IMPROVING ACCESS TO CARDIAC REHABILITATION AMONG SOUTH ASIAN PATIENTS THROUGH INNOVATIVE REFERRAL METHODS: A QUALITATIVE STUDY
KEERAT GREWAL
THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE
GRADUATE PROGRAM IN KINESIOLOGY AND HEALTH SCIENCE YORKUNIVERSITY, TORONTO, ONTARIO
MAY 2008 Library and Bibliotheque et 1*1 Archives Canada Archives Canada Published Heritage Direction du Branch Patrimoine de I'edition
395 Wellington Street 395, rue Wellington Ottawa ON K1A0N4 Ottawa ON K1A0N4 Canada Canada
Your file Votre reference ISBN: 978-0-494-45938-6 Our file Notre reference ISBN: 978-0-494-45938-6
NOTICE: AVIS: The author has granted a non L'auteur a accorde une licence non exclusive exclusive license allowing Library permettant a la Bibliotheque et Archives and Archives Canada to reproduce, Canada de reproduire, publier, archiver, publish, archive, preserve, conserve, sauvegarder, conserver, transmettre au public communicate to the public by par telecommunication ou par I'lnternet, prefer, telecommunication or on the Internet, distribuer et vendre des theses partout dans loan, distribute and sell theses le monde, a des fins commerciales ou autres, worldwide, for commercial or non sur support microforme, papier, electronique commercial purposes, in microform, et/ou autres formats. paper, electronic and/or any other formats.
The author retains copyright L'auteur conserve la propriete du droit d'auteur ownership and moral rights in et des droits moraux qui protege cette these. this thesis. Neither the thesis Ni la these ni des extraits substantiels de nor substantial extracts from it celle-ci ne doivent etre imprimes ou autrement may be printed or otherwise reproduits sans son autorisation. reproduced without the author's permission.
In compliance with the Canadian Conformement a la loi canadienne Privacy Act some supporting sur la protection de la vie privee, forms may have been removed quelques formulaires secondaires from this thesis. ont ete enleves de cette these.
While these forms may be included Bien que ces formulaires in the document page count, aient inclus dans la pagination, their removal does not represent il n'y aura aucun contenu manquant. any loss of content from the thesis. •*• Canada Abstract
The increased prevalence of cardiovascular disease among South Asians is well established. Although cardiac rehabilitation (CR) is effective in improving prognosis,
South Asians are among the least likely to participate. Studies suggest automatic referral increases CR utilization and may reduce access inequalities.
Using a Grounded Theory approach, this study qualitatively explored whether CR referral knowledge and attendance varied by method of CR referral among South Asians. South
Asian patients from 11 hospitals were interviewed over telephone using a semi-structured interview guide. Hospitals refer to CR through one of four methods: automatically through paper or electronic means, through discussion with allied health professionals
(liaison referral), or usual referral at physician discretion.
Liaison referral was perceived to be the most suitable method of referral for South Asian cardiac patients. It enables communication between patients and providers, ensuring improved CR understanding. Automatic referral processes may be less suited for this population.
IV Acknowledgements
I would like to thank numerous people who have supported me in the past two years while I completed my Masters. Firstly, I would like to thank my supervisor, Dr. Sherry
Grace, for the continuous support and excellent opportunities you have provided me with throughout my time in the program. I would also like to thank Dr. Parissa Safai for the thoughtful suggestions you have provided to me throughout the different stages of my research. Thank you to Dr. Steve Manske, from the University of Waterloo, for introducing me to research during my undergraduate studies. Without that amazing opportunity, I definitely would not have considered this line of study.
I would like to gratefully acknowledge the Canadian Institutes of Health Research and the Ontario Graduate Scholarship for providing me with funding for my research.
Sheena, Cassandra, Janette, Shannon, Yvonne and Shamila: thank you for your all of your support, assistance, and it was great getting to know all of you! Thank you Clara,
Jenn and Iwona for all of the help you have provided over these two years. Thank you to all of the study coordinators who helped with recruiting participants for this study.
Thanks to my great group of friends who are always there for me.
Finally, I would like to acknowledge my Mom and Dad, and my sisters Karen and
Sharon. You have always encouraged me to challenge myself and learn and for that I thank you.
v Table of Contents
Certificate ii Copyright Page iii Abstract iv Acknowledgements v Table of Contents vi Introduction 1 Literature Review 2 Race and Ethnicity 2 Cardiovascular Disease among South Asians 4 Cardiac Rehabilitation 6 Cardiac Rehabilitation Use 8 Barriers to Cardiac Rehabilitation 8 Cardiac Rehabilitation Uptake and Access among South Asians 10 Automatic Referral to Cardiac Rehabilitation 14 Objectives 16 Manuscript Preface 17 Certificate of Authentication 18 Manuscript: Access to cardiac rehabilitation among South Asian patients by referral method: A qualitative study 19 Extended Discussion 40 Information Dissemination via Liaison CR Referral 40 Need for Automatic Referral 42 Community Dissemination 43 Cultural Considerations 44 Complications among South Asian Cardiac Patients... 46 Strengths and Limitations 48 Limitations 48 Strengths 49 Future Directions 51 Conclusion 52 Practical Implications 52 References 54 Appendix A: Cardiac Rehabilitation Referral Categories for the CRCARE study 67 Appendix B: Baseline Survey - Racial/Ethnic Background Question 68 Appendix C: Interview Guide and Suggested Probes 69 Appendix D: Schematic Representation of Data Retrieved through Interviews with South Asian Cardiac patients 72 Appendix E: Personal Experiences..... 73
vi Introduction
It has been well established that there is an increased prevalence of cardiovascular disease (CVD) among South Asians (i.e. individuals from India, Pakistan, Sri Lanka and
Bangladesh) (Anand et al., 2000; Gupta, Singh, & Verma, 2006; McKeigue, Miller, &
Marmot, 1989). Although cardiac rehabilitation (CR) is effective in improving prognosis after a cardiac event, ethnic minorities including South Asians are among the least likely to participate in such programs (Banerjee, Gupta, & Singh, 2007; Oldridge, Guyatt,
Fischer, & Rimm, 1988; Tod, Wadsworth, Asif, & Gerrish, 2001; Yancey, 2004). This disproportionate rate of utilization is alarming, given the increased prevalence of CVD among South Asians (Wilkinson et al., 1996).
An automatic referral process, where CR referral is a standard order for all eligible patients, increases the number of referrals made to CR and may reduce inequalities in access for ethnic minorities (Dafoe et al., 2006; Grace, Evindar, Kung,
Scholey, & Stewart, 2004a; Smith, Harkness, & Arthur, 2006). However, there is a dearth of literature examining methods of referral as a means to increase CR access among ethnic minorities, let alone studies examining the poor CR attendance of South Asians
(Yancey, 2004). This study attempted to bridge this gap by exploring whether CR referral knowledge, access, and attendance vary with different methods of referral among the
South Asian population. In particular, this study examined South Asian cardiac patients through semi-structured interviews.
1 Literature Review
CVD is the leading cause of mortality in Canada, accounting for approximately
37% of all deaths (Manuel et al., 2003). Although mortality from CVD has recently been declining due to the success of primary and secondary preventative measures, the prevalence of CVD in Canada continues to rise (Heart and Stroke Foundation of Canada,
1999). Accordingly, the Heart and Stroke Foundation (1999) reported that CVD is also the leading cause of hospitalization among men and women in Canada. The 1998 report entitled the "Economic Burden of Illness in Canada" cited CVD as the most costly illness and the largest contributor to hospital care expenditures (Health Canada, 1998).
There are several known risk factors related to the prognosis of a patient with
CVD. These are the same risk factors associated with the development of CVD and can be classified as modifiable or non-modifiable. Non-modifiable risk factors of CVD include age, sex, and a family history of the disease. Modifiable risk factors of CVD are tobacco use, physical inactivity, hypertension, dyslipidemia, obesity, diabetes, and mental stress (Heart and Stroke Foundation of Canada, 1999; Langille et al., 1999). The presence of such modifiable risk factors results in poorer outcomes in patients with established heart disease (Stone & Arthur, 2005).
Race and Ethnicity
Race and ethnicity have commonly been used in the health literature to examine differences in disease prevalence and health care use. Ethnicity is a multifaceted term, used to refer to the group to which people belong as a result of shared characteristics such
2 as geography, ancestral origin, cultural traditions, and/or language (Bhopal, 2004). Race, on the other hand, is a biological concept which groups people on the basis of visible physical characteristics (Bhopal, 2004). Race is considered a cultural creation, based on . social meaning attributed to visible differences among people - it has been found not to be a valid biological concept (Coakley, 2001). Although ethnicity and race are different terms, they are overlapping concepts and thus are often used interchangeably. In this study, the term 'ethnicity' is used, as patients are asked to self-identify their race/ethnicity.
In the health care context, differences exist between ethnic groups. The American
College of Physicians stated "there is ample evidence illustrating that minorities do not always receive the same quality of health care, do not have the same access to health care
... and have poorer overall health status than nonminorities" (American College of
Physicians, 2004, p. 226). Similarly, Health Canada (2006) considers culture or ethnicity as a social determinant of health, due to its influence on "the way people interact with a health care system,... access to health information, health related lifestyle choices, their understanding of health and illness" (Health Canada, 2006, p. 1). As a result, race and ethnicity deserve to be further examined in the health literature. This is especially important in a country such as Canada, where the population is defined by multiculturalism.
3 Cardiovascular Disease among South Asians
An increased prevalence of CVD has been well established among individuals of
South Asian origin (Anand et al., 2000; Gupta et al., 2006; McKeigue et al., 1989).
South Asians are identified as individuals whose ancestors originate from India, Pakistan,
Bangladesh, or Sri Lanka (Bhopal, 2004). Most studies report a three- to five-fold increase in the risk of coronary artery disease development and cardiovascular death among South Asians, compared to other ethnic groups (Gupta et al., 2006; McKeigue et al., 1989; Rissam, Kishore, & Trehan, 2001). The increased prevalence of CVD among
South Asians appears to be a global trend, seen in South Asians across the United
Kingdom (UK), the United States (US), the Caribbean, South Africa, urban India and
Canada"(Deedwania & Singh, 2005; McKeigue & Sevak, 1994). In Canada, the South
Asian population forms the largest visible minority group (Statistics Canada, 2008),
which renders this an important issue for Canadian public health.
CVD onset among South Asians typically occurs at an earlier age and tends to be
more aggressive (Deedwania & Singh, 2005; Joshi etal., 2007; Rissam et al., 2001;
Singh & Gupta, 2005). Indeed a study by Wilkinson and colleagues (1996) showed that
South Asians had a higher risk of mortality within the first six months following a
myocardial infarction when compared to Caucasian patients (HR=2.02; 95% CI: 1.14-
3.56).
Many factors are thought to be related to the elevated risk of CVD in South
Asians. These factors include the clustering of known coronary risk factors, and also
novel risk factors common to South Asians (Bhopal, 2002; Ismail et al., 2004; Rissam et
4 al., 2001). Traditional risk factors frequently observed among South Asians which may account for the increased risk of CVD include a greater prevalence of type II diabetes
(insulin resistance), central obesity, low concentrations of high density lipoprotein
(HDL), high concentrations of triglycerides, and lower levels of physical activity (Anand et al, 2000; Bhopal, 2002; Lip, Cader, Lee, Munir, & Beevers, 1996; McKeigue et al.,
1989). There are several novel risk factors prevalent among this population, which may also be associated with CVD development. These novel risk factors include high levels of homocysteine and lipoprotein a, and low vitamin C (Bhopal, 2002; Gupta et al., 2006;
Rissametal., 2001),
Finally, the stresses of acculturation, language barriers, and adoption of an inactive 'Western' lifestyle and diet likely also contribute to this increased CVD burden among South Asians (Kumar, 2002; Lear, 2004). A study by Patel and colleagues (2006) compared migrant British Gujaratis to age-, sex-, and caste-matched Gujaratis still living in India. Findings illustrated a transition to higher cardiovascular risk among migrants
(increased cholesterol, triglycerides, body mass index (BMI), blood pressure and diabetes) (Patel et al., 2006). Patel et al. suggest that this transition to higher CVD risk among migrants can be explained by changes in diet; specifically by increased dietary energy intake and may also be a result of reduction in physical activity. This study helps demonstrate the impact of migration and the adoption of a 'Western' lifestyle and diet on
CVD risk profile. While the 'healthy immigrant effect' illustrates better immigrant health compared to individuals native to that country upon migration, with time this difference is shown to converge with native-born levels (Hyman, 2007; McDonald & Kennedy,
5 2004). Additionally, literature suggests that such an effect may differ between immigrants of different ethnic groups (Hyman, 2007). As such, the "healthy immigrant effect" may also contribute to a South Asian patient's experience of CVD.
Although, as a group, South Asians have an increased prevalence of CVD, CVD risk profile is not uniform among all South Asians (Bhopal et al., 1999). For instance,
Bangladeshi men are significantly more likely to smoke, and less likely to be obese than
Indian men (Bhopal et al., 1999). Given the small sample size of South Asians in this study, it will not be possible to examine differences that may exist between South Asian subgroups. However, it is important to recognize that differences may exist between subgroups when studying the South Asian population and cardiovascular disease.
Cardiac Rehabilitation
Secondary prevention services are health interventions designed to modify an individual's lifestyle and increase adherence to treatment in order to decrease disease progression (Stone et al., 2001). An effective method of secondary prevention among cardiac patients is the multidisciplinary approach of cardiac rehabilitation (CR). CR is defined by the Canadian Association of Cardiac Rehabilitation (CACR) as the
"enhancement and maintenance of cardiovascular health through individualized programs designed to optimize physical, psychological, social, vocational, and emotional status"
(Canadian Association of Cardiac Rehabilitation, 2004, p. 2). CR programs combine medical treatment, education, exercise training and counseling for cardiac patients in order to decrease the risk of mortality and recurrence of cardiac events (Thompson,
6 2002). In general, the services are offered in an outpatient setting, where participants come on site one to two times a week.
In a meta-analysis of 48 trials by Taylor et al. (2004), compared with usual care, cardiac patients who engaged in CR had significantly reduced odds of all-cause and cardiac mortality (OR=0.80; 95% CI: 0.68 - 0.93 and OR=0.74; 95% CI: 0.61 - 0.96, respectively). Other studies support these positive findings, citing reductions in cardiac mortality of approximately 25% with exercise-based CR (Jolliffe et al., 2001; Oldridge et al., 1988). Cardiac rehabilitation has been found not only to decrease all-cause and cardiac mortality, but is also effective in significantly improving prognosis, decreasing rehospitalization, and the recurrence of cardiac events (Ades, 2001; Hedback, Perk,
Hornblad, & Ohlsson, 2001).
Exercise training, an integral component of many CR programs, is thought to be one of the mediators in reducing mortality and improving prognosis. Exercise has been shown to have direct benefits on the heart, endothelial function, and in the development of coronary collateral vessels (Hambrecht et al., 2000; Taylor et al., 2004). Moreover, the multidisciplinary approach to CR also allows for the recognition and treatment of psychosocial problems which, in and of themselves, are risk factors for adverse outcomes among cardiac patients (Cardiac Care Network, 2002). Marked improvements in CVD risk reduction, health behaviour changes, and functional capacity have also been demonstrated through CR participation, all in a cost-effective manner (Ades, 2001;
Taylor et al., 2004).
7 Cardiac Rehabilitation Use
Uptake of cardiac rehabilitation services requires completion of the referral process by healthcare providers, and enrollment and participation in the services by patients. Despite the recognized benefits of CR, these services remain largely underused, reaching only 15-30% of eligible patients in most developed countries including Canada
(Bunker & Goble, 2003; Cooper, Jackson, Weinman, & Home, 2002; Daly et al., 2002;
Grace et al., 2002). In a systematic review of fifteen studies by Cooper et al. (2002), low
CR use was found to be an international problem with patient, provider and healthcare system factors contributing to the low uptake.
A study by Grace and colleagues (2002) examined CR referral and participation across 12 South-Central Ontario hospitals. In their sample of 906 cardiac patients, approximately 30% of patients were referred to CR by a physician, and only 21.5% of all patients attended CR. Of the patients who attended CR, 62.5% reported attending most or all of the CR sessions. While not all patients are eligible for CR, reported rates of CR use are incredibly low, given targets of 40% utilization in Ontario (Cardiac Care Network,
2002) and 85% in the UK (Department of Health, 2000).
Barriers to Cardiac Rehabilitation
Given the low rates of CR utilization, many studies have examined barriers to CR.
A qualitative study by Tod, Lacey and McNeil (2002) summarizes barriers patients perceive when accessing CR. Some emergent themes included communication problems resulting in a lack of information flow from health care settings to patients; a lack of
8 understanding of what CR involves; incorrect perceptions of CR including that exercise
may exacerbate one's condition; and the appropriateness of CR as perceived by the
patient. The barriers highlighted in this study point to the importance of ensuring that
healthcare providers present detailed information to patients about CR.
Aside from such patient-related factors as older age, marital status, and female
gender, that are commonly attributed to low participation in CR, there are also health care
system and physician factors at play (Grace et al., 2004a; Grace et al., 2006). For
instance, in a literature review of barriers in the participation and adherence of CR, Daly
et al. (2002) found that the majority of eligible patients are never referred to CR. One
study reported 74% of patients did not attend a CR assessment because it was not
recommended to them by a health care provider, family member, friend, or other person
(Grace et al., 2002). Reasons for non-referral were found to include several health care
system factors such as communication obstacles, and lack of funding for CR. Additional
explanations for low referral to CR by physicians included skepticism about the benefits
of CR, not following clinical guidelines and a lack of awareness of CR programs or sites
(Daly et al., 2002). This lack of awareness and skepticism among physicians is
problematic, considering that the strength of a physician's endorsement is one of the
strongest predictors of CR uptake and adherence among cardiac patients (Daly et al.,
2002; Jackson, Leclerc, Erskine, & Linden, 2005).
Structural barriers to CR programs may also exist and contribute to low uptake.
Although structural barriers to CR have not been studied extensively in the CR literature,
these issues have been examined in other health promotion and prevention programs. For
9 example, in a Health Canada report on best practices for substance abuse rehabilitation among women, several structural or program related barriers were cited. These issues included limited program outreach, attitudes of service providers, and costs associated with treatment (Currie, 2001). Alternatively, programs such as 'Active Living' neglect structural barriers while encouraging personal responsibility for physical activity. Such programs have been criticized for focusing on individualistic measures, whereas people may have little control of this aspect in their daily lives (Bercovitz, 1998). Other health promotion programs may also be too individualistic in nature, whereas participants may prefer or benefit from a family-based approach. Dafoe and Huston (1997), acknowledge the role of family and the impact of a cardiac event on the family. Thus, some CR programs include interested family members and friends in programs (Dafoe & Huston,
1997). Though structural barriers to CR have not been explicitly explored in the CR literature, one must acknowledge that such issues likely exist.
Cultural differences between dominant and non-dominant ethnocultural groups may also act as a barrier to health and healthcare services such as attendance in CR.
Cultural barriers to CR may include language barriers, western-conceptualizations of physical activity, illness perceptions, etc (Jolly, Greenfield, & Hare, 2004;
Sriskantharajah & Kai, 2007). Such barriers are explored further in this thesis.
Cardiac Rehabilitation Uptake and Access among South Asians
In addition to the global under-utilization of CR, inequalities in CR access and use are also apparent. Cooper et al. (2002) reviewed sociodemographic differences in CR.
10 These patient-related factors as consistent predictors of non-attendance were older age, low socioeconomic status, and being a woman. Integral to this research, non-white ethnicity has also been shown to be a factor which consistently relates to low participation in CR (Rees et al., 2005; Thompson & Bowman, 1998; Tod et al., 2001).
For example, in a US study by Gregory, LaVeist and Simpson (2006), race was found to be independently associated with referral to CR. Caucasian patients were significantly more likely to be referred to CR (OR=2.52; 95% CI: 1.75-3.63), even after controlling for age, socioeconomic status, education, and insurance coverage (OR: 1.81; 95% CI: 1.22-
2.68).
South Asians are among those less likely to be referred to and attend CR
(Banerjee et al., 2007; Cardiac Care Network, 2002; Jolly et al., 2004; Tod et al., 2001;
Yancey, 2004). In fact in the Ontario Ministry of Health and Long-Term Care's CR Pilot
Project, South Asians were the least likely to participate in CR across all 24 Ontario sites.
This disproportionate rate of participation is alarming, given that South Asians have greater cardiac morbidity and mortality rates when compared to their European counterparts. As Tod et al. (2001) stated "low cardiac rehabilitation attendance rates suggest that access may be poorer with those [South Asians] most likely to benefit from the service".
There is a paucity in the literature surrounding the barriers South Asian groups face in relation to CR access and uptake (Jolly et al., 2004; Yancey, 2004). Three studies, all conducted in the UK, have examined the poor attendance rates of South Asians in CR
(Jolly et al., 2004; Rees et al., 2005; Tod et al., 2001; Webster, Thompson, & Mayou,
11 2002). Even less work on this CR disparity has been carried out in Canada, with only one secondary peer-reviewed research manuscript having been published. This study reported on the low attendance and completion of CR among South Asian cardiac patients in
Ontario, Canada (Banerjee et al., 2007). The studies from the UK are outlined below.
In a mixed methods study of CR attendance among ethnic minorities in the UK, the sample of 41 patients referred to CR included 34 South Asian patients (84% of the sample) (Jolly et al., 2004). Among these patients, non-attendees were significantly more likely to be female, not speak English, and live alone. Furthermore, non-attendees were less likely to have access to a car and more likely to attribute their heart disease to stress and worry. Finally, language barriers were also found to be a factor in non-attendance.
Reasons given by patients for not attending or completing CR ranged from shyness, transportation problems, and the inability to speak English. The findings of this study have important implications for how visible minority patients should be approached for
CR participation and in what ways CR programs can meet the needs of these patients.
Tod et al. (2001) administered a quantitative survey to 76 patients admitted for cardiac surgery, myocardial infarction or angina in the UK, and whose ethnicity was identified as Indian, Pakistani, Bangladeshi, or other Asian. The majority of patients who responded stated that they could not understand some or all of the information they had received while in hospital. In addition, 59% of respondents could not remember being told about CR. More than half of these patients reported that they would have attended
CR if they had known about it. This study highlights the importance of language and referral barriers which may hinder CR participation among many South Asian cardiac
12 patients.
In the final and qualitative study by Webster et al. (2002), 35 Gujarati Hindu myocardial infarction patients in Leicester, UK were interviewed two to three weeks post discharge from the hospital. Eight major themes describing the attitudes of these patients emerged from qualitative analysis of the data. Emergent themes among the patients included lack of information and advice from health care providers, poor expectations for getting better, lack of future plans, belief in fate such that the illness is out of the patient's control, little lifestyle adjustments after their myocardial infarct, and lack of physical activity. The themes highlighted a lack of knowledge and strongly held beliefs about the implications of a myocardial infarct. Both are likely contributors to poor uptake of cardiac rehabilitation programs among this population.
Overall, these three studies provide a strong foundation for recognizing and examining barriers to CR and the particular needs among South Asian patients. These barriers range from a lack of referral by health care providers, communication/ language barriers, lack of understanding about their illness and of CR programs, and transportation problems (Jolly et al., 2004; Tod et al., 2001; Webster et al., 2002). While some of these barriers are also cited by non-minority patients, more work needs to be completed in order to fully understand and reduce the ethnic disparity in CR use. Clearly, research investigating barriers that South Asians in Canada face is required in order to determine similarities and differences in relation to findings from the UK, given that we have different health care systems, and a more multicultural society. Finally, interventions to reduce this disparity in CR must be explored.
13 Automatic Referral to Cardiac Rehabilitation
It is well established that there is low overall referral to CR, and ethnic disparities in CR referral and participation (Grace et al., 2004a). Usual referral methods involve referral at the discretion of a cardiologist or other physician, whereby the physician would need to locate the CR site referral form, complete the form including medical history, risk factor and medication information, and finally sign and submit it. Several studies have suggested that an 'automatic' referral process, where a CR referral is generated as standard order for all eligible patients upon discharge, can increase the number of CR referrals and ultimately the rate of participation while reducing disparities in access (Dafoe et al., 2006; Grace et al., 2004a; Smith, Harkness, Arthur, 2006).
Patients ineligible for CR are those with orthopedic, neuromuscular, cognitive or psychiatric conditions. With usual methods of referral, there is generally 15-30% participation in CR. Following automatic referral however, participation in CR has been shown to increase to approximately 50% (Grace et al., 2004a).
Grace et al. (2004a) suggest that disparities in CR access may be reduced though automatic referral. This is because physician and health care factors which can impede referral are superceded (Dafoe et al., 2006; S. L. Grace et al., 2004a). For example, with automatic referral the generation of the referral letter can be done automatically within electronic health records or by allied health professionals; ward clerks are involved in the submission of the referral form rather than the physician; and pre-approval for all eligible patients has already been obtained from physicians - thus, no physician signature is required for the CR referral. In fact, the Cardiac Care Network of Ontario (2002)
14 recommended automatic referral "from inpatient care to outpatient cardiac rehabilitation programs ... for all eligible cardiac patients at all Ontario hospitals" (p. 47) as a means to reduce disparities in CR access and referral among minority groups. Such evidence points to a potential solution for reducing the disparities in CR referral and uptake among South
Asians - automatic referral processes. Such a process would implement change at the healthcare system level, by changing the functional structure of how patients are referred to CR after a cardiac event.
Through key informant interviews, Krepostman et al. (Krepostman, Scholey,
Stewart, & Grace, 2005) have identified three different ways in which hospitals have operationalized automatic referral. These are universal electronic, universal paper, and liaison (see Appendix A). Under the universal electronic referral category, all patients are referred to CR, unless they are ineligible based on clinical practice guidelines (Canadian
Association of Cardiac Rehabilitation, 1999), via an electronically generated referral in the electronic health record. Referral data is printed out automatically in the CR program within the hospital. There has already been pre-approval by physicians, thus, no physician signature is required for the referral to be made. The universal paper referral category is similar, with the exception that the referral is paper-based. In the liaison referral category, an allied health professional discusses CR with patients one-on-one.
Referrals for CR are not universal and do require a physician signature, however the opportunity for two-way communication between patients and providers may be integral to encouraging CR enrollment, and clarifying any CR misconceptions.
15 Objectives
The specific objectives of this study were two-fold: (1) to explore differences in awareness of CR referral and intentions to participate in CR by referral method among
South Asian cardiac patients, and (2) to examine barriers that are perceived by South
Asian cardiac patients in the access and uptake of CR in a Canadian context.
This qualitative study represents a novel contribution by adding to the literature from the United Kingdom examining CR attendance and barriers to participation among
South Asians. This study is one of the first Canadian primary studies investigating CR referral and participation among South Asians. In addition, this research examines, for the first time, whether certain methods of referral are more effective in raising CR referral awareness and intentions to participate in CR among South Asian cardiac patients.
A qualitative approach was selected for this study because of the novel nature of the research question. Furthermore, a qualitative study enables researchers to use patient experiences and narratives to explore an area in greater depth, in comparison to what traditional quantitative questionnaires allow.
16 MANUSCRIPT PREFACE
This thesis investigated: 1) differences in awareness of CR referral and intentions to participate in CR by referral method among South Asian cardiac patients,, and (2) barriers that are perceived by South Asian cardiac patients in the access and uptake of CR from a Canadian context. Participants were recruited from a larger study involving eleven hospitals across Ontario, Canada. Each participating hospital was categorized under one of four referral methods (Appendix A). South Asian participants were identified based on their response to a demographic question regarding racial/ethnic background in the baseline survey for the larger study (Appendix B). The two objectives of this thesis were approached qualitatively, through semi-structured interviews with South Asian cardiac patients (see Appendix C for interview guide). The results of this study are presented in the manuscript which follows.
17 CERTIFICATE OF AUTHENTICATION Re: Access to cardiac rehabilitation among South Asian patients by referral method: A qualitative study
I hereby confirm that the first author of this manuscript, Keerat Grewal, was responsible for conducting all of the interviews, transcription, qualitative analysis, and for the write-up of the manuscript. The co-authors are co-investigators on the larger grant who provided editorial feedback prior to submission.
Signature: Q JR. f Date: fluty ( Keerat Grewal Signature: (cVi^^C- Date: fV\(jvy\ K Sherry L. Grace 18 Running Head: South Asians and Cardiac Rehabilitation Access to cardiac rehabilitation among South Asian patients by referral method: A qualitative study Keerat Grewal, BSc, Yvonne W. Leung, MA, Parissa Safai, PhD, Donna E. Stewart, MD, Sonia Anand, MD, PhD, Milan Gupta, MD, Manoela Braga, MD, Sherry L. Grace, PhD for the CRCARE Investigators Kinesiology and Health Sciences, York University, Toronto, ON (KG, YWL, PS, SLG) University Health Network, Toronto, ON (DES, SLG) University of Toronto, Toronto, ON (DES, SLG) Department of Medicine, McMaster University, Hamilton, ON (SA) William Osier Health Centre, Brampton, ON (MG, MB) Please address correspondence and reprint requests to: Keerat Grewal Bethune College 222B, York University 4700 Keele St. Toronto, ON M3J 1P3 Tel: (416) 736-2100 x 20575; Fax: (416) 736-5774 [email protected] 4990 words, 1 table, 30 references Submission Date: 02/08/2008 Submitted to: Ethnicity & Disease Abstract OBJECTIVES: South Asians suffer an increased prevalence of coronary artery disease compared to other ethnocultural groups. Although cardiac rehabilitation (CR) is effective in improving prognosis, South Asians are among the least likely to participate in such programs. Studies suggest 'automatic' referral increases CR utilization and may reduce access inequalities for minorities. This study qualitatively explored whether CR referral knowledge, access, and attendance varied by method of CR referral among South Asians. METHODS: South Asian acute coronary syndrome patients from 11 hospitals in Ontario were included. Each hospital refers patients to CR through one of four methods: automatically through paper or electronic means; through discussion with allied health professionals (liaison referral); or usual referral at the discretion of a physician. Data was collected via semi-structured telephone interviews and analyzed using a Grounded Theory approach. RESULTS: Four central themes emerged: 1) the importance of pre-discharge CR discussions with health care providers; 2) the limited knowledge of CR; 3) the ease of referral process as facilitator of CR attendance; and 4) the participant's need for personal autonomy over their decision to attend CR. CONCLUSION: Liaison referral was perceived to be the most suitable method of referral for the participants in this study as it facilitated communication between patients and providers, thus ensuring improved CR understanding. However, study participants indicated their preference for referral discussions with physicians. Automatic referral processes may be less suited for this population, due to reduced patient-provider communication. Keywords: Cardiac Rehabilitation, South Asian, Referral, Qualitative 20 Introduction Individuals of South Asian origin (i.e., from India, Pakistan, Sri Lanka and Bangladesh) have an increased prevalence of coronary artery disease (CAD)1"4. Studies have reported a three- to five-fold increase in the risk of CAD development and cardiovascular death among South Asians compared to other ethnocultural groups3"5. Although cardiac rehabilitation (CR) is effective in improving prognosis after a cardiac event, there is growing evidence that certain ethnic populations, including South Asians, are among the least likely to participate in such programs _1 . This lower rate of participation is concerning, given the increased prevalence of CAD among South Asians 11 CR attendance is influenced by numerous factors, including referral practices. With usual methods of referral to CR, such as referral from a surgeon or physician, there is generally low participation in CR - approximately 15-30% of eligible patients 12~14. Following automatic referral, however, participation in CR has been shown to increase to approximately 50% 15'16. Studies have suggested that an automatic referral process, whereby CR referral is a standard order for all eligible patients, not only increases the number of referrals made to CR but may reduce inequalities in access for ethnocultural minorities 17"19. In fact, the Cardiac Care Network of Ontario (2002) recommended automatic referral "from inpatient care to outpatient cardiac rehabilitation programs ... for all eligible cardiac patients" as a means to reduce disparities in CR access and referral among minority groups 20. However, there is a dearth of literature examining methods of referral as a means to increase CR access among ethnocultural minorities, let alone 21 studies examining the poor CR attendance of South Asians in particular ' ' . This study attempts to address these gaps in the literature. Through key informant interviews, three ways in which hospitals have operationalized automatic referral have been identified 22: universal electronic; universal paper; and liaison. Under the universal electronic referral category, all patients are referred to CR, unless ineligible based on clinical practice guidelines 23, via an electronically generated referral in their electronic health record. Referral data is printed out automatically in the CR program within the hospital and there has already been pre- approval by physicians for these referrals to be generated automatically where indicated. The universal paper referral category is similar in process, with the exception that the referral is paper-based. In the liaison referral category, an allied health professional discusses CR with each individual cardiac patient. Referrals for CR are not universal and do require a physician signature; however, the opportunity for two-way communication between patients and providers increases and this may be integral to encouraging CR enrollment and clarifying any CR misconceptions. These three methods of referral, in addition to usual referral (i.e. at the discretion of the specialist or generalist), are examined in this study. Given the heightened risk of CAD and the disproportionate rates of CR utilization among South Asian cardiac patients, the purpose of the present study was to qualitatively explore whether CR referral knowledge, access, and attendance vary among South Asian cardiac patients following different methods of referral. 22 Methods Participants This study employed qualitative research methods in exploring the lived experiences of South Asian cardiac patients with regard to CR referral. Participants were identified and recruited from a larger study evaluating innovative referral methods to CR, the Cardiac Rehabilitation care Continuity through Automatic Referral Evaluation (CRCARE) study 24. Consecutive inpatients with an underlying diagnosis of acute coronary syndrome (ACS) were recruited from eleven hospitals across Ontario, Canada. Each hospital operates under one of the four referral categories described above: universal electronic, universal paper, liaison, or usual referral. As part of a baseline survey for the CRCARE study, patients were asked to self- identify their ethnocultural background. Those who self-identified as South Asian and spoke English and/or Punjabi (as the first author is able to communicate fluently in both English and Punjabi) were considered eligible for this study. Design and Procedure Ethics approval for the CRCARE study and this qualitative sub-study was obtained from each of the participating hospitals' ethics boards. Patients recruited and consenting to participate in the CRCARE study and who fit the selection criteria for this sub-study were contacted after discharge by telephone to determine whether they were interested in participating in the telephone interview. Participants were asked for consent to record the interviews to allow for later translation and transcription. Interviews were conducted in English or Punjabi depending on the participant's preference. Interviews 23 followed a semi-structured interview guide with open-ended questions and probes to ensure relevant issues were examined such as participants' awareness and knowledge of their CR referral; beliefs of why they were or were not referred to CR; discussions with hospital staff about CR; and intentions to participate in CR. Data Analysis Interviews were translated, if necessary, and transcribed verbatim (except to preserve anonymity) to allow for analysis of content. Drawing upon Grounded Theory, interview transcripts were then coded using NVIVO software 25 to identify major themes Oft . NVIVO software facilitated coding and analysis of interviews, searching and retrieving of related segments and sub-themes, and theorizing. Data transcription and analysis were concurrent with data collection, and involved inductively documenting emerging themes around differences in CR referral knowledge, awareness and intentions to participate; comparisons between referral methods; and opportunities for and barriers to CR access and participation. Concurrent data analysis facilitated the generation of new questions for subsequent participants. To ensure the transparency and validity of the results, an audit trail was used, incorporating the techniques of memo-ing and overall checks of the representativeness of the coding and categories. Finally, in efforts to reduce bias, a second researcher (YWL) independently reviewed the coding tree and transcripts. Results Sixteen South Asian participants with a confirmed ACS diagnosis were interviewed for this study (see Table 1 for demographic characteristics of participants). Four participants from each of the referral categories were interviewed and theme saturation was achieved. Four central themes influencing patients' decision to attend CR emerged from analysis of the interview data: 1) the importance of pre-discharge CR discussions with health care providers; 2) the patients' limited knowledge of CR; 3) the ease of referral process as facilitator of CR attendance; and 4) the participant's need for personal autonomy over their decision to attend CR. Each of the themes and their relationship to referral method is described below. 1) Pre-discharge CR Discussions with Health Care Providers Across all referral categories, participants noted that there was a general lack of discussion about CR with patients during their hospital stay. In the liaison referral category, however, some discussion about CR in the hospital was often evident although these discussions typically took place with health care professionals (i.e., nurses and/or physiotherapists) other than physicians. As liaison referral is not universal, one participant was not referred to CR and had not discussed CR with a health care provider. As part of the automatic referral methods (universal paper and universal electronic), some study participants had been given information about CR from English language documents (i.e. letters or pamphlets) while in hospital, but had not discussed CR with health care providers in person. One participant argued that: 25 [Health care providers] were not too emphatic about it.... They do not, you know, emphasize on how important it is. It is just like any other instruction set that they give you... the only suggestion that I have is that they could make it kind of, you know, a little more emphatic and highlight the benefits of the program. Another participant, ultimately referred through the universal electronic method, noted that: "The only time I heard about [CR] was through the letter which I received, probably a week to ten days ago." A few of the participants referred through usual methods had CR discussions with physicians or allied health professionals. However, it is important to note that many in this referral category were never initially referred to CR, as discussions about CR were non-existent. As one participant noted, "I did not enroll, I did not go to any CR centre, nothing. I do not know anything about it." Another participant initiated a discussion about CR with his family physician only after hearing about CR program benefits from friends and other patients. Overall, participants from all referral categories stated that there was a lack of discussion with health care providers about CR while in the hospital. Furthermore, many study participants acknowledged that they desired to have CR discussions with physicians in particular. Two patients in the universal paper referral method were told about CR from their cardiologist, and seemed receptive to their suggestions. 26 2) Patients' Limited CR Knowledge Many study participants who had not yet attended CR were unaware of the comprehensive nature of services offered by CR programs. Among those who were aware of CR, they often only spoke about the exercise component of CR programs. As one participant in the liaison referral category noted: "It involves walking and some exercises they give you and they monitor you while it is being done." Some patients were altogether unsure of what CR programs offer, and this was especially evident in the two automatic referral categories (universal electronic and universal paper). One study participant, referred through universal electronic methods, hesitantly acknowledged that: "Well, I guess there are exercises and I have a first meeting on the 8 of May, and I don't know, I guess they will be explaining it further, what would be involved." For this participant, the first meeting is an important opportunity to gain information about CR; however, this in turn, highlights the lack of information received by the participant from health care providers during his hospital stay. As noted above, patients in the usual referral category who were not referred to CR obviously had not heard of CR while in the hospital or what it could offer and, oftentimes, obtained their knowledge of CR from other patients, family or friends who had undergone rehabilitation. One participant noted: "Well, I was told about it by the other patients who had the same bypass surgery, that you can go to rehab. So I asked my doctor and he recommended me to rehab." For some other study participants, the current cardiac hospitalization was not their first and, thus, they had an understanding of CR 27 from previous attendance in CR programs. Both of these situations highlight the haphazard level of awareness or knowledge about CR and CR programs among patients. 3) The Ease of Referral Process as a Facilitator ofCR Attendance The majority of participants interviewed in the universal electronic, universal paper and liaison categories believed the referral process was well facilitated. With liaison referral, patients had heard about CR while in the hospital, and then had follow up contact with the CR program upon discharge. The general finding among these patients was that the CR program initially called the patient post-discharge to book an assessment appointment. One participant, referred through the liaison method stated: The process is already facilitated. They are proactive in terms of getting in touch with you. They already know that you have been to the hospital, have had a heart incident. So, they are the ones that are actually trying to contact you. In some cases, when patients received a letter about CR, they were given instructions to call the CR program themselves to book the initial appointment. This was true for one patient in the liaison category and three of the four patients in the universal electronic category. One patient in the latter referral category pointed out that: "I called them to make an appointment. I got a letter, and the letter said 'Contact them and make a date,' so I called". Some patients commented on CR being an excellent method of follow-up and an example of continuity of care upon discharge from the hospital. For instance, one patient stated that "[CR programs] pick up from where the hospital leaves." 28 4) The Need for Personal Autonomy over Decision to Attend CR Where patients were referred to CR, the decision to enroll was deemed a personal choice. Patients who had already enrolled in CR, or were intending on enrolling, did so because they believed it was a means of obtaining information and improving their health. Although there were external factors that influenced the patients' decision to attend CR, such as medical advice, suggestions from friends, family or other patients, the underlying perception among many of the participants was that the final decision was largely the patient's own choice. One individual argued: No, that's solely my decision. I'm a conscious being and I understand the last time I could have done more. But this time, now that I'm off [work] for a good time, I should be able to make use of that program. It's a conscious decision on my part. Participants who said they would not be attending CR believed it was not necessary. The majority of these patients said they could exercise at home or at a gym. One participant, referred through the usual method of referral, stated: Why I go? That's the question. I talk to my doctor, he said, 'Doesn't need, up to you.' So, I just control myself. I don't eat much. I have good health. I do exercise, I join club here. So I don't have any problem. Furthermore, some patients who had previously participated in CR thought they already had the necessary information and could exercise on their own. Although many participants argued that the ultimate decision to participate in CR remained in their hands, many also identified barriers that made their decision to attend 29 CR more complex. These barriers included the distance of the CR program from home, lack of transportation, the timing of the program with regard to work conflicts, and finally the wait time associated with commencing some CR programs. Interestingly, the concern over wait times only arose with those participants referred to CR via the universal electronic method. One such participant noted: "If they were to call me today, I would go. This is the proper time to do it, not after 4 months". Discussion Given the higher rates of CAD and lower rates of CR participation among South Asians, this study qualitatively explored the effect of referral method on South Asian patients' awareness of and access to CR in Ontario, programs which result in significant health benefits for participating patients. Results indicate that liaison referral may be the most suitable means of referral for South Asian cardiac patients and may result in the greatest positive perceptions/awareness of and access to CR. Specifically, this method of referral allows for greater two-way communication to occur between patients and providers. This may enable a better patient understanding of the comprehensiveness of CR and what it entails, while clarifying misconceptions. Such referrals should be universal in order to ensure all eligible patients are referred. Liaison Referral In the liaison category, patients had the opportunity to have one-on-one discussions with health care professionals, often nurses and physiotherapists, about CR. Hence, patients had an awareness of CR, even though this may have been limited to the 30 exercise component. Patients perceived this opportunity for dialogue as a chance to learn about CR and to ask questions. This opportunity to talk with a health care provider during a liaison referral may be related to greater intent to participate in CR, and as such, this method of referral maybe particularly effective in increasing CR participation among the South Asian population who have been found to be less likely to attend and/or complete CR8I0. Furthermore, the liaison referral method offers an opportunity to address a potential obstacle to CR participation - language barriers. Health care providers fluent in the patient's first language may be able to communicate more effectively about CR with patients who experience barriers to communicating in, for example, English. However, as noted above, South Asian patients may prefer to have these discussions about CR with physicians rather than allied health professionals. Indeed, previous research has shown that South Asian patients are highly receptive to physician advice . Considering the strength of a physician's referral is one of the strongest TO predictors of CR attendance among cardiac patients generally , encouraging physicians to make referrals may be an effective method of increasing CR participation among South Asian cardiac patients as well. Given rates of physician referral under usual referral conditions, this however is unlikely to be universally practiced by physicians. For instance, literature shows that some physicians may be unwilling to refer to CR due to a lack of knowledge or skepticism regarding the benefits of CR, or due to their preference to manage a patient's recovery independently . 31 Automatic Referral Among patients in the two automatic referral conditions, universal electronic and universal paper, similar issues often arose. For instance, few patients had the opportunity to discuss CR with allied health professionals while in the hospital. The majority of these patients either had little or no discussion about CR while in hospital or had obtained their information from pamphlets written in English. This latter point is concerning since, although patients in this study spoke and understood English, this could represent a barrier for non-English speaking South Asian (or other ethnocultural minority group) cardiac patients because they may be unable to fully understand the CR information provided. Some patients reported that they were unaware that a referral for CR had been made until they received a letter in the mail at home well after discharge. Pre-discharge discussions may increase CR awareness and the likelihood of attendance among patients 30. At the same time, recall of in-hospital discussions may be difficult for patients due to the volume of information patients are given, anxiety, sedation, or other medication side effects. Thus, pamphlets which patients can take home may represent a useful supplement to improve the recall of these discussions. Development of multi-language pamphlets for dissemination in hospital along with outreach to and recruitment of ethnoculturally diverse and multilingual health care providers should be explored. Similar to the liaison condition, patients in these two automatic referral categories also perceived the referral process as well facilitated. Some patients were initially called by the program to book an intake appointment. However, other patients received letters 32 from the CR programs instructing them to call the program to book an initial intake appointment. The latter approach may result in reduced CR enrollment because the initiation of booking an appointment depends on the patient. This approach is often used in programs with capacity issues, as discussed below. Patients in the universal electronic condition reported wait times to access CR as significant barrier to attendance. In an article reviewing access to CR, Dafoe et al. (2006) recognized that through automatic referral "CR programs may exceed capacity, resulting in longer wait times" 17. The concern over wait times among patients in this study included: anxiety that delay in accessing care would negatively affect recovery or the effectiveness of CR after waiting, and worry that their return to work would coincide with their access to CR, thus, precluding their participation. The implications are that CR sites which institute universal automatic referrals need to carefully consider the impact on service capacity and implement means to ensure patients have access to their services without lengthy delays. Dafoe et al. recommend seven to 60 days as an acceptable wait time for various diagnostic categories. Increases in funding for CR services would ensure timely access to this evidence-based care following universal referral. Usual Referral Finally, similar to the general cardiac population, this means of referral does not often result in CR utilization among South Asian patients. For example, it was under this referral category that some patients were never referred for CR, contrary to recommendations in clinical practice guidelines 23. Compared to automatic referral, usual referral is at the discretion of the physician and, subsequently substantially fewer patients 33 are actually referred to and enroll in CR when compared to automatic referral methods . Though a few patients had heard of CR from health care professionals while in the hospital, discussions about CR with other patients, friends or family were a major source of information for patients in this condition. Barriers to CR Beyond the actual referral to CR, the decision to attend CR was perceived as a personal choice. As indicated above, patients would like discussions about CR while in the hospital. This information can be used to educate a patient's decision to attend CR. As such, in-hospital discussions can be tailored to overcome misconceptions about CR and address some of the barriers patients perceive when deciding to enroll in CR. For instance, two patients who decided not to attend CR said they believed it was not necessary to attend, as they engage in exercises independently at home or had already attended CR for a previous cardiac event. With one-on-one conversation about CR, there is an opportunity to clarify misconceptions, discuss the educational and other comprehensive components offered, the benefits of participation, and convey that exercise is completed in a medically supervised environment. Limitations Caution is warranted when interpreting the results from this study. Results cannot be generalized to non-English or Punjabi speaking South Asians. Moreover, given the nature of the qualitative design and the lack of literature in this area, replication is warranted with a more heterogeneous population, Furthermore, because patients from other ethnocultural groups were not interviewed, it is unclear whether, or by how much, South 34 Asian participants have differing perspectives on CR referral compared to other ethnic groups. Conclusion While results from this first qualitative study on CR referral methods indicate that liaison type referral may be the optimal means for referring South Asian cardiac patients, further investigation is needed. Clearly there are advantages to liaison referral including improved communication, however referrals are not universal, South Asian patients prefer discussion with physicians rather than allied health care providers, and a provider fluent in the patient's first language may not be available. When follow-up assessments are completed, the larger CRCARE study will enable quantitative examination of the rates of CR referral, enrollment and participation by referral method. In conclusion, results indicate that the opportunity for discussion with health care providers and the ease of the referral process may contribute to CR attendance among South Asian cardiac patients - all characteristics apparent in liaison referral. Overall, promotion of CR discussions pre-discharge between South Asian patients and physicians along with proactive facilitation of CR referrals at the health system level show promise in ensuring greater uptake of these life-saving services. Acknowledgments: This study was funded by the Canadian Institutes of Health Research (CIHR) (Grant # HOA-80676) and the Heart and Stroke Foundation. K Grewal is supported by a CIHR Canada Graduate Scholarship Masters Award. S Grace is supported by the CIHR (Grant # MSH-80489). S Anand is a recipient of the CIHR Clinician- Scientist Phase 2 Award, and holds the May Cohen Eli Lilly Chair in Women's Health Research at McMaster University. We are grateful to all study recruiters and investigators for their efforts in participant recruitment for the overall study. 35 References 1. Anand SS, Yusuf S, Vuksan V, et.al. Differences in risk factors, atherosclerosis and cardiovascular disease between ethnic groups in Canada: The Study of Health Assessment and Risk in Ethnic groups (SHARE). Lancet. 2000;356:279-284. 2. Bhopal R. Glossary of terms relating to ethnicity and race: For reflection and debate. J Epidemiol Commun Health. 2004;5 8:441 -445. 3. Gupta M, Singh N, Verma S. South Asians and cardiovascular risk: What clinicians should know. Circulation. 2006;113:e924-9. 4. McKeigue PM, Miller GJ, Marmot MG. Coronary heart disease in South Asians overseas: A review. J Clin Epidemiol. 1989;42:597-609. 5. Rissam HS, Kishore S, Trehan N. Coronary artery disease in young Indians: The missing link. Journal of the Indian Academy of Clinical Medicine. 2001 ;2:128-132. 6. Oldridge NB, Guyatt GH, Fischer ME, Rimm AA. Cardiac rehabilitation after myocardial infarction, combined experience of randomized clinical trials. JAMA. 1988;260:945-950. 7. Mochari H, Lee JR, Kligfield P, Mosca L. Ethnic differences in barriers and referral to cardiac rehabilitation among women hospitalized with coronary heart disease. Prev Cardiol. 2006;9:8-13. 8. Tod AM, Wadsworth E, Asif S, Gerrish K. Cardiac rehabilitation: The needs of South Asian cardiac patients. Br JNurs. 2001;10:1028-1033. 9. Yancey AK. Poor attendance, poor outcomes: Challenges facing the underserved. J Cardiopulm Rehabil. 2004;24:313-316. 10. Banerjee AT, Gupta M, Singh N. Patient characteristics, compliance, and exercise outcomes of South Asians enrolled in cardiac rehabilitation. J Cardiopulm Rehabil Prev. 2007;27:212-218. 11. Wilkinson P, Sayer J, Laji K, et al. Comparison of case fatality in South Asian and white patients after acute myocardial infarction: Observational study. BMJ. 1996;312:1330-1333. 12. Bunker SJ, Goble AJ. Cardiac rehabilitation: Under-referral and underutilisation. Med JAust. 2003;179:332-333. 13. Grace SL, Abbey SE, Shnek ZM, Irvine J, Franche RL, Stewart DE. Cardiac rehabilitation II: Referral and participation. Gen Hosp Psychiatry. 2002;24:127-134. 14. Cooper AF, Jackson G, Weinman J, Home R. Factors associated with cardiac rehabilitation attendance: A systematic review of the literature. Clin Rehabil. 2002;16:541-552. 15. Grace SL, Evindar A, Kung TN, Scholey PE, Stewart DE. Automatic referral to cardiac rehabilitation. Med Care. 2004;42:661-669. 16. Grace SL, Scholey P, Suskin N, et al. A prospective comparison of cardiac rehabilitation enrollment following automatic versus usual referral. J Rehabil Med. 2007;39:239-245. 17. Dafoe W, Arthur H, Stokes H, Morrin L, Beaton L, Canadian Cardiovascular Society Access to Care Working Group on Cardiac Rehabilitation. Universal access: But when? Treating the right patient at the right time: Access to cardiac rehabilitation. Can J Cardiol. 2006;22:905-911. 18. Grace SL, Evindar A, Kung T, Scholey P, Stewart DE. Automatic referral to cardiac rehabilitation: Reducing disparities in uptake. Eur J Cardiovasc Prev Rehabil. 2004;11:89. 19. Smith KM, Harkness K, Arthur HM. Predicting cardiac rehabilitation enrollment: The role of automatic physician referral. European journal of cardiovascular prevention and rehabilitation. London: Lippincott Williams Wilkins; 2006; 13:60. 20. Cardiac Care Network. The Ontario Cardiac Rehabilitation Pilot Project: Report and recommendations. Toronto, ON: Cardiac Care Network; 2002. 21. Jolly K, Greenfield SM, Hare R. Attendance of ethnic minority patients in cardiac rehabilitation. J Cardiopulm Rehabil. 2004;24:308-312. 22. Krepostman S, Scholey P, Stewart DE, Grace SL. A qualitative pilot study examining automatic referral mechanisms to cardiac rehabilitation. Presented at University Health Network Research Day. Toronto, ON:2005. 23. Canadian Association of Cardiac Rehabilitation. Canadian guidelines for cardiac rehabilitation and cardiovascular disease prevention: Enhancing the science, refining the art. Winnipeg, MB: CACR; 2004. 24. Link I, Stewart DE, Williamson KM, et al. The Cardiac Rehabilitation care Continuity through Automatic Referral Evaluation (CRCARE) study: Design and methods. Presented at Heart & Stroke/Richard Lewar Centre of Excellence in Cardiovascular Research Annual Scientific Day. Toronto, ON:2007. 25. QSR International Pty Ltd. NVIVO. Melbourne, Australia:2006;7. 37 26. Strauss AL. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed. Thousand Oaks, CA: Sage Publications; 1998. 27. Muthu Kumar D, Symonds RP, Sundar S, Ibrahim K, Savelyich BS, Miller E. Information needs of Asian and white British cancer patients and their families in Leicestershire: A cross-sectional survey. Br J Cancer. 2004;90:1474-1478. 28. Daly J, Sindone AP, Thompson DR, Hancock K, Chang E, Davidson P. Barriers to participation in and adherence to cardiac rehabilitation programs: A critical literature review. Prog Cardiovasc Nurs. 2002;17:8-17. 29. Grace SL, Evindar A, Abramson BL, Stewart DE. Physician management preferences for cardiac patients: Factors affecting referral to cardiac rehabilitation. Can J Cardiol. 2004;20:1101-1107. 30. Arthur HM. Determinants of referral to cardiac rehabilitation programs in patients with coronary artery disease: A systematic review. Journal of Clinical Outcomes Management. 2006;13:572-577'. 38 Table 1: Participant Characteristics, N=16 Characteristic n(%) Sex Male 15(93.8%) Age (mean ± SD) 62.6±7.9 Country of birth India 11(68.8%) Bangladesh 2(12.5%) Sri Lanka 2(12.5%) Uganda 1(6.3%) Years in Canada 0-10 years 3(18.8%) 11-20 years 3(18.8%) 21-30 years 2(12.5%) 31+years 7(43.8%) Missing 1(6.3%) Extended Discussion Information Dissemination via Liaison CR Referral This thesis examined the awareness and knowledge of CR referral among South Asian patients diagnosed with acute coronary syndrome. A schematic representation of themes from this study is presented in Appendix D. Results indicated that liaison referral may be the most suitable referral method among this at-risk population. In particular, this method of referral allowed for greater discussion about CR to take place between patient and provider; although, patients indicated a desire for even further discussion about CR services suggesting room for improvement. Indeed, several studies have found that the provision of information is an important factor in increasing a patient's adherence to treatment and in changing risk- related behaviours or attitudes after a cardiac event (Rushford, 2007; Stewart, Abbey, Shnek, Irvine, & Grace, 2004; World Health Organization, 1993). Hospitalization for a cardiac event presents an opportunity to disseminate such important information. A study by Rushford et al. (2007) found that female cardiac patients who recalled receiving information about CR while in hospital, were more likely to attend CR. Similarly, a study by Mochari and colleagues (2006) showed that instruction to attend CR was thought to be important to subjects. However, white patients were more likely to have received such instructions compared to ethnocultural minorities. This finding is consistent with other literature in this area demonstrating differences in referral for various procedures and treatments between ethnic groups (Chen, Rathore, Radford,Wang, & Krumholz, 2001; Feder et al., 2002). As such, ensuring to include discussions about CR while in hospital 40 may be a particularly effective method to increase the enrollment of South Asians in CR. Such an opportunity exists during a liaison referral, where health care providers can present patients with information about CR and the importance of participation in secondary prevention. Secondly, during a liaison referral, because of one-on-one discussion, there is a great opportunity to clarify misconceptions that patients may have about CR. For instance, some participants in the current study who indicated they would not be attending CR perceived exercise at home as sufficient for recovery, and that they had no medical issues treatable through CR. Having the opportunity to speak with a health care provider about CR represents an ideal occasion to clarify misconceptions about recovery and CR, and explain the comprehensive services offered by many CR programs. Some participants acknowledged that they were told about CR by a health care professional through a discharge class, with a group of other patients. This is a great opportunity to disseminate information about CR; however, one-on-one discussions about CR may allow for greater, uncensored, exchange about CR. Furthermore, hospitals which serve a greater proportion of South Asian patients may find benefit in having health care providers fluent in South Asian languages. Thus, where South Asian patients have language barriers, health professionals fluent in South Asian languages could facilitate the dissemination of CR information, and can also provide sensitivity to cultural issues that may be apparent. With a liaison referral, there is also continuity from hospital to enrollment in CR. Unlike most patients referred to CR by automatic referral, patients in the liaison condition 41 who were referred to CR had personal discussions about CR prior to discharge from the hospital, in addition to letters or phone calls from the CR program to set up an intake appointment. This may facilitate the decision to attend CR, as patients already have an initial level of awareness of the program from knowledgeable sources. This sort of teachable moment about CR when in hospital for a life threatening event or procedure has the potential to positively influence a patient's decision to attend CR. Although liaison referral may represent an ideal means of increasing CR participation among this at-risk South Asian population, there remain significant limitations with this method of referral. Firstly, liaison referral is not universal; thus, similar to 'usual' referral methods, some patients may never be referred. Secondly, there may not be health care providers available who are fluent in a patient's first language to discuss CR. Moreover, the costs associated with employing personnel to discuss and disseminate CR referrals need to be explored. In order to overcome cost issues, discussion about CR could be completed during routine appointments patients have with staff during their hospital stay (i.e. with a nurse, physiotherapist or cardiologist, etc.). Need for Automatic Referral Automatic referral to CR shows great promise. Studies have shown that automatic referral may reduce access disparities to CR because all eligible patients are systematically referred, resulting in a greater number of total referrals and enrollments (Dafoe et al., 2006; Grace, Evindar, Kung, Scholey, & Stewart, 2004b; Smith, Harkness, Arthur, 2006). However, as was seen in the present study, with automatic referral, 42 patients may be less aware of what CR programs actually entail due to a lack of discussion. Merging automatic referral with a liaison referral for high-risk patients, such as South Asians, could be beneficial. All patients would still be automatically referred to CR, but personnel would talk to high-risk patients one-on-one about CR and the actual referral. Implementing such a recommendation may also reduce potential cost and time barriers associated with liaison referral. Community Dissemination Several participants in this study acknowledged that they had obtained information about CR from family, friends, and/or community members who had previously attended CR. As is evident, the South Asian community at large is an important source of information dissemination for fellow community members. Because of the increased risk of CVD in this population, there is a need to educate the South Asian community about the underutilized, yet life-saving CR services available to facilitate their recovery. As one patient in this study emphasized: "There could be more community dissemination of information to make South Asians more aware that we are prone to these problems, and what services are available, and encourage them to go and get those services". Providing information about CR at community centres and at community events represents one method of increasing community awareness of such programs. Health care workers can engage and target the South Asian population by entering such communities 43 and providing the necessary information in an attempt to increase the level of awareness of GR. As discussed in a study of South Asian women with coronary heart disease (CHD), there is a need for secondary prevention guidance at the community and individual level to raise awareness of such services (Sriskantharajah & Kai, 2007). Cultural Considerations The present study suggested that beyond the actual referral to CR, participants considered the decision to attend CR a largely personal choice. Factors such as discussions about CR, the ease of the CR referral process, and the actual referral to CR are necessary precursors to the individual decision to enroll. The majority of patients in this study were intending to participate in CR. However, as the literature shows, compared to other ethnic groups, South Asians are less likely to attend and/or complete CR (Banerjee et al., 2007). Although not a primary objective of this study, it is important to recognize that broader issues may also affect a South Asian patient's decision to attend CR (Nakamura, 2002). For instance, structural barriers and cultural differences may have an influence on a patient's decision to attend CR. In Jolly et al's (2004) study of South Asian cardiac patients, non-attendees of CR were more likely to be female, have communication barriers, lack transportation to programs, have a belief in fate leading them to perceive the illness is out of the patient's control. Many of the factors listed above may have cultural roots. For instance, a study by Srikantharajah and Kai (2006) indicated that South Asian women with CHD thought the Western conceptualization of exercise, such as targeted physical activity or sport, was a 44 "selfish" activity (Sriskantharajah & Kai, 2007). Instead, these women preferred staying active through activities of daily living. Furthermore, these women were deterred from participating in mixed-sex physical activity due to modesty concerns. These results have also been found by other studies of South Asian women and physical activity (Bryan, Tremblay, Perez, Ardern, & Katzmarzyk, 2006). Other studies have suggested having familiar venues with supportive leaders may encourage the participation of South Asian women in CR (Vishram, Crosland, Unsworth, & Long, 2007). Although findings of such studies suggest that South Asians may prefer to attend CR programs instructed in their first language or in a familiar location or community venue, there are conflicting views. Some studies argue that South Asians attitudes and perceptions towards physical activity programs are similar to majority populations, thus programs such as CR should not overemphasize cultural differences (Sriskantharajah & Kai, 2007). On the other hand, there are studies that have promoted the adoption of approaches that do emphasize cultural differences (Johnson, 2000; Lip, Luscombe, McCarry, Malik, & Beevers, 1996). These conflicting recommendations warrant further research into whether cultural differences affect CR attendance among South Asians, and whether interventions such as culturally-specific CR programs could improve attendance. In fact, in the current study only South Asian ACS patients were interviewed. Thus, it is unclear whether South Asians have differing perceptions on CR referral, compared to other ethnocultural groups. Future research should examine such perceptions in other ethnocultural groups to determine similarities and differences between South Asian individuals. 45 Additionally, as indicated above, several studies have found that South Asians perceive their illnesses to be a result of fate; thus, they believe they lack personal control over the illness ((Farooqi, Nagra, Edgar, & Khunti, 2000; Grewal, Stewart, & Grace, Under review; Jolly et al., 2004). Fatalistic illness perceptions among this population may be maladaptive, and could also contribute to the low attendance of South Asians in CR. Patients with such beliefs may think they cannot control their illness, hence they may be less inclined to participate in programs aimed to improve prognosis, believing their actions will not affect the outcome of their illness. Interventions targeted at modifying such illness perceptions may help in increasing CR participation in this high risk population (Grewal et al., Under review; Petrie, Cameron, Ellis, Buick, & Weinman, 2002). Complications among South Asian Cardiac Patients In this study, many patients from all referral conditions spoke of complications associated with their conditions. The occurrence of such complications could also act as a potential barrier to CR by negatively impacting attendance. Some of the complications experienced by patients in this study included the co-occurrence of diabetes, adverse reaction to medications, and wound infection. Previous literature has shown that South Asian cardiac patients typically have higher rates of complication after a cardiac event or procedure (Brister, Hamdulay, Verma, Maganti, & Buchanan, 2007; Rissam et al., 2001). For instance, a study by Brister et al. (2007) found an increased rate of postoperative morbidity (e.g. infection, myocardial infarction, sepsis) among South Asian coronary 46 artery bypass grafting patients (Brister et al., 2007). Such issues also need to be considered when referring South Asians to CR and examining their attendance in such programs. Patients need to be stable to be referred, and their comorbid conditions taken into consideration when developing an exercise prescription and rehabilitation plan. This is standard practice nevertheless, and thus these ancillary conditions should not deter South Asian patients from both CR referral or participation. 47 Strengths and Limitations Limitations In addition to the study limitations described in the manuscript, other limitations warranting discussion exist. Certain limitations relate to the methods employed in this study. For instance, interviews for this study were all conducted in either English or Punjabi, because the investigator was able to speak these languages. It is recognized that South Asians of different backgrounds speak languages in addition to Punjabi (i.e. Urdu and Hindi). Therefore, there was a subsection of potential participants, those who only speak Hindi or Urdu, who could not be interviewed. By excluding these individuals, certain themes may have been overlooked and results therefore cannot be generalized to non-English speaking South Asians. Furthermore, South Asians as an ethnocultural group are a very large and diverse group (Bhopal et al., 1999). The South Asian classification refers to over 20 cultures from four countries, thus, there is a large amount of heterogeneity that exists between subpopulations (Gupta, 2001). Given the relatively small sample size of South Asians in the current study, we could not explore differences that may exist between South Asian subgroups. However, we cannot neglect the fact that differences may exist between subgroups. Additionally, interviews for this study were conducted by telephone. Hence, it is important to acknowledge that important non-verbal cues, such as facial expressions, gestures and body language, may have been overlooked during analysis. 48 Finally, this study explored the use of automatic referral in increasing CR participation among South Asians by investigating CR referral awareness and intentions to participate in CR. Although automatic referral increases the number of referrals made to CR and may reduce disparities in CR referral, it cannot overcome the language barrier which has commonly been cited as an obstacle to CR among South Asians. Future research will be required to investigate means to overcome language issues as a barrier to CR. Strengths This thesis has many strengths. Firstly, to the author's knowledge, it the first. study examining the low attendance of South Asian cardiac patients in CR program from a Canadian perspective. While one Canadian study (Banerjee et al., 2007) has shown that South Asians are less likely to complete CR programs, no studies have examined this issue in depth, specifically in a Canadian context. Secondly, this thesis investigated healthcare system-level factors in relation to CR attendance, while the majority of studies in this area focus on patient-level factors contributing to attendance. In regards to methods, the incorporation of Grounded Theory, the use of a second coder and memoing attempted to eliminate bias from the findings and theories that were derived from the data. Furthermore, the individual conducting the interviews was South Asian herself (KG). This 'insider status' may have facilitated patients consenting to participate in interviews (De Andrade, 2000). Furthermore, having an interviewer with 'insider status' may have also increased some of the participants' comfort level when 49 answering questions, allowing for greater exchange between the interviewer and interviewee. 50 Future Directions The larger CRCARE study aims to investigate the four methods of referral to CR, which were described in this study. Four populations at an increased risk of developing cardiovascular disease and/or having poorer outcomes are targeted in the CRCARE study (Link et al., 2007). These groups are targeted in order to specifically examine their referral and attendance in CR programs. The four high risk subgroups are: individuals of low socioeconomic status; women; those who live in rural areas; and South Asians. As mentioned above, the CRCARE study will allow us to examine quantitatively which method of referral results in the greatest number of referrals for South Asians, and other high risk subgroups, and whether any specific method of referral may result in improved attendance in CR. The few studies that have explored the low attendance of South Asians in CR have largely focused on patient-level factors for non-attendance (Jolly et al., 2004; Webster et al., 2002). Addressing barriers at the healthcare system- and provider-level also need to be examined (Grace et al., 2004a; Grace et al., 2006). This study represents an initial step in examining healthcare system factors which influence CR attendance among South Asian cardiac patients. Hopefully, future studies can build upon the results of this study, perhaps through a randomized controlled trial comparing modes of referral in a South Asian population. 51 Conclusion Findings suggested that liaison referral may be the preferred means to increase CR participation among South Asian cardiac patients, and ultimately their cardiac prognosis. Improving on this mode of referral through the provision of information from trusted health care providers, such as physicians, and applying this method universally may be the optimal means of ensuring greater South Asian CR participation. Practical Implications Due to the systematic nature of automatic referral and its potential to reduce access inequalities, automatic referral is encouraging. Utilizing automatic referral methods along with a liaison referral for high-risk patients, such as South Asians, may result in greater CR participation. After a major cardiac event, patients are more motivated to engage in health behaviour change (McBride, Emmons & Lipkus, 2003). Thus, providing patients with the appropriate information about CR, while in hospital can help educate a patient's decision to attend CR. Although changes to referral methods would be implemented at the healthcare level, results indicated that discussion between patient and health care provider are important. This suggests beyond the health care level, there are interpersonal relationships still required in discussing the referral. However, as previously discussed, further research in this area is required. The availability of health care providers fluent in South Asian languages may also be helpful in the dissemination of CR information, especially for those patients with language barriers. Furthermore, some patients desired to have discussion regarding CR 52 with physicians, rather than allied health professionals. Examining methods to encourage physicians to contribute to such discussions is also warranted. Finally, because of sedation, anxiety and side effects of medications, the recall of in-hospital discussions may be difficult for patients. Thus, pamphlets which patients can take home may also be useful to improve the recall of in-hospital CR discussions. In order reduce capacity issues which may be encountered when hospitals refer to CR automatically, particularly in large urban centres, increases in CR funding would be beneficial. 53 References Ades, P. A. (2001). Cardiac rehabilitation and secondary prevention of coronary heart disease. New England Journal of Medicine, 345(12), 892-902. American College of Physicians. (2004). Racial and ethnic disparities in health care. Annals of Internal Medicine, 141,226-232. Anand, S. S., Yusuf, S., Vuksan, V., Devanesen, S., Teo, K. K., Montague, P. A., et al. (2000). Differences in risk factors, atherosclerosis and cardiovascular disease between ethnic groups in Canada: The Study of Health Assessment and Risk in Ethnic groups (SHARE). The Lancet, 356, 279-284. - Banerjee, A. T., Gupta, M., & Singh, N. (2007). Patient characteristics, compliance, and exercise outcomes of South Asians enrolled in cardiac rehabilitation. Journal of Cardiopulmonary Rehabilitation and Prevention, 27(4), 212-218. Bercovitz, K. L. (1998). Canada's active living policy: A critical analysis. Health Promotion International, 13(4), 319-328. Bhopal, R. (2002). Epidemic of cardiovascular disease in South Asians. British Medical Journal, 324(733%), 625-626. Bhopal, R. (2004). Glossary of terms relating to ethnicity and race: For reflection and debate. Journal of Epidemiology and Community Health, 58, 441-445. Bhopal, R., Unwin, N., White, M., Yallop, J., Walker, L., Alberti, K. G., et al. (1999). Heterogeneity of coronary heart disease risk factors in Indian, Pakistani, Bangladeshi, and European origin populations: Cross sectional study. British Medical Journal, 319(7204), 215-220. Brister, S. J., Hamdulay, Z., Verma, S., Maganti, M., & Buchanan, M. R. (2007). Ethnic diversity: South Asian ethnicity is associated with increased coronary artery bypass grafting mortality. Journal of Thoracic and Cardiovascular Surgery, 133(1), 150- 154. Bryan, S. N., Tremblay, M. S., Perez, C. E., Ardern, C. I., & Katzmarzyk, P. T. (2006). Physical activity and ethnicity: Evidence from the Canadian Community Health Survey. Canadian Journal of Public Health, 97(4), 271-276. Bunker, S. J., & Goble, A. J. (2003). Cardiac rehabilitation: Under-referral and underutilisation. The Medical Journal of Australia, 179(7), 332-333. Canadian Association of Cardiac Rehabilitation. (2004). Canadian guidelines for cardiac rehabilitation and cardiovascular disease prevention: Enhancing the science, refining the art. Winnipeg, MB: Canadian Association of Cardiac Rehabilitation. Canadian Association of Cardiac Rehabilitation. (1999). Canadian guidelines for cardiac rehabilitation and cardiovascular disease prevention. Winnipeg: MB Canadian Association of Cardiac Rehabilitation. 55 Cardiac Care Network. (2002). The Ontario Cardiac Rehabilitation Pilot Project: Report and recommendations. Toronto, ON: Cardiac Care Network. Chen, J., Rathore, S. S., Radford, M. J., Wang, Y., & Krumholz, H. M. (2001). Racial differences in the use of cardiac catheterization after acute myocardial infarction. New England Journal of Medicine, 344(19), 1443-1449. Coakley, J. (Ed.). (2001). Sport in society: Issues & controversies (7th ed.). New York: McGraw Hill. Cooper, A. F., Jackson, G., Weinman, J., & Home, R. (2002). Factors associated with cardiac rehabilitation attendance: A systematic review of the literature. Clinical Rehabilitation, 16(5), 541-552. Currie, J. C. (2001). Best practices: Treatment and rehabilitation for women with substance abuse problems. Ottawa: Health Canada. Dafoe, W., Arthur, H., Stokes, H., Motrin, L., Beaton, L., & Canadian Cardiovascular Society Access to Care Working Group on Cardiac Rehabilitation. (2006). Universal access: But when? Treating the right patient at the right time: Access to cardiac rehabilitation. Canadian Journal of Cardiology, 22(11), 905-911. Dafoe, W., & Huston, P. (1997). Current trends in cardiac rehabilitation. Canadian Medical Association Journal, 156(4), 527-532. 56 Daly, J., Sindone, A. P., Thompson, D. R., Hancock, K., Chang, E., & Davidson, P. (2002). Barriers to participation in and adherence to cardiac rehabilitation programs: A critical literature review. Progress in Cardiovascular Nursing, 17(X), 8-17. De Andrade, L. L. (2000). Negotiating from the inside. Ethnography, 39(3), 268-290. Deedwania, P., & Singh, V. (2005). Coronary artery disease in South Asians: Evolving strategies for treatment and prevention. Indian Heart Journal, 5 7(6), 617-631. Department of Health. (2000). National service framework for coronary heart disease. UK: Department of Health. Farooqi, A., Nagra, D., Edgar, T., & Khunti, K. (2000). Attitudes to lifestyle risk factors for coronary heart disease amongst South Asians in Leicester: A focus group study. Family Practice, 77(4), 293-297. Feder, G., Crook, A. M., Magee, P., Banerjee, S., Tirnmis, A. D., & Hemingway, H. (2002). Ethnic differences in invasive management of coronary disease: Prospective cohort study of patients undergoing angiography. British Medical Journal, 324(7336), 511-516. Grace, S. L., Abbey, S. E., Shnek, Z. M., Irvine, J., Franche, R. L., & Stewart, D. E. (2002). Cardiac rehabilitation II: Referral and participation. General Hospital Psychiatry, 24(3), 127-134. 57 Grace, S. L., Evindar, A., Kung, T., Scholey, P., & Stewart, D. E. (2004a). Automatic referral to cardiac rehabilitation: Reducing disparities in uptake. European Journal of Cardiovascular Prevention and Rehabilitation, 11(1), 89. Grace, S. L., Evindar, A., Kung, T. N., Scholey, P. E., & Stewart, D. E. (2004b). Automatic referral to cardiac rehabilitation. Medical Care, 42(1), 661-669. Grace, S. L., Krepostman, S., Brooks, D., Jaglal, S., Abramson, B. L., Scholey, P., et al. (2006). Referral to and discharge from cardiac rehabilitation: Key informant views on continuity of care. Journal of Evaluation in Clinical Practice, 12(2), 155-163. Gregory, P. C, LaVeist, T. A., & Simpson, C. (2006). Racial disparities in access to cardiac rehabilitation. American Journal of Physical Medicine & Rehabilitation / Association of Academic Physiatrists, 85(9), 705-710. Grewal, K., Stewart, D. E., & Grace, S. L. (Under review). Differences in social support and illness perceptions among South Asian and white coronary artery disease patients. Journal of Health Psychology. Gupta, M. (2001). South Asians a high-risk group for heart disease. Retrieved 02/06, 2008, from http://ww2.heartandstroke.ca/Page.asp?PageID=33&ArticleID=743&Src =news&From=SubCategory Gupta, M., Singh, N., & Verma, S. (2006). South Asians and cardiovascular risk: What clinicians should know. Circulation, 113(25), e924-9. 58 Hambrecht, R., Wolf, A., Gielen, S., Linke, A., Hofer, J., Erbs, S., et al. (2000). Effect of exercise on coronary endothelial function in patients with coronary artery disease. New England Journal of Medicine, 342(1), 454-460. Health Canada. (1998). Economic burden of illness in Canada, 1998. Ottawa: Health Canada. Health Canada. (2006). Determinants of health. Ottawa: Health Canada. Hedback, B., Perk, J., Hornblad, M., & Ohlsson, U. (2001). Cardiac rehabilitation after coronary artery bypass surgery: 10-year results on mortality, morbidity and readmissions to hospital. Journal of Cardiovascular Risk, 8, 153-158. Heart and Stroke Foundation of Canada. (1999). The changing face of heart disease and stroke in Canada 2000. Ottawa: Heart and Stroke Foundation. Hyman, I. (2007). Immigration and health: Reviewing the evidence of the healthy immigrant effect in Canada. Toronto: Centre of Excellence for Research on Immigration and Settlement. Ismail, J., Jafar, T. H., Jafary, F. H., White, F., Faruqui, A. M., & Chaturvedi, N. (2004). Risk factors for non-fatal myocardial infarction in young South Asian adults. Heart, 90(3), 259-263. 59 Jackson, L., Leclerc, J., Erskine, Y., & Linden, W. (2005). Getting the most out of cardiac rehabilitation: A review of referral and adherence predictors. Heart, 91(1), 10-14. Johnson, M. (2000). Perceptions of barriers to healthy physical activity among Asian communities. Sports, Education & Society, 5,151-170. Jolliffe, J. A., Rees, K., Taylor, R. S., Thompson, D., Oldridge, N., & Ebrahim, S. (2001). Exercise-based rehabilitation for coronary heart disease. Cochrane Database of Systematic Reviews, 1(1), CD001800. Jolly, K., Greenfield, S. M., & Hare, R. (2004). Attendance of ethnic minority patients in cardiac rehabilitation. Journal of Cardiopulmonary Rehabilitation, 24(5), 308-312. Joshi, P., Islam, S., Pais, P., Reddy, S., Dorairaj, P., Kazmi, K., et al. (2007). Risk factors for early myocardial infarction in South Asians compared with individuals in other countries. Journal of the American Medical Association, 297(3), 286-294. Krepostman, S., Scholey, P., Stewart, D. E., & Grace, S. L. (2005). A qualitative pilot study examining automatic referral mechanisms to cardiac rehabilitation. Presented at the: University Health Network Research Day, Toronto, Ontario. Kumar, N. (2002). A gender- and race-based analysis of the high prevalence of cardiovascular disease within South Asian immigrant women living in Canadian society. Journal of Urban Health, 79(4)571. 60 Langille, D. B., Joffres, M. R., MacPherson, K. M., Andreou, P., Kirkland, S. A., & MacLean, D. R. (1999). Prevalence of risk factors for cardiovascular disease in Canadians 55 to 74 years of age: Results from the Canadian Heart Health Surveys, 1986-1992. Canadian Medical Association Journal, 161(S Suppl), S3-9. Lear, S. A. (2004). Ethnic issues in primary prevention. Canadian Association of Cardiac Rehabilitation, Newsbeat, 12(1). Link, I., Stewart, D. E., Williamson, K. M., Rush, J. W., Reid, R. D., Anand, S. S. et al. (2007). The cardiac rehabilitation care continuity through automatic referral evaluation (CRCARE) study: Design and methods. Presented at the: Heart & Stroke / Richard Lewar Centre of Excellence in Cardiovascular Research Annual Scientific Day, Toronto, ON. Lip, G. Y., Cader, M. Z., Lee, F., Munir, S. M., & Beevers, D. G. (1996). Ethnic differences in pre-admission levels of physical activity in patients admitted with myocardial infarction. International Journal of Cardiology, 56(2), 169-175. Lip, G. Y., Luscombe, C, McCarry, M., Malik, I., & Beevers, G. (1996). Ethnic differences in public health awareness, health perceptions and physical exercise: Implications for heart disease prevention. Ethnicity & Health, 7(1), 47-53. Manuel, D. G., Leung, M., Nguyen, K., Tanuseputro, P., Johansen, H., & Canadian Cardiovascular Outcomes Research Team. (2003). Burden of cardiovascular disease in Canada. Canadian Journal of Cardiology, 19(9), 997-1004. 61 McBride, C. M, Emmons, K. M, & Lipkus, I. M. (2003). Understanding the potential of teachable moments: The case of smoking cessation. Health Education Research, 18(2), 156-170. McDonald, J. T., & Kennedy, S. (2004). Insights into the 'healthy immigrant effect': Health status and health service use of immigrants to Canada. Social Science & Medicine, 59(8), 1613-1627. McKeigue, P. M., Miller, G. J., & Marmot, M. G. (1989). Coronary heart disease in South Asians overseas: A review. Journal of Clinical Epidemiology, 42(7), 597-609. McKeigue, P. M., & Sevak, L. (1994). Coronary heart disease in South Asian communities. London: Health Education Authorities. Mochari, H., Lee, J.R., Kligfield, P., & Mosca, L. (2006). Ethnic differences in barriers and referral to cardiac rehabilitation among women hospitalized with coronary heart disease. Preventive Cardiology, 9(1), 8-13. Nakamura, Y. (2002). Beyond the hijab: Female Muslims and physical activity. Women in Sport and Physical Activity, 11(1), 21-48. Oldridge, N. B., Guyatt, G. H., Fischer, M. E., & Rimm, A. A. (1988). Cardiac rehabilitation after myocardial infarction, combined experience of randomized clinical trials. Journal of the American Medical Association, 260(7), 945-950. Patel, J. V., Vyas, A., Cruickshank, J. K., Prabhakaran, D., Hughes, E., Reddy, K. S., et al. (2006). Impact of migration on coronary heart disease risk factors: Comparison of Gujaratis in Britain and their contempories in villages of origin in India. Atherosclerosis, 185,297-306. Petrie, K. J., Cameron, L. D., Ellis, C. J., Buick, D., & Weinman, J. (2002). Changing illness perceptions after myocardial infarction: An early intervention randomized controlled trial. Psychosomatic Medicine, 64(4), 580-586. Rees, K., Victory, J., Beswick, A. D., Turner, S. C, Griebsch, I., Taylor, F. C, et al. (2005). Cardiac rehabilitation in the UK: Uptake among under-represented groups. Heart, Pi, 375-376. Rissam, H. S., Kishore, S., & Trehan, N. (2001). Coronary artery disease in young Indians: The missing link. Journal of the Indian Academy of Clinical Medicine, 2(3), 128-132. Rushford, N. (2007). Recall of information received in hospital by female cardiac patients. European Journal of Cardiovascular Prevention and Rehabilitation, 14(3), 463. Singh, N., & Gupta, M. (2005). Clinical characteristics of South Asian patients hospitalized with heart failure. Ethnicity & Disease, 15(4), 615-619. 63 Smith, K. M., Harkness, K., & Arthur, H. M. (2006). Predicting cardiac rehabilitation enrollment: The role of automatic physician referral. European Journal of Cardiovascular Prevention and Rehabilitation, 13(1), 60-68. Sriskantharajah, J., & Kai, J. (2007). Promoting physical activity among South Asian women with coronary heart disease and diabetes: What might help? Family Practice, 24(1), 71-76. Statistics Canada. (2008). 2006 census: Ethnocultural portrait of Canada highlight tables. Retrieved April/2,2008, from http://wwwl2.statcan.ca/english/census06/ data/highlights/ethnic/pages/Page.cfm?Lang=E&Geo-PR&Code=01&Table=l&Dat a=Count&StartRec= 1 &Sort=2&Display=Page Stewart, D. E., Abbey, S. E., Shnek, Z. M., Irvine, J., & Grace, S. L. (2004). Gender differences in health information needs and decisional preferences in patients recovering from an acute ischemic coronary event. Psychosomatic Medicine, 66(1), 42-48. Stone, J. A., Cyr, C, Friesen, M., Kennedy-Symonds, H., Stene, R., Smilovitch, M., et al. (2001). Canadian guidelines for cardiac rehabilitation and atherosclerotic heart disease prevention: A summary. Canadian Journal of Cardiology, 17 Suppl B, SB- SOB. 64 Stone, J. A., & Arthur, H. M. (2005). Canadian guidelines for cardiac rehabilitation and cardiovascular disease prevention, second edition, 2004: Executive summary. Canadian Journal of Cardiology, 2i(Suppl D), 3-19. Taylor, R. S., Brown, A., Ebrahim, S., Jolliffe, J., Noorani, H., Rees, K., et al. (2004). Exercise-based rehabilitation for patients with coronary heart disease: Systematic review and meta-analysis of randomized controlled trials. American Journal of Medicine, 116(10), 682-692. Thompson, D. R. (2002). Improving cardiac rehabilitation: A view from the United Kingdom. European Journal of Cardiovascular Nursing, 1(2), 95-99. Thompson, D. R., & Bowman, G. S. (1998). Evidence for the effectiveness of cardiac rehabilitation. Intensive & Critical Care Nursing, 14(1), 38-48. Tod, A. M., Lacey, E. A., & McNeill, F. (2002). 'I'm still waiting...': Barriers to accessing cardiac rehabilitation services. Journal of Advanced Nursing, 40(A), 421-431. Tod, A. M., Wadsworth, E., Asif, S., & Gerrish, K. (2001). Cardiac rehabilitation: The needs of South Asian cardiac patients. British Journal of Nursing, 10(16), 1028- 1033. Vishram, S., Crosland, A., Unsworth, J., & Long, S. (2007). Engaging women from South Asian communities in cardiac rehabilitation. British Journal of Community Nursing, 72(1), 13-18. 65 Webster, R. A., Thompson, D. R., & Mayou, R. A. (2002). The experiences and needs of Gujarati Hindu patients and partners in the first month after a myocardial infarction. European Journal of Cardiovascular Nursing, 1,69-76. Wilkinson, P., Sayer, J., Laji, K., Grundy, C, Marchant, B., Kopelman, P., et al. (1996). Comparison of case fatality in South Asian and white patients after acute myocardial infarction: Observational study. British MedicalJournal, 312(7042), 1330-1333. World Health Organization. (1993). Rehabilitation after cardiovascular diseases, with special emphasis on developing countries. Report of a WHO expert committee. Geneva: WHO. Yancey, A. K. (2004). Poor attendance, poor outcomes: Challenges facing the underserved. Journal of Cardiopulmonary Rehabilitation, 24(5), 313-316. 66 Appendix A: Cardiac Rehabilitation Referral Categories for the CRCARE study 1. Universal 2. Universal 3. Liaison 4. Usual Electronic Paper 1. St. Mary's 1. Hamilton 1. York Central 1. University Hospital Health Sciences Hospital Health Network- Toronto General 2. Trillium 2. Sunnybrook 2. Ottawa Heart Hospital Health Centre Health Sciences Institute (acute D6 coronary bypass 2. Sunnybrook 3. Sudbury floor) Health Sciences Regional 4. Ottawa Heart D3 Hospital Institute 3. Hotel-Dieu (percutaneous Hospital 3. William Osier coronary Health Centre intervention 4. Windsor floor) Regional Appendix B: Baseline Survey - Racial/Ethnic Background Question SECTION N: DEMOGRAPHICS 1. What do you consider to be your racial/ethnic background? Please also check 0 one (1) of the following boxes: • North American (e.g., Canadian, American) Q French (not French-Canadian) • British Isles (e.g., British, Scottish, Irish) • Western European (e.g., Austrian, Belgian, German, Swiss) • Northern European (e.g., Danish, Finnish) • Eastern European (e.g., Hungarian, Ukrainian, Polish, Czech) • Southern European (e.g., Greek, Italian, Spanish) • Jewish • African • Arab Q West Asian (e.g., Afghan, Armenian, Iranian) • South Asian (e.g., East Indian, Punjabi, Pakistani: Please specify: ) Q East or South East Asian (e.g., Chinese, Filipino, Japanese, Vietnamese, Thai, Laotian) • Oceania (e.g., Australian, New Zealander, Pacific Islanders) Q Caribbean Q Latin, Central, or South American • Aboriginal (e.g., Metis, Inuit) • Other (specify: ) • Multiple cultural backgrounds (specify: ) Appendix C: Interview Guide and Suggested Probes INTRODUCTION Thank you for agreeing to participate in this interview. The answers you provide may help us improve heart health services for South Asian cardiac patients. We would like to know about what kinds of health care services you were offered access to, to help your heart recovery. There are no right or wrong answers, we just want to know what you think. If there are any questions you feel uncomfortable answering, feel free to skip them. You can stop the interview anytime. What we discuss will be kept confidential. We would like to tape record this interview, and then translate and transcribe the interview to be analyzed in a computer program. Your name and any other identifying information will not be transcribed. The tape is only for my own reference. We will destroy the audiotape once the information is transcribed. Is it okay for me to tape record the interview? Do you have any questions before we begin? DEMOGRAPHICS 1. Where were you born? PROBE: If NOT born in Canada, how long ago did you come to Canada? 2. What religion do you practice? How religious are you? CR REFERRAL AWARENESS AND INTENTIONS TO PARTICIPATE 3. Have you heard of Cardiac Rehabilitation (CR)? • If yes, what have you heard about it, and how did you hear about it? PROBE to see if they have an accurate awareness of CR services 4. Do you know whether you were referred to CR while you were in the hospital for your cardiac condition? PROBES (for Q3&4): description of the program, positive/negative tone, discussion of the benefits, barriers, facilitators, family / shared health care decision making, self- esteem/efficacy, health beliefs, attitudes towards health care system, support during/after decision, knowledge of CR - friends, relatives that participated If YES, they were referred: • What type of discussions took place about CR with your health care providers? • Describe the referral process • Have you attended CR yet? Or did you sign up? (could be on a wait list) Why or why not (barriers)? 69 • If have not attended yet: What are your intentions in regards to attending CR? (Why or why not, barriers)? • What did you think of when making your decision to attend CR? • What were the most important factors that influenced your decision? • Will you continue attending CR? Why or why not? If NO, they were not referred or do not know whether they were referred • Did you ask your doctor/nurses about CR? • If so, tell me about the discussion. • Did you have ideas about what the program may be about? • Would you have gone if you knew about CR (intentions)? Why? Why not (barriers)? • What recommendations were made to you by doctors/nurses for ways to reduce your heart risk? PROBE: diet, physical activity, medications (cholesterol, blood pressure), stress, resuming activities, smoking cessation. • Did any doctors, nurses, or other health care providers describe services available to you at the hospital or in the community to help you with your heart recovery? • If yes, what were they? • If no, are you aware of any services that may be helpful to you? • Have you used any of these services yet? Or did you sign up? Why, why not? What factors influenced your decision to use these services? PROBE: CR, physiotherapy, dietitian BARRIERS TO CR ACCESS/UPTAKE 5. What do you think were the barriers that made it hard for you to access heart services (i.e. CR) to help your recovery, or to follow through on recommendations to improve your heart health? PROBE: language barriers, transportation, beliefs, level of understanding, terminology/medical jargon. Did you feel the health care worker was being realistic about your situation? Did you feel the health care worker was genuinely concerned (attitude: were they rushed/patient clear)? Were you encouraged to ask questions and participate in decisions? 6. Do you have any other thoughts or comments on the heart health care services you received, and/or how they can be improved? Or any thoughts on how being South Asian might affect your access to cardiac rehab? CONCLUSION Thank you for your time, it is greatly appreciated. This study may enable us to improve access to heart health care services, and ultimately improve heart health. 71 discusSnn with other medical professionals Appendix E: Personal Experiences One must acknowledge that when research is conducted, the researcher is not always a neutral observer. This was especially true during the different stages of my thesis research, given that it was a qualitative study I conducted. For instance, being of South Asian origin definitely had an impact on my research and in the way participants interacted with me. Specifically, because I am South Asian, participants may have been more willing to participate in interviews. Furthermore, participants were able to refer to cultural foods, items or practices, and I had an understanding of what they were speaking about. Although all of the interviews for this study were conducted in English, some participants did make references in the Punjabi language. In these interview transcripts, I was able to relay this information through explanation of terms in parentheses. Researchers of other ethnocultural backgrounds may have missed such cultural references. However, this could also be a limitation, as I may have missed certain cultural references, especially if participants assumed that I am knowledgeable about all cultural traditions. Another way in which my role as a researcher may have affected the research I conducted was my status as a younger female. As the majority of my sample was older males, some patients may have censored some of the information they relayed because of my age and sex. Furthermore, I was an individual who never personally met the majority of the individuals who I interviewed, and interviews were conducted over the telephone. Thus, there was little personal contact. As such, patients who I interviewed may have also 73 been somewhat reluctant to provide sensitive narratives because I was an unfamiliar person to them. The transcription of interviews is another way in which the researcher cannot always be neutral. For instance, there may be certain aspects of interviews that are given more attention or emphasis in the transcripts due to the researcher's interests. Also, it is difficult to relay intonation and emotion within a transcript. During the process of translating and transcribing interviews, I attempted to indicate when patients laughed, or paused by including such non-verbal communication in parentheses. Nevertheless, I recognize that such emotion is very difficult to be directly captured through words. 74