (Toljamo & Hentinen, 2001; Whittemore et al., 2005). In addition, the role of the health professionals in providing social support was also

103 explored in a qualitative study. However, it appeared that they are not good sources of social support (Valenzuela, Mata et al. 2003).

Fourthly, although there are big differences in conceptualising and measuring social support across studies, it is still safe to conclude that social support is associated with better self-management (Garay-Sevilla et al.,

1995; Plotnikoff et al., 2000; Wen et al., 2004; Whittemore et al., 2005).

Gleeson-Kreig and colleagues suggested that there was not a strong relationship between social support and diabetes self-management

(Gleeson-Kreig, Bernal et al. 2002). However, diabetes self-management was represented by diabetes self-efficacy, and measured by the Insulin

Management Diabetes Self-Efficacy Scale (Hurley and Shea 1992) in this study. Thus this negative result may be due to the inappropriate measurement.

Finally, Gleeson-Kreig and colleagues (2002) found that compared to younger people, older people always had a limited supply of friends and they relied heavily on family members. In another qualitative study in Hong

Kong, the older population perceived that support from friends played a more significant role in the adaptation process than did the support received from family networks (Cheng and Boey 2000). So there is a gap; the older

104 population really wants and appreciates support from friends, but they have fewer friends who could be counted on. The older people are more vulnerable to alterations in social support availability because of many life changes associated with ageing, such as retirement, chronic disabilities, and loss of spouse. Furthermore, family sizes are shrinking and responsibilities outside of the home are increasing, thus nowadays there maybe fewer family members available to provide support for those aged people. Many researchers have identified that social support is particularly important to the health of the elderly (Seeman, 2000; Wang et al., 2002). Helping older people rebuild their own social network outside the family may be an effective way to reinforce social support, which should be taken into consideration when planning social support interventions.

3.2.3.3. Social support & type 2 diabetes: intervention studies

Since social support has been identified as a predicting factor of self-management behaviour in people with type 2 diabetes, an increasing number of diabetes education programs have incorporated this factor, such as encouraging significant others to attend the education program together with the patients. Unfortunately, only a limited number of studies focused on social support or viewed social support as a real intervention and evaluated its effect seriously.

105

In order to understand the effectiveness of interventions based on social support to predict behaviour change and interventions designed with the intention of enhancing social support, the database of CINAHL,

PRE-CINAHL, MEDLINE, PsycARTICLES, PsycEXTRA and PsycINFO, were searched using “social support” and “diabetes” and

“intervention/education” as search terms. Further inspection was done by the researcher to check the relevance of the articles. Finally, fifteen articles were identified, which were published after 1995, written in English, and highly relevant to the review purpose. Since two of them used the same intervention, sample and data, they will be viewed as one study and discussed together. The detailed information about these studies is presented in Table 3.4.

For these studies, all samples were convenience samples. The sample size ranged from 9 to 320, with a median of 50. Eight studies recruited people with type 2 diabetes exclusively. Five studies included both type 1 and type

2 diabetes. In addition, one study included people with diabetes as well as people with hypertension (Tanner and Feldman 1998).

106

Table3.4 Social support & type 2 diabetes: intervention studies

Author Sample Design & Intervention Main variables Major findings Description

Improvement in Pre, post- test design 11, Confidant Support, but (Oren, I: weekly 90 min support group activities * 10 aged 24-71, Social support no change in Affective Carella et al. weeks mean age =41.5 HbA1c, Support 1996) 7 weeks F/U type 1or type 2 No significant change

in HbA1c. RCT I-1:social support counseling, Improvement in 200(I-150,C-50) I-2:social support counseling + reminder postcard appointmen (Tanner and Percentage of I-3:social support counseling + reminder postcard t keeping, Feldman appointment most diabetes + call No difference among 1998) keeping. + hypertension 3 months intervention the 3 intervention C: none groups.

Post-test Benefits in receiving Participants (Morris 32 I: a diabetes educator facilitated support group information, meeting perception of 1998) type 1 or type 2 2 weeks after first meeting others, and helping benefits others RCT Social support, 30(I-15,C-15), I: 5-month computer based self-help support and (Smith and Psychological aged 35-69 educational group No definite results Weinert adaptation mean age =46.7 C: usual care 2000) Quality of life, type 1 or type 2 5 months F/U HbA1c,

107

Table3.4 Social support & type 2 diabetes: intervention studies (continued)

Author Sample Design & Intervention Main variables Major findings Description Post-test FGP: Improvement in (Joseph, I: peer coach including a initial 1-h face-to-face behaviour change 11 Griffin et al. meeting + related to diet, type 1 or type 2 2001) 8 weekly 10-15 min talking exercise, and blood glucose monitoring, Improvement in RCT knowledge, behaviour, Diabetes 112 (I-56, C-56) I-group consultations with doctors every 3 months quality of life, BMI, (Trento, knowledge, mean age=60 C-individual visits+ standard diabetes education HDL, TG, Passera et Health behaviour, type 2 every 3 months HbA1c level al. 2001) quality of life, BMI, 2 year intervention maintained stable in HbA1c, HDL, TG I-group, while increased in C-group (Gilliland, 104(I1-32, Non-equivalent control design HbA1c, HbA1c level Azen et al. I2-39, C-33) I-1: education and social support in a family and Weight maintained in the 2002) mean age=60 friend format intervention group, type 2 I-2: education and social support in one-on-one while that in control appointment group got worse. Intervention held 6wks apart and over 10 months weight decreased in C: usual care the combined 1year F/U intervention groups, while that in control group increased

108

Table3.4 Social support & type 2 diabetes: intervention studies (continued)

Author Sample Design & Intervention Main variables Major findings Description (Keyserling, 200.(I1-67, RCT Physical activity Improvement in Samuel-Hod I2-66, C-67) I-1: 4 monthly physical activity counseling + 3 physical activity ge et al. aged 40 and peer group sessions + 12 monthly phone calls among both 2002) over from a peer counselor intervention groups at mean age=59 I-2: 4 monthly physical activity counseling month 6. type 2 C: mailed educational pamphlets The improvement 1year F/U maintained at month 12 among group 1 (McKay, 160, (40 / RCT Social support, Improvement in social Glasgow et group) I-1: computer-based information + lifestyle coach Diet support among al. 2002) aged 40-75, I-2: computer-based information + peer support members in group 2, mean age=59 group 3. type 2 I-3: computer-based information + lifestyle coach Improvement in diet + peer support group across all intervention C: information only. group. 3 month intervention (Glasgow, 320 RCT Social support, Improvement in social Boles et al. mean age =59 I-1: tailored self-management training; depression, support, depression, 2003) type 2 professional coach + information Diet, diet, physical activity, I-2: peer support + information physical activity, other behaviours, lipid C: information only other behaviors, No differences across 10 months HbA1c, Lipid groups

109

Table3.4 Social support & type 2 diabetes: intervention studies (continued)

Author Sample Design & Intervention Main variables Major findings Description (Kotani and 15(I-9,C-6) Non-equivalent control design diet and exercise, Improvement in diet, Sakane older people, I-monthly self-help group meeting HbA1c, exercise, and HbA1c 2004) mean age =68.2 C-usual type 2 1 year intervention

(Tang, 62 Pre-post design Self-management Improvement in diet, Gillard et al. aged 36-72 Weekly patient-centered group education session behaviour, exercise, BGL test, 2005) mean age=65 6 months intervention Self-management and foot-care type 2 difficulty, behaviors, perceived Quality of life, difficulty in diet and HbA1c, Lipid , exercise, perceived HBP, BMI quality of life, lipid, and BMI No improvement in BP and HbA1c (Heisler and 38, Pre-post design Self-management Improvement in Piette 2005) men Interactive voice response (IVR) –based platform behaviours, self-management mean age=63.6 to facilitate peer support Self-efficacy, behaviour and type 2 Contact matched partner weekly using free IVR Depression self-efficacy calling line No difference in 6 week intervention depression

(DeCoster 11 Pre-post design Self-management Improvement in all and George mean age =73.9 Weekly group meeting coordinated by behaviours, outcome variables 2005) type 1 or type 2 professional, assisted by social workers Self-efficacy 6 months intervention HbA1c,, Weight

110 Three studies did not provide information on age. For the others, the mean age of the participants ranged from 41.5 to 73.9 years. Two studies focused exclusively on older people (Kotani and Sakane 2004; DeCoster and George 2005), and two studies focused on people aged 40 years and over (Barrera Jr., Glasgow et al. 2002; Keyserling, Samuel-Hodge et al.

2002; McKay, Glasgow et al. 2002).

One common limitation in these studies was lack of a clear theoretical framework. It appeared that researchers based their studies on some previous evidence rather than a systematic theory/model. Theories/models that were mentioned include the Self-Care Theory (Morris 1998),

Self-Efficacy Theory (Glasgow, Boles et al. 2003), and the Social

Cognitive Theory (Gilliland, Azen et al. 2002). McKay, Glasgow and other colleagues conceptualised diabetes education as serving three important functions: increasing knowledge, providing skills training and enhancing social support, and used this conceptual model to guide their intervention design and implementation (McKay, Glasgow et al. 2002).

There were two studies which used post test evaluation only (Morris 1998;

Joseph, Griffin et al. 2001), and four studies used pretest posttest design

(Oren, Carella et al. 1996; DeCoster and George 2005; Heisler and Piette

111 2005; Tang, Gillard et al. 2005). The other studies all selected control group designs: 6 for RCT and 2 for non-equivalent control design. Since control group designs may be the most convincing kind of research design, the conclusions of the intervention effects can be taken seriously.

The interventions differentiated across studies. Four studies tested various options concurrently. Three studies used computer-based social support intervention, including related information and organised peer group on the internet (Smith and Weinert 2000; Barrera Jr., Glasgow et al. 2002;

McKay, Glasgow et al. 2002; Glasgow, Boles et al. 2003). Two studies used social support counseling. One study organised the counseling sessions into four phases, including welcome and introduction, interactive learning, discussion, and conclusion and follow-up homework (Tang et al.,

2005). Another one did not provide the main structure/content of the counseling (Tanner and Feldman 1998).

One study explored the utilisation of peer coaching (Joseph, Griffin et al.

2001). Coaches who were known to be successfully managing their diabetes were paired with individuals who were struggling with behaviour change associated with managing diabetes. The pairs were matched according to age, gender, and physical appearance to facilitate mutual

112 communication. Coaches met initially with participants in a face-to-face meeting for 1 hour and talked with them once a week for 10 to 15 minutes for the next 8 weeks. Their conversations focused on the person's problems and efforts at behaviour change. In addition, Heisler & Piette matched participants on the basis of their diabetes-related self-management needs(Heisler and Piette 2005). Participants were asked to contact their partner weekly through an interactive voice response (IVR) calling line.

According to these studies, a social support group is the most popular intervention, and was used in five studies. Components of the support group involved reducing feelings of isolation, sharing concerns and goals with others, learning and gaining motivation, and joining physical/diet activities as a group (DeCoster & George, 2005; Gilliland et al., 2002;

Morris, 1998; Oren et al., 1996; Tang et al., 2005). Commonly, there were health professionals in these support groups, being facilitators or answerers of medical questions (DeCoster & George, 2005; Gilliland et al., 2002; Kotani & Sakane, 2004; Morris, 1998; Oren et al., 1996; Tang et al., 2005)(Oren, Carella et al. 1996; Morris 1998; Gilliland, Azen et al.

2002; Kotani and Sakane 2004; DeCoster and George 2005; Tang, Gillard et al. 2005).

113

Although these fourteen studies aimed to enhance social support and/or subsequent health outcomes, only four of them really evaluated the influence of social support. Two studies measured general support: Oren and colleagues (1996) used the Duke-UNC Functional Social Support

Questionaire (Broadhead, Gehlbach et al. 1988), and Smith and Weinert

(2000) used the Personal Resource Questionaire (Weinert and Brandt

1987). One study measured diabetes specific support, using the Diabetes

Support Scale (Glasgow, Boles et al. 2003). In addition, one study measured general support together with diabetes specific support (Barrera

Jr., Glasgow et al. 2002; McKay, Glasgow et al. 2002). General support was measured by the Interpersonal Support Evaluation List (Cohen and

Hoberman 1983); diabetes-specific support was measured by a self-developed scale--Diabetes Support Scale.

Several studies evaluated the intervention only on conclusion (Tanner and

Feldman 1998; Joseph, Griffin et al. 2001; Barrera Jr., Glasgow et al.

2002; McKay, Glasgow et al. 2002; Kotani and Sakane 2004). For the other studies, the follow-up periods ranged from 7 weeks to 1 year.

Implications from these intervention studies are discussed in the

114 following paragraphs. Firstly, although the research involving intervention studies is relatively limited, and social support was conceptualised and measured in a variety of ways, the results suggest that social support can be enhanced through using a well-designed intervention (Oren, Carella et al. 1996; Barrera Jr., Glasgow et al. 2002;

Glasgow, Boles et al. 2003), and social support can improve diabetes related health behaviours (DeCoster & George, 2005; Glasgow et al.,

2003; Heisler & Piette, 2005; Joseph et al., 2001; Kotani & Sakane, 2004;

Tang et al., 2005; Tanner & Feldman, 1998; Trento et al., 2001), facilitate adjustment to diabetes (Smith and Weinert 2000), and improve health outcomes (Gilliland et al., 2002; Glasgow et al., 2003; Kotani & Sakane,

2004; L. Smith & Weinert, 2000; Tang et al., 2005; Trento et al., 2001), among people with type 2 diabetes. But it has to be acknowledged that studies addressing social support and self-management together are limited till now. This may be because social support is commonly viewed as an influencing factor other than a real intervention.

Secondly, a social support intervention commonly involves grouping people who are strangers prior to the intervention, and they are expected to build intimate relations and provide mutual support (Barrera Jr.,

Glasgow et al. 2002). Transforming strangers into supporters is not an

115 easy process and may take a long period of time. In one study, social support was conceptualised as Confidant Support and Affective Support

(Oren, Carella et al. 1996). Confidant Support reflects primarily a confidant relationship where important matters in life can be shared and discussed, and Affective Support is an emotional form of support or caring and love. After a 17-week intervention, an evident increase in

Confidant Support (p<0.1) was found, while Affective Support was not significantly changed (Oren, Carella et al. 1996). Confidant Support may be achieved through discussing life events, while Affective Support means much deeper caring and love, and may be harder to reach and change and need more understanding and interaction. As evidence shows emotional support is very important (Kotani and Sakane 2004), more effective strategies are needed in future studies to enhance this functional domain.

Thirdly, family is an important source of support for older people, especially for the Chinese, who emphasise the family system and collectivism in their culture (Leung, Chen et al. 2007). In addition, for people with type 2 diabetes, family support is a crucial factor in influencing whether they can successfully make and maintain the lifestyle change (Fisher, Chesla et al. 2000). One study tried to target social

116 support from the family context as well as from friends (Gilliland, Azen et al. 2002). However, participation of family and friends in diabetes education group sessions had no effect on diabetes control in women with type 2 diabetes. Some studies also found spouse participation in weight loss education groups worked out negatively for obese men with type 2 diabetes (van Dam, van der Horst et al. 2005). Therefore, the role of family support in diabetes self-management is complex and needs more consideration.

Fourthly, several studies tried to enhance social support from outside the family context and peer/lay people were identified as important sources

(Morris 1998; Joseph, Griffin et al. 2001; Keyserling, Samuel-Hodge et al.

2002; Glasgow, Boles et al. 2003; Heisler and Piette 2005). Most of the studies achieved desired outcomes, such as improved perceived social support, self-management behaviour and health status. Peers share similar life experiences and challenges, and they can offer mutual support more effectively. Social support from peers may enhance lifestyle adjustment and health outcomes , especially among people with chronic health problems (van Dam, van der Horst et al. 2005). Peer support, either though group consultation, internet or telephone based peer-support, or social support groups, appears to be cost-effective and has the potential to

117 help individuals to adhere to type 2 diabetes self-management.

However, an evaluation of the Diabetes Network (D-Net), McKay and colleagues (2002) mentioned that use of the peer support group varied considerably across participants. The peer contact seemed enforced for only a few participants. The same situation happened in another study, where participants varied widely in how actively they used the website, and there was an overall decrease in logins for participants (Glasgow,

Boles et al. 2003). Researchers admitted that it was not clear how long or how actively participants should participate in internet-based peer group activities to achieve meaningful change. However, according to Tang and colleagues, frequency of attendance at group activities was not correlated with level of improvement (Tang et al., 2005). They suggested that patients are capable of determining the frequency and/or intensity in which they need the program and act accordingly. Though there were different views regarding the intensity of peer group participation, when using peer support groups, more attention need to be given to encourage interaction among the group.

Commonly, there were health professionals in these support groups, being facilitators or answerers of medical questions (DeCoster & George, 2005;

118 Gilliland et al., 2002; Kotani & Sakane, 2004; Morris, 1998; Oren et al.,

1996; Tang et al., 2005). DeCoster and George (2005) systematically reduced professional presence in their study as the peer groups developed and internal leadership matured and assumed more control, and the peer groups functioned well across the 6 months study period. In another study,

Smith and Weinert (2000) found that 77% of participants in the social support intervention group still kept contact with other participants after the end of the intervention. It appeared that after providing initiation and coordination at the early stage, peer support groups could be maintained over a long period without extra emphasis, which could act as a

“self-sustaining intervention”.

Fifthly, across these studies, the positive effects of the social support intervention on self-management could be observed over a short period, such as 2-3 months (Tanner and Feldman 1998; Joseph, Griffin et al.

2001), or a long period, such as 1 year (Gilliland, Azen et al. 2002;

Keyserling, Samuel-Hodge et al. 2002). It appears that social support is helpful in initiating behaviour change during the short-term, as well as reinforcing and maintaining it during long-term. However, in the Diabetes

Network (D-Net) project, researchers found that although the peer support group intervention produced short-term (3 months) effects on social

119 support, there is no significant effect on self-management behaviours. The researcher acknowledged that the use of the web site was modest, and varied considerably across participants (McKay, Glasgow et al. 2002). A possible explanation for this is the interaction did not happen frequently among group members. Therefore, though the perception of social support improved, it was not strong enough to influence behaviour.

Finally, several studies are limited by sample size. With a very small size of around 10 participants (Oren, Carella et al. 1996; Joseph, Griffin et al.

2001; Kotani and Sakane 2004; DeCoster and George 2005), the findings of these studies are largely compromised. Some studies observed possible change in social support, quality of life, and HbA1c, but the results were not definite due to the small sample size (Smith and Weinert 2000).

Though social support can be conceptualised from different aspects, it is commonly referred to as the perceived availability of functional support according to the review of literature. A systematic description of the strategies for enhancing social support from various functional aspects is needed in order to have a global view of these strategies.

120 3.2.3.4 Strategies for enhancing social support

Functional social support can be defined and categorised from various angles. Sherbourne & Stewart (1991) stated that there are five components of social support: emotional support, informational support, tangible support, positive interaction, and affectionate support. Though small difference exists, these categories are similar to many other researchers’ classifications (Dignam, Barrera et al. 1986; Tilden and

Weinert 1987; House, Umberson et al. 1988).

Emotional support involves the expression of positive affect, empathetic understanding, and the encouragement of expressions of feeling, while affectionate support involves expressions of love and affection

(Sherbourne and Stewart 1991). These two components are related to each other closely. According to Finfgeld-Connett (2005)，emotional support includes sharing ideas and experiences, expressing concerns, and offering encouragement. However, verbal exchange is not the only way to convey emotional support. Sometimes, physical presence, attentively listening, and even a reminder card are sufficient to express emotions.

Many studies used support groups, which is a mutual aid network among individuals facing common problems, or having compatible interests.

Participants were encouraged to express their concerns, success, and

121 frustrations with their day-to-day management of diabetes (McKay,

Glasgow et al. 2002). It is possible to develop intimate relationship among group members, thus they can share empathy, love, trust, and caring, and decrease feelings of social isolation (Toobert, Strycker et al.

2002)

Informational support involves the provision of guidance; advice, feedback, and information that can help an individual find a solution to a problem (Sherbourne and Stewart 1991). People may have relatively more opportunities to obtain medical information, such as from doctors and community nurses. In addition, education sessions and group discussions provide participants with opportunities to receive and exchange diabetes-related information (Morris 1998; McKay, Glasgow et al. 2002).

Tangible support sometimes is also known as instrumental support. It means providing material aid or behavioural assistance that directly help a person in need (Sherbourne and Stewart 1991). This type of support may include assisting with transportation, helping with household chores, helping preparing food, providing physical care, and providing financial help (Finfgeld-Connett 2005). Furthermore, facilitating the use of community health resources and bridging between patients and health

122 professionals are also appreciated. Most commonly, tangible support is provided by significant others or family members. It may be helpful to include these people in education programs and give them basic information. To take an example, if family members know the basic principles for diabetes dietary, it would be more possible that they cook appropriate food for the patient.

Positive interaction is similar to the concept of social companionship, which involves spending time with others in leisure and recreation activities (Sherbourne and Stewart 1991). Individuals joining in group physical activities, or sharing a healthy meal has been used in social support intervention (Gilliland, Azen et al. 2002), which not only increased obligation to the activity, but also provided a sense of belonging, companionship, and entertainment.

3.2.4 The relationship between self-efficacy and social support

Both self-efficacy and social support are important factors influencing self-management behaviours. According to Social Cognitive Theory, these two factors are associated with each other, but it does not mean symmetry in mutual influences (Bandura, 1977).

123

Bandura (1986) suggested two mechanisms through which social support is expected to have a large impact on self-efficacy. These include verbal persuasion and emotional arousal. Within supportive environments, people have opportunities to observe others achieve success, thereby influencing their own sense of efficacy regarding their ability to execute the same behaviours. Further more, family and friends are sources of encouragement, as they often use persuasive communication to point out one's strengths, minimise weaknesses, highlight positive outcomes, and minimise negative ones. Such support is helpful in overcoming obstacles in the pursuit of behavioral goals. Therefore a lack of social support may lead to lower self-efficacy, which will in turn reduce the likelihood of a given behaviour.

Several studies involved concepts of social support and self-efficacy together, which means the importance of social support and self-efficacy are both acknowledged by researchers (Plotnikoff, Brez et al. 2000;

Williams and Bond 2002; DeCoster and George 2005; Heisler and Piette

2005; Whittemore, Melkus et al. 2005; Chlebowy and Garvin 2006).

Williams and Bond (2002) found that positive social support was

124 associated with self-management in exercise and diet, and this relationship was mediated by self-efficacy. This study provided empirical evidence that social support could influence self-efficacy, which in turn influences self-management among people with diabetes. It appears that social support and self-efficacy are intimately related rather than orthogonal influences of health behaviour.

Some researchers incorporated the concept of social support into intervention/education programs, and included self-efficacy and self-management behaviours as an outcome variable (DeCoster and

George 2005; Heisler and Piette 2005). These studies achieved significant improvement in self-efficacy and self-managmenet behaviours, which also indirectly verified the relationship between social support and self-efficacy. However, evidence is still limited about the relationship between social support, self-efficacy, and behaviour change, thus more studies are needed in order to explore the mechanism more clearly.

3.3 Current studies on type 2 diabetes self-management education in China

While diabetes education is proliferating and addressing new theories and strategies worldwide, the real situation in China is far from satisfying.

125 Type 2 diabetes education has not been systematically incorporated into the current health care system in China. When people with type 2 diabetes are newly diagnosed in China, the treatment is commonly characterised by a strong reliance on medications. Even though people can receive some information about lifestyle modification from doctors, these brief principles are both ineffective and inadequate for practical change and sustained benefits.

Though people with type 2 diabetes expressed a high need for related education (Gan et al., 2001; Li et al., 2001; Li, Wang, & Shen, 2003), diabetes education is very limited, occurring only as episodic events in hospitals/communities or for research purposes. In a survey among 300 people with type 2 diabetes, results showed for the first time that 60% of patients received related information and only 30% had received health education more than three times (Li et al., 2001).

126

Table3.5 Type 2 diabetes intervention studies in China

Sample Design & Intervention Author Main variables Major findings Description (Liu, Fang, 90 (I-45, C-45) Non-equivalent control design Self-management in Intervention group improved Zhang, aged 26-70 I-one home visit one month post-discharge, appointment keeping, significantly in appointment Wang, & type 1 or type 2 distribute and collect patient records diet, exercise, keeping, diet, medication use, Wei, 2001) monthly over 6 months, medication use, blood blood glucose self-monitoring, frequent telephone contact glucose monitoring and HbA1c, C: usual care HbA1c No significant difference in exercises behaviour (Tang, 120 (I-60, C-60) Non-equivalent control design Knowledge, Intervention group improved Xiang, & mean age=56/60 I- Individualised counseling Self-management significantly in knowledge, Wu, 2001) type 2 C- usual care behaviour in diet, self-management ehaviour, 6 months F/U exercise, blood glucose HbA1c, FBG, P2hG, TC,TG, monitoring LDL and HDL HbA1c, FBG, P2hG, TC,TG, LDL and HDL (Xiong, 135 (I-69, C-66), Non-equivalent control design Diabetes knowledge, Experimental group improved Zhang et al. type 1 or type 2 I- Didactic education monthly, discussion if Self-management in diet, significantly in diabetes 2001) applicable after classes, exercise, knowledge, self-management, C- usual care HbA1c, TC, TG, BMI HbA1c, TC, TG, and mental Intervention lasted 5 months Mental health health 3 month and 6 month from entry No significant change in BMI (Liu et al., 60 (I-30,C-30) Non-equivalent control design Diet knowledge. Experimental group improved 2002) aged 55-70 I- Didactic education, view video, hand out Diet behaviour, significantly in knowledge, type 2 diabetes leaflet, individual nutrition assessment and FBG, P2hG, HbA1c, behaviour and all the diet counseling, distribute and collect diet TG, CHOL biochemical indexes diary every two weeks C: usual care Intervention lasted 10 weeks,

127

Table3.5 Type 2 diabetes intervention studies in China (continued)

Sample Design & Intervention Author Main variables Major findings Description (Shang, Ma 280 (I-143, Non-equivalent control design Diabetes knowledge Intervention group improved et al. 2002) C-137) I- Didactic education weekly, HbA1c, significantly in diabetes type 1 or type 2 Discussion if applicable after lectures, Self-management in knowledge, Self-management C- usual care exercise and blood in exercise and blood glucose Intervention lasted 5 weeks glucose monitoring, monitoring, 3 month F/U Mental health. HbA1c, and mental health (Shen, Jia 167 (I-81, C-86) Non-equivalent control design Diabetes knowledge, Intervention group improved et al. 2002) type 2 I- Didactic education monthly, Self-management in significantly in Individualised counseling diet, exercise, blood diabetes knowledge, C-usual care glucose monitoring, Self-management in diet, Intervention lasted 1 year hypoglycemia exercise, blood glucose management, foot care monitoring, hypoglycemia HbA1c, FBS, P2hG management, HbA1c, FBS and P2hG No significant difference on foot care (Wang, 60 (I-29;C-31) Non-equivalent control design FBG, P2hG, TG, Intervention group improved 2002) aged 34-75, I- Doing medium intensity exercises no less HDL, BMI, WHR,BP significantly in all these index type 2 diabetes than three times a week, lasting no less than 30 min every time, C-usual care Intervention lasted 1 year (Zhao, 160 Pre-test & post-test design FBG, P2hG, HbA1c Patients improved significantly Zhai, Zhao, type 2 diabetes I-Didactic education monthly, regularly Incidence of on 1Y, 2Y and 3Y later in FBG, Fu, & Li, contact by telephone/ mail / home visit, complications P2hG, HbA1c,and the 2002) social activities among patients and family incidence of complications members every 6 months decreased significantly Intervention lasted 3 years 1Y, 2Y & 3Y from entry

128

Table3.5 Type 2 diabetes intervention studies in China (continued)

Sample Design & Intervention Author Main variables Major findings Description (Chen et 96, Pre and post-test design Diabetes knowledge, Patients improved significantly al., 2003) type 1 or type 2 I-didactic education, handing out leaflet, Blood glucose level in diabetes knowledge; social activity among patients and family Percentage of people having members good blood glucose levels increased significantly

(Wang et 81 Pre-test & post-test design Diabetes knowledge, Patients improved significantly al., 2003) type 1 or type 2 I-didactic education and video viewing Self-management in in Twice every month for 1.5 months diet, exercise and blood Diabetes knowledge, 6 months F/U glucose monitoring, self-management behaviour, HbA1c, FBS, P2hG, TC, HbA1c, FBS, P2hG, TC and TG, BMI. TG. No significant change in BMI. (Huang, 50, Pre-test & post-test design Diabetes knowledge, Patients improved significantly Wang et al. aged 60 and over I- Hand out leaflet, distribute and collect Self-management in in knowledge, self-management 2004) type 2 diabetes patient diary, open counseling hotline, diet, exercise, blood behaviours, HbA1c, FBG, P2hG didactic education twice every month, home glucose monitoring and visit monthly, medication use Intervention lasted 6 months HbA1c, FBG, P2hG (Zhu, Wu 181(I-128, C-53) Non-equivalent control group design Diabetes self-efficacy, Intervention group improved et al. 2005) mean age =68 I- weekly CDSMP for 6 weeks + follow-up Self-management significantly in diabetes diabetes by community health professional Health status self-efficacy, exercise, C-usual care Health care utilization, 6 months F/U Blood glucose, BP, LIP, BMI,

129

Table3.5 Type 2 diabetes intervention studies in China (continued)

Sample Design & Intervention Author Main variables Major findings Description (Tang, Sun, 181(I-178, Non-equivalent control group design Self-efficacy, Intervention group improved Xu, Miu, & C-146) I- weekly CDSMP for 8 weeks + hand outs Self-management significantly in symptom Wang, mean age =62.05/ C-usual care Health status management, communication 2005) 61.84 6 months F/U Health care utilization, with professional, diabetes Blood glucose self-efficacy in general management and symptom management, health status, and visit to ER, visit to doctors. No change in blood glucose (Xi, Wang 95, Pre-test & post-test design Diabetes knowledge, Intervention group improved et al. 2006) aged 60-73 I- community education sessions + Self-management in significantly in all these diabetes handouts +weekly home visits + health blood glucose monitoring variables assessment every 6 months and foot-care Intervention lasted around 1 year Life satisfaction Blood glucose level, BMI,

(Yang and 44, Pre-test & post-test design Diabetes self-efficacy, Intervention group improved Huan 2006) aged 16-75 I- one 90min group education + encompassing general, significantly in all these mean age=56.7 individualized counseling twice a week diet, insulin, exercise, and variables in-patients +handouts foot-care diabetes till discharge

130 To understand the situation of diabetes education in China, the Chinese

Biology and Medicine Database was searched using the following

keywords: diabetes, education and intervention. Further inspection was

done by the researcher to check the relevance and quality of the articles.

Fifteen articles were identified, which were published in Chinese key

journals after 2000, and highly relevant to the review purpose. Detailed

information about these studies was presented in Table 3.5. The strengths,

weaknesses and main results are discussed.

These education programs were commonly developed from empirical

experience only, without any supporting theoretical framework. A

theoretical basis for patient education is essential since it provides a

framework to develop the education contents, a rationale as to why and

how the education will produce the desired outcome, and indicates the

measurement to be used. Without the support of a theoretical framework,

the effectiveness of patient education intervention is in doubt.

Among these studies, nine used non-equivalent control designs and the other six used a pre-test post-test design. A non-equivalent control design is more powerful than a pre-test post-test design in testing intervention effects.

Though the intervention group and control group are non-equivalent, main

131 factors should be on the same level. Unfortunately, several studies just reported there was no significant difference between groups (Xiong, Zhang et al. 2001; Shang, Ma et al. 2002; Shen, Jia et al. 2002). More detailed information, such as which factors were compared and what the original data were, cannot be obtained

Most studies utilised convenience samples from the endocrinology wards

and outpatient departments or community, but they did not provide

detailed demographic information. The general description of the

participants is adults with an average age of 50 years and over. The

sample sizes ranged from around 30 (Liu et al., 2000; Wang, 2002)(Liu,

Wujun et al. 2000; Wang 2002) to more than 100 (Shang et al., 2002;

Tang et al., 2005; Zhao et al., 2002; Zhu et al., 2005).(Shang, Ma et al.

2002; Zhao, Zhai et al. 2002; Tang, Sun et al. 2005; Zhu, Wu et al. 2005)

Most programs still focus on knowledge delivery, assuming that knowledge increase will lead to behaviour change or health improvement. Although some studies used education strategies including social groups (Chen et al.,

2003) and individualised counseling (Tang et al., 2001), most of them still relied on didactic teaching. In addition, some education strategies were oversimplified and lacked detail, so it is hard to understand or replicate them.

132 For example, exercise prescription just means encouraging patients to do medium intensity exercises for 30 min 3 times a week (Wang, 2002). How to guide and supervise patients? How to measure the intensity of the exercise? How to assist patients to decide exercise type? All these details are unclear. Another example is open counseling hotline (Huang, Wang et al.

2004). Readers do not know how many people used this service, who acted as the counselor and what the frequently asked questions were.

It is encouraging to see the concept of self-efficacy has been targeted in three Chinese studies after 2005 (Tang et al., 2005; Yang & Huan, 2006;

Zhu et al., 2005). As to these three studies, two followed the Chronic

Disease Self-Management Program developed by Lorig before (Lorig, Sobel et al. 2001), the other one did not provide detailed information about the education. .

The effects of several interventions may be compromised due to limitation with the outcome measures. Some studies used scales developed in other countries, but no information about the translation, adaptation and validity/reliability were reported (Xiong, Zhang et al. 2001; Shang, Ma et al.

2002; Xi, Wang et al. 2006). Some studies used a self-developed questionnaire without validity/reliability testing (Chen et al., 2003; HY Liu

133 et al., 2002; ZF Wang et al., 2003)

Type 2 diabetes is a chronic disease, so patients are imposed with a heavy burden to cope with it in everyday life. The patients’ real feelings are as important as the blood glucose index (Steed, Cooke et al. 2003). According to the current review, few Chinese studies pay attention to psychosocial outcomes, quality of life and related concepts until recently.

Although there were many weaknesses among these Chinese studies, it appeared that diabetes education was effective in improving diabetes knowledge, self-management behaviour, mental health, HbA1c and other clinic indexes. Considering the lack of diabetes education in China, it is not surprising that even some simple interventions achieved positive effects.

However, there were studies which found no significant change in exercise and foot-care after the education (Liu et al., 2001; Shen et al., 2002).

Finally, the older population may have poorer access to health care services than the general population due to lower education, lower income levels, limited health insurance benefits and housebound status (Tao 2000). In addition, the older population has its own physical, psychological and social features and should be given special consideration when implementing

134 education programs (Frich 2003). So diabetes education aimed at this underserved group is imperative, but there has been no such program till now in China.

3.4 Summary

In summary, around the world diabetes education has changed from just providing information to incorporating other mediating factors with information delivery. The Social Cognitive Theory is one of the most popular theories used in diabetes self-management education. Two constructs from Social Cognitive Theory, self-efficacy and social support, are important factors in predicting self-management behaviours among people with type 2 diabetes. Through well-designed interventions, self-efficacy, social support, self-management behaviours and the subsequent health outcomes can be improved.

However, type 2 diabetes education is very limited in China, occurring only as episodic events or just for research purposes. Among current studies exploring self-management programs for people with type 2 diabetes in

China, unwarrantable weaknesses can be identified, such as lack of a supporting theoretical framework, relying on knowledge delivery, and paying sole attention to a clinic indicator such as HbA1c.

135

Therefore, it is necessary to develop a Chinese specific diabetes education program, that is based on the Social Cognitive Theory and incorporates the concepts of self-efficacy and social support, and test it for effectiveness in the Chinese population.

136 Chapter 4 Literature Review Peer Education Program

In this chapter, the definition, utilisation in health studies, organisation and possible benefits of peer education program are reviewed. In addition, since the current study was guided by the Social Cognitive Theory, the possibility of integrating the theory into peer education format is explored. Finally, the significance and feasibility of using peer education program in China is discussed.

4.1 Overview of peer education program 4.1.1 Definition of peer education program

Peer education has been mentioned frequently by health professionals as well as lay people. Peer is a broad concept indicating any system where those of similar status gather together. Among such a system, people may be influenced in attitudes and behaviour by peers whom they respect and admire (Rogers 1983). While there are diversified definitions of peer education programs, the central characteristic is integrating the peer relationship into provision of health education. A peer education program means those of the same social status, whether relating to age, ethnicity, gender, cultural or sub-cultural membership, who educate and help each

137 other about a variety of issues or a specific concern (Parkin and McKeganey

2000).

Although peer education is complex and its application is highly variable across studies, there are two major functions: education delivered by peers and ongoing support from peers (Davis, Leveille et al. 1998).

Education by peers is thought to be effective because peers may possess more credibility than health professionals, better understanding of the concerns of the target group, and provide more regular interaction with their peers (Rogers 1983; Gammonley and Luken 2001). A wealth of terms have been used for peers undertaking education responsibilities, such as peer educator, peer facilitator, and peer tutor. They act as the link between the formal health care system and the target group.

Peer support is a system of giving and receiving help by individuals considered equal and sharing the same experience, and the help should be in the form of understanding, respect, shared responsibility, and mutual agreement of what is helpful (Mead, Hilton et al. 2001; Dennis 2003).

138 4.1.2 Utilisation of peer education in health programs

Peer education programs have been used in various populations and for a variety of health problems. A myriad of research has focused on the utilisation of peer education among individuals who have undergone maturational or developmental life transition (Dennis 2003), for example, adolescents (Neumark-Sztainer, Story et al. 1998; Webster, Hunter et al.

2002). Since peers can work ethnically, linguistically, socio-economically, and experientially, peer education programs have also been used among populations that are underserved, and hard-to-reach through common methods, such as ethnic groups (Finigan, 2003; Smith, Stephens, Smith,

Clemens, & Polly, 2003), people with HIV/AIDS (Boudin, Carrero et al.

1999; Molassiotis, Callaghan et al. 2002) and people with drug abuse

(Parkin and McKeganey 2000). In recent years, peer education programs have grown in popularity and practice in much broader fields, such as aged care (Allen, 2004; Buonocore & Sussman-Skalka, 2002)(Buonocore and

Sussman-Skalka 2002; Allen 2004), breast cancer screening (Allen,

Stoddard, Mays, & Sorensen, 2001; Kim & Sarna, 2004)(Allen, Stoddard et al. 2001; Kim and Sarna 2004), cardiac rehabilitation (Hildingh & Fridlund,

2004; Whittemore, Rankin, Callahan, Leder, & Carroll, 2000) , arthritis

(Barlow and Hainsworth 2001; Hainsworth and Barlow 2003), and mental illness (Chinman, Weingarten et al. 2001; Sabin and Daniels 2003).

139

Among these studies, the significance of peer education programs in facilitating self-management in long-term disabilities or chronic diseases, has achieved increasing attention. An outstanding example is the chronic disease self-management program (CDSMP). This program was originally developed at Stanford University Patient Education Research Center, which used trained peer leaders to provide education for people with generic disease, and has achieved success in different countries (Lorig, Ritter et al.

2001; Fu, Fu et al. 2003; Farrell, Wicks et al. 2004).

Several studies have explored the use of peer education among older populations and achieved desired outcomes (Davis, Leveille et al. 1998;

Barlow, Williams et al. 2001). In addition, there have also been many studies using peer education programs specifically in type 2 diabetes self-management that achieved positive outcomes (Auslander, Haire-Joshu et al. 2002; Holtrop, Hickner et al. 2002; MacPherson, Joseph et al. 2004;

Philis-Tsimikas, Walker et al. 2004).

4.1.3 Organisation of a peer education program

Despite its popularity, peer education is complex and its application is highly variable across studies. There are common considerations in order to

140 achieve an effective peer education program, which may include the recruitment of suitable individuals, appropriate training, creation of mentoring partnerships, and ongoing supervision and assistance of peer leaders (Filinson 1999; Hibbard, Cantor et al. 2002).

4.1.3.1 Recruitment of peer leaders

Peer leaders refer to those individuals achieving respect and admiration from peers, and they are seen to be key or central in the whole system

(Rogers 1983; Fennell 1993). In peer education programs, peer leaders usually work cooperatively with health professionals. The careful selection of peer leaders is a precondition for the success of the whole peer education program. The inclusion criteria for potential peer leaders may differ across studies, but the following attributes are most desirable.

Representation of the target population is most valuable for peer leaders.

Sharing similarities and possessing personal experience of the concerned issue equip peer leaders with deep understanding of the problem, thus they could provide concrete and pragmatic advice or guidance to peers (Dennis

2003). Furthermore, this representation allows peer leaders to respect and empathise with like-minded others when providing help (Gifford and

Sengupta 1999).

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In addition, peer leaders are expected to transfer some innovative behaviours or attitudes to others. So, ideally, these peer leaders would be selected as already having adopted the innovation. If not, then peer leaders would be trained and encouraged to adopt the innovation immediately. For example, Hibbard and colleagues tried to include those people with successful personal adjustment to the illness as peer leaders (Hibbard,

Cantor et al. 2002).

Being peer leaders may involve complex responsibilities and may cost considerable energy and time. Although sometimes peer leaders will be reimbursed for their work, commonly they work as volunteers. A strong willingness to help others is important (Hibbard, Cantor et al. 2002). Lack of this attribute may result in possible attrition of peer leaders, especially when facing some difficulties.

Many researchers also suggest that peer leaders should be selected based on their communication skills. The ability to actively listen and convey information in a non-moralistic and non-judgmental manner is important; thus the peers would view the peer leaders as helpers and likely to turn to them for advice and support (Filinson 1999; Hibbard, Cantor et al. 2002).

142

Since the inclusion criteria for peer leaders can be complex, commonly, the recruitment process involves an individual interview with potential peer leaders. The purpose of the interview is to ensure an understanding of peer leader commitments, to answer related questions prior to making an informed choice, and to determine the real suitability of these persons

(Davis, Leveille et al. 1998; Gammonley and Luken 2001).

4.1.3.2 Training of peer leaders

Although the detailed components, time and frequency of the training sessions for peer leaders vary, the main structure of training is similar.

Basically, training provides peer leaders with knowledge of the illness and community resources (Dunn, Steginga et al. 1999; Dennis, Hodnett et al.

2002; Hibbard, Cantor et al. 2002). For example, in training for peer leaders in a breast cancer screening program, key topics including breast cancer risk, mammogram costs and procedures, and the health care system were introduced (Earp and Flax 1999).

In addition to improving their knowledge and understanding of the concerned problem, peer leaders always receive training focused on

143 enhancing their communication, listening, and advocacy skills, such as communicating effectively one on one, making compelling group presentation, and activity planning (Dunn, Steginga et al. 1999; Earp and

Flax 1999; Gammonley and Luken 2001; Dennis, Hodnett et al. 2002;

Hibbard, Cantor et al. 2002).

One point that requires caution when implementing training for peer leaders is avoiding professionalisation. When peers are professionalised, their talents and accountability to the target population are shifted to the formal healthcare system, diminishing their mutual identification, credibility, and commonality with clients (Eng and Smith 1995). While training is essential, minimisation should be practised to ensure the preservation of “peerness”.

The aim of the training is just to orient the peer to program objectives and to promote skills that enable the use of experiental knowledge and unique understanding of the target population (Dennis 2003).

On the other hand, since they are not professionals, peer leaders are instructed to avoid suggesting solutions prematurely. They are expected to be active listeners and supporters, and refer people to health professionals for appropriate solution when applicable (Filinson 1999).

144 Training program typically follow a set format with lectures, demonstrations, role modeling, as well as practice (Davis, Leveille et al. 1998; Kim,

Koniak-Griffin et al. 2004). Peer leaders are encouraged to practise the skills they had learned, and feedback and critique is provided (Kim et al.,

2004). Project staff conducting the training observe the practice and evaluate the suitability of the potential peer leaders (Lorig, Ritter et al.

2003).

Sometimes, peer leader training involves utilisation of an outline/handbook

(Filinson 1999; Dennis, Hodnett et al. 2002). Various topics such as peer leader role description, benefits of proposed health behaviour, tips for effective peer support, and professional services available could be outlined

(Dennis, Hodnett et al. 2002).

4.3.1.3 Creation of mentoring partnerships

Peer education can be provided through a relatively formalized tutoring, such as whole class teaching or group discussion. Alternatively, it can also be provided through very informal tutoring in unstructured settings, one-to-one discussions and counseling (Turner and Shepherd 1999; Dennis

2003). Among the different formats, one-to-one contact and small-group meetings are the two most common types for a peer education program

145 (Campbell, Phaneuf et al. 2004). Typically, a one-to-one program involves individual visits. Small-group programs involve 10 to 15 participants for each group. Sometimes, participants’ family and friends are also included

(Lorig, Ritter et al. 2003). In most cases, concerns and issues raised by participants guide the emphasis of the education (Campbell, Phaneuf et al.

2004).

Usually, peer leaders are paired and work together to deliver the education

(Barlow, Williams et al. 2001; Gammonley and Luken 2001; Lorig, Ritter et al. 2003). The main reason for this is peer leaders can act as a check and balance for each other, thus the possibility of conveying incorrect information to participants is reduced (Lorig, Ritter et al. 2003).

In order to facilitate the establishment of a peer relationship, peer leaders are matched with participants by common interest or common diagnosis and gender. For example, Davis et al (1998) ensured that the mentor and participants had a shared topic of interest. Matching was done intentionally by the researcher. However, both peer leaders and common participants were given the option to choose the most preferable matching, and changes were confidential.

146 4.3.1.4 Supervision and continual assistance

One feature of a peer education program is the individualisation of the intervention. Commonly, education activities are based on the participant’s specific needs and preference, and the peer leader’s experiential knowledge

(Dennis, Hodnett et al. 2002; Campbell, Phaneuf et al. 2004). Although there will be some basic requirements about the frequency and structure of contacts, considerable flexibility will exist in a peer education program.

Therefore, it is important to assess whether the peer leaders really contact individuals, convey messages, and provide support that is consistent with the program goal (Earp and Flax 1999).

Utilisation of an activity log/diary is popular among peer education programs. Some researchers used a very detailed one, asking peer leaders to complete daily records over the intervention period noting the number, nature, main content, and amount of time spent on contacts they had had with participants (Davis, Leveille et al. 1998; Ziersch, Gaffney et al. 2000).

In contrast, some researchers used a simple one, asking peer leaders to outline the focus of current work and review the plan regularly (Gammonley and Luken 2001). Research staff can check the peer leaders’ work based on these documents and supervise the progress of the program.

147 Although peer leaders have received the original training, they need continual assistance in case of difficulties and unexpected setbacks. For example, peer leaders meetings should be organised routinely (Davis,

Leveille et al. 1998; Ziersch, Gaffney et al. 2000). During meetings, peer leaders could discuss the difficulties they have faced, identify accomplishments, and share useful skills with fellows (Gammonley and

Luken 2001). Research staff could also provide suggestions and emotional support, and help peer leaders to organise activities (Earp, Eng et al. 2002;

Hibbard, Cantor et al. 2002). In addition to regular meetings, peer leaders could contact research staff and ask for help anytime when needed (Davis,

Leveille et al. 1998). Through ongoing communications, the satisfaction levels and retention of peer leaders can be improved (Filinson 1999).

Furthermore, necessary modifications to programs can be made, and deep understanding and evaluation of the program can be achieved (Filinson

1999; Ziersch, Gaffney et al. 2000).

4.1.4 Advantages of a peer education program

Various benefits of peer education program have been mentioned in literature. Though some effects should be attributed to the interventions and the theoretical basis of specific studies, there are several common advantages for peer education program.

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4.1.4.1 Lowering cost

One barrier to providing health promotion services and programs is the cost of personnel. Reducing health care costs can be achieved by the 'substitution of care', in which the most appropriate person at the lowest cost level provides care (Davis, Leveille et al. 1998). After specialised training, peer leaders can be given responsibility for some tasks usually undertaken by health professionals. Trained peer leaders can become qualified substitutes for, or adjuncts to, a formal health care system (Wasserbauer, Arrington et al.

1996). For example, they can provide encouragement and support and make referrals to health services.

A peer education program is relatively inexpensive, since it only needs minimal funds for training and supervising, which averages just several hours a week. This minimal cost for the professional is transformed into many hours that the volunteers spend in their role (Davis, Leveille et al.

1998). Peer leader involvement bolsters the efforts of the professional staff and allows more time for other professional responsibilities (Fabacher,

Josephson et al. 1994).

Furthermore, a peer education program is even more economically viable

149 when the potential size of the target audience that may be reached is taken into consideration (Parkin and McKeganey 2000). Education programs utilising peer leaders may be able to effectively work with more clients than those working without such assistance (Davis, Leveille et al. 1998).

4.1.4.2 Increasing participants’ satisfaction

Part of the appeal of peer education arises from the frequently reported high participant satisfaction (Dennis, Hodnett et al. 2002; Campbell, Phaneuf et al. 2004). Because they have similar status with peers and have access to many formal or informal channels, peer leaders have a much better understanding of the real social, economic, and environmental conditions of the target population (Gammonley and Luken 2001). Thus, they can provide practical advice and useful information, which may be more sensitive and suitable than formal education, based on their own experience. Secondly, since peer leaders are viewed as equal by peers, and peer education is provided in a more casual form, a less intimidating atmosphere can be established. Peers may feel free to express their concerns and specific problems (Kim and Sarna 2004; Martijn, de Vries et al. 2004). All these factors will be helpful in enhancing people’s satisfaction.

4.1.4.3 Benefiting peer leaders themselves

150 Peer leaders not only provide services to others but also benefit themselves during the leading process, indicating that two populations gain from one intervention. For those older people retired from employment but still active, acting as peer leaders provides a sense of community participation, often leading to new social contacts and friendships (Barlow and Hainsworth

2001; Hainsworth and Barlow 2003). Evidence suggests that occupying multiple social roles is associated with higher life satisfaction and longevity in older populations (Davis, Leveille et al. 1998). In addition, peer leaders find their involvement in the program to be beneficial in improving knowledge and expertise, personal development and self-management behaviour (Barlow and Hainsworth 2001; Hainsworth and Barlow 2003), and improved health (Ziersch, Gaffney et al. 2000).

4.2 Integration of self-efficacy & social support in a peer education program

The current study is based on the Social Cognitive Theory, involving self-efficacy and social support. Evidence could be found from literature that both concepts can be integrated into peer education program compatibly.

151 4.2.1 Enhancing self-efficacy

Self-efficacy can be enhanced from four principal aspects: performance accomplishment, vicarious experience, verbal persuasion, and physiological feedback (Bandura 1997). Peer education programs can function well especially through vicarious experience and verbal persuasion and also facilitating performance accomplishment.

Vicarious experiences mean that an individual’s self-efficacy will be influenced by observing other people‘s experience. It is important that the

“model” (people being observed), are similar to the observers. People will learn more and try harder when they are motivated by people they perceive to be like themselves (Bandura, 1997). In peer education program, participants are close in age, beliefs, socio-economic status or educational level. Most importantly, they share experiences relevant to the concerned issue. Peers will observe and learn from each other intentionally or unintentionally. Someone’s successful experience among the peer group will have a positive effect on the other members’ self-efficacy (Kocken and

Voorham 1998; Dennis 2003). Peer leaders can act as positive role models

(Turner and Shepherd 1999; Lorig, Ritter et al. 2003).

Verbal persuasion means that an individual’s self-efficacy will be influenced

152 by being told verbally that he/ she possesses the capability to complete a given behaviour. Verbal persuasion can produce satisfying outcomes only when the persuader is regarded as a reliable source. The credibility of the information could be enhanced by use of peers rather than given by formal health professionals (Rogers 1983). Individuals tend to accept verbal persuasion from peers with whom individuals identify with and share common experience.

In addition to the former two sources, a well-designed peer education program can also modify an individual’s self-efficacy through influencing performance accomplishments or physiological responses (Gifford and

Sengupta 1999; Dennis 2003). For example, through anticipatory guidance, peers can provide positive appraisal for a performance or provide positive interpretations of a physiological symptom, and have an effect on self-efficacy perception.

4.2.2 Strengthening social support

Social support is multidimensional, and has been defined as the provision of: emotional/affectionate support, informational support, tangible support and positive interaction (Sherbourne and Stewart 1991). Attributes repeatedly mentioned for peer education programs include emotional support and

153 information support (Dennis 2003; Campbell, Phaneuf et al. 2004).

Emotional/affectionate support generally include expressions of caring, encouragement, and empathetic understanding (Sherbourne and Stewart

1991). Since peers have the same disease and frequently the same frustrations, they can share each other’s mixed feelings and anxiety

(MacPherson, Joseph et al. 2004). Such exchanges will reduce feelings of isolation and foster perceptions of being accepted, cared for, admired, empathised, respected and valued despite profound personal difficulties

(Gray, Greenberg et al. 1997; Earp and Flax 1999).

Information support is the provision of knowledge and feedback relevant to problem-solving (Sherbourne and Stewart 1991). People may have relatively more opportunities to obtain medical information, but peers are more successful than health professionals in passing on information because people view their peers as credible sources (Turner and Shepherd 1999).

In addition to emotional and informational support, tangible support and positive interaction can also be provided through peer education program

(Dunn, Steginga et al. 1999). For example, peer leaders can assist peers in accessing the health care system (Earp, Eng et al. 2002).

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4.3 Feasibility and significance of peer education in China

Health care resources are insufficient in China. The total expenditure for public health was 7590.3 million RMB (which is equivalent to around AUD

$ 1265.05 million) annually, and there were an average of 1.51 doctors per

1,000 population (National Bureau of Statistics of China, 2006). Furthermore, health resources are not allocated adequately. Chinese government shifts a major part of resources to senior level hospitals, so the situation is even worse in the field of primary care and community service. There are no national data in this field, but statistics from Shanghai can provide some information. The budget for chronic disease is 18,000 RMB per 10,000 people (Shanghai Municipal Statistics Bureau, 2003). According to the staff equipment standard for community service, there should be one general practitioner per 1,000 households, one community nurse per 2,000 households and one disease control professional per 3,000 households

(Shanghai Municipal Statistics Bureau, 2003). In Shanghai, most primary health care clinics comprise only 9 to 15 professionals, who usually have to care for around 11,000 community dwellers (Shanghai Municipal Statistics

Bureau, 2003). As Shanghai is the leading place in the development of

155 primary care in China, the general situation may be even poorer than the recommended standard for staffing in China.

Lack of health professionals and funds hampers the implementation of health programs, so exploring effective delivery models is necessary under the current situation. Initiating a community-based health program with the utilisation of peer leaders seems to be an alternative way to deliver diabetes education.

Providing help to family, friends, neighbors and acquaintances is well embedded in traditional Chinese culture. Actually, a few spontaneous self-help groups among people with type 2 diabetes has been seen in China in recent years (Chen et al., 2003)(Chen, Zheng et al. 2003), it is likely that active community members would act as peer leaders.

A few studies have examined self-management for people with generic disease in China. The studies have involved professionals, working together with trained peer leaders, and positive outcomes were identified (Fu, Fu et al. 2003; Tang, Sun et al. 2005). These results support the feasibility and cultural sensitivity of utilising peer leaders in China.

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4.4 Summary

Peer education programs have many possible advantages and have been widely used in health studies, especially in areas of self-management and type 2 diabetes. The important concepts of self-efficacy and social support can be integrated into a peer education program compatibly. Taking into consideration the insufficient health care resources in China and the successful utilisation of peer education program in previous studies, a peer education program is both significant and feasible.

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158

Chapter 5 Methodology

This chapter begins by presenting an overview of the research design, which is followed by a brief introduction of the research setting and ethical considerations. Methodologies used in each phase are described in detail.

The chapter then concludes with a brief summary.

5.1 Overview of the research design

The research questions for this study are presented in Section 1.5.2. In order to address these questions, a combined qualitative and quantitative design was used. This study was conducted in three phases (see Figure 5.1).

Phase One explored barriers related to self-management behaviours faced by older people with type 2 diabetes, and help needed to address identified barriers. Focus group discussions were organised for both older people with type 2 diabetes themselves and community health professionals to collect the data.

159

Phase One Purpose: to explore the barriers related to self-management behaviours faced by older people with type 2 diabetes and help needed Method: focus group discussion

Phase Two Purpose: to develop a diabetes self-management program for older people with type 2 diabetes living in the community in China. Methods: program development and pilot

Phase Three

Purpose: to test the effectiveness of the self-management program among older people with type 2 diabetes and peer leaders respectively;

to evaluate this program from perspectives of older people with type 2 diabetes and peer leaders

Methods: pre-test and post-test non-equivalent control group design; one group pre-test and post-test design;

questionnaire survey

Figure 5.1 Overview of the research design

Phase Two developed a self-management program for older people with type 2 diabetes living in the community in China. The findings from Phase

One, together with the principles of the selected theoretical framework, results from the literature review, and experiences of previous relevant

160 studies were integrated into the development of the self-management program. A small-scale pilot study was conducted as well.

Phase Three tested (1) the effectiveness of the newly-developed self-management program among older people with type 2 diabetes (general participants); (2) the effectiveness of the self-management program among peer leaders; and 3) evaluated the program from the perspectives of both older people with type 2 diabetes (general participants) and peer leaders. A pre-test, post-test non-equivalent control group design was conducted for testing among older people with type 2 diabetes (general participants); a one-group pre-test, post-test design was conducted for testing among peer leaders. Outcome variables included: self-efficacy, social support, self-management behaviours, depressive status, quality of life, and health care utilisation. Data were collected on three occasions: baseline, plus four weeks and twelve weeks from the beginning of the intervention. An evaluation of the program from the perspectives of peer leaders and older people with type 2 diabetes (general participants) was organisied at the completion of the study through questionnaire survey.

5.2 Research settings

The research settings were two communities, Linfen Community and

161 Weifang Community, in Shanghai China.

These two communities were similar on main aspects, such as population density and level of community health services. Linfen Community is located in Zhabei District in Shanghai China. This residential area was developed in 1988, with an area of 1.94 square kilometers. Approximately

19,000 families comprising around 69,000 people lived in this area during the study period. Weifang Community is located in Pudong District in

Shanghai China. It is a large residential area developed in the early 1980s, with an area of 3.80 square kilometers. Approximately 42,000 families comprising around 120,000 people lived in this area during the study period.

In 2001, there were a total of 44 Community Health Service Centers in

Shanghai. Among them, 20 Community Health Service Centers were recognised as “Model Community Health Service Centers” by the Shanghai

Public Health Bureau because they provided high-quality services

(Shanghai Public Health Bureau, 2001). Linfen Community Health Service

Center and Weifang Community Health Service Center were both among these “Model Community Health Service Centers”.

Community Health Service Centers aim to provide convenient health care

162 services for community dwellers, especially for vulnerable populations, such as older people, women, children and the handicapped ((Shanghai

Public Health Bureau, 2000a). A Community Health Service Center consists of a main department and several branches (Community Health Clinics).

The main department provides outpatient services for common diseases as well as inpatient services for older people with severe disabilities. Each

Community Health Clinic is staffed by a health professional team, which includes general practitioners, public health staff (disease prevention and control), community nurses and health assistants. Community Health

Clinics provide comprehensive services for people in the community, including immunisation, mental health consultation, rehabilitation exercise, main chronic diseases supervision, family planning, and medical treatment.

5.3 Ethical consideration

Approval to conduct the study was obtained from the University Human and

Research Ethics Committee, Queensland University of Technology and from the two Community Health Service Centers where the study was hosted.

All potential participants in this study were given written information sheets.

They were informed that participation in the study was voluntary and that they could withdraw at any time without explanation. The participants were

163 assured that their current or future situation (such as receiving health care service / assessment of working performance) would not be affected by their decision to participate, or not participate in the study or by withdrawal from the study at any time. For those who agreed to participate, they were asked to complete the written consent forms. The privacy of all participants was respected and all private data were kept anonymous and confidential throughout the study. The study results were reported with anonymity in order to protect the identity of participants.

It was considered that the risks for participants from this study were minimal. However, some potential risks still existed. In order to reduce such risks, protection procedures were carrierd out accordingly. In Phase One

(focus group discussion), older people with type 2 diabetes may have worried that if they expressed dissatisfaction with their current health care service, they would enrage the health professionals and receive bad service in the future. In order to reduce the participants’ worry, separate focus group discussions were held for each group of participants; that is, one for older people with type 2 diabetes and one for health professionals. Full assurance was provided that all information would be confidential and would not be disclosed to anyone else. In addition, the community health professionals may have thought that the service being provided for older people with type

164 2 diabetes would be evaluated and this might have an influence on their working situation or even threaten their position. Full assurance was provided that all information would be confidential and would not be disclosed to anyone else. Furthermore, the study would not be used as any kind of assessment of working performance.

In Phases Two and Three (program pilot and implementation), the participants may have felt uncomfortable or emotional distress when they were completing the survey. Therefore, if anybody felt uncomfortable about particular questions, he/she could choose not to answer it. If anybody felt distressed, he/she could tell the researcher/ research assistants and be referred to designated health professionals for mental help. In anticipating that the participants might worry about the information they provided and their medical records would be improperly released, especially for commercial purposes, participants were guaranteed that all the documents would be kept in a secret place. Only the researcher or research assistants had access to the files and all the files would be shredded after completion of the study. Finally, the participants allocated to the experimental group, and peer leaders, had to spend additional time in order to participate in the study, and might feel inconvenienced. Therefore, all the education sessions and group activities were arranged at convenient places within participants’

165 communities. The schedule was adopted for the convenience of participants and gathering places were located in their neighbourhoods.

5.4 Phase One 5.4.1 Research design

The key to education and program planning is using a “bottom up” approach based on clients’ wants and needs, instead of a “top down” approach designed on the basis of what educators believe their clients need. Thus, at the beginning of this study, an exploratory study was conducted. The views of older people with type 2 diabetes living in the community and community health professionals, on barriers related to self-management, and help needed to address these barriers, were gathered through focus group discussions. This information formed the basis for development of the self-management program.

Focus group discussion is a qualitative research method, which is designed to collect data regarding personal experiences and beliefs that are related to a designated topic (Morgan, Krueger et al. 1998). It is commonly used to collect information about a target group’s attitudes toward specific services and programs, to help researchers generate new ideas about how to attend to unfulfilled needs of the target group, or to determine where existing

166 approaches may need to be modified (Greenbaum 2000). The group setting allows participants an opportunity to share an experience, express opinions with explanation, and stimulate one another. At the same time, focus groups offer researchers a valuable opportunity to engage in in-depth interviewing while directly observing the dynamics of discussion between group members in an effort to better understand the thinking of target consumers

(Greenbaum 2000; Krueger and Casey 2000).

5.4.2 Sampling framework

In this phase, one population was older people with type 2 diabetes living in the community. In addition, it was expected that community health professionals’ understanding would add input from another angle to the discussion as they worked within the study environment and their role provided them with an intimate knowledge of current health service procedures and understanding of patients’ needs. So community health professionals constituted a second population for this phase.

Convenience sampling was used and all participants were recruited from the designated research settings.

The inclusion criteria for older people with type 2 diabetes were:

167 • Be aged 60 years or above;

• Be diagnosed with type 2 diabetes by a doctor from senior level hospital

(second and / or third level hospitals);

• Have no significant cognitive problems, including dementia;＊

• Have no advanced medical complications, including heart failure or end

stage renal failure; ＊

• Be able to communicate verbally;

• Be willing to be involved in this study.

(＊This information was checked from the Health Record for Older People in Community Health Service Centres, with the assistance of general practitioners.)

Patient participants were recruited through posters at Community Health

Clinics, community-gathering sites and through personal communication.

People who wished to participate contacted the researcher who checked if they met the inclusion criteria. Those who were eligible and agreed to participate were sent an information sheet and consent form for formal approval. Subsequently the place and time of the focus group discussion was arranged to facilitate the participation of every one.

Community health professionals were drawn from those working at these

168 two Community Health Service Centers at that time. The inclusion criteria for community health professionals were:

• Be working at the study settings during the study period;

• Be registered nurses/ registered general practitioners/ registered disease

prevention and control practitioners / administrators;

• Have no less than one year’s community work experience;

• Be willing to be involved in this study.

The requirement for working experience was to ensure that the participants were really familiar with the community environment.

Community health professionals were given a brief introduction to this research and invited to participate through common meetings at the

Community Health Service Centers. People, who showed interest in participation, were sent an information sheet and consent form for formal approval. Then the place and time of the focus group discussion was arranged to facilitate the participation of every one.

A focus group optimally consists of five to ten participants to allow the opportunity for each participant to give their point of view, comment and build upon others’ contributions (Krueger and Casey 2000). In Phase One, eight to nine participants were recruited for each focus group.

169

5.4.3 Data collection procedures

5.4.3.1 Focus group for older people with type 2 diabetes

There were two focus groups for older people with type 2 diabetes. One was held in Linfen Community with eight participants; another was held in

Weifang Community with nine participants. One facilitator (the researcher) and one assistant facilitator (research assistant) moderated these focus group discussions. Each focus group discussion ran for approximately 90 minutes.

Each discussion occurred around a table in a private room in the

Community Health Service Center. Participants were welcomed by the researcher and thanked for their participation in the study. The discussion began with an introduction, in which the facilitator introduced herself, briefly stated the purpose of the study, and acknowledged the use and placement of tape recorder. The facilitator reassured participants that any information they provided would not be linked individually to them in any report or publication. This step was important since participants need to feel assured they could speak freely about issues they saw as important (Krueger and Casey 2000). After that, group participants were encouraged to introduce themselves and get to know each other, which helped to achieve a relaxed, friendly environment. A permissive, non-threatening environment is

170 likely to support the goals of the focus group (Krueger and Casey 2000).

During the process of discussion, the facilitator encouraged discussion on the focused issues. She guided the process by proposing each question in a conversational format. Participants were encouraged to ask questions and to present information not sought during the focus group discussion. At the same time, the assistant facilitator monitored the tape recorder, observed the discussions, and recorded field notes including facial expressions, comments, and other facets of interpersonal interaction.

A discussion guide developed by the researcher prior to the focus group discussion was used to stimulate discussion. This guide included several topics asking older people about the barriers and help needed during the day-to-day management of type 2 diabetes. The topics were initially developed through a literature review, then refined and expanded to address the major variables of the Social Cognitive Theory, that is self-efficacy, social support and self-management. A focus group discussion generally includes six to ten questions, with subpoints where appropriate (Greenbaum

2000). In the current study, five overarching topics were addressed. Various probe questions were added to elucidate further understanding during the discussion. Open-ended questions were used in order to allow participants to determine the direction of the responses. All these questions were arranged

171 from general to specific. The guide was tested during a practice discussion with three older people with type 2 diabetes before formal utilisation. The discussion guide is shown in Appendix 2.

Face validity of the data is important and can be achieved by the facilitator outlining identified issues to the participants for clarification and verification (Kidd and Parshall 2000). Thus, during the discussion, when each topic was finished, the points were summarised and verified by the participants immediately as an accurate representation of discussion.

At the completion of the whole discussion, the group was asked again if they considered the summary of the events and outcomes by the facilitator to be appropriate and if there were extra comments. Finally the facilitator thanked the participants for their time and thoughtful contribution to the discussion.

5.4.3.2 Focus group for community health professionals

There were two focus groups for community health professionals, with one in each community with eight participants. One facilitator (the researcher) and one assistant facilitator (one research assistant) presented in these focus group discussions. Each of the focus group discussions ran for

172 approximately 60 minutes.

The common procedure was the same as the former one. Participants were welcomed, received a brief introduction and reassurance of confidentiality.

Since these group members already knew each other and were members of a same Community Health Service Center, it was easy to build a comfortable atmosphere. The facilitator stimulated the discussion according to a previously prepared guide. This guide was developed from literature review and revised through practice discussion with three community health professionals before formal utilisation. The guide included several topics such as asking community health professionals to identify what were the barriers during the day-to-day management for older people with type 2 diabetes and what was important to help older people to manage their disease. The discussion guide is shown as Appendix 2.

Face validity of the data was achieved through instant verification at the completion of each topic, and at the completion of the whole discussion.

5.4.4 Data analysis

The analysis of focus group discussion data aimed to address the following research questions:

173

Question 1.1 What are the opinions of older people with type 2 diabetes

about the barriers related to self-management behaviours

and the help they most need?

1.2 What are community health professionals’ opinions about

the barriers related to self-management behaviours faced by

older people with type 2 diabetes and the help they most

need?

Immediately following each focus group discussion, the researcher transcribed the tapes and added relevant notes taken during the discussion such as nonverbal communications. The transcripts were analysed using thematic content analysis following a step-by-step approach proposed by

Burnard (Newell and Burnard 2006). For the purpose of this study,

Burnard’s guidelines were modified from six steps to eight steps (see Table

5.1).

174

Table 5.1 Stages of thematic content analysis

1 Transcribing taped interviews into original language (Chinese)

2 Reading transcriptions and making notes about general themes

3 Open coding – repeated reading transcripts and generating open coding

headings to describe all aspects of the data

4 Reducing the codes under higher order headings

(codes- subcategories- categories – themes)

5 Translating transcriptions and heading system from original

language(Chinese) into English

6 Verifying and refining the heading system by the supervisor based on the

meaning of the entire transcripts and in English grammar expression

7 Returning to the data with the refined higher order codes

8 Collating the organised data for reporting, referring relevant literature and

using direct quotes

The findings of focus group discussion are presented in Chapter Six.

5.5 Phase Two

Social Cognitive Theory (SCT) was used as the theoretical framework for

Phase Two. In addition, a comprehensive review of the literature of previous studies was conducted. Hence, based on the integration of principles of theoretical framework, result of needs assessment and literature review, and drawing on the work of Shortridge-Baggett and colleagues

175 (Shortridge-Baggett 1995; Lenz and Shortridge-Baggett 2002), a peer-led self-management program for older people with type 2 diabetes living in the community in China was developed.

Two important concepts of SCT, social support and self-efficacy were incorporated into the design, implementation and evaluation of the program.

The program was designed to be a package, consisting of basic diabetes instruction (BDI) and social support and self-efficacy enhancing group (SSS) activities. BDI delivered by health professionals during educational sessions aimed mainly to pass on professional knowledge and skills related to diabetes self-management, while the SSS activities invloved group activities led by peer leaders with the aim of providing social support and promote self-efficacy.

A small-scale pilot of the program was carried out with 14 participants recruited from the research settings. The results indicated that the delivery procedures were feasible, without confusing steps. The average time for each BDI session, SSS activities and peer leader training sessions was not excessive. Suggestions from peer leaders and older people with type 2 diabetes were collected, and special attention was paid accordingly during the following implementation phase.

176

The details of the program, including original plan, pilot process, and minor amendment made during the implementation are reported in Chapter Seven.

5.6 Phase Three

The primary purpose of Phase Three was to test the effectiveness of the self-management program among older people with type 2 diabetes living in the community in China, as measured by changes in the participants’ self-efficacy, social support, self-management behaviours, depressive status, quality of life and health care utilisation. In addition, the effectiveness of the program among peer leaders, who received specific training and participated in most of the delivery process of the program, was examined as well.

Finally, this program was evaluated from the perspectives of older people with type 2 diabetes and peer leaders. This section includes description of the research design, population and sample, measures, data collection and data analysis.

5.6.1 Effectiveness test of the program among older people with type 2 diabetes (general participants)

5.6.1.1 Research design

177 The research design of a study is the plan and structure of investigation conceived to obtain answers to research questions (Kerlinger and Lee 2000).

A quasi-experimental, nonequivalent control group design was used. The design is comprised of an experimental and a control group who are not randomly formed, pretests and posttests, and an experimental intervention

(LoBiondo-Wood and Haber 2002).

Commonly, the experimental design is more convincing in testing an intervention effect (LoBiondo-Wood and Haber 2002). The crucial difference between a non-equivalent control group design and a true experimental design is that subjects are not randomly assigned. Since the proposed program was designed to be delivered by peer leaders and health professionals in a community environment, it would be very hard to ask them to only forward information to, and build peer groups among, those people in the experimental group and not contact other people. Therefore, in order to avoid contamination, a non-equivalent control group design was selected, and the experimental and control groups were recruited from two different, but similar, communities for this study. Some important antecedent variables between the two groups were compared at the beginning to guarantee equivalence. Where necessary, differences between the two groups at baseline for outcome variables were controlled statistically

178 in the analysis.

The design for this phase is diagrammed as Figure 5.2.

Non-equivalent Usual care control group

basic diabetes Experimental instruction (BDI) Group social support & self-efficacy enhancing group (SSS) activities

0 1 2 3

Pre test Post test 1 (4 weeks) Post test 2 (12 weeks)

Figure 5.2 Design for effectiveness testing among older people with type

2 diabetes (general participants)

In this design, both groups were given the same pretest measurements. Then the experimental group received a self-management program, which is explained in Chapter 7, and the control group received usual care during the intervention period. In China, self-management education has not been integrated into current health care system. Therefore, usually, diabetic patients just receive prescription of medicine and laboratory test from health

179 professionals rather than systematic diabetes education. In addition,

Community Health Service Centers are encouraged to provide irregular support to diabetic patients, such as updating health records, home visiting and distribution of leaflets. However, only around 5% patients are randomly picked and covered by this kind of service.

Finally, posttest measurements were taken on each group, which were repeated measures at four weeks and twelve weeks. The independent variable was the self-management program for older people with type 2 diabetes. The dependent variables (outcome variables) included self-efficacy, social support, self-management behaviours, depressive status, quality of life and health care utilisation.

5.6.1.2 Sampling framework

The target population was people aged 60 years or above with type 2 diabetes, who lived in the community in China. As participants’ general health, measured with the General Health (GH) Subscale of the Chinese version of Short Form 36 (SF-36) Health Survey (Li et al., 2003), was a major outcome variable for this project. The mean score for people aged 65 years and over and living in Mainland, China was used to estimate sample size (Li et al., 2003). With 69 participants in each group, assuming a

180 baseline average GH score of 50.3 and a standard deviation of change in the

GH of 20.9 units, it was determined that it would be possible to detect mean changes of 10 units or more with 80% power at the 0.05 significance level

(two-tailed). As proposed by Mortensen (2000), differences in the individual subscales of 10 points or more are considered clinically relevant. Therefore, the power was considered to be adequate with a sample of this size.

According to one similar self-management program undertaken in Shanghai,

China, it was estimated that 10.6% of all participants would be lost during follow-up, and a further 7.6% of the data would be excluded due to invalid response (Fu, Fu et al. 2003). Furthermore, as the target population was older people, the attrition rate was expected to be a little higher. Therefore, it was determined that 190 people, with 95 participants in each group would need to be recruited in order to have sufficient prospective data at the completion of the intervention.

Two convenience samples, one experimental group (n=96) and one control group (n=96), of people meeting the inclusion criteria were drawn from the study settings. The experimental group was recruited from Lingfen community in Zhaibei District while the control group was recruited from

Weifang community in Pudong District.

181

The researcher acknowledges that this sample is not representative of the entire target population. However, the reasons for choosing this sample include: (1) The Community Health Service Centers in these two communities belonged in “Model Community Health Service Centers” in

Shanghai, and they had been sites for several research studies before. These centers were willing to test the feasibility of a new program; (2) The

Community Health Service Centers in these two communities had well-documented records for older people, so it was easy to access potential participants; (3) The study was a starting point that had potential to expand to other communities.

To be eligible for Phase Three, the participants were required to:

• Be aged 60 years or above;

• Be diagnosed with type 2 diabetes by a doctor from senior level hospital

(second and / or third level hospitals);

• Have no significant cognitive problems, including dementia;＊

• Have no advanced medical complications, including heart failure or end

stage renal failure; ＊

• Be able to communicate verbally;

• Be willing to be involved in this study.

182 (＊This information was checked from the Health Record for Older People in Community Health Service Centres, with the assistance of general practitioners.)

The participants were recruited through posters at Community Health

Clinics, community-gathering sites and through personal communication.

The researcher and/or trained investigators briefly introduced the research to those people who wished to participate in this study and checked if they met the inclusion criteria. Those who were eligible and agreed to participate were sent an information sheet and consent form for formal approval. Then the intervention schedule (place and time of the education) was arranged to facilitate the participation of every one.

5.6.1.3 Measures

Data were collected on three occasions: baseline, plus four weeks and twelve weeks from the beginning of the intervention. The main measures/ measurement strategies are shown in Table 5.2.

Demographic data collection form

A demographic data collection form was developed by the researcher. It included information about age, gender, race, marital status, living

183 arrangements, level of education, level of income, years since diagnosis (see

Appendix 4).

Table 5.2 Summary of used measures

Main data Measurement strategies

Demographic data Demographic data collection form

Social support Medical Outcome Study Social Support Survey (MOS-SSS)

Self-efficacy Chinese Diabetes Self-Efficacy Scale (C-DSES)

Self-management Chinese Diabetes Self-Care Scale (C-DSCS) behaviours

Medical Outcome Study 36-item Short Form Health Survey Quality of life (SF-36) Depressive status Center for Epidemiologic Studies Depression (CES-D)

Health care utilisation Health Care Utilisation Data Collection Form

Medical Outcome Study Social Support Survey (MOS-SSS)

The Medical Outcome Study Social Support Survey (MOS-SSS) tool was

developed for use with chronically ill patients in the Medical Outcomes

Study (Sherbourne and Stewart 1991). The MOS-SSS is a 20-item

questionnaire focusing mainly on the measurement of perceived availability

of functional support (if needed). It comprises four subscales to assess four

functional dimensions of social support. Nineteen items are used to form the

subscales: emotional / informational (8 items); affectionate (3items);

184 tangible (4 items); and positive interaction (4 items). Since MOS-SSS’s emphasis is on the perceived availability of support if needed, it assesses the types of support available rather than sources of support. In addition, it includes one item to measure a structural support dimension, that is, the number of close friends and relatives. This measure is attached in Appendix

Each item is responded to on a 5-point Likert-type scale to indicate how frequently the respondent receives the support, with 1 representing “none of the time” and 5 representing “all of the time”. The total score is obtained by averaging across all the items and transforming into a 0-100 range, with high scores indicating better perceived social support. In addition, a subscale score for each dimension can also be obtained.

The measure was tested on almost 3,000 adult patients who suffered from a wide range of chronic illnesses, including hypertension, coronary artery disease, depression and diabetes mellitus, in three different geographic locations (Sherbourne and Stewart 1991). The MOS-SSS has good validity and reliability, with a reported Cronbach’s alpha of 0.97 for the overall scale and 0.91-0.96 for the four subscales. The 1-year test-retest reliability was

0.78. This tool has been translated into Chinese and applied to 110

185 HongKong adult people, with test-retest reliability at 0.84 and internal consistency Cronbach’s alpha at 0.98 (Yu, Lee et al. 2004).

Diabetes Self-Efficacy Scale (C-DSES)

Bandura (1997) advised that the measurement of self-efficacy needs to be specific to the domain or topic of interest to be beneficial in predicting behaviour change. So a diabetes specific self-efficacy scale, Chinese

Diabetes Self-Efficacy Scale (C-DSES), was selected for measuring self-efficacy in this study.

The Chinese Diabetes Self-Efficacy Scale (C-DSES) is a 26-items tool.

There are six sub-scales within it, including dietary management (6 items), regular exercise (4 items), medication taking (3 items), blood glucose testing (4 items), foot care (5 items) and hyperglycemia or hypoglycemic prevention/treatment (4 items). The C-DSES used a 5-point Likert-type scale ranging from “no confidence at all” to “strong confidence”. The

C-DSES is used to assess the degree that people with type 2 diabetes believe in their ability to perform self-management tasks associated with diabetes regimen. The measure is scored by adding together all individual responses.

Scores may range from 26 to 130. The scale gives a total score as well as a score for each subscale.

186

The C-DSES is one of few measures of diabetes-specific self-efficacy scale that has undergone extensive development and testing. The C-DSES was adopted from ther Diabetes Self-Efficacy Scale (DSES) developed in the west for use with adult with diabetes needing insulin treatment, regardless of the classification as type 1 or type 2 (Hurley and Shea 1992).

The DSES was translated into Chinese (C-DSES) and adapted for utilisation among people with type 2 diabetes (Wang et al., 1998). It was applied to

130 Taiwanese people with type 2 diabetes with good validity and reliability

(test-retest reliability at 0.96; internal consistency Cronbach’s alpha at 0.87.

The C-DSES was then modified in Mainland China and applied to 130

Shanghainese people with type 2 diabetes (Wang & Shiu, 2004) with good validity and reliability (test-retest reliability at 0.89 and internal consistency

Cronbarch’s alpha at 0.89). This measure is attached in Appendix 4.

Diabetes Self-Care Scale (C-DSCS)

The Chinese Diabetes Self-Care Scale (C-DSCS) is a 26-item tool. There are six sub-scales within it, including dietary management (6 items), regular exercise (4 items), medication taking (3 items), blood glucose testing (4 items), foot care (5 items) and hyperglycemia or hypoglycemic

187 prevention/treatment (4 items). Responses are measured at a 5-point

Likert-type scale ranging from “never”, “seldom”, “sometimes”, “usually” to “always”. The C-DSCS is used to assess the extent that each item is practised by people with type 2 diabetes. The measure is scored by adding together all individual responses. Scores may range from 26 to 130. The scale gives a total score as well as a score for each subscale.

The C-DSCS adopted from the Diabetes Self-Care Scale (DSCS) developed in the west (Hurley and Shea 1992). The DSCS was translated into Chinese and applied to 130 Taiwanese people with type 2 diabetes (Wang et al., 1998) with good validity and reliability (test-retest reliability of 0.96; internal consistency Cronbach’s alpha of 0.82. The C-DSCS was then modified in

Mainland China and applied to 130 Shanghainese people with type 2 diabetes (Wang & Shiu, 2004)) with good validity and reliability (test-retest reliability of 0.92 and internal consistency Cronbach’s alpha of 0.88). This measure is attached in Appendix 4.

Medical Outcome Study 36-item Short Form Health Survey (SF-36)

A short-form health survey, SF-36, was developed for the Medical

Outcomes Study (Ware and Sherbourne 1992). The SF-36 is a generic measure of health related quality of life (HRQOL). It consists of eight health

188 concept subscales representing two broad dimensions of HRQOL: physical health and mental health. The subscales are physical functioning (10 items), role limitation due to physical health (4 items), bodily pain (2 items), general health (5 items), vitality (4items), social functioning (2 items), role limitation due to emotional problems (3 items), and emotional well-being

(5-items). It also includes one item about reported health transition. See

Appendix 4.

Precoded numeric values are recoded according to the scoring key. A high score means a more favorable health state. Each item is scored from 0

(lowest score) to 100 (highest score). Next, items within a scale are averaged together to create a subscale score, one for each of the 8 subscales.

In addition, the scoring of the second pain item (interference with normal work) is conditional on the response to the first item (pain severity).

The SF-36 is one of the most widely used health care survey measures for measuring HRQOL. It has received rigorous evaluations (Frank-Stromborg and Olsen 2004). The SF-36 has been translated into Chinese and applied to

167 older people in China, with good validity and reliability. The internal consistency Cronbach’s alpha were 0.89, 0.86, 0.87, 0.87, 0.69, 0.63, 0.81 and 0.42 for physical functioning, role limitation due to physical health,

189 bodily pain, and general health, energy / fatigue, social functioning, role limitation, emotional problems and emotional well-being respectively (Li et al., 2003).

Center for Epidemiologic Studies Depression Scale (CES-D)

The Center for Epidemiologic Studies Depression Scale (CES-D) was developed as part of a National Institute of Mental Health study to measure depressive symptoms among adults (Radloff and Teri 1986). It is often used to identify the presence and frequency of depressive symptoms and assess their severity.

The CES-D is a short, structured scale consisting of 20 items. This scale includes 4 subscales, depressed affect, happy, somatic and interpersonal.

Each item is rated from 0-3, to correspond to the frequency with which certain items were experienced during the previous week. Option 0 = rarely or none of the time; option 1= some or little of the time; option 2= occasionally or a moderate amount of time; and option 3, most or all of the time. Scores on the happy subscale are reversed to reflect “unhappy” scores.

A total score is calculated by summing all items, and ranges from 0 to 60 to provide an index of distress. High scores signify more depressive symptoms.

A CES-D total score of 16 is a widely recommended cut-point indicator for

190 possible presence of clinical depression (Phifer and Murrell 1986; Barnes,

Currie et al. 1988; Somervell, Beals et al. 1993). See Appendix 4.

The CES-D has high internal consistency and was discriminate between symptoms. The CES-D has been translated into many languages and has been widely used (Beekman, van Limbeek et al. 1994; Cheung and Bagley

1998). In China, the CES-D has been used with adult and older populations and showed good validity and reliability (test-retest reliability of 0.92-0.94 and internal consistency Cronbach’s alpha of 0.81-0.86) (Meng, Hao et al.

1997; Xin and Shen 1997).

Actually, there is a measure of depressive symptoms specifically for older people, the Geriatric Depression Scale (Yesavage, Brink et al. 1982), and there is also a Chinese version of this scale. However, the CED-S is used popularly among studies related to chronic diseases, such as type 2 diabetes

(Connell, Davis, Gallant, & Sharpe, 1994; Fu et al., 2003; Piette et al.,

2000)(Connell, Davis et al. 1994; Piette, Weinberger et al. 2000; Fu, Fu et al.

2003), and was chosen for comparability of outcomes with similar studies.

Health care utilisation data collection form

A health care utilisation data collection form was developed by the

191 researcher. The form collected data on visits to doctors, visits to community health service center, visits to emergency room, number of hospital stays, and nights spent in hospital (see Appendix 4).

5.6.1.4 Data collection procedure

Outcome measurement was organised at three times (baseline, 4 and 12 weeks from beginning of the intervention) in both experimental and control groups. The first measurement aimed to obtain demographic data and understand the baseline level of outcome variables in the participants. The aim of the second and third measurements was to examine the effect of the program over time.

The whole data collection was organised and supervised by the researcher.

As there were many measures for this study, and older people may have difficulty in completing the measures due to impaired vision and writing ability, in order to increase the response rate, the measures were administered by eight trained assistants.

Before the start of data collection, the researcher provided forty-minutes training for each of these assistants to ensure the quality of data collection.

This training included an overview of the study, clarifying requirement of

192 the measures, maintaining privacy and confidentiality for participants and providing a non-threatening environment for participants. During the investigation, the assistants ensured each participants of the confidential and voluntary nature of the study first, then explained the requirement of each measure, read each item clearly, repeated the item if needed, and recorded the participants’ responses accordingly. The assistants encouraged participants to provide a response according to their own understanding or judgment, and did not interprete the items for the participants. Items were left blank if participants could not give a specific reply.

A pilot study was conducted to check whether there were confusing points in the measures and how long it took for participants to complete the measures. On average, it took 40-50 minutes to complete all of the measures when administered by an assistant. Participants responded appropriately to the questions.

Experimental group

The researcher and/or assistants met with those people interested in participating in this study and checked if they met the inclusion criteria.

Eligible individuals were asked to complete an informed consent form, then a demographic data form. Following this, each participant responded to the

193 outcome measures.

About two weeks later, each participant in the experimental group received a detailed timetable for the intervention program (detail presented in

Chapter 7). At 4 and 12 weeks following implementation of the program, each participant responded to the measures again.

Control group

The researcher and/or assistants met with those people interested in participating this study and checked if they met the inclusion criteria. For those eligible, each was asked to complete an informed consent form. After that, they responded to a demographic data form and the outcome variable measures. Approximately 4 and 12 weeks later, the researcher and/ or trained assistants invited the participant to respond to the measures again.

5.6.1.5 Data analysis

Data cleaning

All data were carefully checked and problems (if any) were corrected by the researcher. Data entry was undertaken by the researcher and a research assistant. Double entry was used for data verification. SPSS (Statistical

Package for Social Science)14.0 was used for all data management and

194 analysis. Descriptive techniques were used to identify obvious data errors and outliers. All suspicious data were followed-up with reference to the original data sources.

Approximately 5% participants had less than 3% of missing data in demographics and/or outcome variables. In this study, two methods were used to deal with missing data. Deletion of cases was undertaken if the pattern appeared to be random and data were missing on different variables

(Tabachnick and Fidell 2007). Missing SF-36 data were replaced by estimation according to the guideline published in the SF-36 user manual

(Ware 2000).

There were very few outliers in the data, from 0 to 3% cases in each variable.

All data analysis was conducted twice, both with outliers maintained and with outliers removed. In the following chapters, most results are presented with outliers maintained since there is no significant difference between analysis undertaken with outliers and that without outliers. Otherwise, results from analysis undertaken with outliers removed are reported, and noted in the text where applicable.

Data analysis procedures

195 Data analysis was divided into three parts: description, preliminary analysis, and intervention effectiveness testing. All analyses conducted were two-tailed and assessed at the 0.05 level of significance (p≤0.05).

Descriptive statistics included means, standard deviations, frequencies and percentages of the demographics of the participants.

Chi-square test or Fisher’s Exact Probability test (when less than 80% of cells had expected frequencies of 5 or more) were used to analyse categorical data, and independent t-tests were used to analyse continuous data when determining any difference in demographic data and outcome variables between groups. If necessary, variables found to be statistically different between groups at baseline were used as covariates for subsequent analyses of prospective data.

In order to address Question 3.1: Is there a difference in self-efficacy, social support, self-management behaviours, depressive status, quality of life and health care utilisation of older people with type 2 diabetes following the implementation of a peer-led self-management program as compared to a non-intervention control, mixed designed ANOVA and ANCOVA (where necessary) were used. Group (i.e. experimental and control) was the

196 between-subject factor and time (time 1-baseline, time 2- 4 weeks, and time 3

-12 weeks) was the within-subject factor. Where necessary, between-within mixed ANCOVA controlling baseline data was used to examine change over time. Post-hoc multiple comparison tests were performed for significant

ANOVA/ ANCOVA results to determine exactly how the two groups differed across time.

Assumption testing

Related statistical assumptions were tested before commencing analyses.

Most data met the test assumptions. Based on statistical advice, transformation was not considered worthwhile for the few data that violated assumptions. Finding from assumption testing are explained in the following paragraphs.

For independent t-test, the following assumptions were tested: 1) the groups being compared are independent of each other; 2) the data are continuous; 3) the data are normally distributed; and 4) the data are homogenous. Some data slightly violated the normality assumptions. However, a t-test is reasonably

‘robust’ , and with a large enough sample (e.g. 30+), violation of this assumption will not cause any major problems (Pallant 2005). Hence, because this study had large enough sample size, there was little concern

197 about the violation of normality. Where data violated homogeneity assumptions, results with “equal variances not assumed” are reported.

For between-within mixed design ANOVA, the following assumptions were tested: 1) the groups being compared are independent of each other; 2) the data are continuous; 3) the data are normally distributed; 4) the data are homogenous.

Some data violated the normality assumptions. As ANOVA is reasonably

‘robust’ of violations, and the study sample size was large (e.g. > 30+)

(Pallant 2005), there was little concern about the violation of normality. A few data violated homogeneity of variance-covariance assumptions. However, as the sample sizes were equal, it was expected that the test would be robust

(Tabachnick and Fidell 2007). Furthermore, where sample sizes are relatively

equal (with a ratio of 4/1 or less), an Fmax as great as 10 is acceptable

(Tabachnick and Fidell 2007). As data were checked using Fmax , and met the requirements, there was no concern about violation of homogeneity of variance nor of homogeneity of variance-covariance matrices. Similar assumption testing was undertaken prior to conducting between-within mixed design ANCOVA.

198 5.6.2 Effectiveness test of the program among peer leaders

In Phase Three, in addition to older people with type 2 diabetes (general participants), another category of participants, who received specific training and assisted in most of the delivery process of the program, were involved. They were peer leaders. Therefore, the effectiveness of the program among peer leaders was examined as well.

Peer leaders were drawn from Lingfen community, which was the study setting hosting the self-management program. They were recruited through posters at Community Health Clinics, community-gathering sites and through personal communication. The researcher met those interested in being a peer leader in advance to introduce the study and to check if they met the inclusion criteria. Those who were eligible and agreed to participate were sent an information sheet and consent form for formal approval.

Subsequently the training schedule (place and time of the education) were arranged to facilitate the participation of every one.

Fourteen peer leaders were recruited and 12 completed the study. Peer leaders did not need specialised training in medicine, psychology or health education. Instead, personal experience living with type 2 diabetes was

199 emphasised. The inclusion criteria for peer leaders included:

• Be aged 60 years or above;

• Be diagnosed with type 2 diabetes by a doctor from senior level hospital

(second and / or third level hospitals), and for more than half a year;

• Have no significant cognitive problems, including dementia;＊

• Have no advanced medical complications, including heart failure or end

stage renal failure; ＊

• Be able to communicate verbally;

• Have completed at least 6 years of education (primary school);

• Be willing to be involved in this study and act as a peer leader;

• Be confident and sensitive to type 2 diabetes self-management. #.

( ＊ This was checked from the Health Record for Older People in

Community Health Service Centre, with the assistance of general practitioners.

# This was assessed by the researcher through individual meetings using three open-ended questions).

The specific criteria “be confident and sensitive to type 2 diabetes self-management” was assessed by the researcher through individual meetings with potential peer leaders. Ideally, levels of self-management behaviours and self-efficacy should be measured using related measures.

200 However, “peer leader” was a relatively innovative concept to this population, and it was expected that there may be not many volunteers.

Therefore, in order to maintain the enthusiasm of potential peer leaders, no quantitative assessment was conducted at the interview. Instead, the researcher invited potential peer leaders to describe their experience of living with diabetes, and assessed levels of self-management behaviours and self-efficacy accordingly. Three questions were asked, including 1) How well do you take care of yourself 2) Could you describe what you do well and what not so well in diabetes management? and 3) Do you think you are able to control diabetes well? Those who demonstrated confidence and optimism in diabetes management were selected.

A one-group pre-test, post-test research design was used to determine change over time in the outcome variables, which were the same as for the general participants. The weakness of this design is acknowledged since pretest scores cannot adequately serve the same function as a control group, and there may be difficulty in interpreting the findings (Burns 2003).

However, there was difficulty in recruiting enough potential peer leaders.

Therefore, recruiting a comparable control group was impossible.

In this design, the independent variable was the peer leader. The dependent

201 variables were the same as those used for general participants, and are discussed in 5.6.1.3.

Similar to the sample of general participants, the sample of peer leaders completed the study measures at recruitment, and again at around 4 and 12 weeks later.

Data cleaning and checking was undertaken using the method described in

Section 5.6.1.5. Descriptive data analysis was undertaken as described in

Section 5.6.1.5. One-way repeated measures ANOVA with ‘time” as the within-subject factor, were performed to determine changes in outcome variables. To determine where the significant differences were (if any), post-hoc analyses using a Tukey’s HSD test were performed.

5.6.3 Evaluation of the program

An explorative study was conducted at the completion of the whole program among the general participants (experimental group) and peer leaders. The purpose was to collect feedback and suggestions for the current self-management program. A self-developed questionnaire, including both forced-choice questions and open-ended questions, were used for the evaluation (see Appendix 5).

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This questionnaire, together with a blank envelope, was distributed to older people with type 2 diabetes (experimental group) by corresponding peer leaders at the end of the whole program. After completing the questionnaire, the participants sealed it in the envelope and handed it back to peer leaders, which was forwarded to the researcher.

As mentioned, peer leaders met together with the researcher every two weeks for follow-up training from the fifth week to the twelfth week. At the final training session for peer leaders (the twelfth week), the researcher thanked them for their contribution and handed out the questionnaire (see

Appendix 5). The questionnaire was completed by the peer leaders immediately and collected at the end of the meeting.

For forced-choice questions, descriptive statistics were used for data analysis, including frequencies and percentages. For open-ended questions, content analysis was used to analyse the data. The main steps were similar to those used for focus group discussions, which has been described in 5.4.4 in detail. Research Question 4 of this study “What are peer leaders’ and older people’s perceptions of the significance, suitability and feasibility of the program?” was addressed through analysis of the data.

203

5.7 Summary

This chapter has outlined the rationale for the study design. Sampling framework, selected measures, data collection and analysis procedures for each phase were also presented. The following chapters report the findings of each phase in detail.

204 Chapter 6 Findings and Discussion of Focus Groups

6.1 Findings of focus groups for older people with type 2 diabetes 6.1.1 Participants’ characteristics

A total of 17 older people with type 2 diabetes participated in two focus groups (FGP) conducted in Lingfen Community （n=8）and Weifang

Community (n=9). Participants lived in these two communities, and some of them knew each other. Demographic details can be seen in Table 6.1.

Table 6.1 Demographics of patient FGPs participants (N=17)

Gender, n (%) Female 8 (47.1%) Male 9 (52.9%) Age (y) Mean 67.6 Range 60-75 Distribution within age ranges, n (%) 60-65 y 7 (41.2%) 66-70 y 3 (17.6%) 71-75 y 7 (41.2%) Duration of diabetes (y) Mean 11.5 Range 1-25 Distribution within duration range, n (%) <5 y 6 (35.3%) 5-10 y 4 (23.5%) >10 y 7 (41.2%)

205 6.1.2 Themes

Five main themes were identified. These themes, together with their constituent categories are presented below. See Table 6.2.

Table 6.2 Themes and categories from patient FGPs

Themes Categories Social support Receiving support from various sources Support is insufficient Looking forward to more social support Confidence to practise Perception of confidence self-management behaviours Factors influencing confidence Confidence and future expectations Self-management behaviours Variation in self-management behaviours Making compromise between ideal and reality Barriers to self-management Emotional/physical condition behaviour Life attitude Reliance on own feeling Overdependence on and dislike of Western medicine Misconceptions (hypoglycemia, diet control) Role expectations Lack of trustworthy and practical information Advice for ongoing health Preferred delivery style education Content of interest

6.1.2.1 Social support

Participants in both groups reported using similar sources of social support.

Most of them believed support they received was acceptable. At the same time, they pointed out that it was deficient, and looked forward to more social support. Three categories of meaning described their opinions:

206 Receiving support from various sources; Support is insufficient; and Looking forward to more social support.

Receiving support from various sources

Most participants got support mainly from their own family. Family support was described as financial support (especially for cost of medicines), help with housework, attention when cooking/buying food, constant reminder and supervision, and showing care and sincere consolation. Participants appreciated the family’s help, as one man expressed “I shall thank my family for their supervision. My wife is number one supervisor, murmuring all day along. And my children, all on my wife’s side. On weekends, the family gathers together, that is the education session by all my family members. It was not so comfortable, but quite happy as the whole family cares for your health.” Family support for diet was particularly emphasised.

Several participants mentioned that in general, the family cared more in terms of diet.

Support from old friends and peers was valued by participants as well. Some mentioned they benefited from this kind of interaction as they could share experience, encourage each other, and compare one’s problems to those who are worse-off. A few acknowledged peer support was irreplaceable since

207 sometimes even intimate family members did not fully comprehend the intensity of their suffering. Under such circumstances, communication with peer friends was more useful. One old man’s comments summed up their feeling. “When I was in that kind of suffer, my wife murmurs around too. I feel not happy. I think that she is not sick, so she does not know the pain yyyyyy I can only share such feelings with my peer patients, and knowing they are suffering the same, makes me feel at least that I am not alone.”

Furthermore, there was a common sense that peer friends were trusted information sources. The participants tended to rely on peers more than public propaganda, and sometimes even more than doctor’s advice.

As to help from health professionals, many mentioned they got reminders to test blood glucose and occasional enquiries about disease control, but rarely received further advice. However, there were three participants who had already built friendships with community health professionals and received more help.

A few acknowledged there had been more attention to type 2 diabetes in the whole society. They stated that “It has been covered on newspapers and TV” and “there is quite some propaganda now, and more and more importance has been attached to diabetes”.

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Support is insufficient

Although most participants felt what they received was acceptable, the situation of social support was not satisfying according to the participants.

In Chinese culture, older people prefer to live together with, or keep very close contact with, adult children. However, when they were separated from their family members, these older people lacked family support. Another common complaint was that family members claiming they cared and tried to be helpful actually provided little help. One man said “My family members have little knowledge and no comprehension about diabetes. They are good to me, but they do not know what to do.” In some extreme cases, people seemed to care but actually gave wrong information, or did wrong things with good intention. Non-supportive behaviours of family members about diet were stressed frequently, such as not preparing appropriate food or not reminding/encouraging participants to keep diet strictly. A few also mentioned family members were too busy to provide help.

Several participants said they had attended the Diabetes Association before and enjoyed communication with peers. However, some said “I am old, and it’s not convenient for me to go far away. I have gradually separated from the organisation”. For these people, they felt they acquired less information

209 than before and became isolated to a certain extent. Though some participants mentioned they tried to get familiar with other people with chronic diseases in Community Health Clinics and make new friends, most of them thought there were few channels for older people to get to know each other.

According to participants, “doctors’ help is not so much currently, just prescribe and remind test” and “they don’t tell you clearly what to notice”.

Dissatisfaction with support from the government was also found, as someone complained “the government does not pay attention to diabetes.

Our financial burden is heavy. “

Looking forward to more social support

Most participants expressed strong demand for more social support. More help from family members was advised. The participants said they needed

“someone to keep an eye on it “. Furthermore, they needed family members’ listening, consolation, and constant encouragement.

A few participants reported that the focus group was the first time they had discussed the management of their disease with someone else living with type 2 diabetes. Some said they were unaware of some points before and

210 found the FGP informative. They valued the opportunity to socialise with others in like-circumstance, and suggested building some kind of association in the neighborhood and organising similar activities regularly.

Although health professionals hardly provided detailed direction, they were still trusted by participants and more help was required. The participants looked forward to more contacts with, and more supervision and reminders from health professionals. They also hoped health professionals could provide health lectures or organise activities for them.

More attention from the government was advocated. Participants wanted diabetes to be treated as important as other chronic diseases, such as high blood pressure. Thus , the government would assign more funds and provide more reimbursement for diabetes medicine and blood glucose tests. They also suggested that the government should strengthen regulation on medicine/health care product advertisements. More attention from the whole society and community organisations, such as Community Committee, was also required.

6.1.2.2 Confidence to practise self-management behaviours

Participants’ perception of self-efficacy was explored in these focus group

211 discussions. Self-efficacy was defined by researcher as being confident, having belief in oneself in performing specific self-management behaviours and subsequently make a positive difference to their disease. Although participants recognised the importance of belief in oneself, the whole situation was not satisfying, and even worse when considering future expectations. Three categories of meaning emerged: Perception of confidence, Factors influencing confidence, and Confidence and future expectations.

Perception of confidence

When interviewed, some participants mentioned the importance of confidence, with expressions such as “it’s necessary to have confidence in yourself. Otherwise, you will be beaten by the disease.” However, when pressed for more detailed description about the impact of confidence on their self-management behaviours, few provided vivid experience. In contrast, they turned to talk about other factors that interfere with them performing self-management behaviours in daily lives, such as limited family support. And nobody mentioned lack of confidence as a barrier. It seemed that confidence was seen as important, but not a priority in their minds when considering factors related to self-management behaviours.

212 As to how confident they were in general, a range of responses was found among participants. This ranged from those who were very pessimistic about self-management behaviours to those who were very optimistic.

Examples included “what confidence I have? I feel I am getting worse day after day” or “they must have better control over diabetes than I do” or “It’s easy for me to take care of myself well”. Several participants mentioned they believed things were going to workout if they could adopt self-management behaviours strictly, but they could not fulfill that. “I know if I can strictly following the instructions, it will be better, but it’s too difficult.” Under this circumstance, lack of self-efficacy may be accompanied by frustration, self-blame and sense of guilt.

As to confidence in different self-management behaviours, participants felt most confident about medication. Diet control raised a lot of discussion and was emphasised as well. However, the responses varied. Some participants did not think they could control diet, while some expressed high confidence in diet. In relation to exercise, participants felt more pessimistic. No one spontaneously discussed confidence in performing foot-care or blood glucose testing.

Factors influencing confidence

213 Participants noticed that their confidence varied from time to time. Some mentioned that encouragement from friends or family members made them feel better and more willing to try some lifestyle change. The influence of role models, especially those who are not perfect, was detected as well. One old man said “ he (a peer patient) is older than me, frailer than me, but he deals with it well. I always ask myself to think about this when I nearly give up”. Positive experience can boost confidence a lot. When people fell that their efforts really make a difference, they may fell empowered to persist.

Unfortunately, many participants mentioned their negative experiences, i.e. they did not persist with self-management because there were no visible positive effects. One lady said “I tried medicine for several weeks and finally gave up since I didn’t feel much difference.” In addition, several people said that they knew some kinds of exercise or tried for a period, but gave up finally because there seemed to be no change in their feelings or blood glucose tests.

Confidence and future expectations

When asked about expectations for the future, participants’ responses varied.

Those who were confident had optimistic expectations for the future.

Responses included “I am quite care about my health. I can keep current state without accident” and “I will definitely persist. Time is not an issue”.

214 Those who lacked confidence now thought they might get worse in the future. “I can’t do it well now, it’s even harder to persist it in the future.”

However, the current status of confidence did not guarantee long-term confidence. Several people doubted their own ability in the future. The main reason was deteriorating physical condition: “What worries me is that I will be unable to do what I hope to do (due to state of health).” There was one exception, as one lady who did not feel confident in self-management behaviours at the time, did expect she would do better in the future.

6.1.2.3 Self-management behaviours

Participants in both groups mentioned the main behaviours related to self-management: medication; diet and exercise. Some made compromises to accommodate self-management practices in their daily life. Two categories of meaning described their opinions: Variation in self-management behaviours, and Making compromise between ideal and reality.

Variation in self-management behaviours

The performance of diabetes self-management behaviours was far from satisfying according to the participants. A range of responses was found,

215 including people who did practise self-management behaviours often to those who scarcely or never engaged in theses practices. Some described they were “quite a role model”, while others acknowledged that they were not doing well.

The majority of participants recognised the importance of medication. Many said taking medication was the best part of their self-management behaviours. Some strategies were used in order to take medications properly.

For example, one man mentioned “I draw a table to remind me of medicine”.

What has to be mentioned is, many participants pay attention solely to medication, ignoring that other lifestyle changes should be emphasised as well. Several acknowledged that they could only persist in taking medication but not other self-management behaviours, and even for taking medications, their situation may be worse. According to the participants interviewed, missing tablets, discontinuing medicine or adjusting the amount according to their own judgement was not unusual.

Although diet control received common interest, participants struggled in this aspect and their practice appeared to be suboptimal. Many participants acknowledged that they were not doing well in any diet management. They said that they did not follow the diet usually, or did not on special occasions

216 such as family gathering and guest visiting. In addition, several mentioned they controlled diet just by cutting out sweet food.

The practice of exercise was different among participants. Some claimed they often went out for exercise, while some acknowledged they did not.

Most people said that they knew some kinds of exercise or tried for a period, but gave up finally because there seemed to be no change in their feelings or results of blood glucose testing. In addition, concern about having an accident and hypoglycemia contributed to the participants’ reluctance to exercise. Other reasons, including limited time, fatigue, feeling uncomfortable, bad weather, and not finding an exercise partner, impeded exercise as well.

As to blood glucose checking, the situation was even worse. Participants complained that diabetes was associated with lots of tests. Most participants did not test their blood glucose regularly. Someone said “That depends. If I feel not well, changed medicine, or community nurses chased me for several times, I go to the test.” There was a tendency that people stretched the time between blood glucose testing, and did them twice monthly or every 3~4 month. An extreme example was a lady who had last checked her blood glucose 6 months previously and thought that was appropriate.

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Foot-care was generally considered as the least important item. No one spontaneously mentioned foot-care. During their daily life, few checked their feet. When asked for their comments on foot-care, participants thought this activity was not necessary, especially for visiting a podiatrist.

Making compromise between the ideal and reality

Diabetes self-management is a complicated task. To strictly adhere to recommendations was difficult for the participants. According to the participants interviewed, some had realistic and flexible expectations about the regimens, which means they may practise self-management behaviours but allow themselves to be occasionally sluggish. One man said “I usually try to do what is good. But I have to give up, if I really can’t put into practice.”

This phenomenon was obvious especially in diet control. Since a diet plan is complicated, many people just controlled it roughly. One participant said “I have a good control on my diet. Although I don’t know advanced knowledge, for instance, collocation of nutrition and calculation of calories,

I usually balance and control my diet based on my rough understandingyyyyyyAlthough it is not precise, I still think it’s useful. ” One

218 lady mentioned she might break her diet occasionally as a reward for good blood glucose control, “my diet control depends on the result of blood glucose testyyyyyyWhen the blood glucose is good, I will feel happy and start to eat more for a while. ” It appeared that some people already found ways to accommodate self-management in their own lives. Long-term practice may be enhanced with this kind of adaptation.

6.1.2.3 Barriers to self-management behaviours

Various inter-personal barriers, involving physical, emotional, and psychological aspects, as well as social-environmental barriers were identified by participants in both groups. Seven categories of meaning emerged for this theme, including Emotional/physical condition, Life attitude, Reliance on own feelings, Overdependence on and dislike of

Western medicine, Misconceptions, Role expectation, and Lack of trusworthy and practical information.

Emotional / Physical condition

The practice of self-management behaviours was influenced by physical and emotional conditions. Many participants reported that they could not maintain self-management due to fatigue, feeling uncomfortable, and painful joints. Feeling physically sick was often associated with having

219 other chronic conditions such as hypertension and heart disease.

Furthermore, for those with comorbities, worries about accidents and negative effects on physical condition contributed to their reluctance to exercise.

In addition, a few expressed that stress disrupted their lives. It seemed that when people were in emotional stress, they almost gave up self-management efforts. One participant described his experience that one time he felt very sad because he and his wife were both unwell and without children around.

He said “at that time I was very low and indifferent to everything. I just found life lost its relish and it’s meaningless to pay much attention to health”.

Life attitude

Getting accustomed to every situation and trying to be happy is one kind of philosophy deeply planted in Chinese culture. It can help older people to keep a good mood to some extent. However, it might have a negative impact on diabetes self-management as well. Several participants expressed their attitudes to disease as “let nature take its course” or “ I am old, I may let it be”. They prefer to be resigned to fate other than struggle to control the disease.

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Furthermore, some participants mentioned they did not practise diabetes self-management behaviours because they do not want to reduce their quality of life. “If I give up everything, there is no quality in my life, and it makes no sense for me (to live) “. This attitude was stronger especially in relation to diet control. For older people, food means a hobby, a pleasurable experience associated with past memory. It was very hard for them to change eating habits formed over long time. One old man said “I would rather eat what I want, and live another several nice years and it would be over.”

Reliance on own feelings

Older people with type 2 diabetes, especially those who had been diagnosed for a long time, tended to rely on their own feelings. Some thought they had a good understanding of their bodies, so they did not follow doctors’ instructions. Adjusting medicine according to own feelings without consulting doctors was not unusual among this group.

Furthermore, they avoided blood glucose test, or controlled the frequency of blood glucose test. For example, some said “It is not necessary as I can feel the state of my disease” and “For so many years, I know my body well. My

221 feeling is more accurate than instruments”. Superstition about their own feelings was a big barrier to blood glucose testing.

Overdependence on and dislike of Western medicine

It is a dilemma that participants relied on Western medicine while they disliked it. There was a misunderstanding that as long as people took

(Western) medicine, the disease would not get worse even without strict adherence to other regimens. So most participants were over-dependent on medicine while giving less attention to other aspects of self-management behaviours. For example, one lady said “I have been always taking medicine, and my blood gluose is neither good nor bad, thus I do not pay much attention to it”.

At the same time, the participants thought Western medicine was harmful to the human body, and took it reluctantly, as one lady said “taking medicine is what I have to do, as the medicine will do harm to human body. “ It is not strange that participants tended to take less medicine, or stop it when they feel better. In contrast, participants preferred traditional Chinese medicine

(TCM) and related health care products typically made from herbs and other natural sources, which were viewed as safer and more in harmony with the human body.

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Misconceptions

In Chinese language, the name of diabetes means “sugar in urine disease”, which easily leads to misunderstanding. Many thought they got the disease from eating too much sweet foods, and should just cut those foods out.

Many participants mentioned they controlled diet by not eating sweet foods and/ or fruits. In addition, there are a lot of “low-sugar” or “non-sugar” products on the market. Some thought they could eat it without worry, and indulged in it. One lady mentioned she ate four low-sugar moon cakes during mid-autumn festival.

The participants were concerned with safety very much. They had a deep fear of hypoglycemia, which may have resulted from extreme examples in public media and exaggerated experiences communicated among peers.

They were unwilling to do exercise, control diet strictly, or use insulin due to this.

Role expectations

Some participants mentioned that because they often did not look “sick”, family members did not view them as patients, and they still had to fulfill the home responsibilities. Many participants described how they were

223 restricted due to home responsibilities and felt a bit tired. “I am not free, I have to worry and manage everything at home” and “I have no time to take good care of my health since busy with housework”. Furthermore, there were some participants still continuing work. For them, work responsibility might impose a negative impact on diabetes self-management. For example, in order to meet energy commitment for work, people tended to give up diet control.

In China, eating together is something like a gathering ritual for families and friends. Many participants reported they must take into consideration other’s tastes when preparing dinner. There was a general sense that others may feel uncomfortable eating around them if they change their eating habits. So, participants did not like to maintain a strict diet when eating with extended family, dining out with friends or preparing food for family. One man said “I break rules, when there is guest at home or when I visit someone. There is no way out. If I abide by the rules strictly, others will find it not interesting”.

Lack of trustworthy and practical instruction

Lack of trustworthy instruction was listed as a big barrier to diabetes self-management. Actually, only a few participants acknowledged they knew little about diabetes. Most said they got information from various

224 channels, such as public media and friends. What worried them was that this information might be incorrect or incomplete. And there was little opportunity to confirm the information if they were confused or unsure. One man expressed “we do not know as much as doctors after all. We have to find the way sometimes, but we are uncertain whether it is suitable or not”.

Participants also complained that the time arrangement for a visit to doctors was too short to discuss their concerns with health professionals. They thought health professionals did not encourage them to ask questions and did not listen to them patiently.

Another common complaint was that the information they got was impractical to be followed. Some were just generic concepts, having limited use in assisting people to practise specific aspects of diabetes self-management, while some were too complicated and trivial to be realised in daily life. For example, one man complained “it would be too troublesome if you lived in the way doctors suggest. One reason is that there are too many and trivial requirements, which you can not remember at all …… what doctor demands now is not practical, impossible for everyday life”. It seemed that the latter kind of information only intimidated them and deflated their efforts. Lack of instruction, which should be both simple and specific to the participants’ living context, was identified a big barrier.

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6.1.2.5 Advice for ongoing health education program

Most participants attached importance on appropriate health education program, and advice about adequate running styles and contents were provided as well. Two categories of meaning described their opinions:

Preferred delivery style and Content of interest.

Preferred delivery style

Many suggested that health education programs should be organised formally, and provided by hospitals and health professionals, since there was a lot of cheating propaganda.

In addition, any program should be held close to the residence of participants, arranged at everybody’s convenient time, not be too long per session, use various teaching strategies, such as pictures, live cases, and provide large format handouts. The participants emphasised the presence of experts, question and answer sessions, and peer patient activity during the education. Some participants suggested “including family members in future health education program, who can care us more in daily life then.”

Content of interest

226 Relevant content, including basic knowledge for commonly used drugs, diet control, beneficial and appropriate kinds of exercise, occurrence and treatment of hypoglycemia, and importance of blood glucose test was suggested. In addition, participants showed interest in TCM and related health care products. They wanted such information to be included in future education programs.

What was mentioned frequently was that the content should be simple and practical. The participants described that what they needed is “ready menu fit for diabetic” / “just like fool’ book” / “specific, do not need to think so much”.

6.2 Findings of focus groups for community health professionals 6.2.1 Participants’ characteristics

A total of 16 community health professionals participated in two focus group discussions conducted in Lingfen Community and Weifang

Community, Shanghai, with 8 people in each group. These participants were working in Community Health Service Centers in these two communities, and were familiar with the situation of older people with type 2 diabetes in their communities. The participants in each group knew each other very well

227 since they worked in the same Community Health Service Center.

Demographic details can be seen in Table 6.3.

Table 6.3 Demographics of professional FGPs participants (N=16)

Gender, n (%) Female 9 (56.3%) Male 7 (43.7%) Position, n (%) RN 5 (31.3%) GP 6 (37.5%) Disease prevention & control professional 3 (18.8%) Administrator 2 (12.5%) Community working experience (y) Mean 7 Range 3-15 Distribution within experience ranges, n (%) <5 y 6 (37.5%) 5-10 y 6 (37.55) >10 y 4 (25%)

6.2.2 Themes

Five main themes were identified. These themes, together with their constituent categories are presented below. See Table 4.

6.2.2.1 Social support

Although participants in both groups thought older people with type 2 diabetes could receive support from various sources, they pointed out that the support was insufficient. Three categories of meaning emerged:

Receiving support from various sources; Support is insufficient; and More

228 social support is needed.

Table 6.4 Themes and categories from professional FGPs

Themes Categories Social support z Receiving support from various sources z Support is insufficient z More social support is needed Confidence to practice z Weak and short-term confidence self-management behaviours z Factors influencing confidence Self-management behaviours z Variation in self-management behaviours z Making compromise between ideal and reality Barriers to self-management z Lack of perception of severity behaviours z Overdependence on and dislike of Western medicine z Role expectations z Ineffective communication with health professionals Advise for ongoing health z Preferred delivery style education z Content of interest

Receiving social support from various sources

The participants emphasised the importance of support from family members, including spouse and children/grandchildren. One disease prevention and control professional said “In general, more help come from family members. Anyway, elderly people have limited external relationships…… Elderly people spend most of their time at home, seeing the same person everyday”. According to the participants, family members provided constant reminders and counseling to older people with type 2 diabetes. Family’s influence on diet was stressed particularly.

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Support from other channels, including peers, health professionals, and communities were mentioned as well. The participants thought these sources of support were important especially when individuals were lacking family support (being separated from children, spouse being sick, or being widowed). Communication and support among older people with type 2 diabetes was considered necessary and important. A nurse described that

“they have low mood sometimes. If they can have some peers chatting together, knowing that they are facing similar issues, they may feel better”.

The participants thought they provided support, especially professional instructions to older people with type 2 diabetes. However, few provided more details on this point. Community Committees in some areas provided help for people with type 2 diabetes, such as issuing wall posters, and distributing information material.

Support is insufficient

There was a common sense among the participants that older people with type 2 diabetes got insufficient support. They pointed out that the older people felt lonely and got little help especially when they lived separately from adult children/grandchildren or became widowed. The participants also acknowledged they did not provide enough support to older people with

230 type 2 diabetes. They attributed this mainly to a heavy workload, and said otherwise they could provide more help. For example, one nurse said

“Those elderly talked with me without stop when I made home visits. I had a tight schedule and had to stop them”.

The participants were not satisfied with some “support and help”. One nurse expressed that “to my knowledge, where the elderly people feel satisfactory may not be good for the treatment of diabetes. Many children live separately from their parents and only come to visit during weekends. They bring with them fruit and dine out. This is not good, breaking the diets. Effective support is to remind them from time to time, collect some useful information, or buy blood glucose tester, but such case is few”. In addition, some participants worried about the uncontrolled communication among older people with type 2 diabetes, because “What those friends told them is not necessarily right”.

More social support is needed

The participants believed that older people with type 2 diabetes needed more help from family members such as listening, consolation, encouragement, and supervision. Many thought family members should know more about diabetes self-management in order to provide effective

231 help. They suggested involving people around the patients in health education programs, saying “more education to the people around is needed.

Patient alone is not enough, must have the support from the family. “

The participants acknowledged the benefit for older people with type 2 diabetes to socialise with each other, learning from friends who faced same problems and managed well. They suggested organising peer patients in neighborhood. At the same time, they emphasised that potential communication of incorrect information among peers must be managed.

Some kind of structured peer support, which can integrate experts’ knowledge with peers’ understanding, was proposed.

The participants recognised the requirements of older people with type 2 diabetes, and expressed their willingness to strengthen monitoring, increase visit frequency, provide education and mind patients’ mood during daily work.

Help from community organisations was mentioned frequently. The participants hoped Community Committees could provide more support. For example, organising patient activities through arranging space and equipment, providing funds, and setting of a poster board. More attention

232 from government, such as providing a subsidy for blood glucose tests and related medicines, was advocated.

6.2.2.2 Confidence to practise self-management behaviours

When talking about confidence of the older people with type 2 diabetes in performing specific self-management behaviours and controlling their disease effectively, two categories of meaning emerged: Weak and short-term confidence and Factors influencing confidence.

Weak and short-term confidence

According to the participants interviewed, most felt pessimistic about the confidence of older people with type 2 diabetes. They suggested that older diabetics had only weak, if any confidence in themselves, and that such confidence did not last long. In addition, they recognised that “many elderly feel frustrated because they know what is right and just can not do it correctly”. As to confidence in specific aspects, the participants considered that older people with type 2 diabetes trusted themselves most in medication and diet control, but had weaker confidence in maintaining exercise. Other self-management practices, such as blood glucose testing and foot-care were

“not included in older diabetics’ concepts”, let alone being confident or not.

233 Influencing factors of confidence

Confidence varied from one person to another. The participants thought those with good economic status and physical conditions had more confidence. In addition, mood had a significant influence on confidence, just as one professional said “It will be okay when they are in high mood”.

Successfully accomplishing something and feeling the positive change in health would enhance confidence, which was described by the participants as some kind of “interaction among confidence, behaviour and health condition”. Successful examples, e.g. people being around, who successfully practise self-management, would contribute to confidence as well.

6.2.2.3 Self-management behaviours

Participants in both groups perceived that self-management behaviours of older people with type 2 diabetes were not good. In addition, they noticed that some people made compromises between the ideal and reality.

Variation in self-management behaviours

The performance of diabetes self-management behaviours was far from satisfying according to the interviews. Some participants used strongly

234 voiced words to express their discontent about the situation. They complained that older people with type 2 diabetes used many excuses to avoid practising self-management. In addition, they suggested those who were newly diagnosed, with a family history, and were well-educated might practise well.

The participants held various opinions on self-management of medication.

Some felt very optimistic, thinking “they are quite supportive on medicine”, while others were more cautious, saying “the patient is extremely reliant on the medicine, but not really takes the right medicine.” Common complaints included stopping medicines, adjusting the amount according to own judgement, or even prescribing for themselves.

The participants acknowledged that diet control received common interest.

“All knows the importance to control diet, mostly executed.” Even though, it might be one of the most difficult aspects and the practice was not good.

One man said “everyone claims he is caring about diet, but in fact it’s the worst part”. To many older people with type 2 diabetes, diet control was just

“not eating sweet and fruit”.

Practice in exercise was labelled as bad by the participants. They

235 complained older people with type 2 diabetes were not willing to be active.

As to blood glucose testing, the situation was even worse. The participants reported that older people with type 2 diabetes did not test blood glucose regularly. Though some patients were equipped with testers, they would prolong the interval between tests. Older people with type 2 diabetes did not practice foot-care according to the interviews. What has to be mentioned is, it seemed that the participants scarcely recommended their patients to have a thorough foot examination or refered them to a podiatrist.

Making compromise between ideal and reality

Diabetes self-management was perceived by respondents as being too complicated to be strictly followed. Many older people with type 2 diabetes tended to caliborate recommendations (make their own realistic principles), just practicing self-management as far as they can. This phenomenon was noticed by the participants. One lady described her mother-in-law’s experiences. “She tried. ``````but, after at most one week, she feel that it is too troublesome. Now, for each meal, she just estimates roughly, select those appropriate foods and eat a bit”.

The participants expressed understanding and held a positive opinion about this phenomenon, saying “trying is better than nothing”. They believed that

236 older people with type 2 diabetes, who had realistic expectations and practised flexibly, might be more likely to persist with self-management behaviours. Actually, they encouraged this in their daily practice intentionally. One general practitioner acknowledged that he would balance between what would be an ideal situation and what would be realistic goals for the patient. He said “I now set lower requirements for them, just ask them to control roughly…… encourage them do what they can do. For impractical parts, over the time, they will let it go.”

6.2.2.4 Barriers to self-management behaviours

The participants identified various barriers to self-management behaviours of older people with type 2 diabetes. Totally four categories emerged: Lack of perception of severity, Overdependence on and dislike of Western medicine, Role expectation, and Ineffective communication with health professionals.

Lack of perception of severity

If people perceived the possibility of severe complications in the near future, they may be more likely to change their behaviours. However, many older people with type 2 diabetes did not recognise the vulnerability for uncontrolled diabetes. In addition, many diabetics may feel asymptomatic at

237 the early stage, which strengthened the tendency to minimise the disease and subsequent causal attitude for self-management behaviours. The participants expressed their dissatisfaction as “diabetes does not show up on the face, many patients look just like normal people, and they feel so too and not care about the disease”. Some felt frustrated because “they did not cooperate with us when feel well” and “they always forget (to practice self-management behaviours) since they did not feel bad”.

Overdependence on and dislike of Western medicine

According to the participants, older people with type 2 diabetes relied heavily on (Western) medicine. Patients did not accept diabetes as a chronic disease, which requires significant lifestyle modification. They just wanted a cure to solve the problem permanently and to interfere with existing lifestyle least. Although medicine is not a cure, it is comparatively easy and can fit better in daily life. It is not strange that most patients valued medication more than any other prevention or monitoring strategies. Some participants said “as long as older people were taking medicine, other aspects are not very strict”.

What is contradictory is older people with type 2 diabetes actually did not like medicine. According to the participants interviewed, older people

238 thought long-term medicine was not good to human body. Old people had preference for TCM and health care products. The prevalence of cheating/exaggerating advertisement of similar products strengthened the misconception that TCM and related health care products are better than western medicine. Some participants complained that most participants did not inform doctors that they were taking such remedies, and they worried that use of these products might interfere with medication negatively.

Role expectations

In the Chinese culture, older people tend to take care of their adult children and/or grandchildren living in the home or spending extended periods of time there. The participants said though living with children would provide spiritual consolation, it also increased the burden of older people and might have a negative impact on self-management behaviours. For example, one nurse listed a tight schedule due to looking after grandchildren as a possible reason for lack of exercise among older people with type 2 diabetes. In addition, many participants confirmed that older people with type 2 diabetes tended to accommodate other’s tastes more when preparing dinner for whole family, which always lead to breaking their diet.

Ineffective communication with health professionals

239 The participants sensed older people with type 2 diabetes “have negative mood targeting health professionals and hospitals” to some extent. The limited time allocation due to heavy workload, high medical cost and inefficient medical system were listed as main reasons. In addition, many participants described their frustration that sometimes older people with type 2 diabetes did not trust them or follow their advice. Several mentioned

“he did not totally believe what I said” and “patients are not supportive when we make prescription because (they think) the hospital is making money from them”.

It is not strange to understand that, under such circumstance, some participants thought they would like to provide only professional instruction rather than any further support. Some expressed their attitude as

“Professional instruction shall be offered by professionals, support such as chatting, consolation should be offered by people around them”, and “it’s impossible for consolation due to not only limited time, but also emotional sense”. One acknowledged that in daily practice, “ it is better to process what I should do (prescription) , try not to touch intimate details”.

6.2.2.5 Advice for ongoing health education

The participants thought appropriate health education programs were

240 necessary, and two categories described their opinions: preferred delivery style and content of interest.

Preferred delivery style

As to the delivery style, the proposed program should be held in the neighborhood, be not too long per session, use various teaching strategies such as pictures and live cases, have expert’s attendance, and organised peer activity.

The participants strongly suggested that the program should be interesting, and practical to attract older people with type 2 diabetes. They mentioned previous failed examples, which were too theoretical. The participants also emphasised the support from Community Committee for such programs.

Content of interest

Relevant content, including severity of uncontrolled diabetes, basic knowledge for commonly used drugs, diet control, beneficial and appropriate kind of exercise, occurrence and treatment of hypoglycemia, and importance of blood glucose test were suggested by the participants.

What was mentioned frequently was that the content should be simple and practical, ideally as “an easy menu”. The participants stressed the necessity

241 to “do not intimidate patients at the beginning. Long-term practice, even roughly, will be much better than nothing”.

Furthermore, some participants pointed out that people who were more active would have more sources to confide in and likely to be more confident. They strongly suggested including mood control and communication skills in the program. They thought “elderly should communicate with outside” and “they should learn to take care of themselves, control mood and be optimistic in life”.

6.3 Discussion

In summary, the focus group discussions explored the experience of living with type 2 diabetes, and preferred health education, from perspectives of both older people with type 2 diabetes and community health professionals.

Five themes were drawn from both focus group discussion with older people with type 2 diabetes and focus group discussion with community health professionals, including social support, confidence to practise self-management behaviours, self-management behaviours, barriers to self-management behaviours, and advice for ongoing health education.

Although older people with type 2 diabetes and health professionals expressed broadly the same concerns, their points of view were not always

242 identical and different emphasis could be identified.

6.3.1 Social support

Older people with type 2 diabetes said that social support they received was acceptable, but indirectly expressed their dissatisfaction through eager expectations for more support. Their opinions were echoed by community health professionals’. However, as to the major sources of social support, there was a difference between the two groups.

Support from family members was mentioned most frequently by older people with type 2 diabetes and community health professionals. The importance of family members in providing informational, emotional, affectionate, tangible and interpersonal support was widely recognised.

However, both groups mentioned that sometimes family members knew little about diabetes and could not provide appropriate help, or even behaved non-supportively. The findings are somewhat consistent with previous studies, in which family members’ negative effects on self-management behaviours were also identified (DiMatteo 2004). Therefore, special emphasis should be placed on how to best utilise family members’ influences, and how to assist them to provide effective support. In this study, some community health professionals suggested involving significant others

243 (mainly family members) in a health education program. In addition, more propaganda through public media or in a residential area may be a useful strategy to increase people’s understanding of diabetes, and prepare them for providing adequate support when needed.

Both older people with type 2 diabetes and community health professionals valued support from peer patients. Normally, older people with type 2 diabetes can get informational, emotional, affectionate and positive interaction support from peers. This kind of support was precious since it focused on diabetes-related experiences, accompanied difficulties and specific management strategies. Peer support among people with the same chronic health problems has been found effective to improve health behaviours and health outcomes (Barlow and Hainsworth 2001; Auslander,

Haire-Joshu et al. 2002; Hildingh and Fridlund 2004). Organising peer group activities is a promising way to facilitate peer support. Older people with type 2 diabetes could find a source of social interaction, positive role models, warm encouragement and consolation through peer group activities.

However, the limitations of peer support can not be ignored. Although peers have expertise with the disease, they are not health professionals and might give incorrect information. Considering peers are usually viewed as reliable

244 and trusted information resources, incorrect communication among peers might have intensively negative effects. Community health professionals expressed their concerns and suggested managing peer communication to a certain extent. Their concern was not without foundation. According to the focus group discussions, cases of misconceptions, regarding issues such as hypoglycemia, spread and exaggerated by communication among fellow patients were found. Thus it is essential for health professionals to realise the significance of fellow patients, and to promote positive interaction among peers while decreasing potential risks. Structured peer group activities, which integrate professional attendance with positive peer communication, deserve more attention.

Although older people with type 2 diabetes expressed their trust in and expectation of health professionals, they complained about receiving limited support from this source. This perspective is in contrast to those community health professionals’. Community health professionals listed themselves, together with family members and peer patients, as important supporters for older people with type 2 diabetes. However, few could describe more details other than mentioning they had provided professional instructions. And some acknowledged that they did not provide enough support because of their heavy workload. It appeared that there was a considerable gap in what

245 older people with type 2 diabetes want and what community health professionals currently provide. What patients expected from health professionals was not only information about their disease, but also understanding and empathy. Rigorous prescription and routine guidance without a caring attitude was far from meaningful support. Health professionals are key members of the social network for people with chronic diseas, and it is well documented that health professionals can influence self-management behaviours (King, Schlundt, Pichert, Kinzer, & Backer,

2002; Mishra, Hansen, Sabroe, & Kafle, 2006)(King, Schlundt et al. 2002;

Mishra, Hansen et al. 2006). Thus, our findings implied that more effort or change in practice patterns is needed by health professionals in this aspect.

6.3.2 Confidence to practise self-management behaviours

In the current focus group discussions, self-efficacy was defined as being confident and having belief in oneself in practising self-management behaviours. According to the discussions of both groups, self-efficacy of older people with type 2 diabetes was not high in general, and in specific aspects.

What has to be mentioned is, both older people with type 2 diabetes and community health professionals did not talk much on self-efficacy. Although

246 some said that being confident is important to self-management, no one provided detailed information. It seemed that confidence was not recognised as a strong influencing factor of self-management behaviors by Chinese people. However, people reported many barriers related to self-management behaviours and the powerlessness to overcome such barriers. This view indirectly demonstrated a lack of self-efficacy. Therefore, the importance of self-efficacy could not be denied.

Bandura describes four sources of information that influence self-efficacy: vicarious experience, verbal persuasion, performance accomplishment and physiological feedback (Bandura 1997). Though some sources were not clearly stated, all of them were noticed by the participants. Firstly, the positive effect of exposure to successful examples nearby was mentioned frequently. Older people with type 2 diabetes described that role models increased their confidence and motivated them to practise better self-management behaviours.

Secondly, older people with type 2 diabetes reported verbal encouragement from family members and friends promoted their confidence. However, few mentioned such encouragement from health professionals. Interestingly, community health professionals did not report that patients’ confidence

247 could be increased by their persuasion, although they pushed patients to do self-management behaviours. It seemed that health professionals’ words did not act as effective encouragement. This is not strange considering health professionals were not perceived as intimate supporters by older people with type 2 diabetes. A health professional’s motivation might be paternalistic, which was more like a prescription rather than warm encouragement, and consequently could not strengthen patients’ confidence. In order to enhance confidence through verbal encouragement, building more equalised, cooperative relationship between health professionals and patients would be necessary.

Thirdly, performance accomplishment is the most effective vehicle for developing self-efficacy while performance failure undermines it (Bandura

1997). The effect of performance accomplishment was noticed by both groups, although there was difference between their points of view. Older people with type 2 diabetes described their experience of failure, which influenced their confidence negatively. In contrast, community health professionals did not sense patients’ difficulty. They seemed to be more optimistic, describing the positive “interaction” among confidence, behaviours and health condition. One possible explanation for the difference is patients might be unwilling to discuss their frustration with health

248 professionals since they perceived it as their own failure. Although perfect diabetes self-management is a hard-to-reach long-term task, achievement of some short-term goals can also provide people with positive experience and confidence enhancement (van de Laar and van der Bijl 2001). In order to boost patient’s confidence, health professionals could facilitate the identification and achievement of short-term realistic goals, which should be tailored to specific life circumstances. However, according to our findings, community health professionals rarely use the strategy to assist patients to experience fulfillment of behaviour change.

Finally, the effect of physiological interpretation was noticed by both groups as well. Health professionals mentioned the fluctuation of confidence due to mood, and older people with type 2 diabetes described how physical/emotional conditions hinder their effort to practise self-management behaviours. It should be health professionals’ responsibility to assist older people with type 2 diabetes to recognise their emotional /physiological status and interpret the feedback positively.

6.3.3 Self-management behaviours

Both older people with type 2 diabetes themselves and community health professionals discussed major aspects of diabetes self-management

249 behaviours, including medication, diet control and exercise. However, health professionals were more concerned about frequency of blood glucose testing.

The comments on self-management behaviours were divergent between older people with type 2 diabetes and health professionals, especially for medication and diet control. Older people with type 2 diabetes perceived that they did very well in managing medication. However, community health professionals were more cautious, pointing out noncompliance behaviours, such as missing tablets, not taking medicine and self-adjustment of dosages. Actually, these behaviours were confirmed by older people with type 2 diabetes. What is interesting is that they held optimistic views on medication while their noncompliance behaviours were not unusual.

Furthermore, many older people with type 2 diabetes thought they adopted diet control, while community health professionals were sceptical about this.

Health professionals attributed the exaggerated self-evaluation of diet control to misconceptions in this area. For example, some people incorrectly equated diet control to just cutting out sweet food. According to our findings, patients’ standard of self-management in medication and diet control is questionable and needs further exploration.

250 Older people with type 2 diabetes admitted that their performance was not good in exercise and blood glucose testing. This opinion coincided with community health professionals’. Furthermore, foot-care is a problem since few patients spontaneously discussed it and health professionals pay little attention to it in their daily work. Since all these regimens play a fundamental role in diabetes control, health education targeting these behaviours is necessary.

Achieving good self-management for type 2 diabetes is not easy, and involves comprehensive behaviour change that impacts on almost every aspect of life. Many older people with type 2 diabetes persisted in self-management practice while having more realistic criteria. This adaptation was noticed and encouraged by community health professionals.

A growing body of evidence suggests that long-term practice would be enhanced if people with chronic disease could flexibly integrate management principles into their personal circumstance (SigurardÃ³ttir,

2005; Weiner, Helfrich, Savitz, & Swiger, 2007; Whittemore, Chase,

Mandle, & Roy, 2002). Hence, facilitating the modification process instead of intimidating older people with type 2 diabetes using strict unrealistic requirements should be emphasised.

251

6.3.4 Barriers to self-management

According to the focus group discussions, older people with type 2 diabetes faced multiple barriers in practising daily self-management behaviours, including physical, psychological, and social-environmental.

Some barriers were identified by older people with type 2 diabetes as well as community health professionals. These included overdependence on and/or dislike of Western medicine and role expectation. The consistency between patients and health professionals implied that these barriers had impeded self-management behaviours extensively and received close attention. Fortunately, cognitive factors, such as attitudes and knowledge, are changeable, and their negative effects on self-management behaviours could be reduced to a certain extent by well-designed health education. Role expectation involves broader social commitment. Although it is hard to change the whole social-environment, related coping strategies should be taught to older people with type 2 diabetes, which could help them to balance social expectations and self-management requirements without unduly sacrificing their own health.

Although some barriers were identified by the two groups, older people with

252 type 2 diabetes and community health professionals also considered different factors. Health professionals listed a lack of perception of severity as a big barrier, which was not echoed by patients. In contrast, older people with type 2 diabetes tended to describe other diversified problems, from physical/emotional condition, life attitude, reliance on own feelings, to various misconceptions. People living with diabetes had their own experiences, ideas and knowledge. There were specific reasons for them to follow or not follow self-management regimens. Therefore, it is better not to attribute poor self-management behaviours simply to lack of awareness.

Older people with type 2 diabetes might be aware of the importance of self-management; however, many other complicated factors influenced their final decision to do, or not to do something. Health professionals’ opinions implied that they were less sensitive to their patients’ problems and less likely to manage the problems effectively. More effort should be spent to further understand the obstacles faced by older people with type 2 diabetes.

Furthermore, deficits in communication between older people with type 2 diabetes and health professionals was identified as a big barrier by both groups. Interestingly, they perceived it in totally different ways. Community health professionals expressed their frustration that patients were not supportive. It seemed that, according to health professionals’ perspective,

253 when they, as authoritative experts, made recommendations, the patients had the obligation to carry it out. Otherwise, they would label the patients as uncooperative and tended to give up further effort. Some health professionals tended to attribute patients’ non-cooperation to their dissatisfaction toward the health care system. In contrast, older people with type 2 diabetes complained that what they received from health professionals was usually unpractical; either too generic principles or too complicated requirements. The problem became more obvious when opinions of both groups were examined further. Some professionals expressed that they preferred to finish routine process rather than add intimate details when communicating with patients. In addition, older people complained health professionals did not encourage them to ask questions and did not listen to them patiently.

The issues identified from both parts deserve careful consideration. Patients’ noncompliance might result from ineffective communication to a certain extent. Because of not understanding patients’ experiences, knowledge, and attitudes related to diabetes, health professionals might be unable to provide guidance tailored to the person’s life. This kind of guidance was too difficult to be integrated into daily life and finally older people with type 2 diabetes had to abandon it, which in turn frustrated the health professional’s effort.

254 Increasingly research is recommending that development of a partnership between health professionals and people with chronic disease, which means they share information and decision making with each other, is crucial to self-management (Holman and Lorig 2000; Beicher, Fried et al. 2006).

Therefore, the communication skills of both patients and health professionals should be improved, and some strategies would be necessary to promote effective communication.

6.3.5 Advice for ongoing program

As to preferred delivery style of ongoing programs, there were strikingly similar views between older people with type 2 diabetes and community health professionals, such as being held in the neighborhood and using various teaching strategies. They also listed similar preferred content, such as diet, exercise, medication and blood glucose testing. They strongly advocated that the contents must be understandable and practical. In addition, older people wanted to know more about TCM and related health care products. Education programs must accommodate the potential audiences’ interest. Considering older people with type 2 diabetes had a preference for TCM rather than Western medicine, discussion on TCM would also provide a good chance to clarify possible misconceptions.

255

Both older people with type 2 diabetes and community health professional suggested asking Community Committees to provide help with delivering of health education programs. Community organisations can provide convenient support such as calling people, building residence network, and arranging gathering place. Collaboration with them would best facilitate the process of community-based education and maximise its influence. Under such circumstances, cooperation with such organisations for community-based health education program is a feasible model of intervention in China.

6.4 Conclusion

Focus group discussion is a good method to explore people’s opinions and attitudes collectively. The group interaction is helpful to produce data and insights that would be less easily captured by individual interviews. It is well known that people with chronic disease and health professionals may have different expectations, strategies and evaluation criteria related to self-management behaviours. By integrating both patients’ and professionals’ points of view, a better understanding can be developed.

In summary, based on the focus group findings of the study, several

256 strategies for development of a practical education program were identified.

Firstly, the performance of exercise, blood glucose testing and foot-care was poor. In addition, there was controversy on evaluation of medication and diet control. Since these are key regimens in diabetes self-management, and there is a need for further improvement, future health education should target these aspects.

Secondly, in order to achieve optimal self-management, older people with type 2 diabetes face multiple physical, psychological, and social-environmental barriers in their daily life. Unfortunately, some of the barriers were not identified or interpreted appropriately by health professionals. Instead of warning patients about the prospect of complications and setting unrealistic requirements, education interventions should involve patient as partners in management of their disease, being sensitive to their needs and difficulties and providing practical help to deal with barriers.

Thirdly, the importance of social support and self-efficacy was demonstrated clearly in our findings. Unfortunately, the current situation was not satisfactory. Previous research in diabetes and other chronic disease supports

257 the positive effect of social support and self-efficacy on performing specific health behaviours and subsequent health outcomes (Temple 2003; Garvin,

Cheadle et al. 2004). Hence, future health education should encompass strategies to enhance self-efficacy and social support, such as achieving positive experiences and building support groups.

Finally, older people with type 2 diabetes and community health professionals expressed their preference for an ongoing health education program, including delivery style and content of interest. Their preferences should be integral to health education design. Furthermore, according to their suggestion, collaboration with community organisations appeared to be an effective way to promote and implement a community-based health education program.

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Chapter 7 Peer-Led Self- Management Program

This chapter describes in detail the self-management program for older people with type 2 diabetes to be implemented in Shanghai, China. It begins with a brief review of the theoretical framework and basis for the program.

Then the original plan for the program and related peer leader training is provided. The process of pilot testing and implementation is discussed as well.

7.1 Development of the program

The development of the program was based on the integration of principles from the selected theoretical framework, educational needs of older people with type 2 diabetes derived from the findings of the focus group discussions reported in Chapter Six, and a comprehensive literature review.

In addition, this program drew on the experiences of previous relevant studies (Shortridge-Baggett 1995; Lenz and Shortridge-Baggett 2002).

Social Cognitive Theory (SCT) was used as the framework for this study, which provided a substantial theoretical basis for developing, implementing

259 and evaluating the whole program. According to SCT, human behavior is affected by personal factors, environmental factors, and attributes of the behaviour itself (Bandura 1977; Bandura 1986). There is a constant interactive process among these three attributes. Among personal factors, self-efficacy is the most predictive of behaviour change. In addition, social support is one of the key factors of the social environment that influences behaviour (Levy 1983; Terborg, Hibbard et al. 1995). Therefore, for behavioural change to take place, self-efficacy relevant to that behaviour must be enhanced and social support must be strengthened. A detailed overview of the conceptual framework has been presented in Chapters One and Three. Self-efficacy can be influenced through four sources: performance accomplishment, vicarious experience, verbal persuasion, and physiological feedback (Bandura 1997). Social support includes five core functional aspects: tangible, affective, positive interaction, emotional and informational support (Sherbourne and Stewart 1991), and increase in social support can be realised through improving these aspects.

It is well known that people with chronic disease and health professionals may have different expectations toward self-management behaviours and related education. By integrating points of view from both sides, a better understanding of education needs may be developed. Therefore, focus group

260 discussions were organised for older people with type 2 diabetes and community health professionals, respectively. Focus group discussion is a good method to explore people’s opinions and attitudes, and the group interaction is helpful to produce data and insights that would be less easily captured by individual interviews (Krueger and Casey 2000). Based on the focus group findings of the study, several implications for development of a practical education program were identified. The detailed results of the focus groups have been reported in Chapter Six. In brief, the performance of self-management behaviours was not perceived to be good and especially poor in areas such as blood glucose testing and foot-care. Older people with type 2 diabetes faced multiple physical, psychological, and social-environmental barriers in their daily management of the disease. The importance of social support and self-efficacy was verified by these participants. Specific preference and suggestions for ongoing health education programs were expressed.

In addition, a comprehensive review of the literature of previous studies was conducted, which provided further information, such as varied predicting functions of self-efficacy/social support in diabetes self-management, characteristics of successful self-management education programs, practical strategies to influence self-efficacy and social support, and particularly the

261 current studies on type 2 diabetes self-management education in China. This information was used to make the program relevant, practical and feasible.

Based on the integration of principles from the theoretical framework, results of the needs assessment and literature review, and drawing on the work of Shortridge-Baggett and colleagues (Shortridge-Baggett 1995; Lenz and Shortridge-Baggett 2002), a peer-led self-management program for older people with type 2 diabetes living in the community in China was developed.

7.2 Aim of the program

The aim of the program was to facilitate people’s self-management behaviours and improve health outcomes through influencing self-efficacy and social support.

7.3 Plan of the program

The program used in this study was a community-based peer-led self-management program. Two important concepts, social support and self-efficacy were incorporated into the design, implementation and evaluation of the program. Enhancement of social support and self-efficacy was expected to be mainly realised through peer-led activities. However,

262 due to the nature of diabetes, self-management may require professional knowledge and skills, such as blood glucose testing and hypoglycemia treatment. It would be difficult for peer leaders without specialised experience in health to deliver such content. Thus in order to be safe and realistic, this program was designed to be a package, consisting of basic diabetes instruction (BDI) and social support and self-efficacy enhancing group (SSS) activities. The BDI would consisted of education sessions delivered by health professionals, while the SSS activities were led by peer leaders.

As the program was peer-led, and peer leaders were expected to assist in most of the delivery process, appropriate selection, training and support of peer leaders was necessary. Specific training for peer leaders was an indispensable part of the whole program, and is discussed in detail later in this chapter.

7.3.1 Education for older people with type 2 diabetes

7.3.1.1 Basic diabetes instruction (BDI)

Due to limited health care resources in China, especially in public health and community services, it was most feasible for BDI to be delivered by health professionals in a large-group format. It would be best if BDI was

263 delivered by community health professionals since they were more familiar with the community environment. However, according to findings of focus group discussions, older people preferred the presence of “experts” (health professionals from high level hospitals or medical schools). Therefore, in order to attract and retain participants, it was decided that the BDI would be delivered by health professionals from medical schools, instead of community health professionals, and their task would be to pass on professional knowledge and skills related to diabetes self-management. The

BDI consisted of a forty-minute education class each week, for four consecutive weeks. Diverse topics were covered, such as diet control, exercise, foot care and medication. A detailed outline is shown in Table 7.1.

Various instruction methods were utilised in the education sessions to promote social support and self-efficacy as far as possible. For example, demonstration and return-demonstration of self-administered blood glucose testing allowed participants to practise the skill as well as increase self-efficacy through performance accomplishment. Visual aids, such as pictures of appropriate meal arrangement, were used to deepen their understanding and provide vicarious experiences. Practice of stress management skills such as meditation and muscle relaxation let participants learn how to deal with their own physiological/emotional response

264 positively.

Table 7.1 Main topics of Basic Diabetes Instruction (BDI)

Diabetes: What it is Target blood glucose ranges Influencing factors of blood glucose Week 1 Components of diabetes control Commonly used medications and traditional Chinese medicine Benefits of diet control How to choose healthy food Week 2 How to measure food and make your own food plan Cooking & Chinese recipe example Eating out & holiday eating Benefits of exercise What kind of exercise is appropriate (including Taichi, Fan dancing) Week 3 How to get started Common barriers and possible solution for exercise Special attention: hypoglycemia and treatment Severe complication of diabetes Common diabetes foot problems How to take care of your feet Week 4 How to take care of your skin Harm of stress Stress management and relaxation techniques

During each session, approximately 10 minutes were allocated for group discussion and/or questions and answers. Participants were encouraged to express their concerns and the health professional provided an immediate response. Through timely communication with health professionals, participants received more practical information support. Furthermore, for participants who might face similar difficulties, the question and

265 discussion part allowed them to draw on others’ experience, and to strengthen mutual support.

Handouts of education content were given out at each session. The handout would contained the main topics covered in the session, and was helpful for participants to remember what they had learned. In addition, the handout provided hands-on activities, tips to cope with common barriers, and some false and true exercises. These learning materials were expected to involve the learner and to reinforce knowledge and skills addressed during BDI. In order to facilitate use of the handouts among participants, the handout was printed in a large font size and interesting pictures were inserted.

The BDI sessions were held at a community gathering place, such as a community centre, senior activity room or community health clinic.

Considering that participants had different preferences for time and place arrangements, BDI was delivered separately to four groups. Each group had a different time schedule and was held in a different place. Therefore, participants could choose a group that was convenient, accessible and conducted at a time convenient for them.

Older people with type 2 diabetes (general participants) attended BDI

266 sessions together with identified peer leaders. These classes provided a useful basis for further education on social support and self-efficacy, as well as a good opportunity for these people to get more acquainted.

7.3.1.2 Social support and self-efficacy enhancing group (SSS) activities

In addition to the BDI class sessions, participants were required to attend the second part -- a peer-led group for further education and activities. The purpose of SSS activities was to provide social support and to promote self-efficacy.

The peer-led groups consisted of peer leaders and general participants, ie., peers. These groups were formed by community health professionals, taking into consideration residency distance, gender and familiarity with each other.

After the original assignment of groups, both peers and peer leaders’ opinions were asked, such as whether the assignment was convenient for them, and whether they got along well with peers/peer leaders in the group.

If they were not satisfied with the current arrangement, they could choose the most convenient group and adjustment was made in accordance with their wishes.

267 The SSS activities were scheduled from the first week, and would start at the same time as BDI. The aim was to give sufficient time for group members to become familiar with each other and to promote cohesion among the group. The SSS activities continued throughout the study, lasting

12 weeks.

The SSS activities included: 1) frequent informal contact, which started from the first week and continued throughout the whole study, and 2) collective peer group meetings, which were held fortnightly from the fifth week to the twelfth week (end of the study). Time arrangement for the SSS activities is shown in Table 7.2.

Frequent informal contact meant that peer leaders were encouraged to contact peers frequently in smaller groups (4-5 peers) or individually, and in informal ways. Each peer was contacted by peer leaders at least once a week.

This kind of communication occured at various times and places, such as chatting in the residency garden, during morning exercise period, chatting on the telephone or at the food market. Peer leaders were not asked to keep detailed records for informal contacts; however, in order to ensure that such informal contacts really happened, peer leaders were asked to review their work during the last weeks on each specific/follow-up training session. The

268 researcher/health professionals presenting in the BDI or collective meetings also collected feedback from general participants about this.

Table 7.2 Time arrangement of the self-management program (BDI + SSS)

SSS activities Time BDI Frequent informal (week) Collective meeting contacts 1st Session One 2nd Session Two rd

3 Session Three Throughout the period 4th Session Four 5th 6th Meeting One 7th 8th Meeting Two 9th 10th Meeting Three 11th 12th Meeting Four

In addition to frequent informal contact, four fortnightly collective meetings were organised for each group. Peer leaders selected topics, planned for activities, and moderated group discussions. It was expected that each collective meeting would take around 45 minutes. Selected topics should be helpful to reinforce understanding of BDI, or cater to peers’ interest and concerns. It was expected to be challenging for the peer leaders to guide such meetings at the beginning. Therefore, the agenda for the first collective meeting was drafted by the researcher. Peer leaders could follow the agenda

269 if they were not confident enough to design the meeting by themselves. In addition, the agenda provided an example for peer leaders to plan for upcoming meetings. After the first meeting, peer leaders were encouraged to undertake this activity independently.

According to focus group discussion findings, participants look forward to health professionals’ help in verifying information. In order to provide professional support if needed, the researcher and/or one community health professional were present at all the collective meetings. One assigned community nurse assisted with the arrangements for these collective group meetings. Normally, these meetings were held at a community gathering place, such as community centre, senior activity room, or community health clinic. All of the places were selected for convenient accessibility for the older people, and would be within 20 minutes walking distance.

The SSS activities aimed to strengthen social support and promote self-efficacy, which was the emphasis of the whole program. Based on the theoretical framework, several principles were used to enhance self-efficacy as well as social support. The related strategies used are shown in Table 7.3.

Previous studies provided important experiences related to peer education

270 programs (Dunn, Steginga et al. 1999; Earp and Flax 1999; Gammonley and

Luken 2001; Dennis, Hodnett et al. 2002; Hibbard, Cantor et al. 2002).

Based on these studies, many activities were designed for the peer groups in the current study. These activities included several self-efficacy and/or social support enhancing strategies, and are detailed in the following paragraphs.

“Modeling by peer leaders” was used throughout the program. Peer leaders were older people with type 2 diabetes, living in the same community and non-health-professionals. They were similar to the general participants, so their success in diabetes self-management provided vicarious learning and raise self-efficacy of the others. They could describe their experience of day-to-day self-management with peers, including difficulties, adapting process and achievements.

271

Table 7.3 Strategies for enhancing self-efficacy and social support Theory framework Demonstrated by strategies y Immediate practice of behaviours learned in the program, such as blood glucose testing; y Set achievable goals; Performance y Use continuous glucose testing / accomplishments pedometers/ activity logs to provide feedback; y Discuss self-management accomplishment, and attribute it to each individual’s own efforts; Self-efficacy y Use peer leaders as role models; (Bandura y Share successful self-management 1997) Vicarious stories among peers; experience y Demonstration of specific skills, such as food selection; y Describe the benefits of diabetes Verbal self-management; persuasion y Provide verbal encouragement of process; y Discuss strategies for dealing with Physiological stress and depression, such as feedback self-talk and muscle relaxation; y Active listening; Emotional y Sharing experience support y Encourage and make positive comments about behaviour change; y Express empathy and trust; Affectionate Social y Develop close peer relationship support support within group; (Sherbourne Informational y Provide diabetes related information; and Stewart support 1991) y Bridge the communication with health professionals; Tangible support, y Facilitate the use of community health resources; Positive y Group activities, such as exercise interaction group.

272 “Contracting and reporting” encompasses several aspects and was used frequently in the peer group activities. Participants were encouraged to set achievable goals for the following week. Goal setting is a process of discussion and negotiation with others. Peer leaders used verbal persuasion to promote it. Furthermore, utilisation of blood glucose test/ pedometers/ activity logs was promoted in order to provide feedback. Participants were provided with a self-management record sheet, which could be used as a reminder to record how many days during the past week they had performed each self-management behaviour. Each week, participants were encouraged to report their own accomplishments to peers, and provide feedback on problems encountered. This reporting ritual was to create a sense of mastery when goals were attained (performance accomplishment). In some instance, when goals were not attained, peers could also share the difficulties in the process and possible ways to address it. Thus social support was strengthened and perceptions of failure was minimised.

“Small-size or individual counseling” was organised by peer leaders from time to time. The topic of this gathering was determined by each individual.

Through this counseling, peers could get the opportunity to clarify and reinforce what had been learned in the class. Furthermore, because peers shared the same status and had same concerns, it was possible to discuss

273 issues, which might normally be too sensitive, personal, or in-depth to be covered in front of many people. Their opinions could be listened, respected and responded to by peers.

It was thought that “bridging between formal health care and peers” would be an important task for peer leaders. Since peer leaders worked corporately with health professionals, they could communicate with health professionals more equally and effectively. They could convey information from peers to community health care system and facilitate the utilisation of these services.

7.3.2 Selection and training of peer leaders

Peer leaders played a crucial role in the delivery of the program. In order to fulfill their responsibilities, peer leaders were carefully selected and well prepared. The inclusion criteria and selection procedure for peer leader has been reported in Chapter Five. In this section, the details of specific training for peer leaders are discussed.

Peer leader training was conducted continuously at three levels. Firstly, before leading a peer group and delivering SSS activities, all prospective leaders underwent a half-day of pre-training. This training took place one week before the main education session started. In the pre-training, the

274 researcher and all peer leaders discussed the objectives of this program, the personal experience of living with diabetes, peer leaders’ roles and basic communication skills. The purpose was to form a friendly cooperation bond between researcher and peer leaders; to clarify the responsibilities and set schedules for peer leaders.

Secondly, peer leaders received the same BDI education class provided by health professionals with general participants. In addition, every week following the class, peer leaders received one hour of separate training delivered by the researcher. This ensured that peer leaders received one hour and forty minutes of training, per week for 4 consecutive weeks. It was expected that the extra training would reinforce the skills and knowledge learned from the BDI. Furthermore, in this training, peer leaders were taught and practised active listening skills, group teaching and individual teaching activities, negotiation skills and goal-setting skills. The detailed time arrangement for peer leaders training is demonstrated in Table7.4.

Thirdly, when the four-week intensive training was completed, peer leaders participated in bi-weekly follow-up training, usually for one hour. The follow-up lasted for another 8 weeks, until the end of this study. The follow-up training was organised by the researcher. The purpose was to

275 provide opportunity for giving feedback to each other and discussing / resolving difficulties, as well as supervision for progress of the program.

Table 7.4 Time arrangement of peer leaders training

Task of peer leaders Training for peer leaders (leading SSS activities) Time Leading Initiating (week) Specific training for BDI Collective informal peer leaders Meeting contacts Pre-week Pre-training 1st Session 1 Training 1 2nd Session 2 Training 2 3rd Session 3 Training 3 Throughout the period 4th Session 4 Training 4 5th 6th Follow-Up Training Meeting 1 7th 8th Follow-Up Training Meeting 2 9th 10th Follow-Up Training Meeting 3 11th 12th Follow-Up Training Meeting 4

In order to facilitate the training process, a peer leader training manual was developed and distributed to peer leaders. This manual included introduction of the peer leaders’ role, peer education techniques, and scenarios of type 2 diabetes self-management. The manual is partially presented in Appendix 6, and the main topics are listed in Table 7.5.

276

Table 7.5 Main topics of peer leader training z Concept of peer, peer education, and peer leader z Duties of peer leaders Half-day Pre-week z Work style of peer leader Pre-training z Possible strategies for peer group activity z Overview of training agenda Session one z Topic 1 – introduction and warm-up z Topic 2 – first diagnosed with diabetes Week 1 z Topic 3 – record of BGL results z Topic 4 – how about your BGL z Topic 5 – skills for asking questions & starting a discussion Session two z Topic 1 – review of last week z Topic 2 – symptoms of diabetes Week 2 z Topic 3 - complications of diabetes z Topic 4 – management of diabetes z Topic 5 – diet & exercise goal setting; Skills for Specific goal-setting Training Session three for Peer z Topic 1 – review of last week Leaders z Topic 2 – worsening condition Week 3 z Topic 3 – medication use & foot care z Topic 4 – medication use & foot care goal setting z Topic 5 – skills for negotiation Session four z Topic 1 – review of last week z Topic 2 – emotional experience z Topic 3 – influence of stress Week 4 z Topic 4 – techniques for stress management z Topic 5 - skills for presenting information & receiving feedback z Topic 6 – my most memorable moment during these sessions Week 6 Follow-up Week 8 z Continuing supervision and support Training Week 10 Week 12

277

The emphasis of the manual was to help peer leaders reinforce understanding of type 2 diabetes self-management, and demonstrate useful communication techniques such as group presentation, and self-efficacy and social support enhancing strategies such as goal-setting and active listening.

Various teaching methods, such as group discussion, role play, true and false exercises were used during peer leader training. Everyone had the opportunity to practise, and feedback was given to peer leaders.

In brief, the detailed plan for both BDI and SSS activities, including delivery procedures and education contents and strategies were carefully designed. The selection and training plan for peer leaders was developed as well.

7.4 Pilot study

A complete pilot of the whole program was not possible due to both insufficient time and human resources. Hence, a small pilot test was carried out. The pilot aimed to 1) examine the feasibility of delivery procedures for the program, and 2) check the length of time for participants to complete the study measures .

278 In order to do the pilot, at least one peer group, including 2 peer leaders and

10-15 general participants (peers), would be established. In addition, since the peer leader training used strategies such as role play and games, it would be impossible to test these with only 2 peer leaders. Therefore, at least 4 peer leaders (2 pairs) were necessary for the pilot.

Fourteen individuals, including 4 possible peer leaders and 10 older people with type 2 diabetes were recruited for this pilot. This sample was drawn from the same sites for the main study. One BDI session, one peer leader training session, and one SSS activity (collective meeting) were tested. The

BDI session went smoothly, lasting for about 50 minutes. Participants showed interest in the education content and interacted well with the health professional and fellow members. They suggested that the handout should be more detailed, covering every point mentioned in the education.

Therefore, they could remember what they had learned after the education, and could also help family members and /or friends understand more about diabetes. The chance to ask questions was appreciated by the participants.

However, it appeared that more attention on how to balance the time between question/ discussion and lecture was needed.

The peer leader training session lasted around 40 minutes, a bit shorter than

279 expected. Considering only 4 peer leaders attended the pilot training, the discussion and group activities, such as role play, took less time than in a larger group. Therefore, the short duration was acceptable. Generally, peer leaders were supportive of the training style. Provided scenarios made them examine their own behaviours and raised related discussion spontaneously.

They liked the topic of communication skills, thinking it useful for their future responsibilities. The training manual was viewed as useful, providing them with examples to initiate discussion and /or organise group activities.

The SSS activity (collective meeting) lasted about 50 minutes. Peer leaders moderated the meeting according to a prepared agenda. The meeting went smoothly. However, several points deserved more attention for later implementation. Firstly, the emphasis of such a meeting was to promote communication and mutual support among peers instead of solely question and answer between peers and health professionals/peer leaders. More effort was needed to encourage older people to get used to solving problems by themselves instead of relying on others. Secondly, peer leaders appeared cautious, tending to ask for health professionals’ verification from time to time. Reassuring peer leaders of their capability and assisting them to really take the lead role needed more consideration. Thirdly, though some questions were designed in advance for use in the collective meeting, it

280 seemed that peer leaders should be experienced in moderating discussion and adjusting emphasis according to the real situation.

All of the measures (described in Section 5.6.1.3) were administered by researcher / trained research assistant as described in Section 5.6.1.4. On average, it took 40 -50 minutes for participants to complete the measures

(investigator-administered).

The pilot study showed that the delivery procedures were feasible, without any confusing steps. The average time for conducting BDI class, SSS activities (collective meeting) and peer leader training was acceptable.

Where appropriate, participants’ suggestions were taken into consideration for implementation of the main study. Finally, the pilot study confirmed that the selected measure could be used without any concerns.

7.5 Main study

As described in Section 5.6.1.2, a total of 192 general participants were recruited for this study, with 96 in the experimental group and 96 in the control group. Additionally, 14 peer leaders were recruited as described in

Section 5.6.2. The experimental group received an intervention (i.e. a self-management program) while the control group received usual care. The

281 implementation of the intervention is discussed in detail as follows.

The BDI was carried out as described in Section 7.3.1.1. with 24 to 31 participants in each group.

In general, the SSS activities were carried out as described in Section

7.3.1.2. However, some minor adjustment was made. As mentioned before,

14 peer leaders and 96 general participants were recruited for the experimental group. After considering factors such as residency distance, gender, and familiarity, it appeared to be difficult to form peer groups according to the original plan (2 peer leaders and 10-15 peers each group).

Therefore, eight peer groups were established at the beginning; six groups comprising 12-14 peers and 2 peer leaders, and two peer groups comprising

7-8 peers and one peer leader.

One week later, feedback from peer leaders and general participants was collected. Peer leaders were cautious about their roles and preferred to share leader responsibilities with other leaders. In particular, the two peer leaders leading a group alone were afraid of possible mistakes and strongly preferred to work together. Furthermore, as BDI were delivered in a large-group format, participants attending the BDI together bonded and

282 were happy to be assigned to a larger peer group. Hence, in the second week, the 8 small groups merged into 4 large peer groups. Each group comprised

21 -27 peers, and was led by 3 or 4 peer leaders. The details are shown in

Figure 7.1.

Beginnin 1L 2L 2L 2L 2L 1L 2L 2L g + + + + + + + + (8 small 7P 12P 13P 14P 14P 8P 14P 14P groups)

2nd week (4 large 3L+21P 3L+22P 4L+26P 4L+27P groups)

4 L 3 L 3 L + 4 L + + 23 P + 4th week 20 P 21 P (2P withdraw; 28 P (1P (1P 1P transfer out (1P transfer withdraw) withdraw) to other in) group)

3 L 3 L 4 L 2 L + + + + 12th week 19 P 20 P 27 P 23 P (1P moved (1P moved (1P moved (2L lost) out) out) out )

L -- Peer leader P -- Peers (general participants)

Figure 7.1 Formation of peer groups.

283 During the study period, seven general participants were lost, and one general participant changed group because the time arrangement of her former group conflicted with her work schedule. Two peer leaders withdrew because of conflicts among peer leaders themselves. The details are shown in Figure 7.1.

The SSS activities proceeded as described in Section 7.3.1.2 and specific training for peer leaders was carried out as described in Section 7.3.2. In addition, peer leaders could contact a designated community nurse and the researcher for prompt support at any time.

Community organisations provided necessary support during the implementation process. Community Committees assisted with the arrangement of intervention sites, reminding participants and placing wall posters. Health professionals from the Community Health Service Centre presented in the collective meetings, communicated with participants, and collected feedback through daily work. In particular, the Community Health

Service Centre organised on-site blood glucose testing during BDI sessions and SSS (collective meetings). Therefore, the participants could access convenient blood glucose testing facilities in the neighborhood instead of walking a long way to the Community Health Service Centre and waiting a

284 long time for the test.

7.6 Summary

This chapter outlined the self-management program that was delivered to the experimental group in this study. The basis for the program development, the original education plan, the pilot procedure, and the implementation were presented. Effectiveness testing and evaluation results are reported and discussed in following chapters.

285

286

Chapter 8 Program: Effectiveness and Evaluation -- Participants Perspectives

This chapter presents the outcomes of the intervention study discussed in

Section 5.6.1. The chapter begins by describing sample size and attrition, then presents the participants baseline characteristics, with regard to demographic variables and major outcome variables, including social support, self-efficacy, self-management behaviours, depressive status, quality of life, and health care utilisation. This is followed by the outcomes of the trial of the intervention and participants’ evaluation of the peer-led self-management program.

8.1 Sample description 8.1.1 Sample size and attrition

A total of 192 older people with type 2 diabetes (general participants) were recruited for this study, with 96 in each group (see Section 5.6.1.2 for details). Eighty-nine and 92 participants completed the study in experimental and control groups, respectively (see Figure 8.1).

287

Quasi-experimental design

Experimental group Control group Baseline N= 96 N=96

Completed basic diabetes education(BDI) N=93 At 4wks N=92 (1 died; 2 moved to another area) (4 could not maintain time commitment)

Completed self-efficacy & social support N=92 At 12wks enhancement activity (SSS) (1 rejected the survey) N=89 (3 moved to another area)

Figure. 8.1 Flowchart of recruitment of general participants

8.1.2 Demographics

Among 192 older people with type 2 diabetes (general participants) recruited, 181 remained at the completion. Table 8.1 presents the demographic data of the overall sample.

288 Table 8.1 Demographic status of general participants

Percentages Variables N (100%) Male 73 40.3 Gender Female 108 59.7 Han Ethnic 174 96.1 Zhuang Ethnic 1 0.6 Ethnicity Hui Ethnic 2 1.1 Missing 4 2.2 None 10 5.5 Primary school 55 30.4 High school 93 51.4 Education Under-graduate 15 8.3 Post-graduate 3 1.7 Missing 5 2.8 Married 155 85.6 Separated 3 1.7 Windowed 16 8.8 Marital status Single 4 2.2 Divorced 1 0.6 Missing 2 1.1 With spouse 102 56.4 With children/grandchildren 33 18.2 Living With spouse & 35 19.3 arrangement children/grandchildren With others 4 2.2 Alone 7 3.9 Retired 164 90.6

Employment Unemployed 7 3.9 status Employed 8 4.4 Work after retirement 2 1.1 ≤500 4 2.2 500< ≤1000 77 42.5 Income 1000< ≤1500 83 45.9 (RMB/M) 1500< ≤2000 11 6.1 >2000 3 1.7 Missing 3 1.7

289 Table 8.1 Demographic status of general participants (cont)

Percentages Variables N (100%) ≤1Y 4 2.2 1< ≤2Y 28 15.5 Time 2< ≤5Y 25 13.8 since 5< ≤10Y 56 30.9 diagnosis > 10 66 36.5 Missing 2 1.1 Medicine 69 38.1 Lifestyle and/or other remedies 25 13.8 Treatment Medicine & lifestyle and /or others 86 47.5 Missing 1 0.6 With 90 49.7 CVD 63 Comorbity Other diseases 42 Without 90 49.7 Missing 1 0.6

8.2 Comparison between participants completing and those discontinuing the study 8.2.1 Demographics

There was no significant difference between participants who completed the study and those who did not for age, ethnicity, education level, marital status, living status, work status, income level, time since diagnosis, and type of treatment. However, a significant difference was found for gender. Those who withdrew (n=11) were predominantly female (n=10). In China, females take more house responsibility and have a relatively tighter schedule than males, which is a possible reason for the high proportion of females

290 withdrawing.

Table 8.2 Comparison between participants completing and those discontinuing the study by demographics

Completing Discontinuing Chi-square / Fisher’s

(N=181) (N=11) exact test n (%) n (%) x2 p Male 73 (40.3%) 1 (9.1%) 4.27 0.04 * Gender Female 108 (59.75) 10 (90.9%) Han Ethnic 174 (96.1%) 10 (90.9%) 4.25 0.38 Zhuang Ethnic 1 (0.6%) 0 Ethnic Hui Ethnic 2 (1.1%) 0 Missing 4 (2.2%) 1 (9.1%) Education None 10 (5.5%) 2 (18.2%) 5.87 0.24 Primary school 55 (30.4%) 4 (36.4%) High school 93 (51.4%) 4 (36.4%) Under-graduate 15 (8.3%) 0 Post-graduate 3 (1.7%) 0 Missing 5 (2.8%) 1 (9.1%) Married 155 (85.6%) 9 (81.8%) 3.76 0.62 Separated 3 (1.7%) 0 Windowed 16 (8.8%) 2 (18.2%) Marital Single 4 (2.2%) 0 Divorced 1 (0.6%) 0 Missing 2 (1.1%) 0 With spouse 102 (56.4%) 6 (54.5%) 1.66 0.76 With children/ 33 (18.2%) 2 (18.2%) grandchildren With spouse & Live children/ 35 (19.3%) 2 (18.2%) grandchildren With others 4 (2.2%) 0 Alone 7 (3.9%) 1 (9.1%)

291 Table 8.2 Comparison between participants completing and those discontinuing the study by demographics (cont)

Completing Discontinuing Chi-square / Fisher’s

(N=181) (N=11) exact test n (%) n (%) x2 p Retired 164 (90.6%) 11(100%) 0.71 1.00 Unemployed 7 (3.9%) 0 Work Employed 8 (4.4%) 0 Work after 2 (1.1%) 0 retirement <=500 4 (2.2%) 0 4.08 0.50 500< <=1000 77 (42.5%) 6 (54.5%) Income 1000< <=1500 83 (45.9%) 4 (36.4%) (RMB/M) 1500< <=2000 11 (6.1%) 0 >2000 3 (1.7%) 0 Missing 3 (1.7%) 1 (9.1%) < =1Y 4 (2.2%) 2 (18.2%) 7.92 0.12 1< <=2Y 28(15.5%) 0 Time since 2< <=5Y 25 (13.8%) 2 (18.2%) diagnosed 5< <=10Y 56 (30.9%) 3 (27.3%) > 10 66 (36.5%) 4 (36.4%) Missing 2 (1.1%) 0 Medicine 69 (38.1%) 4 (36.4%) 1.19 0.76 Lifestyle and / or 25 (13.8%) 2 (18.2%) other remedies Treatment Medicine & lifestyle and/or 86 (47.5%) 5 (45.6%)

other remedies 1 (0.6%) 0 Missing With 90 (49.7%) 6 (54.5%) 1.33 1.00 CVD 63 4 Comorbity Other diseases 42 2 Without 90 (49.7%) 5 (45.5%) Missing 1 (0.6%) 0

8.2.2 Baseline level of outcome variables

A total of six instruments were used to measure the outcome variables,

292 which were social support, self-efficacy, self-management behaviours, depressive status, quality of life, and health care utilisation (see Section

5.6.1.3 for details). There was no significant difference found between participants who completed the study and those who did not, for any of these outcome variables (see Table 8.3).

Table 8.3 Comparison between participants completing and those discontinuing the study by outcome variables

Completing Discontinuing t-test Group N=181 N=11 M SD M SD t p

Social Support

Overall Social Support 52.09 16.70 57.17 19.55 0.97 0.33

Tangible Support 80.77 22.45 72.16 32.04 0.88 0.40 Info & Emotional 38.62 20.33 46.88 24.96 -1.29 0.20 Support Positive Interaction 49.72 18.39 57.80 19.18 -1.32 0.19

Affectionate Support 52.95 17.63 59.85 20.00 -1.25 0.21

Self-Efficacy Overall SE 93.14* 16.41 95.64 8.33 -0.50 0.63

SE of Diet 24.65 4.91 25.73 3.74 -0.71 0.48

SE of Exercise 14.21* 4.27 14.36 4.41 -0.12 0.91

SE of Medication 12.90 2.48 13.09 2.02 -0.26 0.80

SE of BGL Testing 12.05 4.14 12.18 4.31 -0.10 0.92

SE of Foot-Care 16.01 3.37 16.91 3.18 -0.87 0.39 SE of Hyper- / 13.42 3.41 13.36 3.01 0.05 0.96 hypo-glycemia

293 Table 8.3 Comparison between participants completing and those discontinuing the study by outcome variables (cont)

Completing Discontinuing t-test Group N=181 N=11 M SD M SD t p Self-Management behaviours Overall SM 86.71* 15.48 82.91 17.21 0.79 0.43

SM of Diet 22.64 5.36 22.27 5.61 0.22 0.83

SM of Exercise 12.44 4.69 12.91 5.21 -0.32 0.75

SM of Medication 12.54 2.98 11.27 3.80 1.34 0.18

SM of BGL testing 11.87* 4.07 10.82 3.09 0.84 0.40

SM of Foot-Care 14.28 3.27 14.00 4.00 0.27 0.78 SM of Hyper- & 12.90 3.46 11.64 3.17 1.18 0.24 Hypo-glycemia Depressive status Overall Depressive 14.77 9.65 13.27 8.79 0.50 0.62 status Happy 5.00 3.18 4.73 3.17 0.28 0.79

Somatic 6.06 3.93 5.09 4.51 0.78 0.43

Interpersonal 0.57 0.96 0.36 0.67 0.72 0.48

Depressed affect 3.14 4.08 3.09 4.04 0.04 0.97

Quality of Life

PF 62.54 25.16 69.55 27.88 -0.89 0.37 RP 62.15 43.59 54.55 45.85 0.56 0.58 BP 78.06 24.13 72.79 29.11 0.09 0.93

GH 42.96 21.98 52.09 19.22 -1.35 0.18

VT 58.26 18.35 66.36 18.45 -1.42 0.16

SF 77.42 23.27 75.00 16.77 0.38 0.71

RE 67.77 44.57 72.79 19.12 -0.54 0.60

294 Table 8.3 Comparison between participants completing and those discontinuing the study by outcome variables (cont)

Completing Discontinuing t-test Group N=181 N=11 M SD M SD t p

MH 66.83 18.21 68.00 18.07 -0.21 0.84

PCS 42.43 9.41 43.73 7.62 -0.45 0.65 MCS 48.03 9.53 49.14 8.90 -0.38 0.71 Self-Perception of 40.83* 20.96 36.36 25.89 0.68 0.50 Health Transition Health Care

Utilisation Visits to doctor 3.25* 2.46 2.18 2.93 1.39 0.17

Visits to ER 0.01** 0.15 0 0 0.25 0.81 Visits to community 2.36* 1.86 1.73 2.28 1.08 0.28 Health centre Frequency of 0.01* 0.08 0 0 0.25 0.81 hospitalisation

Days of hospitalisation 0.02** 0.22 0 0 0.25 0.81

Note: * 1 datum missing , ** 2 data missing

PF= Physical function; RP= Role limitation due to physical health; BP= Bodily pain; GH= General health; VT= Vitality; SF= Social function; MH= Mental health; RE= Role limitation due to emotional problems; PCS= Physical summary scale; MCS= Mental summary scale

8.3 Homogeneity of sample 8.3.1 Demographics

The mean age of the experimental group (M= 70.67, SD=5.94) and control group (M=70.90, SD=7.29) were comparable, t (174.08) = -0.23, p =0.82.

295 There were no significant differences between the two groups for gender, ethnicity, education level, marital status, living status, work status, income level, time since diagnosis, and type of treatment. Details are shown in Table

8.4.

Table 8.4 Comparison between experimental group and control group by demographics

Experiment Control Chi-square / Fisher’s al (N=92) exact test (N=89) n (%) n (%) x2 p Male 33 (37.1) 40 (43.5) 0.77 0.38 Gender Female 56 (62.9) 52 (56.5) Han Ethnic 85 (95.5) 89 (96.7) 3.54 0.24 Zhuang Ethnic 1 (1.1) 0 Ethnic Hui Ethnic 0 2 (2.2) Missing 3 (3.4) 1 (1.1) Education None 4 (4.5) 6 (6.5) 2.08 0.87 Primary school 26 (29.2) 29 (31.5) High school 49 (55.1) 44 (47.8) Under-graduate 6 (6.7) 9 (9.8) Post-graduate 2 (2.2) 1 (1.1) Missing 2 (2.2) 3 (3.3) Married 81(91.0) 74 (80.4) 5.16 0.38 Separated 1 (1.1) 2 (2.2) Windowed 6 (6.7) 10 (10.9) Marital Single 1 (1.1) 3 (3.3) Divorced 0 1 (1.1) Missing 0 2 (2.2)

296 Table 8.4 Comparison between experimental group and control group by demographics (cont)

Experiment Control Chi-square / Fisher’s al (N=92) exact test (N=89) n (%) N (%) X2 P With spouse 55 (61.8) 47 (51.1) 3.44 0.50 With children/grandchil 13 (14.6) 20 (21.7) dren Live With spouse & children/grandchil 16 (18.0) 19 (20.7) dren With others 1 (1.1) 3 (3.3) Alone 4 (4.5) 3 (3.3) Retired 83 (93.3) 81 (88.0) 4.81 0.15 Unemployed 4 (4.5) 3 (3.3) Work Employed 1 (1.1) 7 (7.6) Work after 1 (1.1) 1 (1.1) retirement <=500 3 (3.4) 1 (1.1) 6.29 0.26 500< <=1000 33 (37.1) 44 (47.8) Income 1000< <=1500 42 (47.2) 41 (44.6) (RMB/M) 1500< <=2000 7 (7.9) 4 (4.3) >2000 3 (3.4) 0 Missing 1 (1.1) 2 (2.2) Time since < =1Y 3 (3.4) 1 (1.1) 2.05 0.89 diagnosed 1< <=2Y 15 (16.9) 13 (14.1) 2< <=5Y 13 (14.6) 12 (13.0) 5< <=10Y 25 (28.1) 31 (33.7) > 10 32 (36.0) 34 (37.0) Missing 1 (1.1) 1 (1.1)

297 Table 8.4 Comparison between experimental group and control group by demographics (cont)

Experiment Control Chi-square / Fisher’s al (N=92) exact test (N=89) n (%) N (%) X2 P Medicine 38 (42.7) 31 (33.7) 1.48 0.69 Lifestyle and / or 12 (13.5) 13 (14.1) other remedies Treatment Medicine & lifestyle and/or 38 (42.7) 48 (52.2) remedies Missing 1 (1.1) 0 With 42 (47.2) 48 (52.2) 0.38 0.50 CVD 28 35 Comorbity Other diseases 21 21 Without 47 (52.8) 43 (46.7_ Missing 0 1 (1.1)

8.3.2 Baseline level of outcome variables

There was no significant difference between the experimental and control groups for the outcome variables: social support, self-efficacy, self-management behaviours, depressive status, and health care utilisation.

However, the experimental group (M=81.7, SD=20.3) has significantly less pain than the control group (M=74.5, SD=27.4) , t (167.8) = 2.0, p =0.05. A summary of the results is presented in Table 8.5.

298 Table 8.5 Comparison between experimental group and control group by outcome variables

Experimental Control t-test Group N=89 N=92 M SD M SD t p

Social Support

Overall Social Support 51.89 18.40 52.29 14.97 -0.16 0.87

Tangible Support 80.48 26.38 81.05 18 -0.17 0.87

Info & Emotional Support 37.54 23.44 39.67 16.86 -0.70 0.48

Positive Interaction 50.70 19.57 48.78 17.22 0.70 0.48

Affectionate Support 53.65 20.98 52.26 13.71 0.53 0.60

Self-Efficacy Overall SE 93.04 * 17.07 93.41 15.83 -0.15 0.88

SE of Diet 24.44 5.95 24.86 3.66 -0.57 0.57

SE of Exercise 13.99 * 4.04 14.42 4.47 -0.69 0.49

SE of Medication 12.84 2.40 12.95 2.56 -0.28 0.78

SE of BGL testing 12.27 3.75 11.84 4.49 0.71 0.48

SE of Foot-Care 16.10 3.86 15.91 2.83 0.37 0.71 SE of Hyper- & 13.40 3.07 13.43 3.73 -0.60 0.95 Hypo-glycemia Self-Management Overall SM 86.39 * 16.80 87.01 14.19 -0.27 0.79

SM of Diet 22.48 5.55 22.79 5.20 -0.39 0.70

SM of Exercise 12.44 4.53 12.43 4.88 0.00 1.00

SM of Medication 12.58 2.78 12.49 3.17 0.21 0.83

SM of BGL testing 11.30 * 3.86 12.41 4.22 -1.85 0.07

SM of Foot-Care 14.45 3.70 14.12 2.80 0.67 0.50

SM of Hyper- & 13.03 3.11 12.76 3.78 0.53 0.60 Hypo-glycemia

299 Table 8.5 Comparison between experimental group and control group by outcome variables (cont)

Experimental Control t-test Group N=89 N=92 M SD M SD t p

Depressive status

Overall Depressive status 14.97 8.76 14.58 10.48 0.27 0.79

Unappy 5.27 3.19 4.74 3.17 1.12 0.26

Somatic 6.12 3.15 5.99 4.58 0.23 0.82

Interpersonal 0.62 0.97 0.53 0.95 0.60 0.55

Depressed affect 2.96 3.69 3.32 4.44 -0.59 0.56

SF-36

PF 62.53 21.04 62.55 28.70 -0.00 0.99

RP 62.08 41.48 62.23 45.77 -0.23 0.98 BP 81.70 20.34 74.54 27.43 2.00 0.05

GH 42.75 20.05 43.15 23.81 -0.12 0.90

VT 57.58 16.13 58.91 20.33 -0.50 0.63

SF 77.81 24.48 77.04 22.72 0.22 0.83

RE 65.92 42.93 69.57 46.27 -0.55 0.58

MH 66.25 19.42 67.39 17.04 -0.42 0.67

PCS 43.05 7.70 41.82 10.82 0.88 0.38

MCS 47.45 10.11 48.58 8.96 -0.80 0.43 Self-Perception of Health 42.42 18.62 39.29* 23.02 1.00 0.32 Transition

300 Table 8.5 Baseline level of outcome variables by group (cont)

Experimental Control t-test Group N=89 N=92 M SD M SD t p

Health Care Utilisation

Visits to doctor 3.27* 2.42 3.23 2.49 0.11 0.91

Visits to ER 0* 0 0.02* 0.21 -1.00 0.32

Visits to community health 2.44* 2.11 2.27 1.57 0.60 0.55 centre Frequency of 0.01* 0.11 0 0 1.00 0.32 hospitalization Days of hospitalisation 0.03* 0.32 0* 0 1.00 0.32

Note: * 1 datum missing

8. 4 Effectiveness of the intervention 8.4.1 Social support

Mean social support scores over time for both groups are presented in Table

8.6.

301 Table 8.6 Mean social support scores for experimental and control groups over time M SE group N M SD differen differen Sig.(a) ce ce Time 1 E 89 51.89 18.40 -0.40 2.49 .874 C 92 52.29 14.97 Overall Time 2 E 89 60.05 20.61 10.25 2.98 .001 * Social C 92 49.80 19.47 Support Time 3 E 89 68.86 21.02 17.13 3.23 .000 * C 92 51.73 22.32 Time 1 E 89 80.48 26.38 -0.57 3.35 .865 C 92 81.05 18.00 Tangible Time 2 E 89 77.95 24.21 -0.79 3.57 .826 Support C 92 78.74 23.75 Time 3 E 89 77.46 24.36 -3.18 3.34 .342 C 92 80.64 20.43 Time 1 E 89 37.54 23.44 -2.14 3.02 .481 Informati C 92 39.67 16.86 on & Time 2 E 89 50.60 23.72 14.66 3.45 .000 * Emotional C 92 35.94 22.76 Support Time 3 E 89 63.20 21.85 25.09 3.63 .000 * C 92 38.11 26.70 Time 1 E 89 50.70 19.57 1.93 2.74 .48 C 92 48.78 17.22 Positive Time 2 E 89 60.25 22.77 13.11 3.23 .000* Interactio C 92 47.15 20.64 n Time 3 E 89 69.17 22.79 19.78 3.45 .000* C 92 49.39 23.64 Time 1 E 89 53.65 20.98 1.39 2.78 .598 C 92 52.26 13.71 Affection Time 2 E 89 61.14 22.51 9.42 3.30 .004 * ate C 92 51.72 20.62 Support Time 3 E 89 72.10 22.27 19.47 3.54 .000 * C 92 52.63 24.58 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. E experimental group C control group

302 8.4.1.1 Overall Social Support

Ananlysis revealed a significant interaction effect of Group X Time, F (2,

178) =15.50, p<0.001, partial ŋ2=0.15, suggesting that Overall Social

Support for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =19.20, p<0.001, partial ŋ2=0.18, and a significant main effect for group, F (1,179) =14.71, p<0.001, partial

ŋ2=0.08, were revealed as well. As illustrated in the interaction plot (Figure

8.2), Overall Social Support improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but overall social support in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.6).

F8. 2

Cont r ol Group 60 Intervention Group

50 ver al l Soci al Suppor t O 40

30 123 Measur i ng Time

303 F8 3

60 ot i onal Suppor t

40 Infor & Em & Infor 30 123 Measur i ng Time

F8. 4

Positive Interaction Positive 40

30 123 Measur i ng Time

304 F8. 5

Af f40 ect i onat e Suppor t

30 123 Measur i ng Time

Figure 8.2 – Figure 8.5

Interaction plot of Group X Time for social support

8.4.1.2 Tangible Support

There was no significant interaction effect of Group X Time, F (2, 178)

=0.33, p> 0.05, partial ŋ2=0.004, suggesting that Tangible Support for the two groups was comparable over time. In addition, the main effect of time,

F (2, 178) =0.85, p> 0.05, partial ŋ2=0.009, and the main effect for group, F

(1,179) =0.33, p> 0.05, partial ŋ2=0.002, did not reach significance.

8.4.1.3 Information & Emotional Support

A significant interaction effect of Group X Time was revealed , F (2, 178)

=27.77, p<0.001, partial ŋ2=0.24, suggesting that Information & Emotional

305 Support for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =20.65, p<0.001, partial ŋ2=0.19, and a significant main effect for group, F (1,179) =24.32, p<0.001, partial

ŋ2=0.12, were revealed as well. As illustrated in the interaction plot (Figure

8.3), Information & Emotional Support improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Information

& Emotional Support in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.6).

8.4.1.4 Positive Interaction

A significant interaction effect of Group X Time was revealed, F (2, 178)

=15.15, p<0.001, partial ŋ2=0.15, suggesting that Positive Interaction for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =16.36, p<0.001, partial ŋ2=0.16, and a significant main effect for group, F (1,179) =22.50, p<0.001, partial ŋ2=0.11, were revealed as well. As illustrated in the interaction plot (Figure 8.4), Positive

Interaction improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at

306 time 1, but Positive Interaction in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.6).

8.4.1.5 Affectionate Support

A significant interaction effect of Group X Time was revealed, F (2, 178)

=13.08, p<0.001, partial ŋ2=0.13, suggesting that Affectionate Support for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =13.87, p<0.001, partial ŋ2=0.14, and a significant main effect for group, F (1,179) =17.06, p<0.001, partial ŋ2=0.09, were revealed as well. As illustrated in the interaction plot (Figure 8.5),

Affectionate Support improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Affectionate Support in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.6).

8.4.1.6 Summary

In summary, the results indicated that the intervention has been effective in improving social support for the experimental group. Therefore, the hypothesis (3.1.1) that there would be significant difference in level of social support between the experimental group and the control group across

307 the study period, is accepted. Furthermore, the results indicate that changes in Information & Emotional Support, Positive Interaction, and Affectionate

Support contributed most to the improvement in Overall Social Support, while Tangible Support maintained stable during the study period.

8.4.2 Self-efficacy

Mean self-efficacy scores over time for both groups are presented in Table

8.7.

Table 8.7 Mean self-efficacy scores for experimental and control groups over time

M SE Group n M SD differe differe Sig.(a) nce nce Time 1 E 88 93.32 16.97 0.08 2.45 .975 C 91 93.24 15.83 Overall Time 2 E 88 100.59 19.29 6.36 2.74 .021 * SE C 91 94.23 17.36

Time 3 E 88 101.25 21.47 8.20 3.12 .009 * C 91 93.06 20.22 Time 1 E 86 25.08 4.92 0.10 0.73 0.87 C 91 24.98 3.50 SE of Time 2 E 86 25.62 5.25 -0.03 0.87 0.97 Diet # C 91 25.65 5.79 Time 3 E 86 23.76 6.17 -1.50 1.03 0.15 C 91 25.22 7.27 Time 1 E 88 14.01 4.06 -0.42 0.64 0.52 C 91 14.43 4.50 SE of Time 2 E 88 14.28 4.56 0.67 0.68 0.32 Exercis C 91 13.62 4.48 e Time 3 E 88 14.09 4.96 0.47 0.74 0.53 C 91 13.63 4.96

308

Table 8.7 Mean self-efficacy scores for experimental and control groups over time(cont)

M SE Group n M SD differe differe Sig.(a) nce nce Time 1 E 85 13.04 2.12 0.02 0.35 0.94 C 90 13.01 2.43 SE of Time 2 E 85 13.40 1.95 -0.07 0.26 0.80 Medica C 90 13.47 1.50 tion Time 3 E 85 13.04 2.61 0.06 0.34 0.87 C 90 12.98 1.79 Time 1 E 89 12.27 3.75 0.43 0.62 .483 C 92 11.84 4.49 SE of Time 2 E 89 14.00 4.14 1.74 0.61 .005 * BGL C 92 12.26 4.11 testing Time 3 E 89 14.73 4.43 2.69 0.64 .000 * C 92 12.04 4.21 Time 1 E 89 16.10 3.86 0.24 0.50 .628 C 91 15.86 2.80 SE of Time 2 E 89 18.51 4.70 2.35 0.63 .000 * Foot-C C 91 16.15 3.67 are Time 3 E 89 19.45 4.73 3.19 0.69 .000 * C 91 16.26 4.51 Time 1 E 89 13.40 3.07 -.00 .51 .997 SE of C 91 13.40 3.74 Hyper-/ Time 2 E 89 15.34 3.79 1.87 .53 .001 * Hypo-g C 91 13.47 3.36 lycemia Time 3 E 89 16.55 3.72 3.32 .54 .000 * C 91 13.23 3.53 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. # Case deleted due to outliers in data

SE = self-efficacy

309 8.4.2.1 Overall Self-Efficacy

A significant interaction effect of Group X Time was revealed, F (2, 176)

=5.22, p<0.05, partial ŋ2=0.06, suggesting that Overall Self-Efficacy for the two groups was significantly different over time. A significant main effect of time, F (2, 176) =7.13, p=0.001, partial ŋ2=0.08, and a significant main effect for group, F (1,177) =4.72, p<0.05, partial ŋ2=0.03, were revealed as well. As illustrated in the interaction plot (Figure 8.6), Overall Self-Efficacy improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but

Overall Self-Efficacy in the experimental group was significantly higher than the control group at times 2 and 3 (Table 8.7).

8.4.2.2 Self-Efficacy of Diet

There were 3 outliers in Self-Efficacy of Diet data at time 1 and 2 outliers at time 2; totally 4 cases were deleted before further analysis. There was no significant interaction effect of Group X Time, F (2, 174) =1.20, p>0.05, partial ŋ2=0.01, suggesting that Self-Efficacy of Diet for the two groups was comparable over time. In addition, the main effect of time, F (2, 174) =2.16, p>0.05, partial ŋ2=0.02, and the main effect for group, F (1,175) =0.57, p>0.05, partial ŋ2=0.003, did not reach significance.

310

8.4.2.3 Self-Efficacy of Exercise

There was no significant interaction effect of Group X Time, F (2, 176)

=1.00, p>0.05, partial ŋ2=0.01, suggesting that Self-Efficacy of Exercise for the two groups was comparable over time. In addition, the main effect of time, F (2, 176) =0.38, p>0.05, partial ŋ2=0.004, and the main effect for group, F (1,177) =0.26, p>0.05, partial ŋ2=0.001, did not reach significance.

F8. 6

130

104

Cont r ol Group 78 I nt er vent i on Group

Overall Self-Efficacy Overall 52

26 123 Measur i ng Time

311 F8. 7

16 l ucose Test 12

8 SE SE of Bl ood G

4 123 Measur i ng Time

F8. 8

15 SE SE of Foot - Care 10

5 123 Measur i ng Time

312 F8. 9

20 ia ia

8 SE SE of Hyper / hypogl ycem

4 123 Measur i ng Time

Figure 8.6 – Figure 8.9

Interaction plot of Group X Time for self-efficacy

8.4.2.4 Self-Efficacy of Medication

There were 4 outliers in Self-Efficacy of Medication data at time 2 and 3 outliers at time 3; totally 6 cases were deleted before further analysis. The interaction effect of Group X Time, F (2, 172) =0.08, p>0.05, partial

ŋ2=0.001, and the main effect for group, F (1,173) =0, p>0.05, partial

ŋ2=0.000, did not reach significance. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at all three measuring times (Table 8.7). However, a significant main effect of time, F (2, 172) =4.72, p< 0.05, partial ŋ2=0.05, was found. Therefore, all

313 participants, regardless of experimental group or control group, changed over time.

8.4.2.5 Self-Efficacy of Blood Glucose Testing

A significant interaction effect of Group X Time was revealed, F (2, 178)

=4.49, p< 0.05, partial ŋ2=0.05, suggesting that Self-Efficacy of Blood

Glucose Testing for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =7.28, p= 0.001, partial ŋ2=0.08, and a significant main effect for group, F (1,179) =13.44, p< 0.001, partial

ŋ2=0.007, were revealed as well. As illustrated in the interaction plot (Figure

8.7), Self-Efficacy of Blood Glucose Testing improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but

Self-Efficacy of Blood Glucose Testing in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.7).

8.4.2.6 Self-Efficacy of Foot-Care

A significant interaction effect of Group X Time was revealed, F (2, 177)

=9.67, p< 0.001, partial ŋ2=0.10, suggesting that Self-Efficacy of Foot-care for the two groups was significantly different over time. A significant main

314 effect of time, F (2, 177) =15.80, p< 0.001, partial ŋ2=0.15, and a significant main effect for group, F (1,178) =18.37, p< 0.001, partial ŋ2=0.009, were revealed as well. As illustrated in the interaction plot (Figure 8.8),

Self-Efficacy of Foot-care improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Self-Efficacy of Foot-care in the experimental group was significantly higher than control group at times 2 and 3 (Table

8.7).

8.4.2.7 Self-Efficacy of Hyperglycemia/Hypoglycemia Treatment and Prevention

A significant interaction effect of Group X Time was revealed, F (2, 177)

=13.34, p< 0.001, partial ŋ2=0.13, suggesting that Self –Efficacy of

Hyperglycemia /Hypoglycemia Treatment and Prevention for the two groups was significantly different over time. A significant main effect of time, F (2, 177) =11.36, p< 0.001, partial ŋ2=0.11, and a significant main effect for group, F (1,178) =19.54, p< 0.001, partial ŋ2=0.10, were revealed as well. As illustrated in the interaction plot (Figure 8.9), Self –Efficacy of

Hyperglycemia / Hypoglycemia Treatment and Prevention improved over time for the experimental group, but that of the control group tended to

315 remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Self

–Efficacy of Hyperglycemia / Hypoglycemia Treatment and Prevention in the experimental group was significantly higher than control group at times

2 and 3 (Table 8.7).

8.4.2.8 Summary

In summary, the results indicate that the intervention has been effective in improving self-efficacy for the experimental group. Therefore, the hypothesis (3.1.2) that there would be significant difference in level of self-efficacy between the experimental and the control groups across the study period is accepted. Furthermore, the results indicate that changes in

Self-Efficacy of Blood Glucose Testing, Self-Efficacy of Foot-Care, and

Self-Efficacy of Hyperglycemia /Hypoglycemia Treatment and Prevention contributed most to the improvement in Overall Self-Efficacy, while

Self-Efficacy of Diet, Self-Efficacy of Exercise, and Self-Efficacy of

Medication maintained stable during the study period.

8.4.3 Changes in self-management behaviours

Mean self-management behaviour scores over time for both groups are presented in Table 8.8.

316

Table 8.8 Mean self-management behaviour scores for two groups over time

M SE Group n M SD differe differe Sig.(a) nce nce Time 1 E 88 86.39 16.80 -0.76 2.32 .745 C 91 87.14 14.22 Overall Time 2 E 88 97.10 18.09 10.03 2.52 .000 * SM C 91 87.08 15.53 Time 3 E 88 101.35 17.90 14.02 2.70 .000 * C 91 87.33 18.26 Time 1 E 89 22.48 5.55 -0.31 .80 .698 C 92 22.79 5.20 SM of Time 2 E 89 23.93 5.55 1.25 .86 .149 Diet C 92 22.69 6.02 Time 3 E 89 23.66 5.42 0.91 .91 .318 C 92 22.75 6.74 Time 1 E 89 12.44 4.53 0.00 .70 .996 C 92 12.44 4.88 SM of Time 2 E 89 13.49 4.76 1.49 .70 .034 * Exercis C 92 12.00 4.65 e Time 3 E 89 13.92 4.71 1.57 .73 .032 * C 92 12.35 5.06 Time 1 E 89 12.58 2.78 0.10 0.44 0.83 C 92 12.49 3.17 SM of Time 2 E 89 12.73 2.82 -0.12 0.38 0.76 Medica C 92 12.85 2.23 tion Time 3 E 89 12.85 2.89 -0.41 0.39 0.30 C 92 12.45 2.33 Time 1 E 88 11.30 3.86 -1.11 0.61 .069 C 91 12.41 4.24 SM of Time 2 E 88 13.94 3.98 1.92 0.63 .003 * BGL C 91 12.02 4.47 Testing Time 3 E 88 14.58 4.22 2.67 0.70 .000 * C 91 11.91 5.03

317

Table 8.8 Mean self-management behaviour scores for two groups over

time (cont)

SE M Group n M SD differen Sig.(a) difference ce Time 1 E 89 14.45 3.70 0.33 0.49 .499 C 92 14.12 2.80 SM of Time 2 E 89 17.05 4.81 2.84 0.64 .000 * Foot-C C 92 14.21 3.73 are Time 3 E 89 18.72 4.52 4.69 0.66 .000 * C 92 14.03 4.34 Time 1 E 89 13.03 3.11 0.27 0.52 .597 SM of C 92 12.76 3.78 Hyper-/ Time 2 E 89 14.96 3.75 1.74 0.53 .001 * Hypo-g C 92 13.22 3.41 lycemia Time 3 E 89 16.57 3.61 2.92 0.54 .000 * C 92 13.65 3.60 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. # Case deleted due to outliers in data SM = self-management

8.4.3.1 Overall Self-Management Behaviours

A significant interaction effect of Group X Time was revealed, F (2, 176)

=30.72, p<0.001, partial ŋ2=0.26, suggesting that Overall Self-Management

Behaviours for the two groups was significantly different over time. A

significant main effect of time, F (2, 176) =31.30, p<0.001, partial ŋ2=0.26,

and a significant main effect for group, F (1,177) =12.38, p=0.001, partial

ŋ2=0.07, were revealed as well. As illustrated in the interaction plot (Figure

318 8.10), Overall Self-Management Behaviours improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Overall

Self-Management Behaviours in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.8).

8.4.3.2 Self-Management of Diet

There was no significant interaction effect of Group X Time, F (2, 178)

=1.48, p>0.05, partial ŋ2=0.02, suggesting that Self-Management of Diet for the two groups was comparable over time. In addition, the main effect of time, F (2, 178) =1.13, p>0.05, partial ŋ2=0.01, and the main effect for group, F (1,179) =0.88, p>0.05, partial ŋ2=0.005, did not reach significance.

8.4.3.3 Self-Management of Exercise

The interaction effect of Group X Time, F (2, 178) =2.21, p>0.05, partial

ŋ2=0.02, and the main effect of time, F (2, 178) =1.14, p>0.05, partial

ŋ2=0.01, did not reach significance. A significant main effect of group, F

(1,179) =4.40, p<0.05, was found with a small effect size, partial ŋ2=0.02.

Further examination showed that overall experimental group (M=13.29) was significant higher than control group (M=12.26).

319

F8. 10

130

104 ent Behavi our s

78 Cont r ol Group

anagem I nt er vent i on Group

52 verall Self-M verall O 26 123 Measur i ng Time

F8. 11

16 l ucose Test 12

of Bl8 ood G SM

4 123 Measur i ng Time

320 F8. 12

20 e

15 of Foot-Car of SM 10

5 123 Measur i ng Time

F8. 13

20 ia

8 of Hyper/ Hypo-glycem Hyper/ of SM

4 123 Measur i ng Time

Figure 8.10 – Figure 8.13

Interaction plot of Group X Time for self-management behaviours

321 8.4.3.4 Self-Management of Medication

There was no significant interaction effect of Group X Time, F (2, 178)

=0.64, p> 0.05, partial ŋ2=0.01, suggesting that the change in Self-Efficacy of Medication for the two groups was comparable over time. In addition, neither the main effect of time nor the main effect for group was found to be statistically significant.

8.4.3.5 Self-Management of Blood Glucose Testing

A significant interaction effect of Group X Time was revealed, F (2, 176)

=12.46, p< 0.001, partial ŋ2=0.12, suggesting that Self-Management of

Blood Glucose Testing for the two groups was significantly different over time. A significant main effect of time, F (2, 176) =6.85, p=0.001, partial

ŋ2=0.07 and a significant main effect for group, F (1,177) =5.81, p< 0.05, partial ŋ2=0.03, were revealed as well. As illustrated in the interaction plot

(Figure 8.11), Self-Management of Blood Glucose Testing improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but

Self-Management of Blood Glucose Testing in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.8).

322 8.4.3.6 Self-Management of Foot-Care

A significant interaction effect of Group X Time was revealed, F (2, 178)

=27.08, p< 0.001, partial ŋ2=0.23 suggesting that Self-Management of

Foot-Care for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =26.16, p< 0.001, partial ŋ2=0.23, and a significant main effect for group, F (1,179) =31.89, p< 0.001, partial

ŋ2=0.15, were revealed as well. As illustrated in the interaction plot (Figure

8.12), Self-Management of Foot-Care improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but

Self-Management of Foot-Care in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.8).

8.4.3.7 Self-Management of Hyperglycemia /Hypoglycemia

Treatment and Prevention

A significant interaction effect of Group X Time was revealed, F (2, 178)

=8.64, p< 0.001, partial ŋ2=0.09, suggesting that Self-Management of

Hyperglycemia /Hypoglycemia Treatment and Prevention for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =24.11, p< 0.001, partial ŋ2=0.21, and a significant main

323 effect for group, F (1,179) =16.87, p< 0.001, partial ŋ2=0.09, were revealed as well. As illustrated in the interaction plot (Figure 8.13),

Self-Management of Hyperglycemia /Hypoglycemia Treatment and

Prevention improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1, but Self-Management of Hyperglycemia /Hypoglycemia Treatment and Prevention in the experimental group was significantly higher than control group at times 2 and 3 (Table 8.8).

8.4.3.8 Summary

In summary, the results indicate that the intervention has been effective in improving self-management behaviours for the intervention group.

Therefore, the hypothesis (3.1.3) that there would be significant difference in level of self-management behaviours between the experimental and the control groups across the study period is accepted. Furthermore, the results indicate that changes in Self-Management of Blood Glucose Testing,

Self-Management of Foot-Care, and Self-Management of

Hyperglycemia/Hypoglycemia Treatment and Prevention contributed most to the improvement in Overall Self-Management, while Self-Management of Diet, Self-Management of Exercise, and Self-Management of Medication

324 maintained stable during the study period.

8.4.4 Changes in depressive status

Depressive status over time for both groups is presented in Table 8.9.

Table 8.9 Mean scores of depressive status for two groups over time

M SE Group n M SD differe Sig.(a) difference nce Time 1 E 88 14.90 8.79 0.32 1.45 .824 C 92 14.58 10.48 Overall Time 2 E 88 13.44 9.49 -2.49 1.51 .100 Depressive C 92 15.94 10.69 Status Time 3 E 88 12.10 7.75 -2.50 1.57 .113 C 92 14.60 12.59 Time 1 E 89 5.27 3.19 0.53 0.47 .263 C 92 4.74 3.17 Time 2 E 89 4.30 3.12 -0.64 0.49 .187 Unhappy C 92 4.95 3.39 Time 3 E 89 3.63 2.57 -0.96 0.46 .037 * C 92 4.59 3.49 Time 1 E 88 6.16 3.15 0.17 0.59 .773 C 92 5.99 4.58 Time 2 E 88 5.69 4.01 -0.63 0.60 .291 Somatic C 92 6.33 4.01 Time 3 E 88 5.50 3.37 -.044 0.62 .486 C 92 5.94 4.82 Time 1 E 87 0.62 0.98 0.23 0.12 0.06 C 89 0.39 0.58 Interperson Time 2 E 87 0.54 0.94 -0.28 0.16 0.07 al# C 89 0.82 1.10 Time 3 E 87 0.38 0.88 -0.32 0.16 0.05 * C 89 0.70 1.20

325 Table 8.9 Mean scores of depressive status for two groups over time

（cont）

M SE Group n M SD Sig.(a) difference difference Time 1 E 89 2.96 3.69 -0.36 0.61 0.56 C 92 3.32 4.44 Depressed Time 2 E 89 2.74 3.94 -1.10 0.63 0.08 Affect C 92 3.84 4.47 Time 3 E 89 2.51 3.14 -0.83 0.64 0.20 C 92 3.34 5.20 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. # Case deleted due to outliers in data.

8.4.4.1 Overall Depressive Status

A significant interaction effect of Group X Time was revealed, F (2, 177)

=3.03, p=0.05, partial ŋ2=0.03, suggesting that the difference in Overall

Depressive Status between the two groups was significant over time.

However, neither the main effect of time, F (2, 177) =2.18, p>0.05, partial

ŋ2=0.02, or the main effect for group, F (1,178) =1.57, p>0.05, partial

ŋ2=0.01, reached significance. As illustrated in the interaction plot (Figure

8.14), the trend for the experimental group did not differ much from that of

control group. Post-hoc multiple comparison tests also show that the

experimental and control groups were comparable across the three

measuring times (Table 8.9). Considering the interaction effect just falls on

the borderline of significance (p=0.05), the non-significant findings of

326 post-hoc multiple comparison was understandable.

F8. 14

Cont r ol Group

Intervention 20 Group Over al l Depr essi on

0 123 Measur i ng Time

F8. 15

8 Happy

0 123 Measur i ng Time

327 F8. 16

2 I nt er per sonal

0 123 Measur i ng Time

Figure 8.14 – Figure 8.16

Interaction plot of Group X Time for depressive status

8.4.4.2 Unhappy

A significant interaction effect of Group X Time was revealed, F (2, 178)

=3.62, p< 0.05, partial ŋ2=0.04, suggesting that level of Unhappy for the two groups was significantly different over time. A significant main effect of time, F (2, 178) =4.95, p< 0.05, partial ŋ2=0.05, while a non-significant main effect for group, F (1,179) =1.21, p>0.05, partial ŋ2=0.01, were revealed. As illustrated in the interaction plot (Figure 8.15), Unhappy improved over time for the experimental group, but that of the control group tended to remain unchanged. Post-hoc multiple comparison tests showed

328 that the experimental and control groups were comparable at time 1 and time 2, but Happy in the experimental group was significantly lower than control group at time 3 (Table 8.9).

8.4.4.3 Somatic

There was no significant interaction effect of Group X Time, F (2, 177)

=1.03, p> 0.05, partial ŋ2=0.01, suggesting that level of Somatic for the two groups was comparable over time. In addition, the main effect of time, F (2,

177) =0.70, p> 0.05, partial ŋ2=0.01, and the main effect for group, F (1,178)

=0.40, p> 0.05, partial ŋ2=0.002, did not reach significance.

8.4.4.4 Interpersonal

There were 4 outliers in Interpersonal data at time 1, 2 outliers at time 2 and

1 outlier at time 3; totally 5 cases were deleted before further analysis. A significant interaction effect of Group X Time was revealed, F (2, 173)

=6.23, p<0.05, partial ŋ2=0.07, suggesting that level of Interpersonal for the two groups was significantly different over time. The main effect of time, F

(2, 173) =1.92, p> 0.05, partial ŋ2=0.02, and the main effect for group, F

(1,174) =1.64, p>0.05, partial ŋ2=0.01, did not reach significance. As illustrated in the interaction plot (Figure 8.16), Interpersonal improved over time for the experimental group, but that of the control group tended to

329 remain unchanged. Post-hoc multiple comparison tests showed that the experimental and control groups were comparable at time 1 and time 2, but

Interpersonal in the experimental group was significantly better than control group at times 3 (Table 8.9).

8.4.4.5 Depressed Affect

There was no significant interaction effect of Group X Time, F (2, 178)

=0.64, p> 0.05, partial ŋ2=0.01, suggesting that the level of Depressed

Affect for the two groups was comparable over time. In addition, the main effect of time, F(2, 178) =0.57, p>0.05, partial ŋ2=0.006, and the main effect for group, F (1,179) =2.40, p>0.05, partial ŋ2=0.01, did not reach significance.

8.4.4.6 Summary

In summary, the results indicate that the intervention has been effective in improving depressive status for the intervention group. Therefore, the hypothesis (3.1.4) that there would be significant difference in depressive status between the experimental and the control groups across the study period is accepted. Furthermore, the results indicate that changes in level of

Unhappy and Interpersonal contributed most to the improvement in Overall

Depressive Status, while level of Depressed Affect and Somatic maintained

330 stable during the study period.

8.4.5 Quality of life

Quality of life was measured by SF-36 health outcome survey summary scales (PCS and MCS), 8 subscales (PF, RP, BP, GH, VT, SF, RE, MH), and one-item Self-Perception of Health Transition separately. There was no significant interaction effect of Group X Time, main effect of time and main effect of group for physical summary scale (PCS), mental summary scale

(MCS), physical function (PF), role limitation due to physical health (RP), social function (SF), role limitation due to emotional problems (RE) , vitality (VT) and mental health (MH) (see Table 8.10).

Table 8.10 Mean scores of quality of life for two groups over time

M SE Sig Group n M SD difference difference .(a) Time 1 E 89 43.05 7.70 1.23 1.40 0.38 C 92 41.82 10.82 Time 2 E 89 45.09 9.31 1.99 1.54 0.20 PCS C 92 43.10 11.31 Time 3 E 89 44.71 9.90 0.46 1.58 0.77 C 92 44.25 11.33 Time 1 E 89 47.46 10.11 -1.13 1.42 0.43 C 92 48.58 8.96 Time 2 E 89 48.77 9.17 1.73 1.46 0.24 MCS C 92 47.05 10.40 Time 3 E 89 48.88 8.33 0.58 1.43 0.68 C 92 48.30 10.72

331

Table 8.10 Mean scores of quality of life for two groups over time (cont)

M SE Sig. Group N M SD difference difference (a) Time 1 E 89 62.53 21.04 -0.03 3.75 1.00 C 92 62.55 28.70 Time 2 E 89 66.97 26.83 5.06 4.05 0.21 PF C 92 61.90 27.57 Time 3 E 89 68.48 26.16 5.33 4.17 0.20 C 92 63.15 29.74 Time 1 E 89 62.08 41.48 -0.15 6.50 0.98 C 92 62.23 45.77 Time 2 E 89 69.10 43.47 8.78 6.68 0.19 RP C 92 60.33 46.31 Time 3 E 89 65.17 45.17 2.94 6.81 0.67 C 92 62.23 46.36 Time 1 E 89 42.75 20.05 -0.40 3.28 0.90 C 92 43.15 23.81 Time 2 E 89 52.57 23.22 8.50* 3.38 0.01 GH C 92 44.08 22.26 Time 3 E 89 53.02 21.13 1.82 3.22 0.57 C 92 51.21 22.15 Time 1 E 89 57.58 16.13 -1.33 2.73 0.63 C 92 58.91 20.33 Time 2 E 89 60.34 21.10 3.49 3.04 0.25 VT C 92 56.85 19.78 Time 3 E 89 64.05 21.92 5.40 3.11 0.08 C 92 58.64 19.84 Time 1 E 89 77.81 24.48 0.77 3.51 0.83 C 92 77.04 22.71 Time 2 E 89 78.93 18.71 1.90 3.32 0.57 SF C 92 77.04 25.36 Time 3 E 89 76.40 14.65 -1.31 3.18 0.68 C 92 77.72 26.26

332 Table 8.10 Mean scores of quality of life for two groups over time (cont)

M SE Sig. Group N M SD difference difference (a) Time 1 E 89 65.92 42.93 -3.65 6.64 0.58 C 92 69.57 46.27 Time 2 E 89 70.79 42.59 5.93 6.63 0.37 RE C 92 64.86 46.45 Time 3 E 89 68.54 43.04 -.301 6.63 0.96 C 92 68.84 46.04 Time 1 E 89 66.25 19.42 -1.14 2.71 0.67 C 92 67.39 17.04 Time 2 E 89 69.98 17.29 4.46 2.70 0.10 MH C 92 65.52 18.91 Time 3 E 89 70.61 16.11 2.04 2.70 0.45 C 92 68.57 19.96 Self- Time 1 E 89 42.42 18.62 2.97 3.14 0.35 Perce C 90 39.44 23.10 ption Time 2 E 89 45.79 19.67 4.68 3.04 0.13 of C 90 41.11 20.97 Healt Time 3 E 89 49.16 20.45 1.10 3.07 0.72 h Tran C 90 48.06 20.61 sition Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. PF= Physical function; RP= Role limitation due to physical health; BP= Bodily pain; GH= General health; VT= Vitality; SF= Social function; MH= Mental health; RE= Role limitation due to emotional problems; PCS= Physical summary scale; MCS= Mental summary scale

Regarding general health (GH), the interaction effect of Group X Time, F (2,

172) =0.08, p>0.05, partial ŋ2=0.001, and the main effect for group, F

(1,173) =0, p>0.05, partial ŋ2=0.000, did not reach significance. However, a

333 significant main effect of time, F (2, 172) =4.72, p< 0.05, partial ŋ2=0.05, was revealed. Results showed that GH of all participants, regardless of experimental group or control group, at time 2 (48.25±23.07) and time 3

(52.10±21.61) was significantly higher than time 1 (42.96±21.98).

Regarding Self-Perception of Health Transition, there was a non-significant interaction effect of Group X Time and a non-significant main effect of group. However, a significant main effect of time, F(2, 176) =8.66, p<0.05, partial ŋ2=0.09, was found. Results showed that Self-Perception of Health

Transition of all participants, regardless of experimental group or control group, at time 2 (43.23±20.39) and time 3 (48.61±20.42) was significantly higher than time 1 (40.83±20.96).

Regarding BP, after adjusting for baseline scores, there was a non-significant interaction effect of Group X Time, F(1, 178) =2.79, p>0.05, partial ŋ2=0.02 , and a non-significant main effect of time, F(1, 178) =0.003, p>0.05, partial ŋ2=0.000. However, the main effect for group was found to be statistically significant, F (1,178) =6.56, p<0.05, partial ŋ2=0.04. In addition, there was a strong relationship between the baseline scores on BP and scores at time2 and time 3, as indicated by a partial eta squared value of

0.27 (see Table 8.11).

334

In summary, the results indicate that the intervention has not been effective in improving quality of life for the experimental group. Therefore, the hypothesis (3.1.5) that there would be significant difference in quality of life between the experimental and the control groups across the study period is rejected.

Table 8.11 Adjusted mean scores of bodily pain for two groups over time M SE Group n M SD Sig.(a) difference difference Time 2 E 89 81.53 23.15 -3.69 3.14 0.24 C 92 82.02 23.87 Time 3 E 89 78.43 24.45 -9.87 3.31 0.01 * C 92 85.13 24.41 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni.

8.4.6 Health care utilisation

Health care utilisation was measured by Visits to Doctors, Visits to

Community Health Centre, Visits to Emergency Room, Frequency of

Hospitalisation, and Days of Hospitalisation.

335 Table 8.12 Mean scores of health care utilisation for two groups over time

M SE Sig. Group n M SD difference difference (a) Time 1 E 88 3.27 2.43 0.04 0.37 0.90 C 92 3.23 2.49 Time 2 E 88 3.02 2.79 -0.24 0.37 0.52 Visits to C 92 3.26 2.16 Doctor 0.03 Time 3 E 88 2.38 2.43 -0.73 0.34 * C 92 3.11 2.10 Time 1 E 88 0 0 -0.02 0.02 0.32 C 90 0.02 0.21 Visits to Time 2 E 88 0.03 0.24 0.03 0.03 0.18 ER C 90 0 0 Time 3 E 88 0.03 0.24 0.03 0.03 0.18 C 90 0 0 Time 1 E 84 2.32 1.97 0.05 0.27 0.85 Visits to C 92 2.27 1.57 Commun Time 2 E 84 2.18 2.12 -0.26 0.29 0.39 ity C 92 2.43 1.78 Health 0.03 Time 3 E 84 1.79 2.00 -0.61 0.28 Center # * C 92 2.39 1.71 Time 1 E 88 0.01 0.11 0.01 0.01 0.31 Frequenc C 92 0 0 y of Time 2 E 88 0 0 -0.01 0.01 0.33 Hospitali C 92 0.01 0.10 sation Time 3 E 88 0 0 0.02 0.02 0.05 C 92 0.04 0.21 Time 1 E 88 0 0 0 0 C 91 0 0 Days of Time 2 E 88 0 0 0 0 Hospitali C 91 0 0 sation Time 3 E 88 0 0 -0.05 0.04 0.21 C 91 0.05 0.34 Based on estimated marginal means * The mean difference is significant at the .05 level. a Adjustment for multiple comparisons: Bonferroni. # Case deleted due to outliers in data

336

There were 1 outlier in Visits to Community Health Center data at time 1, 1 outlier at time 2, and 2 outliers at time 3; totally 4 cased were deleted before further analysis. The interaction effect of Group X Time was found to be not statistically significant for Visits to Doctor, Visits to Community Health

Centre, Visits to Emergency Room, Frequency of Hospitalisation, and Days of Hospitalisation, indicating that the variables over time for the two groups was comparable. Furthermore, neither the main effect of time nor the main effect for group was found to be statistically significant for these variables.

In brief, the results indicate that the intervention has not been effective in improving health care utilisation for the experimental group. Therefore, the hypothesis (3.1.6) that there would be significant difference in level of health care utilization between the experimental and the control groups across the study period is rejected.

8.5 Program: evaluation 8.5.1 Quantitative data

One week following completion of the program, the opinions of older people with type 2 diabetes (general participants) toward the whole program were collected. Four forced-choice questions and two open-ended questions were used to collect the feedback. Overall, older people with type 2 diabetes

337 were supportive, giving positive feedback about the program. Their

opinions are demonstrated in Table 8.13.

In brief, the participants were supportive. They liked participation in the

program and would like to attend a similar program in the future. In

addition, they valued peer group activity, pointing it as a feasible and useful

way to promote diabetes self-management.

Table 8.13 Evaluation of the program by general participants (quan)

Responses Questions Options n (%) Definitely liked 44 (49.4%) Mostly liked 24 (27.0%) Did you like the program? Do not know 19(21.3%) Mostly disliked 2( 2.2%) Definitely disliked 0 Definitely like 41(46.1%) If there were similar programs in the Mostly like 40(44.9%) future, would you like to attend Do not know 8(9.0%) again? Mostly dislike 0 Definitely dislike 0 Peer group activity 34(38.2%) Basic diabetes instruction 25(28.1%) From your opinion, what was the Convenient BGL test 20(22.5%) most useful part of the program? Follow-up by health 10(11.2%) professionals Definitely feasible 41(46.1%) Do you think it is feasible to deal Mostly feasible 36(40.4%) with type 2 diabetes Do not know 12(13.5%) self-management, by peer group Mostly not feasible 0 activity? Definitely not feasible 0

338

8.5.2 Qualitative data

In addition to forced-choice questions, two open-ended questions were asked: how did participation in the program affect you personally and what is your suggestion about measures to be done to improve the program. The qualitative data were content-analysed according to a step-by-step approach proposed by Burnard (2006). Two main themes were identified, which, together with their constituent categories, are presented below (Table 8.14).

Table 8.14 Evaluation of the program by general participants (qual)

Themes Categories

Impact of the program • Improvement of type 2 diabetes management

• Making friends and getting support from peers and

health professionals

Suggestion for future • Expectation for peer leaders

improvement • Amendment to delivery style

8.5.2.1 Impact of the program

Older people with type 2 diabetes benefited most from the program in aspects related to control of type 2 diabetes. Many participants reported that their management improved through the program, such as knowledge, skills, confidence, and self-management behaviours.

339 Furthermore, they appreciated the opportunity to communicate with peers which was facilitated by the program. Many mentioned they made new friends, did not feel lonely any more, exchanged experiences with peers and received emotional support, found good examples to learn from, compared with those worse-off and felt better. The opportunity to communicate with health professionals in an easy and friendly way was also mentioned by participants. Some said they felt closer to health professionals and more likely to discuss their ideas and decisions with health professionals.

8.5.2.2 Suggestions for future improvement

Older people with type 2 diabetes provided various suggestions for a future program. Two categories described their opinions: expectation for peer leaders and amendment to delivery style.

Older people with type 2 diabetes wanted attention to the selection of peer leaders. Many suggested that the qualification of peer leaders was crucial to the whole peer group, and selection of peer leaders should be more carefully.

Some preferred retired staff from Community Committee and /or

Community Health Service Centre to act as peer leaders, since they might be more reliable and might collaborate with related organisations more effectively. Interestingly, many older people with type 2 type diabetes

340 showed interest in trying the peer leader role. They suggested that the role of peer leader should be taken in turn, and more strategies should be considered to best utilise peer’s efforts because every one wants to give his/her effort to the group.

Other suggestions for amending the program included have more experts attend, more convenient time for program time, and more support from community organisations for site and equipment arrangement. In addition, older people with type 2 diabetes looked forward to involving more people in the residential area, building some kind of diabetic patient network.

8.6 Summary of Findings

In summary, the current program produced significant improvement in

aspects of social support, self-efficacy, self-management behaviours and

depressive status in experimental group, as compared to the control group.

However, there was no significant effect on quality of life or health care

utilisation. Therefore, the effectiveness of the program was confirmed

partially. In addition, the participants liked the program, speaking highly of

it.

341

342 Chapter 9 Program: Effectiveness and Evaluation - Peer Leaders Perspectives

As mentioned in Chapter Eight, there were two categories of older people with type 2 diabetes in the research. One category was the general participants, including experimental and control groups. Another category was peer leaders, who assisted in most of the delivery process of the program. Since peer leaders were working with the education program, they only presented in experimental group. This chapter presents the data related to peer leaders. The chapter begins by comparing baseline characteristics between peer leaders and general participants, with regard to demographic variables and major outcome variables, including social support, self-efficacy, self-management behaviours, depressive status, quality of life, and health care utilisation. This is followed by the outcomes of the trial of the intervention and peer leaders’ evaluation of the peer-led self-management program.

9.1 Demographics

343 Table 9.1 Comparison between peer leaders and participants by demographics

Peer leaders Participants Chi-square / Fisher’s

(N=12) (N=181) exact test n (%) n (%) x2 p Male 3(25%) 73(40.3%) 1.11 0.37 Gender Female 9(75%) 108(59.7%) Han Ethnic 12 (100%) 174(96.1%) 1.88 1.00 Zhuang Ethnic 0 1(0.6%) Ethnic Hui Ethnic 0 2(1.1%) Missing 0 4(2.2%) Education None 0 10(5.5%) 8.02 0.10 Primary school 0 55(30.4%) High school 10(83.3%) 93(51.4%) Under-graduate 2(16.7%) 15(8.3%) Post-graduate 0 3(1.7%) Missing 0 5(2.8%) Married 12(100%) 155(85.6%) 2.80 0.80 Separated 0 3(1.7%) Windowed 0 16(8.8%) Marital Single 0 4(2.2%) Divorced 0 1(0.6%) Missing 0 2(1.1%) With spouse 6(50%) 102(56.4%) 1.92 0.69 With children/ 3(25%) 33(18.2%) Grandchildren With spouse & Live children/ 2(16.7) 35(19.3%) Grandchildren With others 0 4(2.2%) Alone 1(8.3%) 7(3.9%) Retired 12(100%) 164(90.6%) 0.67 1.00 Unemployed 0 7(3.9%) Work Employed 0 8(4.4%) Work after 0 2(1.1%) retirement

344 Table 9.1 Comparison between peer leaders and participants by demographics (cont)

Peer leaders Participants Chi-square /

(N=12) (N=181) Fisher’s exact test N (%) n (%) x2 p <=500 2(16.7%) 4(2.2%) 6.22 0.24 500< <=1000 4(33.3%) 77(42.5%) Income 1000< <=1500 6(50%) 83(45.9%) (RMB/M) 1500< <=2000 0 11(6.1%) >2000 0 3(1.7%) Missing 0 3(1.7%) < =1Y 1(8.3%) 4(2.2%) 4.84 0.40 1< <=2Y 2(16.7%) 28(15.5%) Time since 2< <=5Y 2(16.7%) 25(13.8%) diagnosed 5< <=10Y 5(41.7%) 56(30.9%) > 10 2(16.7%) 66(36.5%) Missing 0 2(1.1%) Medicine 2(16.7%) 69(38.1%) 6.83 0.08 Lifestyle and / or 2(16.7%) 25(13.8%) other remedies Treatment Medicine & lifestyle and/or 8(66.7%) 86(47.5%) remedies Missing 0 1(0.6%) With 4(33.3%) 90(49.7%) 2.35 0.41 CVD 3 Comorbity Other diseases 2 Without 8(66.7%) 90(49.7%) Missing 0 1(0.6%)

Fourteen individuals were recruited as peer leaders, and 12 completed the study. Two peer leaders were lost due to conflicts among peer leaders themselves. Table 9.1 presents the comparison between peer leaders and general participants by demographics.

345 The mean age of peer leaders (M= 67.33, SD=5.71) and general participants

(M=70.79, SD =6.69) were comparable, t(189)=0.25, p=0.08. There was no significant difference between peer leaders and participants in gender, ethnic, education level, marital status, living status, work status, income, time since diagnosis, treatment and comorbity. Details are presented in

Table 9.1.

9.2 Baseline level of outcome variables

A total of six instruments were used to measure the outcome variables, which were social support, self-efficacy, self-management behaviours, depressive status, quality of life, and health care utilisation (see Section

5.6.1.3 for details). Comparisons between peer leaders and general participants by theses variables at baseline are presented in Table 9.2.

Peer leaders and participants were comparable in most variables at baseline.

However, peer leaders scored significantly better in Positive Interaction subscale of MOS-SSS; Self-Efficacy of Exercise and Self-Efficacy of

Hyperglycemia /Hypoglycemia Treatment and Prevention subscales of

C-DSES; Self-Management of Exercise subscale of C-DSCS; Interpersonal subscale of CES-D, and physical function (PF) subscale of SF-36. The results suggested that peer leaders hold more positive perception of social

346 interaction than the general participants. They were more confident in exercise and hyperglycemia /hypoglycemia handling, and practiced better in exercise. In addition, their physical condition and depressive status were better than the general participants.

Table 9.2 Comparisons between peer leaders and general participants by

outcome variables

General participants Peer leaders t-test Group N=181 N=12 M SD M SD t p

Social Support

Overall Social Support 52.09 16.70 59.65 12.19 -1.54 0.13

Tangible Support 80.77 22.45 84.37 18.94 -0.54 0.59 Info & Emotional 38.62 20.33 45.83 19.55 -1.19 0.24 Support Positive Interaction 49.72 18.39 61.98 13.45 -2.27 0.03

Affectionate Support 52.95 17.63 60.42 17.09 -1.42 0.16

Self-Efficacy Overall SE 93.14* 16.41 99.08 8.46 -1.24 0.22

SE of Diet 24.65 4.91 23.42 5.53 0.84 0.40

SE of Exercise 14.21* 4.27 16.67 2.84 -1.96 0.05

SE of Medication 12.90 2.48 12.92 2.91 -0.03 0.98

SE of BGL testing 12.05 4.14 12.25 3.98 -0.16 0.87

347 Table 9.2 Comparisons between peer leaders and general participants by outcome variables (cont)

General participants Peer leaders t-test Group N=181 N=12 M SD M SD t p

SE of Foot-Care 16.01 3.37 17.33 4.92 -1.28 0.20 SE of Hyper- & 13.42 3.41 16.50 1.93 -3.09 0.00 Hypo-glycemia Self-Management behaviours Overall SM 86.71* 15.48 88.67 10.82 -0.43 0.67

SM of Diet 22.64 5.36 20.67 4.68 1.24 0.22

SM of Exercise 12.44 4.69 15.58 3.32 -3.09 0.01

SM of Medication 12.54 2.98 12.17 3.10 0.42 0.68

SM of BGL testing 11.87* 4.07 11.25 3.91 0.51 0.61

SM of Foot-Care 14.28 3.27 15.08 4.06 -0.81 0.42 SM of Hyper- & 12.90 3.46 13.95 2.50 -1.00 0.32 Hypo-glycemia

Depressive status

Overall Depressive status 14.77 9.65 12.33 6.65 0.86 0.39

Unhappy 5.00 3.18 3.50 3.43 1.57 0.12

Somatic 6.06 3.93 5.92 2.43 0.12 0.90

Interpersonal 0.57 0.96 0.25 0.45 2.18 0.04

Depressed affect 3.14 4.08 2.67 2.54 0.39 0.69

SF-36

PF 62.54 25.16 77.50 15.00 -3.17 0.01

RP 62.15 43.59 58.33 34.27 0.37 0.72 BP 78.06 24.40 79.33 25.85 -0.17 0.86

GH 42.96 21.98 45.92 15.19 -0.46 0.65

VT 58.26 18.35 62.50 17.52 -0.78 0.44

SF 77.42 23.54 82.29 18.81 -0.70 0.48

348 Table 9.2 Comparisons between peer leaders and general participants by outcome variables (cont)

General participants Peer leaders t-test Group N=181 N=12 M SD M SD t P

RE 67.77 44.57 63.83 36.20 0.30 0.77

MH 66.83 18.21 74.33 13.90 -1.40 0.16

PCS 42.43 8.90 44.69 7.17 -0.86 0.39

MCS 48.03 9.43 49.16 10.81 -0.40 0.69 Self-Perception of Health 40.83* 20.96 45.83 14.43 -0.81 0.42 Transition Health Care Utilisation

Visits to doctor 3.25* 2.46 2.42 2.19 1.15 0.25

Visits to ER 0.01** 0.15 0.33 1.16 -0.97 0.36

Visits to community 2.36* 1.86 2.25 2.09 0.19 0.85 health centre Frequency of 0.01* 0.08 0.00 0.00 0.26 0.80 hospitalisation Days of hospitalisation 0.02** 0.22 0.00 0.00 0.26 0.80

Note: * 1 datum missing ** 2 data missing PF= Physical function; RP= Role limitation due to physical health; BP= Bodily pain; GH= General health; VT= Vitality; SF= Social function; MH= Mental health; RE= Role limitation due to emotional problems; PCS= Physical summary scale; MCS= Mental summary scale

9.3 Effectiveness of the intervention 9.3.1 Social support

The time effect for Overall Social Support [F (2, 10) =2.94, p=0.10, partial

ŋ2=0.37], Tangible Support [F (2, 10) =0.21, p=0.82, partial ŋ2=0.04],

Positive Interaction [F (2, 10) =2.54, p=0.13, partial ŋ2=0.34], and

349 Affectionate Support [F (2, 10) =2.95, p=0.10, partial ŋ2=0.37], were not statistically significant. The means and standard deviation details can be seen in Table 9.3.

Table 9.3 Mean scores of social support for peer leaders over time

M SD Time 1 59.65 12.19 Overall Social Time 2 65.68 10.23 Support Time 3 75.99 17.27 Time 1 84.37 18.94 Tangible Support Time 2 81.25 14.10 Time 3 81.77 19.30 Time 1 45.83 19.55 Information & Time 2 59.11 11.26 Emotional Support Time 3 70.05 16.51 Time 1 61.98 13.45 Positive Interaction Time 2 63.54 13.80 Time 3 78.65 21.23 Time 1 60.42 17.09 Affectionate Time 2 65.28 18.75 Support Time 3 80.56 18.23

The ranges of mean scores over time for some variables, including Overall

Social Support, Positive Interaction and Affectionate Support, are quite large, suggesting that there was a significant shift over time; however, the results of the statistical analyses did not reach significance. Therefore, the non-significant time effect was further examined. Power analysis was performed to detect the probability of committing type Ⅱ error. It was found that the power achieved in detecting a significant difference over time in

350 Overall Social Support, Positive Interaction and Affectionate Support was

0.45, 0.39 and 0.45, respectively. Since the power is small, the probability of wrongly accepting a false hypothesis could be possible.

There was a significant time effect on Information & Emotional Support, F

(2, 10) =4.70, p<0.05, partial ŋ2=0.48. Follow-up pairwise comparison showed that Information & Emotional Support at time 1 (45.83 ±19.55) and time 2 (59.11 ±11.26) were significantly lower than time 3 (70.05 ±16.51).

There was no significant difference between scores at time 1 and time 2 (see

Table 9.3).

In summary, according to the results, the intervention has been effective in improving Information & Emotional Support though non-effective in improving Overall Social Support, Tangible Support, Positive Interaction, and Affectionate Support. Therefore, hypothesis 3.2.1, there would be significant difference in level of social support among peer leaders across the study period, is partially accepted.

9.3.2 Self-efficacy

351 Table 9.4 Mean scores of self-efficacy for peer leaders over time

M SD Time 1 99.08 8.46 Overall Self-Efficacy Time 2 101.67 12.80 Time 3 109.42 16.17 Time 1 23.42 5.53 Self-Efficacy of Diet Time 2 24.92 3.12 Time 3 24.67 6.80 Time 1 16.67 2.84 Self-Efficacy of Time 2 16.25 3.05 Exercise Time 3 16.75 4.77 Time 1 12.92 2.91 Self-Efficacy of Time 2 12.67 1.78 Medication Time 3 12.92 3.65 Time 1 12.25 3.98 Self-Efficacy of BGL Time 2 13.17 3.30 Testing Time 3 17.33 2.77 Time 1 17.33 4.92 Self-Efficacy of Time 2 18.17 4.65 Foot-Care Time 3 20.25 3.08 Self-Efficacy of Time 1 16.50 1.93 Hyper-/Hypo-glycemi Time 2 16.50 2.32 a Time 3 17.50 3.29

The time effect on Overall Self-Efficacy, F (2, 10) =2.80, p=0.11, partial

ŋ2=0.36, did not reach significant level, indicating that there was no significant change in Overall Self-Efficacy of peer leaders throughout the intervention. As to the six subscales, the time effect on Self-Efficacy of Diet

[F (2, 10) =2.80, p=0.11, partial ŋ2=0.36], Self-Efficacy of Exercise [F (2,

10) =0.06, p=0.94, partial ŋ2=0.01], Self-Efficacy of Medication [F (2, 10)

=0.04, p=0.96, partial ŋ2=0.01], Self-Efficacy of Foot-Care [F (2, 10) =2.16, p=0.17, partial ŋ2=0.30], and Self-Efficacy of Hyperglycemia

352 /Hypoglycemia Treatment and Prevention [F (2, 10) =0.51, p=0.61, partial

ŋ2=0.10], were not statistically significant as well. The means and standard deviation details can be seen in Table 9.4.

The range of mean scores over time for Overall Self-Efficacy is quite large, suggesting that there was a significant shift over time; however, the results of the statistical analyses did not reach significance. Therefore, the non-significant time effect was further examined. Power analysis was performed to detect the probability of committing type Ⅱ error. It was found that the power achieved in detecting a significant difference over time in

Overall Self-Efficacy was 0.43. Since the power is small, the probability of wrongly accepting a false hypothesis could be possible.

A significant time effect on Self-Efficacy of Blood Glucose Testing, F (2, 10)

=17.87, p=<0.001, partial ŋ2=0.78, was found. Follow-up pairwise comparison showed that Self-Efficacy of Blood Glucose Testing at time 1

(12.25 ±3.98) and time 2 (13.17 ±3.30) were significantly lower than time 3

(17.33 ±2.77), although there was no significant difference between scores at time 1 and time 2.

In summary, according to the results, the intervention has not produced

353 significant effect on Overall Self-Efficacy. In addition, the intervention has been effective in improving Self-Efficacy of Blood Glucose Testing while non-effective in improveing level of other five subscales. Therefore, hypothesis 3.2.2, there would be significant difference in level of self-efficacy among peer leaders across the study period, is partially accepted.

9.3.3 Self-management behaviours

A significant time effect on Overall Self-Management behaviours, F (2, 10)

=16.11, p=0.001, partial ŋ2=0.76, was revealed. Follow-up pairwise comparison showed that Overall Self-Management at time 1 (88.67±10.82), time 2 (97.42 ±10.28) and time 3 (108.08 ±13.03) were significantly different from each other (see Table 9.5).

Significant time effect was found on Self-Management of Blood Glucose

Testing, F (2, 10) =10.98, p<0.05, partial ŋ2=0.69. Scores of

Self-Management of Blood Glucose Testing at time 1 (11.25±3.91) and time

2 (13.33±3.50) were not significantly different from each, but both of them were significantly lower than time 3 (16.58±3.12). The details can be seen in Table 9.5.

354 Significant time effect was found on Self-Management of Foot-Care, F (2,

10) =6.61, p<0.05, partial ŋ2=0.57. Follow-up pairwise comparison showed that Self-Management of Foot-Care at time 1 (15.08±4.06) was significantly lower than time 3 (20.17±3.49), while scores at time 2 was not significantly different from scores at time 1 and at time 3 (see Table 9.5).

Table 9.5 Mean scores of self-management behaviour for peer leaders over time

M SD Time 1 88.67 10.82 Overall Time 2 97.42 10.28 Self-Management Time 3 108.08 13.03 Time 1 20.67 4.68 Self-Management of Time 2 24.25 2.01 Diet Time 3 25.25 5.36 Time 1 15.58 3.32 Self-Management of Time 2 15.42 2.57 Exercise Time 3 15.58 5.07 Time 1 12.17 3.10 Self-Management of Time 2 12.50 2.24 Medication Time 3 13.00 3.46 Time 1 11.25 3.91 Self-Management of Time 2 13.33 3.50 BGL Testing Time 3 16.58 3.12 Time 1 15.08 4.06 Self-Management of Time 2 17.58 4.72 Foot-Care Time 3 20.17 3.49 Self-Management of Time 1 13.95 2.50 Hyper-/Hypo-glycemi Time 2 14.33 3.82 a Time 3 17.50 2.58

Significant time effect was found on Self-Management of

355 Hyperglycemia/Hypoglycemia Treatment and Prevention, F (2, 10) =8.60, p<0.05, partial ŋ2=0.63. Follow-up pairwise comparison showed that

Self-Management of Hyperglycemia/Hypoglycemia Treatment and

Prevention at time 1 (13.92±2.50) and time 2 (14.33±3.82) were significantly lower than time 3 (17.50±2.58), but there was no significant difference between scores at time 1 and at time 2 (see Table 9.5).

There was no significant time effect on Self-Management of Diet [F (2, 10)

=3.73, p=0.06, partial ŋ2=0.43], Self-Management of Exercise [F (2, 10)

=0.01, p=0.99, partial ŋ2=0.003], and Self-Management of Medication [F (2,

10) =0.27, p=0.77, partial ŋ2=0.05]. The means and standard deviation details can be seen in Table 9.5.

In summary, according to the results, the intervention has produced significant effect on Overall Self-Management. In addition, the intervention has been effective in improving Self-Management of Blood Glucose Testing,

Self-Management of Foot-Care, Self-Management of

Hyperglycemia/Hypoglycemia Treatment and Prevention while non-effective in improving Self-Management of Diet, Self-Management of

Exercise, and Self-Management of Medication. Therefore, hypothesis 3.2.3, there would be significant difference in level of self-management

356 behaviours among peer leaders across the study period, is accepted.

9.3.4 Depressive status

Time effect was found to be not statistically significant for Overall

Depressive Status, [F (2, 10) =1.04, p=0.39, partial ŋ2=0.17], Unhappy [F (2,

10) =0.03, p=0.97, partial ŋ2=0.01], Somatic [F (2, 10) =3.70, p=0.06, partial ŋ2=0.43], Interpersonal [F (2, 10) =2.50, p=0.13, partial ŋ2=0.33], and Depressed Affect [F (2, 10) =0.20, p=0.83, partial ŋ2=0.04]. The means and standard deviation details can be seen in Table 9. 6.

Table 9.6 Mean scores of depressive status for peer leaders over time

M SD Time 1 12.33 6.65 Overall Depressive status Time 2 10.58 6.99 Time 3 7.83 5.65 Time 1 3.50 3.43 Unhappy Time 2 3.25 2.53 Time 3 3.08 2.47 Time 1 5.92 2.43 Somatic Time 2 4.83 3.19 Time 3 2.75 2.26 Time 1 0.25 0.45 Interpersonal Time 2 0.17 0.57 Time 3 0 0 Time 1 2.67 2.54 Depressed Affect Time 2 2.33 2.81 Time 3 2.00 2.17

The range of mean scores over time for Overall Depressive Status is quite

357 large, suggesting that there was a significant shift over time; however, the results of the statistical analyses did not reach significance. Therefore, the non-significant time effect was further examined. Power analysis was performed to detect the probability of committing type Ⅱ error. It was found that the power achieved in detecting a significant difference over time in

Overall Depressive status was 0.54. Since the power is small, the probability of wrongly accepting a false hypothesis could be possible.

In summary, according to the results, the intervention has not produced significant effect on Overall Depressive Status. In addition, the intervention has not been effective in improving level of Unhappy, Somatic,

Interpersonal and Depressed Affect. Therefore, hypothesis 3.2.4, there would be significant difference in depressive status among peer leaders across the study period, is rejected.

9.3.5 Quality of life

The intervention has not produced significant effect on quality of life.

Therefore, hypothesis 3.2.5, there would be significant difference in quality of life among peer leaders across the study period, is rejected. The means and standard deviation details can be seen in Table 9. 7.

358 Table 9.7 Mean scores of quality of life for peer leaders over time

M SD Time 1 44.69 7.17 PCS Time 2 45.33 6.14 Time 3 46.21 9.78 Time 1 49.16 10.81 MCS Time 2 47.55 9.17 Time 3 48.01 10.65 Time 1 77.50 15.00 PF Time 2 78.75 17.60 Time 3 80.42 18.52 Time 1 58.33 34.27 RP Time 2 60.42 44.54 Time 3 62.50 32.86 Time 1 79.33 25.85 BP Time 2 77.00 23.33 Time 3 77.25 30.06 Time 1 45.92 15.19 GH Time 2 45.33 18.50 Time 3 50.92 25.29 Time 1 62.50 17.52 VT Time 2 65.00 18.22 Time 3 64.58 24.07 Time 1 82.29 18.81 SF Time 2 77.08 14.92 Time 3 77.08 12.87 Time 1 63.83 36.20 RE Time 2 63.83 33.26 Time 3 66.58 37.69 Time 1 74.33 13.90 MH Time 2 70.00 16.32 Time 3 71.67 20.85 Self-Perception of Time 1 45.83 14.43 Health Transition Time 2 50.00 18.46 Time 3 52.08 16.71 PF= Physical function; RP= Role limitation due to physical health; BP= Bodily pain; GH= General health; VT= Vitality; SF= Social function; MH= Mental health; RE= Role limitation due to emotional problems; PCS= Physical summary scale; MCS= Mental summary scale

359

9.3.6 Health care utilisation

One-way repeated measures ANOVA, with the factor being three time periods (time 1-baseline, time 2-4wks, time 3-12wks), were conducted to explore whether there were any changes in scores of Visits to Doctor, Visits to Emergency Room, and Visits to Community Health Centre. However, no significant time effect was found. Another two variables, Frequency of

Hospitalisation and Days of Hospitalisation were same throughout three time periods, which were not appropriate for ANOVA analysis. The means and standard deviation details can be seen in Table 9.8.

Table 9. 8 Mean scores of health care utilisation for peer leaders over time

M SD Time 1 2.42 2.19 Visits to Doctor Time 2 2.25 1.87 Time 3 1.83 1.70 Time 1 0.33 1.16 Visits to ER Time 2 0 0 Time 3 0 0 Time 1 2.25 2.09 Visits to Community Time 2 2.17 1.95 Health Center Time 3 1.00 1.48 Time 1 0 0 Frequency of Time 2 0 0 Hospitalisation Time 3 0 0 Time 1 0 0 Days of Hospitalisation Time 2 0 0 Time 3 0 0

360

In brief, hypothesis 3.2.6, there would be significant change in level of health care utilisation among peer leaders across the study period, is rejected.

9.4 Program: Evaluation 9.4.1 Quantitative data

One week following the completion of the program, the opinions of peer leaders toward the whole program were collected. Four forced-choice questions and two open-ended questions were used to collect peer leaders’ feedback. All 12 peer leaders completing the intervention returned questionnaires. Overall, peer leaders were supportive, giving positive feedback about the program. Their opinions are demonstrated in Table 9.9.

In brief, the peer leaders were supportive of the intervention. They were happy to be peer leaders and would like to attend future program again.

They valued peer group activity, pointing it as a feasible and useful way to promote diabetes self-management.

361

Table 9.9 Evaluation of the program by peer leaders (quan)

Responses Questions n Options (percentage%) Definitely liked 4(33.3%) Mostly liked 8(66.7%) Did you like acting as peer leaders in Do not know 0 the program? Mostly disliked 0 Definitely disliked 0 Definitely like 5(41.7%) If there were similar program in the Mostly like 7(58.3%) future, would you like to act as peer Do not know 0 leader again? Mostly dislike 0 Definitely dislike 0 Peer group activity 5(41.7%) Basic diabetes instruction 3(25%) From your opinion, what is the most Follow-up by health 2(16.7%) useful part of the program? professionals 2(16.7%) Convenient BGL test Definitely feasible 3(25%) Do you think it is feasible to deal with Mostly feasible 9(75%) type 2 diabetes self-management, by Do not know 0 peer group activity? Mostly not feasible 0 Definitely not feasible 0

9.4.2 Qualitative data

In addition to forced-choice questions, two open-ended questions were

asked: how did participation in the program affect you personally and what

is your suggestion about measures to improve the program. The

qualitative data was content-analysed following a step-by-step approach

proposed by Burnard (2006). Three main themes were identified. These

themes, together with their constituent categories are presented as follows.

362 See Table 9.10.

Table 9.10 Evaluation of the program by peer leaders (qual)

Themes Categories

Impact of the program Improvement related to control of type 2 diabetes

Improvement in other aspects

Commendation for the Advantages of delivery style

program Peer leader training

Continuity of program and involvement of more participants

Challenges in leading Leading a large group

peer activity Motivating peers

Controlling “getting off” topic

Sharing leadership

Avoiding potential mistakes

9.4.2.1 Impact of the program

Peer leaders expressed their happiness as acting as a leader in this program.

They benefited not only in aspects related to control of type 2 diabetes, but also in other social and psychological aspects. Two categories of meaning described their experience: Improvement related to control of type 2 diabetes, and improvement in other aspects.

Improvement related to control of type 2 diabetes

Most peer leaders reported that they learnt a lot about their condition and self-management skills. Other improvements such as paying more attention to their health, being more confident to take care of themselves, and

363 practising better self-management behaviours were mentioned as well.

Some described that the blood glucose control improved gradually throughout the period. Peer leaders attributed these improvements to not only the instructions provided in the program, but also the exchange with peers, and the responsibility of being a leader. Many said they learnt a lot and draw experiences from others among peer activities. They also acknowledged that “being peer leader give me pressure to do better” or “I am motivated to examine my own behaviours”.

Improvement in other aspects

Peer leaders benefited from the program in various aspects in addition to control of their disease. Many mentioned that being peer leaders provided a great chance to get to know new people and expand their social circle. They could receive support and companionship from other older people with type

2 diabetes. In addition, a few mentioned they had built deep understanding and intimate friendships with fellow leaders, which they enjoyed very much.

Peer leaders said they felt excited when peers made a positive change of behaviours. Some described that “during the activity, everyone reports on his progress, especially after the blood test, and find the level of blood

364 glucose reduces, the members are very excited and I am very happy”. One man mentioned seeing participants improving was the most satisfying moment for him. Many expressed that they felt excellent since they could really help others, and still be useful to society.

Peer leaders developed a close and equal relationship with health professionals and Community Committee staff because of frequent contact and/or working together during the program. Some reported “they greeted me as a partner, more equal position now” or “I could sense their attitude changed. I am one of them, not just a poor diabetic”. Peer leaders felt very satisfied with this kind of recognition, perceiving it as great reward of voluntary work.

9.4.2.2 Commendation for the program

Most peer leaders felt the program was successful. They appreciated the delivery procedure of the program and expressed their hope for continuity of the program. Two categories emerged: advantages of delivery style, peer leader training, and continuity of program and involvement of more participants.

Advantages of delivery style

365 Peer leaders thought the organisation of the whole program was effective, including structured peer activity, communication with health professionals and collaboration with Community Committees. It seemed that the opportunity for older people with type 2 diabetes to socialise with others in like-circumstance in a structured way was valued most. At the same time, peer leaders recognised their own contribution in facilitating the communication process. As someone mentioned, “It is excellent for peers to exchange with each other. It is safe. No worry about cheating, health professionals is nearby….. and I always talk to silent ones, promote them to join us. They need help most”.

Health professionals were usually viewed as authoritative experts by older people with type 2 diabetes, and there was limited chance for them to communicate equally. During the program older people with type 2 diabetes had more opportunity to contact health professionals in a friendly and comfortable atmosphere, through question and answer sessions directly, or through bridging by peer leaders. Many peer leaders appreciated the accessibility and convenience of communication with health professionals, saying “it breaks the distance between patients and health professionals”.

The program received support, including location arrangement and calling

366 for participants, from Community Committees. During the process, the community organisations became more aware of the situation of diabetes and became more active to provide needed help. A few mentioned that some

Community Committees staff attended their activities regularly and showed enthusiasm. One man said Community Committee staff contacted him spontaneously when the program ended, asking if he would like to lead such a group continually and promising to provide ongoing support.

Peer leader training

Peer leaders gave very positive feedback about the training, saying it provided necessary understanding and skills to fulfil their leader roles. For example, “it was good because in the training we practised how to talk in front of many people, which I was not sure before”. In addition, some mentioned they enjoyed the style of the training, such as “the training is interesting and teacher is patient” or “I like the training, teacher understand what we worry about, and encourage us step by step, very comfortable atmosphere”.

In addition, peer leader training provided the chance to gather with fellow leaders. They could talk about their experiences in leading groups, identify problems and find possible solutions. A few mentioned they used to make

367 plans for upcoming group activities with other leaders during these meetings, and felt it much easier since they could get inspiration from others.

Continuity of program and involvement of more participants

Nearly all peer leaders hoped that the program could continue. Some expressed their beliefs that they could “summarise and improve continually”, and “make the program a perfect model” if they could receive continual support after the completion of the program. Some suggested that more participants should be included. One man said “I know many who are interested in the activity missed the recruitment. If we could organise more activities and include all of them, the impact of the program will be increased. We can better the community environment radically”.

9.4.2.3 Challenges in leading peer activity and related suggestions

Peer leaders reported that they faced various challenges during the process, which fortunately, they handled well. In addition, they provided related suggestions. Five categories emerged, including Leading a large group,

Motivating peers, Controlling “getting off” topic, Sharing leadership, and avoiding potential mistakes. .

368

Leading a large group

According to the original design, each peer group was to have 10-15 individuals. However, since there were not enough peer leaders recruited, each group consisted of 19 to 27 participants. Leading such a large group seemed to be a big challenge for some peer leaders. A few mentioned that although they worked in community organisations before, they were not confident to speak in front of so many people and guide the discussion effectively. One lady said “when I talk with four or five people, it is okay. I can manage it. However, so many people, I can not care everyone. ….I try to give special concern to non-talkative members, but sometimes I fail”.

Others suggested that it was difficult to find a gathering time and site convenient for a large group. Smaller groups held much closer to a residential area was suggested.

Motivating peers

There were various perceptions of peer’s responses. Some leaders thought peers were very active. One lady mentioned that peers helped her to collect related information and print materials for the group activities. She thanked peers for their assistance and interest, saying “actually, they lead the group by themselves”. At the same time, some thought their peers relied heavily

369 on peer leaders. One man said “they are cooperative (with us), of course it is good. But how to enhance trust among themselves? How to mobilise everyone to give some effort? Depending on leader alone is not viable.”

Some peer leaders reported that they used strategies such as praising active members for their help in front of other members to activate peer members.

Controlling “getting off topic”

“Getting off topics” seemed to be a big issue for peer leaders. Although most had clearly designed plans for each group activity, peer leaders always accommodated peer members’ interest and made adjustments accordingly.

However, it was difficult for them to direct the discussion if some members

“getting off topic, just talk about something else”. One lady acknowledged

“it is difficult. She is a good member, just too talkative. I try to remind her, but it is useless. If I stop her, she will feel embarrassed.. ….The time is tight,

I want them to focus on key topics”.

Sharing leadership

Peer leaders were happy with the current style of shared leadership. For example, “I am very careful not to make mistake, and it is safer when there are fellows to run it with me”, or “if I am lost or confused, another leader could help me immediately. It is more efficient”. However, a few expressed

370 their concerns on cooperation with partners. Someone said, “I hope there could be split of roles among leaders”, or “it is better to do it (moderate the group activity) in turn. We work together, must be cooperative, not dominant”. .

Avoiding potential mistakes

Peer leaders cherished their role and wanted to accomplish responsibility competently. Many expressed that they usually did a lot of preparation in case of possible questions. In addition, they were very careful to not to make mistakes. Some mentioned they preferred to check with fellow leaders and health professionals (in order to make a qualified plan). One man suggested that peer leaders should have a meeting before each group activity and decide the outline together. Peer leader’s careful attitude guarantee the quality of peer group activity, however, it made them tired to a certain extent. Just as one lady said “I always worry that I may make mistakes. So before each group meeting, I have to prepare enough, spending a lot of time. Sometimes I feel a bit tired”.

9.5 Summary of findings

In summary, during the study period, the peer leaders improved significantly in overall self-management behaviours and in specific areas of

371 social support and self-efficacy, though they did not improve in depressive status, quality of life and health care utlisation. It appeared that when assisting in program delivery, peer leaders benefited much. In addition, they enjoyed being peer leaders, and gave very positive feedback toward the whole program.

372 Chapter 10 Discussion and Conclusion

The previous chapters have outlined the results of data analysis in relation to the three phases of the study which developed, tested and evaluated a self-management program for older people with type 2 diabetes living in the community in China. In this chapter the findings of the study are discussed, including barriers related to self-management of type 2 diabetes, the effectiveness of the program among general participants as well as peer leaders, and the evaluation and suggestions for the program.

Strengths and limitations of the research are addressed, and implications for clinical practice and suggestions for future research are presented.

10.1 Needs assessment

In order to explore the experience of living with type 2 diabetes and preferred health education from perspectives of both older people with type 2 diabetes and community health professionals, two focus group discussions were conducted. Five common themes were drawn, including social support, confidence to practice self-management behaviours, self-management behaviours, barriers to self-management behaviours, and advice for ongoing health education. Although older people with type

2 diabetes and health professionals expressed broadly the same concerns,

373 their points of view were not always identical and different emphases were identified. By integrating points of view of two parties, a better understanding was developed.

The performance of self-management behaviours of older people with type 2 diabetes varied across different areas. Exercise, blood glucose testing and foot-care behaviours were acknowledged to be poor by these participants, while there was inconsistency on evaluation of medication and diet control. Hence, these areas should be targeted with specific attention. Previous qualitative research suggested the positive role of social support and self-efficacy in self-management behaviours and subsequent health outcome (Samuel-Hodge, Headen et al. 2000; Reicks,

Mills et al. 2004; Resnick, Vogel et al. 2006; Vincent, Clark et al. 2006).

However, although the influence was acknowledged by the participants in this study, the levels of social support and self-efficacy were not satisfying among them. Therefore, it was highlighted that, in order to promote self-management in this population, future education programs should encompass strategies to enhance self-efficacy and social support.

Older people with type 2 diabetes faced multiple physical, psychological, and social-environmental barriers to practice self-management.

374 Unfortunately, some of the barriers, such as life attitude, were not noticed by health professionals. The situation is not surprising since many previous studies reported inconsistency between health professionals and patients’ understandings and expectations regarding disease control (Wens,

Vermeire et al. 2005; Carbone, Rosal et al. 2007; Gordon, Smith et al.

2007). The focus group findings verified the necessity to incorporate opinions from both health professionals and patients to provide practical help.

Older people with type 2 diabetes and community health professionals, provided various suggestions for an ongoing health education program.

These suggestions were valuable, providing detailed information about delivery style and content of interest. Furthermore, they suggested that collaboration with community organisations was a feasible way to implement a health education program, which was consistent with suggestions of former researchers (Jack, 2003). These opinions were integrated into the development of the current peer-led self-management program, which would make the program more culturally appropriate and practical.

Based on the integration of principles of the selected theoretical

375 framework, results of the needs assessment and an extensive literature review, drawing on experience of previous relevant study

(Shortridge-Baggett 1995; Lenz and Shortridge-Baggett 2002), a peer-led self-management program for older people with type 2 diabetes living in the community in China was developed. This program was a package, consisting of basic diabetes instruction (BDI) and self-efficacy and social support enhancement (SSS) activities. The effectiveness test and evaluation of the program was then conducted.

10.2 Baseline level of outcome variables

Two categories of older people with type 2 diabetes were involved in the intervention. One category was the general participants, including experimental group and control group. The other category was the peer leaders, who assisted in most of the delivery process of the intervention.

The baseline levels of the outcome variables, including social support, self-efficacy, self-management behaviours, depressive status, quality of life, and health care utilisation, among both categories of participants were examined.

Participants’ social support was measured using the Medical Outcome

Study Social Support Survey (MOS-SSS). Compared to data reported for

376 other Chinese populations, especially for older people with chronic disease (Yu, Lee et al. 2004; Yu, Lee et al. 2004; Shyu, Tang et al. 2006), the participants in this study enjoyed similar levels of Overall Social

Support, Positive Interaction and Affectionate Support, with average scores around 50 on the 100-point scales. However, these participants received relatively higher levels of Tangible Support, with an average score of 80.77 on the 100-point scale, compared to previously reported findings (scored around 65 on the 100-point scale); while relatively lower level on Information & Emotional Support, with an average score of

38.62 on the 100-point scales, compared to previously reported findings

(scored around 60 on the 100-point scale).

Participants’ self-efficacy was measured using the Chinese Diabetes

Self-Efficacy Scale (C-DSES). The participants had similar levels of self-efficacy in general and in specific areas as compared to data reported for other Chinese populations with type 2 diabetes (Wang & Shiu, 2004;

Wang, Wang, & Lin, 1998). The levels of Self-Efficacy of Diet and

Self-Efficacy of Medication were fairly high, with ratios of average score/possible highest score of more than 80%. The levels of Overall

Self-Efficacy, Self-Efficacy of Exercise and Self-Efficacy of

Hyperglycemia & Hypoglycemia Prevention and Treatment were modest,

377 with ratios of average score/possible highest score of around 70%. The levels of Self-Efficacy of Blood glucose testing and Self-Efficacy of

Foot-Care were low, with ratios of average score/possible highest score of around 60%.

Participants’ self-management behaviours were measured using Chinese

Diabetes Self-Care Scale (C-DSCS). These participants had similar levels of self-management behaviours at general level and specific areas as compared to data reported for other Chinese populations with type 2 diabetes (Wang, Wang et al. 1998; Wang and Shiu 2004). The levels of

Self-management of Diet and Self-management of Medication were fairly high, with ratios of average score/possible highest score of around 80%.

The level of Overall Self-management was modest, with a ratio of average score/possible highest score of around 70%. The levels of

Self-management of Exercise, Self-management of Blood glucose testing,

Self-management of Foot-Care and Self-management of Hyperglycemia

& Hypoglycemia Prevention and Treatment were low, with ratios of average score/possible highest score of around 60%.

Participants’ depressive status was measured using Center for

Epidemiologic Studies Depression (CES-D) scale. Using CES-D total

378 score of 16 as a cut-point indicator for possible presence of clinical depression (Phifer and Murrell 1986; Barnes, Currie et al. 1988;

Somervell, Beals et al. 1993), 41.4% of participants scored ≥16. These findings were consistent with previous studies that people with type 2 diabetes were at high risk for depression (Pineda Olvera, Stewart et al.

2007; Sundaram, Kavookjian et al. 2007). The situation was also similar to data reported in other Chinese older population (Lu, Wu et al. 2002).

Participants’ quality of life data were collected using Medical Outcome

Study 36-item Short Form Health Survey (SF-36). The levels of bodily pain (BP) and social function (SF) were high, with average scores around

77-78 on the 100-point scales. The levels of role limitation due to emotional problem (RE) and mental health (MH) were modest, with average scores around 67-68 on the 100-point scales. The levels of physical health (PF), role limitation due to physical health (RP) and vitality (VT) were low, with average scores around 60 on the 100-point scales. The level of general health (GH) was fairly low, with an average score of 42 on the 100-point scales. Since there are no national normative data for China, comparisons between the current data and previous surveys for people aged 65-74, and for older diabetic patients in Shanghai community were made (Li, Wang et al. 2003; Tang, Wang et al. 2006).

379 The baseline levels of our participants were similar to findings reported in

Chinese studies.

In addition, comparisons between the baseline levels of quality of life and the norms of people with diabetes in Australia and US were conducted. It appears that the participants in this study had relatively higher bodily pain

(BP) scores (scored around 78); while relatively lower general health (GH) score (scored around 43) compared to people with diabetes in Australia and US (Australia Bureau of Statistics, 1997; Ware, 2000).

Comparisons between the baseline levels of quality of life and the norms of people aged 65-74 in Australia and US were conducted as well. It appears that the participants in this study had relatively higher BP scores

(scored around 78); and relatively lower GH (scored around 43), role limitation due to emothional problems (RE) (scored around 68) and mental health (MH) (scored around 67), compared to people with diabetes in Australia and US (Australia Bureau of Statistics, 1997; Ware, 2000).

Participants’ health care utilisation data were assessed by a self-developed

Health Care Utilisation Data Collection Form, including questions about visit to doctors, visit to emergency room, visit to Community Health

380 Service Centre, frequency of hospitalisation, and days of hopitalisation.

Due to limited studies in China involving health care utilisation as an outcome variables, comparisons with previous studies was not possible.

However, according to the current findings, the participants had a low level use of health care services, especially emergency room visits and hospitalisations.

In brief, these general participants had similar levels of self-efficacy, self-management behaviours, depressive status and quality of life to findings reported from other comparable studies. However, they enjoyed relatively higher level of Tangible Support but lower levels of Information and Emotional Support. Furthermore, they had low levels of health care utilisation, especially in emergency room visits and hospitalisation.

In addition to general participants, fourteen peer leaders were recruited for this study. Peer leaders and the general participants were comparable in most outcome variables at baseline, but peer leaders had higher levels in some variables, including Positive Interaction, Self-Efficacy of

Exercise, Self-Efficacy of Hyperglycemia/Hypoglycemia Prevention and

Treatment, Self-Management of Exercise, Physical Function and

Interpersonal (depressive status). However, the levels of such variables

381 among these peer leaders do not deviate too much from findings reported by other comparable studies.

10.3 Effect of the program among general participants 10.3.1 Effect of the program on self-management behaviours, self-efficacy and social support

The findings of the study supported the hypotheses that there would be significant differences in self-management behaviours between the experimental group and control group across the study period.

Participants in the experimental group reported significantly better overall self-management behaviours than the control group at 4 weeks and 12 weeks. Furthermore, changes in self-management behaviours in the areas of blood glucose testinging, foot-care and hyperglycemia/hypoglycemia prevention and treatment contributed most to the improvement in overall self-management, while self-management behaviours in areas of diet, exercise and medication remained stable across the study periods.

It is encouraging to see that a short-term, community-based, peer-led program was generally effective in producing change in self-management behaviours as early as 4 weeks post intervention, and all gains were

382 maintained very well until 3 months post intervention. The results were slightly different from findings shown in previous research where behaviour change took place at least 2 months or even longer following the intervention (Glasgow, Toobert et al. 1992; Anderson, Funnell et al.

1995; McKay, Glasgow et al. 2002; Corbett 2003; DeCoster and George

2005). In addition, participants in this study were people aged 60 years and over, and a majority of them had type 2 diabetes for more than 5 years. It is likely that they had reached a stable, either good or poor, self-management routine, and it could be very challenging for them to change their behaviour. Previous studies suggested that interventions designed to improve self-management behaviours may be less effective when involving older people (Ersek, Turner et al. 2003; Elzen, Slaets et al.

2007). However, our findings show that older Chinese people with type 2 diabetes can make substantial behaviour changes if provided with a program tailored to their needs. Therefore, the current intervention provides a promising way to target this hard-to-change population.

According to the theoretical framework and a substantial body of literature, self-efficacy and social support are two determinants of self-management behaviours, and these two concepts were carefully integrated into the current program. Several researchers have argued that

383 it is important to not only evaluate the effect of behaviour change, but also the targeted determinants, which can provide insight into the dynamics of changing behaviours (Van Sluijs, Van Poppel et al. 2005). In the current study, the intervention effect on these two predicting factors was assessed together with behaviour change. The findings conclude that there were significant differences in overall self-efficacy and social support between the experimental group and control group across the study period. These observations provide convincing evidence that self-efficacy and social support can be enhanced through carefully designed interventions, and they further suggest possible relationships between these two factors and the manifestation of self-management behaviours.

The effectiveness of the program may be attributed to several factors.

Firstly, integrating the principles of the selected theoretical framework contributed to the effectiveness of the program. Self-efficacy can be enhanced from four sources: performance accomplishments; vicarious experience; verbal persuasion; and physiological feedback (Bandura,

1997), and various related strategies have been suggested (van de Laar and van der Bijl 2001; Jacob 2002; Dye, Haley-Zitlin et al. 2003; Allen

2004). These strategies were carefully incorporated into the design and

384 implementation of the program. Various teaching methods were used during the BDI classes, which were also helpful to enhance self-efficacy.

For example, demonstration and return-demonstration of self-administered blood glucose test was used to promote self-efficacy through performance accomplishment. Group discussion gave participants the opportunity to share experiences; therefore people benefited from successful examples (vicarious experiences). Verbal persuasion persisted throughout the classes as health professionals encouraged participants to try a healthy lifestyle, and participants provided mutual encouragement from time to time. Regarding physiological feedback, one BDI session specifically focused on stress management, and taught people how to deal with it using self-talk and muscle relaxation skills. SSS activities included a collective meeting every two weeks and flexible individual/small-group communication. Various SSS activities were designed to incorporate self-efficacy strengthening strategies. For example, through “modeling by peer leaders”, participants learned of peers’ success of day-to-day self-management (vicarious experiences), and received encouragement from leaders and /or other peers (verbal persuasion). Through

“contracting and reporting”, peer leaders used verbal persuasion to encourage participants to set behaviour goals. During the following weeks, participants worked on achieving these goals, and when they really did,

385 their success led to increased self-efficacy (performance accomplishment).

Social support was categorised into five components: tangible support, emotional support, informational support, positive interaction, and affectionate support (Sherbourne & Stewart, 1991), and many strategies have been suggested to enhance social support from these aspects

(McKay, Glasgow et al. 2002; Finfgeld-Connett 2005). During BDI, informational support was improved through provision of diabetes related knowledge and skills, advice and feedback. Group discussion and question and answer sessions promoted communication between the health professionals and participants and among participants themselves, which promoted an increase of both emotional and informational support.

The SSS activities provided good opportunities for participants to get access to available community resources and contact with health professionals (through “bridging”), and to receive active listening, warm consolation, and useful advice from group members (through “contracting and reporting” and “small-size/ individual counseling”). Participants were encouraged to join together for leisure time, such as doing exercise and going to the fresh market. Therefore, tangible support, information and emotional support, and positive interaction could be improved. Finally,

386 when much closer relationships with each other were established, affectionate support, which means much deeper feelings, including trust, empathy and sincere caring, appeared.

Secondly, the feature of the group intervention contributed much to the effectiveness of the program. Education in a group setting can facilitate individual self-disclosure, mutual comparison and support, and interpersonal feedback. Group effects may also help in the maintenance of successful changes in behaviour and attitudes. Previous studies have specifically compared group and individual self-management interventions for type 2 diabetes, and reported that group-based interventions resulted in greater improvements than more individualised approaches (Rickheim, Weaver et al. 2002; Kulzer, Hermanns et al. 2007).

In addition, group intervention was listed as one important factor for effective social support interventions according to a systematic review by

Cattan, White, Bond, & Learmouth (2005). In the current self-management program, the BDI part provided diabetes related education in a group setting, while the SSS activities created many opportunities for further peer group interaction.

Thirdly, the current program involved peer-led education. Effective social

387 support interventions should target the specific population according to the systematic review by Cattan and colleagues (Cattan, White et al.

2005). Accumulated studies also suggested peer groups among people with the same chronic health problem as a promising way to improve social support, health behaviour and outcomes (Glasgow, Boles et al.

2003; Heisler and Piette 2005). Social support networks need to be established among people sharing common experiences, thus they feel a sense of intimate familiarity, and more possibility for reciprocal support

(Finfgeld-Connett 2005). Furthermore, it is well documented that lay people/peer groups play a crucial role in promoting self-efficacy, especially through vicarious experience and verbal persuasion (Bandura

1997; Kocken and Voorham 1998; Turner and Shepherd 1999; Dennis

2003; Lorig, Ritter et al. 2003). Participants in this study were older people with type 2 diabetes living in the same community, who might face the same difficulties and have the same worries in daily life. They shared their experience of day-to-day self-management with peers, including difficulties, adapting processes and achievement, who acted as positive role models. Because peer leaders were similar to the general participants, their success had a more convincing effect on self-efficacy of the others. In addition, suggestion or encouragement from peer leaders, who had a good understanding and close relationship with each other and

388 were regarded as reliable sources, was more likely to produce more satisfying outcomes.

Fourthly, peer leaders were an important component of the study. They cooperated with health professionals and the researcher, assisting in most of the delivery process of the program. The competence of the facilitator/peer leader plays a crucial role in the success of self-management programs. Although many studies achieved success through well-prepared peer leaders (Kocken and Voorham 1998;

DeCoster and George 2005; Swerissen, Belfrage et al. 2006), some researchers reported failure due to incompetence of facilitators

(Adolfsson, Walker-Engstrom, Smide, & Wikblad, 2007). In order for peer leaders to function well, considerable efforts were invested in the current study. Recruitment through individual meetings, intensive and continuous training, regular supervision, and prompt support were used.

Baseline data from peer leaders demonstrated that they were sensitive and confident with diabetes self-management. The specific training program for peer leaders received high evaluation, and was viewed as providing necessary skills. Peer leaders showed strong enthusiasm and worked well during the study period. Peer leaders believed that they handled things well, while peers expressed satisfaction toward the program. All this

389 information verified that these peer leaders were well prepared and qualified, which contributed to the success of the program.

Fifthly, there have been many studies targeting self-efficacy and self-management behaviours, which were conducted in various environments, from clinic-/organisaton-based, community-based to internet-/telephoned-based. The current study tested a community-based program. Since participants lived in the same neighborhood and would see each other day to day because of the high residency density, it would be easier for these participants to establish peer groups, and provide mutual support. In addition, the Community Health Service Centre provided fundamental support to the design and implementation of the program, such as basic focus group discussion, presence of health professionals in SSS activities, and supervision and support for peer leaders. Community health professionals had a better understanding of environmental, social and personal factors that would influence participants’ self-management behaviours. Thus, partnership with community could help participants to identify possible solutions and available resources in their familiar situation, and promoted subsequent enhancement (Yip 2002; Jack 2003). Furthermore, community-based programs can strengthen community social networks and lead to a change

390 in community environment, which may influence self-management behaviors from a broader level.

Finally, although the program relied heavily on peer leaders, the presence of health professionals also contributed to the success of the program. On the one hand, because of the nature of disease, diabetes self-management involves more specific knowledge and skills, such as hypoglycemia and insulin, than many other chronic diseases. Therefore, the BDI sessions delivered by health professionals are necessary to provide the basis for further peer activities. On the other hand, the presence of professionals was necessary for facilitating establishment and for the maintenance of peer groups. Though health professionals are not usually viewed as good resources of social support, patients do prefer their advice on medical problems (Finfgeld-Connett 2005). In the Chinese culture, it is common that people tend to rely on health professionals’ advice related to treatment of disease. According to focus group findings, these participants could get information from different sources, but they complained there was no place to confirm it and felt confused. Therefore, the presence of a health professional at SSS activities (each fortnightly collective meeting) was a symbol that these activities were supervised and there would be no incorrect information, which eased participants’ uncertainty and increased

391 their enthusiasm. Health professionals could also provide prompt help to peer leaders in case of unexpected questions or potential mistakes. The importance of a professional presence, especially at the early stage was confirmed by previous studies targeting social support groups as well

(Morris 1998; Groessl and Cronan 2000; Gilliland, Azen et al. 2002;

Kotani and Sakane 2004; DeCoster and George 2005).

Apart from the general level of self-management behaviours, the intervention effect on specific areas was examined as well. Due to the complexity of diabetes self-management, it is not surprising that there was an inconsistent effect on behaviour change from one specific behaviour area to another. Previous studies also provide evidence that an intervention often led to uneven effects on diversified areas of self-management (Bernal, Woolley et al. 2000; Chan, Siu et al. 2005). In the current study, practice of blood glucose testing, foot-care and hyperglycemia/hypoglycemia prevention and treatment improved significantly, while the practice of diet, exercise, and medication remained unchanged. Several possible reasons for the inconsistency are discussed below.

Firstly, a possible explanation could be the “ceiling effect”, which means

392 that participants had quite high self-management behaviour scores in some areas at baseline, so there was little room for further improvement.

For example, the mean score for Self-Management of Diet was

22.48±5.55 within a range of 6-30, and Self-Management of Medication was 12.58±2.78 with a range of 3-15. These data indicate that participants were already performing these behaviours quite frequently. Therefore significant improvements in these behaviours would be difficult to achieve.

Secondly, the high baseline level of behaviour scores might have resulted from “overestimation”. Overestimation is likely to happen when participants have some understanding, but lack a clear idea of which skills and abilities the specific measures mean (Pratt, Mcguigan et al. 2000). In

China, diet and medication are more familiar concepts to people with diabetes, as they have been more reinforced by the media than other self-management areas. Athough participants had already received information in these areas, misconceptions existed. Results from the focus group discussion verified that participants’ perceptions of self-management in specific areas were questionable. For example, they equated diet control to not eating sweet food, and good medication to taking medication even with skipping and self-adjustment of dosage.

393

With “overestimation” at baseline, a shift of internal standards of the participants, as a result of the proposed intervention, is likely to happen, which has been suggested by many researchers (Anderson, Funnell et al.

1995; Kuijer, De Ridder et al. 2007). For example, a patient may be very positive about his/her behaviour to manage the disease at the beginning.

During the intervention, he/she may learn that optimal disease control involves a lot more than he/she thought it did, thereby changing his/her internal standard about what good self-management includes. Thus he/she considered more influencing factors and his/her self-evaluation changed accordingly. It is plausible that the shift of internal standards may compromise the attempt to detect an intervention effect through comparisons between intervention and control groups since an intervention-induced change of internal standards will not occur among participants in the control condition.

As mentioned before, some behaviours, such as diet and medication, are more familiar concepts to people with type 2 diabetes in China. Therefore, the participants might have tried these behaviours before and reached

“saturation”, which means that the performance of these behaviours was relatively stable and harder to change. Compared to these “old”

394 behaviours, the participants might have greater eagerness and readiness to try self-management behaviours in other areas that were newly introduced.

Many researchers have advocated that the best time for diabetes education should be just after diagnosis (Krug, Haire-Joshu et al. 1991; Uitewaal,

Hoes et al. 2005). Their suggestion implied that it would be easier to assist diabetic patients to adopt self-management behaviours when they have high enthusiasm. Missing the opportunity to provide diabetes education during the beginning period might have hindered improvement of self-management behaviours to a certain extent.

Furthermore, not involving family members might have hindered the intervention effect on specific self-management behaviours, such as diet and exercise. Family plays an important role in diabetes self-management.

In the Chinese culture, the family relationship is most valued. People, especially women, normally accommodate the taste of every family member. They might view changing meal plans as bothering/embarrassing others, and are not willing to do this. Although the program integrated topics such as how to cope with similar situations without disproportionately sacrificing their own health, it may not have been strong enough to address the deep-rooted tradition. Rather than focusing on individual management and support from peers and health

395 professionals, involving family members may address the family environment and enhance self-management of diet to a certain extent.

Family members can also have a positive/negative influence on self-management behaviours through helping with family responsibilities.

Older people tend to take care of their adult children and/or grandchildren living in the home or spending extended periods of time there in China.

Strictly adhering to self-management behaviors, such as regular exercise, might involve an additional time commitment. Considering the majority of our participants were older females, who had relatively intensive family responsibilities and probably faced more time constraints, it may have been difficult for them to achieve significant improvement without support from family members.

The weather might have prevented the improvement of self-management behaviour, especially exercise. This study was carried out from May to

August, the hot and humid season in Shanghai. Therefore, it would be unrealistic and unsafe to encourage older people to do a lot of outdoor physical activities. Although the program introduced possible ways for people to do exercise conveniently at home, such as walking up stairs instead of taking a lift and standing when watching television, it may still have been difficult in this season.

396

Last but not least, researchers have noted that some self-management behaviours, such as diet and exercise, are more traditional, and therefore require a more comprehensive change in lifestyle, and are more difficult for patients to practise (Newman, Steed et al. 2004). Improvements in these areas may need more effort and more time. Participants might be likely to try first in areas which they perceived as more feasible. When they achieved positive experiences in a specific behaviour, their self-efficacy might increase at both general and task-specific level.

General self-efficacy, in turn, controls the degree of effort and persistence put into a new behaviour (Rapley, Rapley et al. 1999). Researchers also suggested that interventions addressing self-efficacy should approach behavioural change in small steps to ensure success (Dye, Haley-Zitlin et al. 2003). Hence, after trying and gaining successful experiences in relatively easy aspects, participants may advance to other areas. In the current study, the intervention effect was revealed only in relatively easy aspects, but the effect on those hard-to-change behaviours may require long-term follow-up.

As mentioned before, two determinants, self-efficacy and social support, were assessed together with self-management behaviours. The variable

397 effect of the intervention across different self-management areas was also mirrored in these two variables. The participants showed improvement in selected self-efficacy areas, which were closely linked to the patterns of change in self-management behaviours. These observations further suggest possible relationships between the self-management behaviours and confidence in performing them.

As to social support, the program had no effect on tangible support.

Although a possible ceiling effect existed, it is likely that the non-significant results were mainly due to not involving family members.

Tangible support means providing material or other practical help, including services, financial assistance, or goods. In the current program, strengthening of tangible support was addressed through facilitating convenient blood glucose testing, use of available community services and contact with health professionals. However, the MOS-SSS assessed tangible support related to meal preparation and help with family chores.

It is widely acknowledged that family members and/or care givers should play key roles in helping with household duties other than peers or health professionals. Therefore, possible improvement in tangible support in this study, other than help with household things, would not be detected by the

MOS-SSS scale. The findings that there was little effect on Tangible

398 Support verified that lack of family support may hinder the program to certain extent. It suggested that some self-management behaviours, such as diet and exercise, might also not improve for the same reason.

10.3.2 Effect of the program on depressive status, quality of life and health care utilisation

According to the theoretical framework and substantial literature, successful accomplishment of self-management behaviours can ease depression, increase quality of life, and reduce health care utilisation

(Glasgow 1999; Norris, Engelgau et al. 2001; Norris, Nichols et al. 2002).

The findings of the study supported the hypothesis that there would be significant differences in depressive status between the experimental group and control group across the study period. The participants in the experimental group had a significantly lower CES-D score by 2.5 points than participants in the control group, at level p=0.05. The improvement of depressive status might be attributed to the accompanying change of self-management behaviours. Successful accomplishments of self-management behaviours can make people gain a sense of control on own disease and perceive their situation more positively, which is helpful to ease depression. Furthermore, the social nature of the intervention

399 might contribute to the improvement as well. Previous studies reported that there was an inverse relationship between social support and depression symptoms (Harris, Cook et al. 2003; Koizumi, Awata et al.

2005; Tsai, Yeh et al. 2005). During the program, older people with type 2 diabetes could expand their social circle, and communicate positively with peer leaders, peers and health professionals. According to the focus group findings, many participants commented on how much they enjoyed attending peer group activity, such as receiving warm attention, not feeling lonely any more, and finding someone worse off. All these can be helpful in alleviating depression. As to the four subcategories of depressive status, the intervention effect varied across them. It appeared that the program functioned well in decreasing interpersonal difficulties and providing positive experience, while it had a weaker effect in eliminating mood disturbance and physical complaints

However, inconsistent with our expectation, the current program had no statistically significant effect on quality of life and health care utilisation.

This finding was not surprising given that some previous studies did not produce the desired outcome in these areas as well (Glasgow, Toobert et al. 1992; Piette, Weinberger et al. 2000; Heisler and Piette 2005;

Swerissen, Belfrage et al. 2006; Elzen, Slaets et al. 2007; Kuijer, De

400 Ridder et al. 2007). There are several possible reasons for the non-significant results. One explanation is that the study period was too short to detect positive change in these areas. It is understandable that participants must first adopt and persist in self-management behaviours before a substantial influence on quality of life and health care utilisation is revealed. For chronic diseases, and specifically for diabetes, little effect was reported for change in perceived health conditions in short-term evaluation (Newman, Steed et al. 2004; Siu, Chan et al. 2007). In addition, previous studies found that evidence of a decrease in health care utilisation, such as visit to doctors, might emerge by 12 months (Barlow,

Turner et al. 2000). However, the current study was limited to a period of

12 weeks. Behaviour changes may take longer to translate into improvements in quality of life and health care utilisation. Greater differences may have been detected if changes were measured longer follow-up.

A second possible explanation may be related to selection of the measure for quality of life. The SF-36 has been one of the most widely used generic measures for health related quality of life measurement, and its internal reliability and validity has been tested in a broad range of patient populations. Therefore, in order to facilitate comparisons between

401 diversified chronic disease, and especially to facilitate comparisons between similar studies in Chinese population, SF-36 was selected as the measure for quality of life in this study. HRQoL is a comprehensive concept and affected by multiple physical, psychological and social-environmental factors. Theoretically, because of the nature of complex health conditions, the use of a generic measure is helpful in determining overall HRQoL.However, there is always controversy about measurement of HRQoL when trying to test effectiveness of disease-specific interventions (Glasgow, Toobert et al. 1992; Rubin and

Peyrot 1999; Piette, Weinberger et al. 2000; Terreehorst, Duivenvoorden et al. 2004; Smith, Forkner et al. 2005). According to previous studies, using a generic measure, and specifically SF-36, reported benefits less frequently than when a disease-specific measure was used (Faye 2000;

Harrison, Browne et al. 2002). In this study, the participants were older people with type 2 diabetes. A major part of them had more than one comorbidity. Therefore, the potential improvements on general quality of life with a diabetes-specific intervention may have been diminished by the severity of their other conditions. In contrast, a disease-specific

HRQoL measure that includes concepts closely aligned with concerns of diabetic patients may be more likely to show responsiveness following the self-management program.

402

Finally, a possible “floor effect” existed. In the current study, health care utilisation was measured by frequency of visit to doctors, Community

Health Service Center, emergency room, hospitalisation, and days of hosipitalisation in last month. Few participants reported visiting an emergency room or being hospitalised at baseline, thus floor effects were evident on these measures, and might have prevented opportunities for positive change.

10.4 Effect of the program among peer leaders

Inconsistent with our expectation, the hypotheses that peer leaders would improve significantly in overall self-efficacy and social support across the study period were just partially accepted. The findings seemed somewhat disappointing since various efforts were invested to strengthen self-efficacy and social support of peer leaders during the program.

However, the mean score ranges over time were quite large for both

Overall Self-Efficacy (99.08 – 101.67 – 109.42) and Overall Social

Support (59.65 – 65.68 -75.99), and power analysis showed that the statisticl power to detect a significant difference over time in these variables was fairly low. Therefore, it is most likely that the non-significant results of statistical analyses resulted from insufficient

403 statistical power due to the small sample size (N=12).

What is promising is, peer leaders did improve significantly in overall self-management behaviours across the study period. The findings are consistent with literature, which reported that peer leaders improved their own self-management behaviours from participating peer education program and acting as leaders (Davis, Leveille et al. 1998; Barlow and

Hainsworth 2001).

However, without significant improvement of overall self-efficacy and overall social support, the significant findings for overall self-management behaviours seemed a bit contradictory to assumed relationships between those two predicting factors and behaviours, and thus deserves careful thinking. It is most likely that simply being selected as peer leaders might have give peer leaders a “push” to do better. Acting as peer leaders promoted them to check their own behaviours cautiously, to behave as qualified role models as far as possible. This self-examination phenomenon was also verified by findings from qualitative feedback of peer leaders. In addition, it is possible that peer leaders tended to report positive change even when they did not achieve much since they were eager to meet the expectations of health

404 professionals.

Intervention effects on specific areas of social support, self-efficacy, and self-management behaviours were examined as well. Peer leaders improved significantly in information and emotional support, while not in tangible support, positive interaction, and affectionate support. As for self-efficacy, peer leaders improved significantly in self-efficacy of blood glucose testing while not in other areas. Peer leaders also had a significant improvement in self-management of blood glucose testing, foot-care and hyperglycemia/hypoglycemia prevention and treatment while did not change in other areas. Considering the complexity of diabetes self-management, self-efficacy and related social support, the uneven effects across different areas are understandable. Possible reasons include ceiling effect, shift of internal standards, family influence, weather influence, and the hard-to-change nature of some specific areas, which were discussed before in Section 10.3.

The findings rejected the hypotheses that peer leaders would improve significantly in depressive status, quality of life, and health care utilisation across the study period. There are several possible reasons for the non-significant results, including the short study duration, sensitivity

405 of general measure of quality of life in diabetes population, and “floor effect” for health care utilisation, which were discussed before in Section

10.3.

10.5 Program evaluation

Feedback from general participants and peer leaders was collected using both quantitative and qualitative methods. Both groups were very supportive of the current program. They expressed their happiness to participate in the program, their willingness to attend similar programs in the future, and their hope for continuation of such programs. In addition, inconsistent with previous studies, which suggests patients with a longer history of diabetes are more likely to drop out of education programs due to failed experience and associated sense of guilt (Clark, Hampson et al.

2004), there was a high retention rate of the participants (94.3%) in the current program. Hence, the evaluation outcome together with high retention rate revealed high levels of popularity of the program in older people with type 2 diabetes in China.

Both participants and peer leaders perceived the program as useful. They reported that the program helped them to improve knowledge, skills, attitude, self-efficacy, and self-management behaviours. In addition, they

406 benefited from positive interaction with peers and health professionals, and getting more social support. Peer leaders also achieved the “sense of worthwhile” through helping others and collaborating with health professionals. Consistent with the literature, the peer-led intervention appeared to be a very positive experience for not only general participants and peer leaders (Davis, Leveille et al. 1998; Barlow, Bancroft et al. 2005;

Ho 2007).

Furthermore, although there was no significant intervention effects on some variables, such as selected behaviours and quality of life according to statistical analysis, people did describe improvement in various aspects throughout the study. It is possible they received benefits from the intervention even though such benefits were not captured by the objective outcome measures. Therefore, the evaluation data were helpful to completely understand the impact of the current program.

The importance of peer group activities was well recognised by both general participants and peer leaders. According to peer leaders’ feedback, they appreciated their role and were very responsible. They also gave high evaluation of the training they received, saying it prepared them well for proposed responsibilities. In addition to an effectiveness test, the

407 evaluation data further demonstrated that, with appropriate training and support, peer leaders could help others confidently and effectively, which provides encouraging evidence for utilisation of peer education in older people with type 2 diabetes in China.

10.6 Strengths and limitations

There are several strengths of the study. Firstly, the current program was a package, consisting of both short-term education (BDI) and sustainable ongoing support (SSS activities). The BDI was delivered by health professionals in a large-group format. Although strategies to enhance self-efficacy and social support were integrated into BDI, the main purpose of this part was to pass on specialised knowledge and skills.

Previous studies suggested that education programs focusing on information may not achieve desired outcomes (Brown 1990; Brown

1999). It was therefore expected that without SSS activities, BDI would only produce a limited effect on behaviour change. In addition, a meta-analysis of self-management programs in diabetes found sharp declines in benefits only a few months after interventions ended (Norris,

Lau et al. 2002). Even if education sessions, such as BDI, lead to some change, it is most likely the improvement may deteriorate over time.

Many researchers suggest that, in order to maintain behaviour change,

408 periodic follow-up sessions are necessary (Anderson, Funnell et al. 1995;

Norris, Engelgau et al. 2001; Miller, Edwards et al. 2002; Corbett 2003).

A popular and effective approach to provide follow-up and support is through the use of community-based activities and non-professionals

(Fisher, Brownson et al. 2005). The nature of the current program, a community-based, peer-led program, makes it possible to be self-sustainable. After basic BDI, initial training of peer leaders and assisting with group establishment, SSS activities could be conducted continually, requiring minimal supervision and support from health professionals. Therefore, the SSS activities could act as long-term reinforcement.

Secondly, carefully integrating principles from the selected theoretical framework contributed to the success of the program. A supporting theoretical framework for an education program is essential since it provides a basis to develop the education contents, a rationale as to why and how the education will produce the desired outcome, and indicates the measurements to be used. According to the theoretical framework, for effective behaviour to take place, self-efficacy conducive to that behaviour must be enhanced and social support must be strengthened.

Self-efficacy can be influenced through four sources: performance

409 attainments, vicarious experience, verbal persuasion, and physiological feedback (Bandura 1997). Social support includes five core functional aspects: tangible support, affection, positive interaction, emotional support, and informational support (Sherbourne and Stewart 1991), and increase of social support can be realised through changing these aspects.

Various strategies were carefully incorporated into the design and implementation of the program, both the BDI and SSS parts, which has been discussed in Section 10.3.1.

Thirdly, in designing, implementing and evaluation of the program, perspectives from different points of view were collected, including older people with type 2 diabetes, health professionals and peer leaders. People with chronic disease and health professionals may have different expectations related to self-management behaviours. By integrating both patients’ and professionals’ points of view, a better understanding of their needs could be achieved, which is crucial to duly develop, supervise, and amend an ongoing health education program. The current study achieved a high retention rate of 94.3%, which implied the popularity of the program.

Finally, a major strength of the study is the use of qualitative and

410 quantitative methods. At the beginning, this study conducted a needs assessment using a qualitative approach, which provided a substantial basis for designing the intervention tailored to the specific needs of this population. Deep understanding of participants’ beliefs and practices is a key to make the program culturally sensitive, which is helpful to facilitate the delivery process as well as promote positive health outcome. A quasi-experimental design plus qualitative evaluation at completion made it possible for comprehensive exploration of the impact of the program.

The qualitative data added depth to the quantitative results, as well as helping to understand the process, and detecting subtle but meaningful changes.

Just as there are study strengths, there are several limitations in this study.

Firstly, the use of a convenience sample and lack of a randomised control group (RCT) design limit the external and internal validity of study findings. In particular, participants in the current study were self-selected.

Selection bias is likely to have occurred, as participants, who volunteered to attend the program, might be health conscious and more motivated to adopt behaviour change than most older people with type 2 diabetes. In addition, the small sample size of peer leaders hindered the effort to detect significant change. Therefore, involving more individuals,

411 following a more strict sampling framework and using an RCT design in future studies would provide a more rigorous examination of the program.

Secondly, there were some weaknesses for selected measures. All the outcome variables were measured by self-report measures. When using self-report measures, respondents’ internal standards may change over time, i.e. the internal standard at post-test point is likely to be higher than that at pretest points, since respondents may understand more and evaluate things from a more strict perspective following the intervention.

Therefore, the shifting internal standards may disturb the effort to detect the real effect of intervention. Furthermore, some of the measures used in this study, such as SF-36 and MOS-SSS, might not have been sensitive to changes experienced in this population or showed signs of ceiling effect or floor effect. Hence, the chance to detect an intervention effect might have been hindered. In addition, the measures were investigator-administered, which increases the possibility of response change, because the participants might tend to give a more positive response to avoid embarrassment or to please investigators. Therefore, selection of more appropriate measures and application of self-administered measurement in future studies deserves more consideration.

412

Thirdly, this study covered a short period. The self-management program consisted of BDI and SSS activities. The SSS activities were expected to be self-sustainable and could act as long-term follow-up even when the study was completed. However, the current study only observed a short-term follow-up, and therefore assessment of outcome variables was carried out during a short period. The study period was relatively short compared to the duration of type 2 diabetes. Improvement of some outcome variables, such as selected behaviours, quality of life and health care utilisation may need a longer duration to appear. The short program length may have limited any significant differences in some variables from being revealed. A longer observation period is suggested for future study.

Fourthly, not involving family members may have limited the impact of the intervention to a certain extent. Considering the decreasing family size and increasing responsibilities outside of the home, it was expected to be difficult to recruit family members, to organise education programs for them, and even harder to retain them in such programs. The most pragmatic approach was taken by focusing on factors that were more available and more amenable to change. Therefore, the current study

413 focused on peer education, receiving assistance from health professionals and community organisation staff. However, due to the strong influence of family in Chinese culture, the intervention effect might not have been brought into full play. More emphasis should be put on the family influence, especially for diabetes self-management studies in China.

Finally, in this study, peer leaders had certain flexibility in contacting peers, selecting topics for gathering meeting, and organising group activities. Although some peer leaders took their own memos, there were no standard records for number of contacts, the length of each contact and the process of such contacts. Lack of detailed description of SSS activities limits understanding of the real process of SSS activities to a certain extent. Furthermore, the nature of peer groups was expected to vary, depending on the participants and on the peer leaders. However, full comparison between different peer groups was not possible since there were not enough number of subjects. More exploration of the real interaction process among peer groups should be considered in future studies.

10.7 Implications for practice

Some health providers tend to expect that it is relatively difficult for older

414 people, or people with diabetes for a long time to initiate behavior change after receiving education compared to general diabetic patients. It is also suggested that more emphasis should be put on this relatively hard-to-change population. Our findings show that older people with type

2 diabetes can make substantial lifestyle changes if provided with support and a program tailored to their needs. This study had a high retention rate and very positive comments form participants. It appears to be a promising way to promote diabetes self-management in this population.

Opinions from both older people with type 2 diabetes and community health professionals were an important basis for development of the current program. It is not unusual that education providers and receivers may have different expectations about an education program. Therefore, a comprehensive needs assessment, instead of absolute decision by health education providers, is necessary to develop education programs that are beneficial, culturally appropriate and feasible, and can be applied by health professionals in their daily work.

This study adds to the growing evidence of the importance of self-efficacy and social support as a mechanism for achieving behaviour change. Thus, enhancement of self-efficacy and social support should be

415 considered for incorporation in future diabetes education programs.

Various strategies used in the current program, such as role-modeling, contracting and reporting, appear to be feasible in health education programs targeting older people with type 2 diabetes, and could be applied by health professionals in future educational programs.

Chronic disease has been suggested to be the primary cause of death and disability in the world by 2020 (Epping-Jordan, Bengoa et al. 2001).

Finding the best management for chronic disease is therefore imperative, and self-management has been advocated as an effective way to deal with increasing number of patients and escalating costs. While there are differences in the nature of each chronic disease, there are similarities in the cognitive processes required for successful self-management behaviours. Hence, although this self-management program specifically targeted diabetic patients, the useful strategies to strenthen self-efficacy and social support gained from the study, could be applied in self-management education programs for people with other chronic diseases.

Peer-led education has been suggested as an effective and economical way to operate education programs (Davis, Leveille et al. 1998; Parkin

416 and McKeganey 2000; Siu, Chan et al. 2007). It is appealing on various levels. On the one hand, peer-led education may be more popular and acceptable among targeted populations since people with similar status tend to gather together. On the other hand, although use of peer leaders also required effort, such as peer leader recruiting and training at the early stage, the investment was relatively minimal, just ongoing support, when the peer-led group continued. In addition, peer leaders live in the same neighborhood and are viewed as reliable by others, so they might have a stronger and more prolonged influence on community members.

Considering the potential size of the target audience that may be reached, peer-led education program is even more economical. The unsatisfying situation of diabetes education in China is attributed to numerous individual, environmental and healthcare system-based variables. Among them, insufficient health care resources, especially in primary care and community services, may be a major barrier. Therefore, the challenge is not only to develop an effective diabetes self-management program, but also to find a practical and cost-effective way to deliver it in “real world”.

This study verified the feasibility of using trained peer leaders to provide health education in China. Through peer-led programs, peer leaders can act as qualified substitutes for or adjuncts to health professionals, providing guidance and assistance in forms more palatable to older adults,

417 while health professionals can expand their reach through training and support of peer leaders to offer help to others. Therefore, using peer-led education programs may be a promising way to promote health education programs while not intensifing the tension of the health care system.

This self-management program was a community-based program.

Partnership with community ensured that the program was tailored to the unique needs and specific cultures of this population. Collaboration with community organisations provided practical support, such as calling participants, arranging gathering sites and convenient blood glucose testing. Community-based programs can arouse public interest, discussion and action toward diabetes self-management; therefore the impact of the program is likely to be expanded and sustained.

One notably peer-led educational program, the chronic disease self-management program (CDSMP), which was developed at Standford

University and based on Bandura’s theoretical model of self-efficacy, has been tested in China recently and achieved positive outcomes (Fu, Fu et al.

2003). Although the current self-management program also integrates the concept of self-efficacy and uses the form of peer-led education, it is distinct from CDSMP on two major points. Firstly, CDSMP was designed

418 as a generic model that could be used for self-management education, regardless of the particular chronic disease, while the current program aims to promote self-management behaviours specifically among people with type 2 diabetes. The principal assumption of CDSMP is that patients with various chronic diseases have similar self-management problems and disease-related tasks, such as stress control and communication with health professionals, and can benefit from a program for them all.

However, as several researchers argued, self-management education for a homogeneous patient group may have advantages over one for a heterogeneous patient group because during the group process patients have better opportunities to share their disease specific problems, and are more likely to function as role models for each other (Lorig, Ritter et al.

2005; Smeulders, van Haastregt et al. 2007).

Secondly, peer leaders in CDSMP assume relatively formal educator role, compared to peer leaders in current self-management program who undertake less challenging responsibilities. CDSMP require paired peer leaders, who normally receive 20 hours of training, to teach the education module according to a detailed teaching manual and sever as role models for the participants (Lorig, Ritter et al. 2003; Lorig, Ritter et al. 2005).

The concept of a peer educator is innovative to Chinese culture.

419 Traditionally Chinese people relied heavily on health professional’s advice on medical problems. Therefore, expecting peer leaders to fulfill such tasks independently may face possible barriers. Though having been replicated successfully in Shanghai, when tested in Hong Kong, CDSMP was modified to be conducted by paired professional leader and peer leader (Siu, Chan et al. 2007). Unlike the CDSMP, formal education sessions is still delivered by health professionals in the current self-management program. What peer leaders should do is to provide social support and influence self-efficacy through organising peer group meetings and initiating contacts among peers. These tasks are relatively flexible and easy, and may be less intimidating to the elderly volunteers.

In summary, this self-management program is characterised by targeting diabetes-specific population and involving peer leader in a practical way, which can provide more options for clinical practice in addition to existing CDSMP.

10.8 Recommendations for future research

Based on the encouraging findings of study, a peer-led self-management program appears feasible among older people with diabetes living in the community in China and may have positive effects on patients’ self-efficacy, social support, self-management behaviors and depressive

420 status. In order for a more rigorous evaluation, involving more participants, using a more representative sampling method and using a randomised control group design should be considered in a future study.

In addition, it is expected that with available continuing support, the SSS activities of the program could sustain and involve more people in the community. Therefore, future studies should investigate the lasting effects and the evolving process of such a program over a longer period of at least one year. Furthermore, the burden of diabetes and the effect of an intervention focused on it may be evaluated more sensitively by a disease-specific HRQoL measure. Utilisation of both a generic measure, such as SF-36, and a disease-specific measure of HRQoL in future studies may warrant comprehensive exploration of the impact on HQRoL.

The current study demonstrated that an intervention involving peers and health professionals could effectively promote self-management behaviours in older people with type 2 diabetes. Further research is needed to involve more subjects and reveal more detailed information, such as the number of contacts, length of each contact and the process of such contacts among peer groups. Therefore, some guidelines for a quality peer activities could be produced that may lead to a more effective peer-led health education program. In addition, the family has a powerful

421 influence on self-management in Chinese culture even more than in western culture. Therefore, lack of positive support from family members might serve as deterrents to positive behaviour change. By recognising the important role of family members and including them in future programs may exaggerate the effectiveness of the program to a certain extent.

In the face of growing numbers of older people with diabetes and significant resource constraints facing the health care system in China, it is imperative to explore cost-effective ways to provide self-management education. Although the use of peer leaders required resources, this investment of resources may be relatively lower if people become better self-managers and less reliant on health professionals. In addition, the modest health professional involvement in this study suggested that this approach to deliver diabetes education appeared to be more economical compared to traditional professional-delivered programs. Use of peer leaders also allowed more courses than could be offered if the program was more dependent on the small supply of health professionals. However, without a comprehensive cost analysis, definite conclusions cannot be drawn. Therefore, longer follow-up and rigrous cost-effective analysis should be integrated into future studies.

422

10.9 Conclusion

In conclusion, a new peer-led self-management program for older people with type 2 diabetes living in the community in China was developed and successfully implemented. In close collaboration with community organisations, the program was delivered by health professionals and trained peer leaders. Overall the findings suggested that older people with type 2 diabetes can make significant improvement in social support, self-efficacy, self-management behaviours and depressive status, if provided with an appropriately designed program. Furthermore, the feasibility of using trained peer leaders and the benefits of older Chinese people with type 2 diabetes helping themselves were demonstrated.

423

424 Appendixes

Appendix 1 – Information sheet and consent form for focus group discussion

Information Sheet

(for older people with type 2 diabetes)

Dear,

Thank you for your interest in the “Effectiveness of a peer-led self-management program for older people with type 2 diabetes in China” research. The following provides you with information about this research, in order to assist you to decide whether to participate or not.

I invite you to participate in this research because you are an older person with type 2 diabetes. If you agree to participate, you will take part in a focus group discussion with me (the Chief Investigator) and a small number (8~10) of other older people with type 2 diabetes. This discussion will provide important information for developing an appropriate education program. In the discussion, I will ask you about the difficulties you have faced when managing your diabetes; which kind of help you need most and what education on diabetes should be provided. The discussion will be recorded on audiotape and take about one hour.

There are no known risks to you through participating in the research, and you may well benefit by becoming more aware of your own needs for managing your diabetes. Any information that you provide will be kept

425 confidential and will not be used for any other purpose. When the research is finished the results will be published. However, no identifying information will be published.

While I would encourage you to participate in the research, it is up to you to decide whether you will do so. That is, participation is entirely voluntary, and you have the right to withdraw at any time without comment or penalty. A decision not to participate, or to withdraw, will have no impact on present or future medical services that you may receive from health professionals.

This research is part of a degree of Doctor of Philosophy at Queensland University of Technology, Australia and will be carried out by me (Shen Huixia; PhD candidature of School of Nursing, QUT; Lecturer of Department of Nursing, Tongji University) under the guidance of an experienced research team including Professor Helen Edwards, Professor Mary Courtney and Dr Jan McDowell at QUT.

You, or a relative or friend, are welcome to contact me, the Chief Investigator, on 86-21-5662 4378 (China), if you have any enquiries about this research. Alternatively, Professor Helen Edwards, who is the Principal Supervisor, Head of School of Nursing QUT, can be contacted on 61-7-38643844 (Australia). If you have any concerns about the ethical conduct of this research, the Secretary of the QUT University Human Research Ethics Committee may be contacted on 61-7-38642340 (Australia) Thank you very much for helping us with this research.

Shen Huixa PhD candidature School of Nursing, QUT

426 Consent Form

(for older people with type 2 diabetes)

Project Title: Effectiveness of a peer-led self-management program for older people with type 2 diabetes in China Investigator: Ms Shen huixia QUT, Faculty of Health, School of Nursing, PhD candidature Principal Supervisor: Professor Helen Edwards QUT, Faculty of Health, Head of School of Nursing

My signature below will indicate that: y I have read the attached information sheet and understand the nature and purpose of this study and the potential risks involved. y I have been informed participation is entirely voluntary, and that I have the right to withdraw at any time without comment or penalty. y I have been informed that my participation or non-participation to this study will have no effect on medical services that I may receive from health professionals. y I have been informed that the discussion will be tape-recorded and I have been guaranteed that all information I provide will be kept confidential and will be used only for research purpose.

I understand that I can contact Ms Shen (86-21-56624378, China), Professor H. Edwards (61-7-38643844, Australia), or the Secretary of Human Research Ethics Committee of QUT (61-7-38642340, Australia), if I have any enquiries about this study.

Participant: Date: Witness: Date:

I have explained the nature and purpose of this study to the above participants and have answered their questions.

Investigator: Date:

427 Information Sheet

(for community health professionals)

Dear,

I invite you to participate in this research because you have contact with older people with type 2 diabetes frequently in your work. If you agree to participate, you will take part in a focus group discussion with me (the Chief Investigator) and a small number (8~10) of other community health professionals. This discussion will provide important information for developing an appropriate education program. In the discussion, I will ask you about the difficulties older people with type 2 diabetes may have faced when managing their diabetes; which kind of help they need most and what education on diabetes should be provided. The discussion will be recorded on audiotape and take about one hour.

There are no known risks to you through participating in the research, and you may well benefit by becoming more aware of the older people’s needs for managing their diabetes, which will be helpful for your work. Any information that you provide will be kept confidential and will not be used for other purpose. When the research is finished the results will be published. However, no identifying information will be published.

428 position or working situation.

Shen Huixa PhD candidature School of Nursing, QUT

429 Consent Form

(for community health professionals)

In signing this consent, I am giving my consent to become a member of a focus group that will provide information for the above study which aims to improve the health status of older people with type 2 diabetes living in the community in China. My signature below will indicate that: y I have read the attached information sheet and understand the nature and purpose of this study and the potential risks involved. y I have been informed participation is entirely voluntary, and that I have the right to withdraw at any time without comment or penalty. y I have been informed that my participation or non-participation to this study will have no effect on my work situation or my position. y I have been informed that the discussion will be tape-recorded and I have been guaranteed that all information I provide will be kept confidential and will be used only for research purpose. y I understand that I can contact Ms Shen (86-21-56624378, China), Professor H. Edwards (61-7-38643844, Australia), or the Secretary of Human Research Ethics Committee of QUT (61-7-38642340, Australia), if I have any enquiries about this study.

Participant: Date: Witness: Date:

I have explained the nature and purpose of this study to the above participants and have answered their questions.

Investigator: Date:

430 Appendix 2 – Focus group discussion guide

Focus Group Discussion Guide (for older people with type 2 diabetes)

English version Introduction y As we go around the room, please give your name and briefly tell us a little about yourself.

Social support y How much do your friends/ family know about your diabetes? y How much support do you feel you have got in dealing with diabetes? y What support, if any, have been important to you during the management of diabetes? y Are you satisfied with the support you have got? y What would make you feel more supported?

Barriers y What is the most difficult part for you to manage diabetes? y How often do your good intentions for diet/ exercise/medication/ blood glucose test/ foot care/ etc., get sabotaged by time, cost, person or other factors? y How inconvenient is it to do diet/ exercise/medication/ blood glucose test/ foot care/ etc., regularly? y What are the major reasons that people do not adopt diet/ exercise/medication/ blood glucose test/ foot care/ etc.?

Self-efficacy

y How well do you take care of yourself? y Can type 2 diabetes be successfully controlled? y Do you think other people with diabetes manage their diseases better than you? y What is your evaluation of your own ability to manage this disease? y Are you confident that you will follow the regimen in the future?

431 Self-management behaviours y What are some aspects of diabetes management you feel you are good at? y What are some aspects of diabetes management you feel you are not very satisfied with? y How committed are you to diet/ exercise/medication/ blood glucose test/ foot care/ etc.? y What is your diet/ exercise/medication/ blood glucose test/ foot care/ etc. habit?

Help needed

y What would help you most to manage diabetes? y In addition to education program, are there other things can be done to help you manage diabetes? y What would be most appropriate ways to offer an education program? y What would be your suggestions to be included in planning an education program?

Chinese version

简介

y 大家好，首先请大家依次简单介绍一下自己，相互认识一下。

社会支持

y 你们身边的亲戚朋友知道你们有糖尿病吗？

y 你觉得你在控制糖尿病方面得到过多少支持和帮助？

y 你认为，哪些支持和帮助对你（控制糖尿病）来说是最重要的？

y 你对自己所得到的支持和帮助感到满意吗？

y 你希望获得哪些更进一步的社会支持和帮助？

432 障碍

y 在控制糖尿病时，哪些方面让你最感困难？ y 你有没有这样的经历，原来打算严格控制饮食（或者坚持锻炼，服药，监测血糖，

足部护理等），结果却由于时间、费用、他人影响等原因放弃了？

y 严格规律的饮食控制，锻炼，服药，监测血糖，足部护理等会（给生活）带来哪些

不便？

y 人们无法坚持饮食控制，锻炼，服药，监测血糖，足部护理等，最主要的原因是

什么？

自我效能

y 你自我保健做得怎么样？

y 2型糖尿病的病情能够控制吗？

y 你觉得其他糖尿病人在病情控制方面会不会比你做得好？

y 你怎样评价自己管理糖尿病的能力？

y 你是否有信心在将来能遵嘱自我管理好糖尿病？

自我管理行为

y 你觉得自己在糖尿病控制上，哪些方面做得比较好？

y 你觉得自己在糖尿病控制上，哪些方面做得不太好？

y 你能严格遵守饮食控制，锻炼，服药，监测血糖，足部护理等方面吗？

y 你在饮食控制，锻炼，服药，监测血糖，足部护理等方面习惯如何？

433 所需帮助

y 哪些帮助能令你更好地控制病情？ y 除了提供健康教育项目，你还希望获得哪些帮助？ y 如果开展健康教育项目，你认为最好的形式是怎样？ y 你建议在健康教育项目中涉及哪些内容？

Focus Group Discussion Guide (for community health professionals)

English version

434

Social support y How much support do you think older people with type 2 diabetes can get in dealing with their disease? y What support, if any, may be most important to older people with type 2 diabetes during the management? y Do you think older people are satisfied with the support they received? y What would make them feel more supported?

Barriers y What is the most difficult part for older people with type 2 disbetes to manage their disease? y What are the major reasons that people do not adopt diet/ exercise/medication/ blood glucose test/ foot care/ etc.?

Self-efficacy y Do older people with type 2 diabetes believe that type 2 diabetes can be successfully controlled? y Do you think those older people with type 2 diabetes are confident with their own ability to manage this disease?

Self-management behaviours y What are some aspects of diabetes management those older people with type 2 diabetes are good at? y What are some aspects of diabetes management those older people with type 2 diabetes cannot do very well?

Help needed y What would help older people with type 2 diabetes most to manage their disease? y What advice do you give to older people with type2 diabetes? y What would be most appropriate ways to offer an education program? y As a health professional, what are your recommendations regarding the proposed education program?

435 Chinese version

社会支持

y 你们认为老年糖尿病人能获得多少社会支持？ y 你们认为，哪些支持对老年病人（控制糖尿病）来说是最重要的？ y 你们觉得老人对他们所得到的社会支持感到满意吗？ y 你们觉得怎样做会令老年糖尿病人得到更多社会支持？

障碍

y 对老年糖尿病人来说，控制糖尿病最大的困难是什么？ y 如果老年病人无法坚持饮食控制，锻炼，服药，监测血糖，足部护理等，最主要的

原因是什么？

自我效能

y 老年糖尿病人是否认识到 2 型糖尿病是可以被控制住的？ y 你们觉得老年糖尿病人是否有信心自我管理好糖尿病？

自我管理行为

y 老年糖尿病人在糖尿病控制上，哪些方面做得比较好？ y 老年糖尿病人在糖尿病控制上，哪些方面做得不太好？

所需帮助

436 y 哪些帮助能令老年糖尿病人更好地控制病情？ y 你希望向老年糖尿病人提供哪些建议？ y 如果开展健康教育项目，你认为最好的形式是怎样？ y 你会建议在健康教育项目中涉及哪些内容？

Appendix 3 – Information sheet and consent form for intervention

437

Information Sheet (for common participants)

Dear,

I invite you to participate in this research because you are an older person with type 2 diabetes. If you agree to participate, you will be allocated either to an intervention group or a control group. It is expected that this research will take several months to complete.

y For participants allocated to intervention group If you were allocated to the intervention group, you will take part in the education program that we are testing. The 1st part of the program is 4 sessions named “control your diabetes”, which will be delivered by health professionals once a week for 4 consecutive weeks. Each session will take about one hour.

Following these sessions, you will be asked to participate in a group led by peer leaders and supervised by the researcher and community health professionals (the 2nd part of the program). Among the group, you could discuss health issues, share experience, set goals and report accomplishments, etc, with peers. This part of the program will take no more than 45 minutes per week for 12 weeks. The whole program will be arranged at times and places that are convenient for you and your peers.

In order to test the program properly, we will ask you to fill in a questionnaire at the beginning of the program, and at 1 and 3 months after starting. The questions will ask about your health, managing your diabetes, and your

438 background. We could also like your permission to access your medical records to obtain information about your diabetes.

y For participants allocated to control group If you are allocated to the control group, you will not be involved in the intervention program. We will ask you to fill in a questionnaire at the beginning of entry of the research, and at 1 and 3 months later. The questions will ask about your health, managing your diabetes, and your background. We could also like your permission to access your medical records to obtain information about your diabetes.

You are playing a very important role in the research by providing information that is crucial to the success of the research. At the completion of the research, you will receive the handouts of the testing education program.

There are no known risks to you through participating in the research, and you may well benefit by becoming more confident about managing your diabetes. Any information that you provide will be kept confidential and will not be used for any other purpose. When the research is finished the results will be published. However, no identifying information will be published.

This research is part of a degree of Doctor of Philosophy at Queensland University of Technology, Australia and will be carried out by me (Huixia Shen; PhD candidature of School of Nursing, QUT; Lecturer of Department of Nursing, Tongji University) under the guidance of an experienced research team including Professor Helen Edwards, Professor Mary Courtney and Dr Jan McDowell at QUT.

You, or a relative or friend, are welcome to contact me, the Chief Investigator, on 86-21-5662 4378 (China), if you have any enquiries about this research. Alternatively, Professor Helen Edwards, who is the Principal Supervisor, Head of School of Nursing QUT, can be contacted on 61-7-38643844 (Australia). If you have any concerns about the ethical conduct of this research, the Research Ethics Officer of QUT may be contacted on 61-7-38642340 (Australia) or email [email protected].

439 Thank you very much for helping us with this research.

Huixa Shen PhD candidature School of Nursing, QUT

Consent Form

(for common participants)

440

Project Title: Effectiveness of a peer-led self-management program for older people with type 2 diabetes in China Investigator: Ms Huixia Shen QUT, Faculty of Health, School of Nursing, PhD candidature Principal Supervisor: Professor Helen Edwards QUT, Faculty of Health, Head of School of Nursing

In signing this consent, I am giving my consent to become a member of the above study which aims to improve the health status of older people with type 2 diabetes living in the community in China.

My signature below will indicate that: y I have read the attached information sheet and understand the nature and purpose of this study and the potential risks involved. y I have been informed that some participants will be allocated to the control group, which will involves only completing the assigned questionnaires. All participants will receive the handouts of the program at the completion of the study. y I have been informed participation is entirely voluntary, and that I have the right to withdraw at any time without comment or penalty. y I have been informed that my participation or non-participation to this study will have no effect on medical services that I may receive from health professionals. y I have been guaranteed that all information I provide will be kept confidential and will be used only for research purpose.

I understand that I can contact Ms Shen (86-21-56624378, China), Professor H. Edwards (61-7-38643844, Australia), or the Research Ethics Officer of QUT(61-7-38642340, Australia; [email protected]), if I have any enquiries about this study. Participant: Date: Witness: Date:

I have explained the nature and purpose of this study to the above participants and have answered their questions. Investigator: Date:

Information Sheet

(for peer leaders)

441

Dear,

The purpose of this research is to find practical ways to help older people with type 2 diabetes living in the community in China, to manage their condition and improve their health status. During the research, I am testing an educational program, in which people will work with peer leaders, and each other, to learn about managing their diabetes. This education program consists of two parts. The 1st part is 4 sessions named “control your diabetes”, which will be delivered by community health professionals. The 2nd part is peer-led group activity, which is led by peer leaders and supervised by the researcher and community health professionals. It is expected that this research will take several months to complete.

I invite you to participate in this research as prospective peer leader because you are an older person with type 2 diabetes and you have strong willingness to serve others. If you agree to participate and act as peer leader, you will be expected to: y Take part in “control your diabetes” sessions (1st part of the program), which will be delivered by health professionals hourly weekly for 4 weeks. y Take part in additional peer leader training, which will be delivered by the researcher hourly weekly for 4 weeks. The purpose of the training is to improve your communication skills and strengthen diabetes knowledge. y Be paired with another peer leader, and lead a peer group (2nd part of the program) in your community, which will last for 12 weeks. The time commitment for running the group will be approximately 1 hour a week. y Being peer leader, your responsibility is to lead and promote peers to discuss health issues, share experience, set goals and report accomplishments among groups. You are encouraged to be flexible and adapt in leading the group in order to fit community and participants needs. You will be assisted and supervised by the researcher and community

442 health professionals throughout the process. You can also ask for prompt support from them anytime when needed.

There are no known risks to you through participating in the research, and you may well benefit by becoming more confident about managing your diabetes and gaining new social contacts and friendships. Any information that you provide will be kept confidential and will not be used for any other purpose. When the research is finished the results will be published. However, no identifying information will be published.

You, or a relative or friend, are welcome to contact me, the Chief Investigator, on 86-21-5662 4378 (China), if you have any enquiries about this research. Alternatively, Professor Helen Edwards, who is the Principal Supervisor, Head of School of Nursing QUT, can be contacted on 61-7-38643844 (Australia). If you have any concerns about the ethical conduct of this research, the Research Ethics Officer of QUT may be contacted on 61-7-38642340 (Australia) or email [email protected].

Thank you very much for helping us with this research.

Huixa Shen PhD candidature School of Nursing, QUT

Consent Form

(for peer leaders)

443

In signing this consent, I am giving my consent to become a member of the above study, which aims to improve the health status of older people with type 2 diabetes living in the community in China, and act as a peer leader.

My signature below will indicate that: y I have read the attached information sheet and understand the nature and purpose of this study and the potential risks involved. y I have been informed that being peer leaders may involve complex responsibilities and may cost considerable energy and time. My participation in this study is purely voluntary and I will not receive any payment for it. y I have been informed participation is entirely voluntary, and that I have the right to withdraw at any time without comment or penalty. y I have been informed that my participation or non-participation to this study will have no effect on medical services that I may receive from health professionals. y I have been guaranteed that all information I provide will be kept confidential and will be used only for research purpose. y I understand that I can contact Ms Shen (86-21-56624378, China), Professor H. Edwards (61-7-38643844, Australia), or the Research Ethics Officer of QUT(61-7-38642340, Australia; [email protected]), if I have any enquiries about this study. Participant: Date: Witness: Date:

I have explained the nature and purpose of this study to the above participants and have answered their questions. Investigator: Date:

Appendix 4 – Measures for effectiveness test

Demographic data collection form

444 Date of birth / / (dd/mm/yyyy)

Gender (please circle one): female / male

Ethnic (please circle one): 1) Han ethnic 2) Zhuang ethnic 3) Man ethnic 4)Hui ethnic 5) others

The level of education that have received (please circle one) 1) none 2)primary school 3) high school 4) undergraduate 5) post-graduate

At present, you are (please circle one) 1) Married 2) Separated 3) Widowed 4) Single 5) Divorced

At present, you are living (please circle one) 1) Alone 2) With spouse 3) With children/grandchildren 4) With spouse & children/grandchildren 5) With others

At present, you are (please circle one) 1) retired 2)Employed 3) Unemployed 4) work after retirement

What is your average income per month (please circle one)?

1) ≤500RMB 2) 500< - ≤1000 RMB 3) 1000< - ≤1500 RMB

4) 1500 RMB< - ≤ 2000RMB 5) > 2000 RMB

How long since you were diagnosed with type 2 diabetes (please circle one)

1) ≤ I year 2) 1< - ≤2 years 3) 2< - ≤5 years

4) 5< - ≤10 years 5) > 10 years

What is your current treatment (please circle all appropriate to you)? 1) Medication(include insulin) 2) diet control 3)exercise 4) Other, please detail ______

Do you have any other co-morbidity? 1) No 2) Yes, please detail ______

445 Medical Outcomes Study Social Support Survey

(Sherbourne & Stewart, 1991)

446 Chinese Diabetes Self-Efficacy Scale

adapted from Hurley’s IMDSES by Wang, Wang, & Lin (1998)

The following statements describe what some people believe about their ability to take care of their diabetes. Please rate your degree of confidence for being able to carry out your diabetes related activities. There are no right or wrong answers. No Slight confidence Moderate confidence Quite a bit confidence Strong confidence Usually, I can follow my diabetic diet. 1 2 3 4 5 I can stay on my diabetic diet when I eat in familiar places away from 1 2 3 4 5 home (such as a friend’s house). I can stay on my diabetic diet when I eat in unfamiliar places. 1 2 3 4 5 When I go to parties, I can follow my diet plan. 1 2 3 4 5 I can correctly exchange one food for another in the same food group. 1 2 3 4 5 I can eat my meals at the same time every day. 1 2 3 4 5 I can exercise several times a week. 1 2 3 4 5 I can continue to exercise when I am busy. 1 2 3 4 5 I can exercise when I don’t feel like exercising. 1 2 3 4 5 I can continue to exercise during holidays 1 2 3 4 5 Usually, I can take medication on time. 1 2 3 4 5 I can take medication on time when I am away from home. 1 2 3 4 5 I can take medication as the recommended dose. 1 2 3 4 5 Usually, I can test my blood or urine regularly. 1 2 3 4 5 I can test my blood or urine when I am away from home. 1 2 3 4 5 I can record the result of blood/urine testing every time. 1 2 3 4 5 When I feel sick, I can test my blood or urine more than I routinely do. 1 2 3 4 5 Usually, I can wear soft and fitting shoes/socks. 1 2 3 4 5 I can check my feet and apply the recommended lotion to my feet 1 2 3 4 5 every day. I can wear soft and fitting shoes/socks when I am away from home. 1 2 3 4 5 I can trim nails properly (straight across the corners). 1 2 3 4 5 I can call my doctor about problems with my feet. 1 2 3 4 5 I can call my doctor when my blood sugar is not under good control. 1 2 3 4 5 I can figure out what self-treatment to administer when my blood 1 2 3 4 5 sugar gets lower than it should be. I can figure out what self-treatment to administer when my blood 1 2 3 4 5 sugar gets higher than it should be. I can do what was recommended to prevent low blood sugar reactions 1 2 3 4 5 when I exercise.

447 Chinese Diabetes Self-Care Scale

adapted from Hurley’s IMDSCS by Wang, Wang, & Lin (1998)

The following statements describe some diabetes related activities. Please rate the extent to which you carry out these activities. There are no right or wrong answers.

Never or or Never rarely Seldom Sometime s Usually Always I followed my diabetic diet in everyday life. 1 2 3 4 5 I stayed on my diabetic diet when I ate in familiar places away 1 2 3 4 5 from home (such as a friend’s house). I stayed on my diabetic diet when I ate in unfamiliar places. 1 2 3 4 5 I followed my diet plan when I went to parties, 1 2 3 4 5 I exchanged one food for another in the same food group 1 2 3 4 5 correctly. I ate my meals at the same time every day. 1 2 3 4 5 I exercised several times a week. 1 2 3 4 5 I continued to exercise when I was busy. 1 2 3 4 5 I exercised when I didn’t feel like exercising. 1 2 3 4 5 I continued to exercise during holidays 1 2 3 4 5 I took medication on time in everyday life. 1 2 3 4 5 I took medication on time when I was away from home. 1 2 3 4 5 I took medication as the recommended dose. 1 2 3 4 5 I tested my blood or urine regularly. 1 2 3 4 5 I tested my blood or urine when I was away from home. 1 2 3 4 5 I recorded the result of blood/urine testing every time. 1 2 3 4 5 When I felt sick, I tested my blood or urine more than I routinely 1 2 3 4 5 do. I wore soft and fitting shoes/socks. 1 2 3 4 5 I checked my feet and applied the recommended lotion to my 1 2 3 4 5 feet every day. I wore soft and fitting shoes/socks when I was away from home. 1 2 3 4 5 I trimmed nails properly (straight across the corners). 1 2 3 4 5 I called my doctor about problems with my feet. 1 2 3 4 5 I called my doctor when my blood sugar was not under good 1 2 3 4 5 control. I figured out what self-treatment to administer when my blood 1 2 3 4 5 sugar got lower than it should be. I figured out what self-treatment to administer when my blood 1 2 3 4 5 sugar got higher than it should be. I did what was recommended to prevent low blood sugar 1 2 3 4 5 reactions when I exercised.

448 The Center for Epidemiological Studies Scale (CES-D)

(Radloff & Teri, 1986)

449 The MOS 36-item Short-Form Health Survey (SF-36)

(Ware & Sherbourne, 1992)

450 Health care utilisation data collection form

During the past 1 month,

How many times did you visit a doctor (out patient)? ______visits

How many times did you visit the emergency room? ______visits

How many times did you visit a community health service center?

______visits

How many different times did you stay in a hospital overnight or longer?

______times

How many days did you totally stay in hospital? ______days

453 Appendix 5 – Questionnaire for program evaluation

Evaluation of the program (for older people with type 2 diabetes)

Did you like the program? 1) Definitely liked 2) Mostly liked 3) Do not know 4) Mostly disliked 5) Definitely disliked

If there were similar programs in the future, would you like to attend again? 1) Definitely liked 2) Mostly liked 3) Do not know 4) Mostly disliked 5) Definitely disliked

From your opinion, what was the most useful part of the program? 1) Peer group activity 2) Basic diabetes instruction 3) Convenient BGL test 4) Follow-up by health professionals

Do you think it is feasible to deal with type 2 diabetes self-management, by peer group activity? 1) Definitely feasible 2) Mostly feasible 3) Do not know 4) Mostly not feasible 5) Definitely not feasible

How did participation in the program affect you personally?

______

What is your suggestion about measures to be done to improve the program?

______

454 Evaluation of the program (for older people with type 2 diabetes)

Did you like acting as peer leaders in the program? 1) Definitely liked 2) Mostly liked 3) Do not know 4) Mostly disliked 5) Definitely disliked

If there were similar program in the future, would you like to act as peer leader again? 1) Definitely liked 2) Mostly liked 3) Do not know 4) Mostly disliked 5) Definitely disliked

From your opinion, what was the most useful part of the program? 1) Peer group activity 2) Basic diabetes instruction 3) Convenient BGL test 4) Follow-up by health professionals

How did participation in the program affect you personally?

______

What is your suggestion about measures to improve the program?

______

455

Appendix 6 – Peer leader training manual

Peer Leader Training Manual

Index of the whole Manual

Pre-training

st Session one (1 week)

nd Session two (2 week)

rd Session three (3 week)

th Session four (4 week)

th th th th Follow-up meeting ( 6 , 8 , 10 , and 12 week)

Since the whole Peer Leader Training Manual is too big, only part of it

(Session two) is presented here to give an example.

456

Session 2 (English version)

Topic 1 – review of last week Objective: z Check participants’ work for last week z Let participants have chance to share experience for their work and get support from fellows Time: 10 minutes. Steps: Part one 1. Ask participants to report the name of members in their peer group who currently use medication / diet control / exercise / regular glucose checking? 2. Ask participants to discuss with their partners, and then name a people in their peer group whom they think need help most. Also introduce the situation briefly to all participants.

Part two Ask participants turn to a partner and share their experiences practicing the question asking and discussion opening skills since last session. z What questions did you ask last week? Give some examples. z What did you notice when you used this method?

Topic 2 – symptoms of diabetes Objective: z Deepen participants’ understanding of main symptoms of diabetes Time: 5 minutes. Material: Scenario – Mr Li’s story (part 1) Steps: 1. Give the handout 2. Ask participants to concentrate on the case when the facilitator read it

Mr Li is a man in his 60s who lives with his wife. He has 2 adult children. Mr Li was diagnosed with type 2diabetes a couple of years ago when he had a routine blood test. The diagnosis was a complete surprise to him as he did not feel sick at the time. He was a bit concerned when he first found out that he had diabetes. However, after a while he didn’t think about it too much.

MR Li was very causal about managing his diabetes. He mostly ate the meals that his wife prepared, but he preferred to snack. His favorite snack was sweet peanut bar, especially after dinner at light.

457 Mr Li went to see his doctor a week ago because he wasn’t feeling as energetic as he used to, and he was irritable. He was also worried because he now had to get up during the night to pass urine. Mr Li’s wife thought that his diabetes was causing the problems so he took this recent record of his BGL results to show the doctor.

During his consultation Mr Li told the doctor that his pants had become very tight over the past few months. The doctor measured Mr Li’s weight and waist. Mr Li’s weight had increased by 5kgs since his previous visit and his waist measurement was now 135cm. Mr Li’s symptoms indicated that his diabetes was not well-managed. The doctor suggested that it was time for Mr Li to start taking responsibility for managing his diabetes and advised him to see a dietitian, start a physical activity program such as walking, and regularly test his BGL.

3. Come back into the group 4. Ask questions. z Could you point out the symptoms of diabetes that Mr Li has? And what are other feature symptoms of this disease? z Did you have these symptoms when you were first diagnosed? 5. Listen to their answers carefully, and then give a summary of main symptoms.

Topic 3 - complications of diabetes Objectives: z Allow participants fully understand harm of uncontrolled diabetes. Time: about 10 minutes. Material: prepared statements Steps: 1. Give the handout 2. Tell participants that they are going to play the “true or false” and that they will be asked to tell whether the following statements are true or false. 3. When a statement is read, they have to indicate their opinion with the following signals: True - Raise one arm / False: Put both your hands on the table in front of them. 4. Read the following statements one at a time.

Statements: z If you don’t feel sick, it means your diabetes is still slight. z Although diabetes can ail people, it will not make you die or cause severe outcomes. z Many trivial details of lifestyle are as important as medication use in diabetes control.

458 z The harm of diabetes is in progress even if the symptoms are not obvious or you don’t feel very sick.

5. Allow the participants to make their signals. 6. If there are differences in participants’ answers, let them correct each other 7. If participants have same opinions, ask 1-2 participants to further express their reason. 8. Depending on their answers, additional explanation may be provided.

Topic 4 – management of diabetes Objectives: z Allow participants fully understand how lifestyle change can improve diabetes situation. z Help them make decision to be responsible for their disease. Time: 10 minutes. Material: Scenario – Mr Li’s story and BGL record (part 2) Mr Li’s visit to the doctor really gave him a fright about his health. He decided that it was time to do something about changing his lifestyle. Mr Li and his wife talked with the dietitian and discovered that the meals his wife prepared were healthy. The dietitian advised Mr Li that eating healthy meals regularly, rather than snacking, would help him to manage his BGL.

Mr Li started going for a 15-20 min walk after dinner as his doctor suggested. He soon realized that this was a good way to deal with his snacking problem. By going for a walk he avoided his old habit of sitting in front of the television every night and snacking on sweet peanut bar.

Mr Li also started checking his BGL at least 3 times a day. Steps: 1. Give the handout 2. Ask participants to concentrate on the case when the facilitator read it 3. Come back into the group 4. Ask questions. z How do you think Mr Li may be feeling now? Why? z What effect did Mr Li’s changed eating habits have on his BGL? z What effect did physical activity have on Mr Li’s BGL? z Mr Li’s waist measurement is now 125cm and he has lost 5kg in weight. What do you think this indicates for Mr Li? 5. Ask if other people have any comments to add. 6. Discuss their answers.

459 The following is Mr Li’s BGL record for the week before a recent visit to the doctor. Before Mid Before Mid Before Before Comments breakfast morning lunch afternoon dinner bed Thursday 10.5 9.2 8.4 Home all day, went for a 15 min walk after dinner Friday 9.9 9.5 10.1 Out all morning, walked 1/2 hour after dinner Saturday 9.8 9.3 7.2 8.5 Gardened after lunch, walk after dinner Sunday 9.6 9.2 10.2 At the daughter’s house, played with the kids. Big lunch. Walk after dinner Monday 9.2 9.9 7.2 Home all day, snacking, did walk after lunch and dinner Tuesday 8.8 7.5 7.6 Wednesday 8.2 8.9 8.3 Had a walk after dinner. Feeling great Thursday 8.9 10.2 8.4 Did the moping after lunch Average 9.4 9.2 9.3 8.6 8.2

460 Topic 5 – diet & exercise goal setting Skills for goal-setting Objectives: z Help participants understand the importance of goal setting and know how to set goal z Motivate participants use goal-setting in every day activity Time: about 20 minutes. Material: Your behavior-checking list Your goals for this week Steps: Part 1 1. Inform participants that the following exercise is just a reminder for themselves rather than a test 2. Ask participants to read though the list 3. Ask them to tick the box according to their real situation

Goal What I eat and do now I do this now I do this I rarely do sometimes this Eat at regular times Eat small amounts of saturated fat Eat few sweetened foods Eat plenty of vegetables Eat at least 2 pieces of fruit a day Have no, or small amount, of salt Have 6-8 glasses of water daily Have 2 alcohol free days a week Have no, or few, ‘take away’ meals Do 30 min’ of moderate physical activity of most days

Part 2 1. Ask participants to define the phrase z Goal setting; z Long-term goal; z Short-term goal 2. Note their responses, and clarify the phrase by explaining as follows z Goals are proposed achievements or accomplishments towards which we direct our efforts. In every day activity we plan, and planning involves goal setting. When we plan we set goals towards which we direct our efforts. z Long-term goals are goals meant to be achieved in years to come. For example, one might set a goal to be an engineer, etc. z Short-term goals are goals to be achieved very soon, such as the goal of getting enough money to buy shoes or clothes.

461 3. Ask participants to form pairs, with each pair writing one example of short-term goal and one example of long-term goal for diabetes control. 4. For each goal, they should write the time they hope to achieve the goal, the steps taken to achieve the goal. 5. Have one or two pairs to report their goals and plan for achieving the goals. 6. For the goal presented, discuss whether the goal is specific, realistic and achievable. 7. Ask each pair to evaluate their own work according to the standard z Specific to be achievable; z Rrealistic; z Time bound to be achievable; z Observable.

Part 3 1. Ask participants to select items where work is needed 2. Ask them to assess how easy or difficult the change may be Goal Do I need to If so, how easy will it be for me to make a change what I do now? change? A change will be A change will be quite easy quite hard Eat at regular times Eat small amounts of saturated fat Eat few sweetened foods Eat plenty of vegetables Eat at least 2 pieces of fruit a day Have no, or small amount, of salt Have 6-8 glasses of water daily Have 2 alcohol free days a week Have no, or few, ‘take away’ meals Do 30 min’ of moderate physical activity of most days

3. Ask each participant to select one item which they will make a change of behaviour from this week and publicly commit themselves in front of the group 4. Honor each commitment with a round of applause 5. Ask participants to discuss with partners and make detailed act plan

462 Can I identify areas in my diet that may need improvement? Yes □ No □

Is snacking a major problem for me? Yes □ No □

What can I do this week to try and improve my eating habits?

Plan a dietary change for this week z When can I do it? z How will I do it? z How often can I do it? z To do it will be- very easy □, easy □, hard □, very hard □

Am I as active as I could be on most days? Yes □ No □

On most days, could I be more active than I am now? Yes □ No □

Plan an activity for this week z When can I do it? z How will I do it? z How often can I do it? z To do it will be- very easy □, easy □, hard □, very hard □

Further reading and thinking 1. Your chance to have your questions answered Do you have questions that you would like to be able to answer by the end of this training? If so, just record your questions and when able, write in the answer.

2. Some stories from other people who have diabetes (Omitted)

Homework for this week 1. Assist peer group members to check their diet and exercise behavior, and make record

2. Motivate peer group members for behavior change

3. Ask members to select one item for the coming week, and assist them to make detailed action plan

463 Record for week two

Peer group No. Peer (Signature) (Signature) (Signature) (Signature) leaders Name Items that may need Selected goal for the coming week change

Peers

464 Session 2 (Chinese version)

主题一 – 上周工作回顾目的： z 检查小组长们过去一星期的工作情况 z 让小组长们有机会交流工作中的经验教训，并彼此间提供支持时间：10分钟步骤：第一部分

1. 让参加者汇报病友小组中目前采用服用药物、控制饮食、规律锻炼等措施的分

别有哪些人

2. 让参加者与他们的搭档讨论，挑出一个他们认为最需要得到帮助的人，并向全

组简单介绍此人的情况。

第二部分 1. 让参加者和伙伴交流上星期练习提问和诱导谈话技巧的心得 z 上星期你一般提一些什么样的问题？举例。 z 当你有意识地采用开放性问题时，被问者的反应如何？

主题二 – 糖尿病的主要症状目的：加深参加者对糖尿病主要症状的了解。时间：5分钟材料：案例 – 李先生（1部分）李先生今年60多岁了，和老伴住在一起。他有两个孩子，都成年了，也都各自成家、搬出去住了。几年前，在一次常规体检中李先生被查出患有糖尿病。当时他非常惊讶，因为他从来没有觉得身体有什么不舒服。

刚发现的那段时间，李先生还是很在意的。不过，好几年过去了，他对糖尿病也不再象从前那么重视了。李先生总是在家吃饭，老伴负责做饭。李先生爱吃零食，最喜欢的是花生糖。特别晚饭后，他总要咬几根花生糖。

最近李先生觉得身体不象以前那么硬朗，而且人很容易发火。李先生还发现自己晚上经常要起来小便，他有些担心。一星期前他去看了医生。李先生的老伴认为李先生的糖尿

465 病可能和这些表现有关，特意让他把自己的血糖记录单也带上了。

李先生告诉医生，过去的几个月中他觉得自己的裤子越来越紧。医生让李先生量了一下腰围、体重。从上一次看医生以来，李先生的体重增加了10公斤，而他现在的腰围已经增加到135公分。一切表现证明李先生的糖尿病并没有很好的控制。医生告诉李先生他必须认真对待糖尿病，负起自己的责任，配合治疗。医生建议他咨询营养师、制定合适的饮食计划；多做运动，例如散步；并且坚持定期测量血糖。

步骤： 1. 分发传单 2. 让参加者仔细聆听故事 3. 提问： z 请指出李先生的糖尿病症状？除此之外，糖尿病还有哪些主要症状？ z 当你第一次发现自己有糖尿病时，你表现出这些症状了么？ 4. 仔细倾听大家的回答 5. 最后就糖尿病的主要症状做总结性陈述

主题三 – 糖尿病的并发症目的：让参加者深入了解糖尿病可能造成的严重危害时间：10分钟材料：预先收集的几种观点步骤： 1. 分发传单 2. 向参加者解释接下来要做一个“对或错”的游戏 3. 朗读以下观点： z 如果你并不觉得不舒服，你的糖尿病应当还很轻。 z 尽管糖尿病会使人难受，但它不会导致严重后果或致人死亡。 z 对控制糖尿病来说，生活方式的一些琐碎注意事项和药物一样重要。 z 即便感觉不到不适，或糖尿病的症状并不明显，糖尿病还是会逐渐加重对我们身体的侵害。 4. 每朗读完一条观点，参加者需表明自己的意见：对 – 举手；错，将双手平放在面前的桌上。 5. 如果参加者有不同意见，让他们互相辩论 6. 如果大家意见相同，可以挑1-2人进一步说明原因 7. 根据参加者的回答提供补充说明。

主题四 – 糖尿病的控制目的：

466 z 让参加者深入理解生活方式对糖尿病病情的影响； z 帮助参加者下决心对自己的疾病负责，积极配合治疗时间：10分钟材料：案例 – 李先生（2部分）；血糖记录单李先生看完医生后吓了一大跳。他认为是时候认真地审视自己的生活方式了。李先生和老伴一起去咨询了营养师。营养师仔细了解了他们日常的饮食后认为三餐安排基本上是合理的。不过，他建议李先生放弃零食。

李先生现在饭后还按照医生的建议散步15-20分钟。很快他意识到，这不仅是锻炼，还是戒除馋瘾的好办法。饭后散步就避免了晚上总是坐在电视前的老习惯，也就没有机会不停地吃零食。李先生还下决心每天测血糖。步骤： 1. 分发传单 2. 让参加者仔细聆听故事 3. 提问： z 你认为李先生目前身体会觉得怎么样？为什么？ z 你发现李先生的饮食习惯改变对他的血糖有什么影响？ z 你发现日常活动与锻炼对李先生的血糖有什么影响？ z 李先生通过努力减掉了5公斤体重，腰围也减到了125公分，你认为这对他的糖尿病有什么好处？ 4. 让其他参加者有机会补充、发表自己的观点 5. 根据参加者的回答提供补充说明。

主题五 – 饮食控制与运动 / 设立行动目标的技巧目的： z 让参加者了解设立行动目标的重要性并掌握如何设立目标； z 鼓励参加者在日常活动中为控制糖尿病设立行动目标时间：20分钟材料：日常行为检查清单本星期的行为目标记录单步骤：第一部分 1. 向参加者解释下面的练习仅仅为了让大家思考一下自己平时的行为，而不是为了评价好坏 2. 让参加者仔细阅读日常行为检查清单 3. 鼓励他们按照自己的实际情况填写清单

467 下面是李先生去看医生之前的一星期的血糖记录单。早饭前上午午饭前下午晚饭前睡觉前感想星期四 10.5 9.2 8.4 白天一直在家。晚饭后散步15分钟。星期五 9.9 9.5 10.1 早上出去了。晚饭后散步约30分钟。星期六 9.8 9.3 7.2 8.5 午饭后拖了地。晚饭后散步了。星期日 9.6 9.2 10.2 去女儿家，和孙子们玩耍。午饭很丰盛。晚饭后照例去散步了。星期一 9.2 9.9 7.2 白天一直在家，忍不住吃了不少零食。午饭后和晚饭后都散步了。星期二 8.8 7.5 7.6 星期三 8.2 8.9 8.3 晚饭后散步了。今天感觉很好。星期四 8.9 10.2 8.4 午饭后拖地了。平均值 9.4 9.2 9.3 8.6 8.2

468 行动目标l 我的饮食与运动一直能做到有时能做到很少能做到定时吃饭吃很少量的动物油很少吃甜食吃大量的新鲜蔬菜每天吃两个水果吃很少量的盐每天喝6-8 杯水每星期至少2天不喝酒很少吃快餐每天30分钟中等强度的活动，例如散步

第二部分 1. 让参加者解释下列词汇： z 设立行动目标； z 长期目标； z 短期目标 2. 观察参加者的反应，作以下补充说明： z 目标是指我们期望取得的成就，为实现它，我们会付出相当的努力。我们日常生活无时无刻不涉及到设立行动目标。 z 长期目标指那些需要比较长的时间，好几年，才能实现的目标。例如，成为工程师 z 短期目标指那些短期内就能实现的目标。例如，攒钱买一件喜欢的新衣服。 3. 让参加者自由结对，要求每一对试着写一个与糖尿病控制有关的短期目标以及长期目标。 4. 对每个目标，还要求写出期望达到的时间，可能采取的步骤等 5. 挑1-2对参加者向大家陈述他们的目标 6. 就已陈述的目标组织讨论，主要讨论目标的具体性、现实性、可行性 7. 给参加者一些时间，再评判一下自己所制定的目标，主要从以下方面： z 具体性；现实性与相关性；时间的充裕性；目标的可测量性等

第三部分 1. 让参加者确定自己哪些与糖尿病控制有关的行为需要改进 2. 让参加者判断改变这些行为的难易程度

469 行动目标我是否要在这如果要改进些方面加以改改变应该不改变会很困进？困难难定时吃饭吃很少量的动物油很少吃甜食吃大量的新鲜蔬菜每天吃两个水果吃很少量的盐每天喝6-8 杯水每星期至少2天不喝酒很少吃快餐每天30分钟中等强度的活动，例如散步

3. 让参加者挑选一个愿意从下一周开始改进的行为，并向大家做公开承诺。 4. 对每一个承诺都报以热烈掌声以示鼓励。 5. 给参加者一些时间，让他们与伙伴进一步商量详细的行动计划我是否发现自己的饮食习惯需要改善？是 □ 否 □

我有爱吃零食的习惯吗? 是 □ 否 □

这一周我打算改善我的饮食习惯，具体计划如下： z 我打算什么时候做？早上/中午/下午/晚上？ z 我打算怎么做？ z 我能每天都坚持吗？ z 这项改变对我来说会 – 很容易 □, 比较容易 □, 比较困难 □, 很困难

我是否发现自己的运动习惯需要改善？是 □ 否 □

这一周我打算改善我的运动习惯，具体计划如下： z 我打算什么时候做？早上/中午/下午/晚上？ z 我打算怎么做？ z 我能每天都坚持吗？ z 这项改变对我来说会 – 很容易 □, 比较容易 □, 比较困难 □, 很困难

470

本周任务

1. 帮助病友小组的成员反思日常的饮食以及运动状况，做好记录

2. 鼓励病友小组的成员改善自己的生活方式

3. 帮助病友小组的成员确定至少一项下周打算改善的行为，并制定详细的计划

第二周的工作记录

病友小组第组

病友小 (签名) (签名) 组长

姓名需要改进的行为决定下一周开始改变的行为

组员

情况

471

Leaflet for session 2 (Chinese version)

病友小组长活动

（第二课）

472 上周工作回顾

第一部分

3. 请你汇报一下您所在的病友小组中目前采用药物、饮食控制、体育运动等措施的分别有哪些人 4. 请您与您的搭档讨论后挑出一个您们认为最需要得到帮助的人，并向大家简单介绍此人的情况、需要的帮助。

第二部分您可以和全组成员交流一下上星期练习提问和诱导谈话技巧的心得 z 上星期你一般会提一些什么样的问题？请举例说明。 z 当你有意识地采用开放性问题时，被问者的反应如何？请举例说明。

案例讨论 – 李先生的故事（1）

李先生今年60多岁了，和老伴住在一起。他有两个孩子，都成年了，也都各自成家、搬出去住了。几年前，在一次常规体检中李先生被查出患有糖尿病。当时他非常惊讶，因为他从来没有觉得身体有什么不舒服。

刚发现自己得病的那段时间，李先生还是很在意的。不过，好几年过去了，

473 他对糖尿病也不再象从前那么重视了。李先生总是在家吃饭，老伴负责做饭。李先生爱吃零食，最喜欢的是花生糖。特别晚饭后，他总要咬几根花生糖。

最近李先生觉得身体不象以前那么硬朗，而且人很容易发火。李先生还发现自己晚上经常要起来小便，他有些担心。李先生的老伴认为李先生的糖尿病可能和这些表现有关。一星期前李先生去看医生时，老伴特意让他带上平时的血糖记录单。

李先生告诉医生，过去的几个月中他觉得自己的裤子越来越紧。医生让李先生量了一下腰围、体重。自从上一次看医生以来，李先生的体重增加了10公斤，而腰围也已经增加到135公分。一切表现证明李先生的糖尿病并没有很好的控制。医生告诉李先生他必须认真对待糖尿病，对自己负责，配合治疗。医生还建议他咨询一下营养师、制定合适的饮食计划；多做运动，例如散步；并且坚持定期测量血糖。

请思考：

z 李先生表现出哪些糖尿病症状？

z 除此之外，糖尿病还包括哪些主要症状？

z 当你第一次被诊断出糖尿病时，你表现出这些

症状了么？

474 糖尿病的并发症（对错游戏）

1. 如果你并不觉得不舒服，你的糖尿病应当还很轻。 2. 尽管糖尿病会使人难受，但它不会导致严重后果或致人死亡。 3. 对控制糖尿病来说，生活方式的一些琐碎注意事项和药物一样重要。 4. 即便感觉不到不适，或糖尿病的症状并不明显，糖尿病还是会逐渐加重对我们身体的侵害。

接下来大家要做一个“对或错”的游戏 z 上面列举了关于糖尿病的一些看法。主持人会依次朗读每一条看法 z 每朗读完一条看法，请您表明自己的意见：对 – 举手；错 - 将双手平放在面前的桌上 z 如果大家的意见不一致，请您说明您的理由；如果大家意见一致，也请您进一步阐明您的观点

案例讨论 – 李先生的故事（2）

李先生看医生后吓了一大跳。他认为是时候认真地审视自己的生活方式了。李先生和老伴一起去咨询了营养师。营养师仔细了解了他们日常的饮食后认为三餐安排基本上是合理的。不过，他建议李先生要改掉吃零食的习惯。

李先生现在饭后按照医生的建议散步15-20分钟。很快他意识到散步不仅是一种锻炼，还是戒除馋瘾的好办法。饭后散步让他改掉了了晚上总是坐在电视前的老习惯，也就让他没有机会不停地吃零食。同时，李先生还下决心每天测血糖。

以下是李先生看医生之后一星期的血糖记录单。

475 早饭午饭晚饭睡觉上午下午感想前前前前星期四 10.5 9.2 8.4 白天一直在家。晚饭后散步15分钟。星期五 9.9 9.5 10.1 早上出去了。晚饭后散步约30分钟。星期六 9.8 9.3 7.2 8.5 午饭后拖地了。晚饭后散步了。星期日 9.6 9.2 10.2 去女儿家和孙子玩耍。午饭很丰盛。晚饭后散步了。星期一 9.2 9.9 7.2 白天一直在家。今天吃了不少零食。午饭和晚饭后散步了。星期二 8.8 7.5 7.6 星期三 8.2 8.9 8.3 晚饭后散步了。今天感觉很好。星期四 8.9 10.2 8.4 午饭后拖地了。平均值 9.4 9.2 9.3 8.6 8.2

请思考：

z 你认为李先生目前会觉得身体怎么样？为什么？ z 你发现李先生的饮食习惯改变对他的血糖有什么影响？ z 你发现日常活动与锻炼对李先生的血糖有什么影响？ z 李先生通过努力减掉了5公斤体重，腰围也减到了125公分，你认为这对他的糖尿病有什么好处？

设立行动目标的技巧（饮食控制与运动）

第一部分下面的练习是为了让大家思考一下自己平时的行为，而不是为了评判好坏。请您仔细阅读日常行为检查清单，并按照自己的实际情况在符合的框内打“√”。

476

我的饮食与运动行动目标一直能做到有时能做到很少能做到定时吃饭吃很少量的动物油很少吃甜食吃大量的新鲜蔬菜每天吃两个水果吃很少量的盐每天喝6-8 杯水每星期至少2天不喝酒很少吃快餐每天30分钟中等强度的活动，例如散步

第二部分

请您思考以下概念：

¾ 设立行动目标 -目标是指我们期望取得的成就，为实现它，我们会付出相当的努力。我们日常生活无时无刻不涉及到设立行动目标

¾ 长期目标 -长期目标指那些需要比较长的时间，好几年，才能实现的目标。例如，成为工程师。

¾ 短期目标 -短期目标指那些短期内就能实现的目标。例如，攒钱买一件喜欢的新衣服。

z 请你挑一个伙伴，并和他/她一起试着举例说明与糖尿病控制有关的短期目标以及长期目标。对每个目标，还要求写出期望达到的时间，可能采取的步骤等。 z 请你评价一下自己所制定的目标，主要讨论目标的具体性、现实性与相关性、可行性等方面

477

第三部分 z 请你确定自己有哪些与糖尿病控制有关的行为需要改进。 z 请你判断改变这些行为的难易程度，并在符合的框内打“√”。

我是否要在这如果要改进行动目标些方面加以改改变应该不改变会很困进？困难难定时吃饭吃很少量的动物油很少吃甜食吃大量的新鲜蔬菜每天吃两个水果吃很少量的盐每天喝6-8 杯水每星期至少2天不喝酒很少吃快餐每天30分钟中等强度的活动，例如散步 z 请你挑选一个愿意从下一周开始改进的行为，并向大家做出公开承诺。 z 请你与伙伴一起进一步讨论详细的行动计划，完成以下表格。

行动计划表

我是否发现自己的饮食习惯需要改善？是 □ 否 □

我有爱吃零食的习惯吗? 是 □ 否 □

这一周我打算改善我的饮食习惯，具体计划如下： z 我打算什么时候做？早上/中午/下午/晚上？ z 我打算怎么做？ z 我能每天都坚持吗？ z 这项改变对我来说会 – 很容易 □, 比较容易 □, 比较困难 □, 很困难行动计划表

我是否发现自己的运动习惯需要改善？

478 是 □ 否 □

本周任务

4. 帮助病友小组的组员反思日常的饮食以及运动状况，并做好记录

5. 鼓励病友小组的组员改进自己的生活方式

6. 帮助病友小组的组员确定（至少一项）下周打算改进的行为，并根据行动计划表制定详细

的计划

已经是第二周了，您在病友小组长工作中一定积累了不

少心得与体会。

作为小组长，您付出了爱与辛勤劳动，也一定会获得大

家由衷的尊敬与感谢！

479

第二周的工作记录

病友小组第组

病友 (签名) (签名) 小组长

组员姓名需要改进的行为，包决定从下周开始改变的行为

情况括

姓名需要改进的行为，包决定从下周开始改变的行为

括

组员

情况

480

姓名需要改进的行为，包决定从下周开始改变的行为

括

组员

情况

481

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