A Study on Community Knowledge, Beliefs and Attitudes on Leprosy in Ang Mo Kio, Singapore

A STUDY ON COMMUNITY KNOWLEDGE, BELIEFS AND ATTITUDES ON LEPROSY IN ANG MO KIO, SINGAPORE

PADMINI SUBRAMANIAM, MBBS.

A Thesis submitted for the Degree of Master of Science (Clinical Sciences)

Department of Community, Occupational & Family Medicine National University of Singapore

2003

Dedicated to the memory

of my father

Dr. N. Subramaniam, FRCS, FRCSE

ii Acknowledgements

This thesis is the product of ample guidance, support and encouragement from my supervisor, Associate Professor Wong Mee Lian (Department of Community, Occupational and Family Medicine). I am grateful to her for her time, effort and commitment. I also take this opportunity to thank Professor David Koh, Head, Department of Community, Occupational and Family Medicine for the support extended towards my candidature in the department.

My tenure as a graduate student was supported by the generous Exxon Mobil – National University of Singapore Postgraduate Medical Research Scholarship, for which I am very grateful. I am also obliged to the Faculty Graduate Program Committee of the Faculty of Medicine for the exemplary manner in which the Clinical Sciences Programme was coordinated and conducted. I continue to be indebted to the staff: academic, technical and administrative, of the Departments of Community, Occupational and Family Medicine and Dean’s Office, Faculty of Medicine for their assistance and warm cooperation over the years.

From the beginning, I have had the wise counsel and support of the staff of the National Skin Centre and the Singapore Leprosy Relief Association (SILRA). Their assistance was pivotal especially during the formative months of this study. My colleague and friend, Sharon Wee, has made an immeasurable contribution to shape my thesis, especially during the last few crucial months. H. S. Raghavendra Prasad, readily undertook the monumental task of publication of this thesis. I am yet to find a way to repay their efforts, patience and kindness. Chew Keng Lee, Jeremiah Joseph, Veena Rao and T. Jayabaskar have also helped me, in no small measure, to get through monotonous moments and made my stay in Singapore, a pleasant and unforgettable experience. Those whom I have not mentioned by name are not forgotten.

All this would never have been possible had it not been for the infinite patience, understanding and support of my family. Finally, I am eternally grateful to God for all this and much more.

iii Table of Contents

Page Dedication ii Acknowledgements iii Table of Contents iv List of Tables vii List of Figures x Abbreviations xi Summary xii

Chapter I Introduction 1 - 26

1.1 Leprosy 2 1.2 History of leprosy 8 1.3 Stigma of leprosy 10 1.4 Health education 15 1.5 The global situation 17 1.6 Global strategy for the elimination of leprosy 19 1.7 Global strategy beyond the elimination phase 21 1.8 Leprosy in Singapore 22

Chapter 2 Review of Literature 27 - 59

2.1 Community knowledge of leprosy 28 2.2 Beliefs and misconceptions about leprosy 32 2.3 Community attitudes towards leprosy 37 2.4 Measuring leprosy stigma 46 2.5 Community health practices 48 2.6 Effectiveness of interventions targeting knowledge and attitudes 51 2.7 Concluding remarks 56 2.8 Rationale for the study 56 2.9 Objectives 59

iv Chapter 3 Methodology 60 - 74

3.1 Study design 61 3.2 Place of study 61 3.3 Study population 62 3.4 Sampling 63 3.5 Data collection 64 3.6 Interviewers 67 3.7 Pilot study 67 3.8 Data processing and analysis 68 3.9 Study variables 69 3.10 Minimizing errors 73 3.11 Ethical issues 74

Chapter 4 Results 75 – 124

4.1 Descriptive Analysis 76 4.1.1 Socio-demographic variables 76 4.1.2 General information 80 4.1.3 Knowledge of leprosy 81 4.1.4 Misconceptions regarding leprosy 85 4.1.5 Attitudes towards leprosy patients 86

4.2 Statistical Analysis for Associations 91 4.2.1 Knowledge of leprosy by socio-demographic variables 91 4.2.2 Beliefs regarding leprosy by socio-demographic variables 95 4.2.3 Overall knowledge scores 98 4.2.4 Beliefs regarding the cause of leprosy by socio-demographic 100 variables 4.2.5 Attitudes towards persons affected by leprosy 101 4.2.6 Overall attitudes scores 106 4.2.7 Median attitude scores 108 4.2.8 Relationship between overall knowledge, age, education and 113 accommodation of the respondents with attitude score 4.2.9 Stigmatising attitudes towards leprosy. 114

v 4.3. Stratified Analysis 118 4.3.1 Stratified analysis by age group 118 4.4. Multiple Regression Analysis 122

Chapter 5 Discussion and Conclusions 125 - 151

5.1 Main findings 126 5.2 Limitations of the present study 127 5.3 Interpretation of findings 129 5.4 Conclusions 146 5.5 Recommendations 149

Chapter 6 References 152 - 165

Appendices I - X

Annexe I Questionnaire II – VII Annexe II Operational definitions VIII - X

vi List of Tables Page

1.1. The WHO multi-drug treatment regimens. 7

1.2. Factors contributing to leprosy stigma. 13

1.3. Cognitive dimensions in relation to characteristics of leprosy. 14

1.4. Prevalence of leprosy by WHO regions. 18

1.5. Incidence of leprosy in Singapore 1960 – 2001. 24

2.1. Community beliefs and misconceptions regarding leprosy. 35

2.2. Community knowledge and attitudes towards leprosy. 41

2.3. Knowledge, attitudes and practices among leprosy patients. 42

2.4. Knowledge, attitudes and practices among leprosy health care 45 providers.

2.5. Commonly used attitude and practice items used in surveys that 50 assessed community attitudes and practices grouped according to ICF domains.

2.6. Knowledge and attitudes following health education 55 interventions.

3.1. Correlation between the eight items in the attitude score. 72

3.2. Extracted item scores and the component matrix of attitude score. 73

4.1. Response rate of the sample population. 76

4.2. Distribution of citizenship, ethnicity, religion, gender, age and 77 marital status of the respondents.

4.3. Distribution of education, employment, marital status, housing 79 and income of the respondents.

4.4. The knowledge of the respondents on the symptoms of leprosy. 81

4.5. Distribution of respondents on the common misconceptions 85 regarding leprosy.

4.6. Distribution of the attitudes of the respondents towards an 86 unknown person, friend or family member affected by leprosy.

vii 4.7. Distribution of the attitudes of the respondents towards leprosy 90 patients.

4.8. Knowledge on symptoms of leprosy by the socio-demographic 92 variables of the respondents.

4.9. Specific knowledge of germs as the cause of leprosy by the socio- 93 demographic variables of the respondents.

4.10. Knowledge on treatment of leprosy by the socio-demographic 94 variables of the respondents.

4.11. Knowledge regarding spread of leprosy by the socio-demographic 95 variables of the respondents.

4.12. Knowledge on curability of leprosy by the socio-demographic 96 variables of the respondents.

4.13. Knowledge of deformities in leprosy by the socio-demographic 97 variables of the respondents.

4.14. Comparison of knowledge median scores by socio-demographic 99 characteristics of the respondents and prior acquaintance with a leprosy patient.

4.15. Respondent’s attitudes towards an unknown person, friend or 103 colleague or a family member with leprosy by socio-demographic variables.

4.16. Respondent’s attitudes towards an unknown person, friend or 105 colleague or a family member affected by leprosy by respondents’ beliefs.

4.17. Descriptive statistics of the attitude score. 107

4.18. Comparison of attitude median scores by socio-demographic 109 variables and acquaintance with a patient with leprosy.

4.19. Comparison of attitude median scores by the respondents beliefs 110 regarding the causes of leprosy.

4.20. Comparison of attitude median scores by the respondents beliefs 111 regarding the transmission of leprosy

4.21. Comparison of attitude median scores by misconceptions 112 regarding leprosy.

4.22. Correlation between knowledge, age, education, accommodation 113 of the respondents and attitudes scores.

viii

4.23. Prevalence of stigmatizing attitudes of the respondents by 115 – 117 combinations of misconceptions regarding leprosy.

4.24. Stratified analysis of stigmatising attitudes by age groups. 120 - 121

4.25. Relationship of socio demographic variables and mediating 123 variables to attitudes towards leprosy.

ix List of Figures

Page

1.1 Ridley- Jopling classification of leprosy. 4

4.1. Distribution of respondents who knew of or had seen a patient with leprosy. 80

4.2. Distribution of respondents on beliefs regarding the cause of leprosy among respondents. 82

4.3. Distribution of respondents on beliefs regarding the transmission of leprosy among respondents. 83

4.4. Knowledge of the respondents regarding the treatment of leprosy. 84

4.5. Distribution of respondents on the reasons stated for avoiding a patient with leprosy. 87

4.6. Distribution of respondents on the reasons stated for not avoiding a patient with leprosy. 88

4.7. Frequency distribution and normal curve of attitude score. 107

x Abbreviations

BB Mid-borderline leprosy

BCG Bacillus Calmette Guerin

BI Bacterial Index

BL Borderline lepromatous leprosy

BT Borderline tuberculoid leprosy

ENL Erythema nodosum leprosum

HDB Housing Development Board

I Indeterminate leprosy

ICF International Classification of Functioning, Disability and Health

KAP Knowledge, attitudes and practices

LEC Leprosy Elimination Campaign

LL Lepromatous leprosy

MB Multi bacillary leprosy

MDT Multi Drug Therapy

NSC National Skin Centre

PB Paucibacillary leprosy

SILRA Singapore Leprosy Relief Association

TT Tuberculoid leprosy

WHO World Health Organisation

xi Summary

Introduction: An important challenge in the post-elimination era of the World Health

Organization’s Leprosy Elimination Programme is the social integration of leprosy patients into the community since they often suffer rejection due to the stigma attached to leprosy. Community education would help alleviate the stigma attached to the disease and facilitate this process. Leprosy awareness campaigns have to be planned and tailored to suit the target audience based on an assessment of existing knowledge, beliefs and attitudes of the community. The current study assessed the community knowledge, beliefs and attitudes towards leprosy in Singapore, where the prevalence of leprosy is 0.1 cases / 100,000 population.

Methods: A cross sectional study was carried out on a sample of 400 adults, aged 18 years or older, among a multi-ethnic community in Ang Mo Kio constituency,

Singapore. An interviewer-administered structured questionnaire was used as the data collection instrument.

Results: Overall, 55.8 % of the respondents interviewed had moderate to high knowledge of leprosy. Although 65 % of the respondents attributed the cause of leprosy to germs, many of these respondents also held other multiple beliefs regarding the causation of the disease. A significant number of the respondents believed that leprosy spread easily (41.3 %), leprosy-related deformities were inevitable (48.5 %) and it was incurable (32.3 %). With increasing age of the respondents, the knowledge that leprosy was caused by germs also increased significantly (p < 0.05). Nonetheless, the commonest misconception that leprosy was hereditary was found to be less among the younger age group and among those who had had a higher level of education. More respondents were willing to accept a family member with leprosy (65.5 %), compared

xii to a friend (34.3 %) or an unknown person (19.8 %) affected by leprosy. However, the belief that leprosy spread easily was significantly associated with the non-acceptance of all three categories of persons affected by leprosy. Based on a scoring system devised by this study, 87.8 % of the respondents were found to have stigmatising attitudes towards leprosy. The misconceptions that leprosy spread easily, was incurable and caused inevitable deformities were most strongly associated with stigmatising attitudes. The association between misconceptions and stigmatising attitudes was stronger in the older (> 40 years) than younger (≤ 40 years) age group. The correct beliefs that leprosy was not transmitted by shaking hands or sharing personal items with a patient and an increased knowledge score were significantly correlated with a positive attitude. A better accommodation status of the respondents was correlated with negative attitudes.

Conclusions: An overall lack of knowledge regarding leprosy and prevalence of misconceptions regarding the cause, transmission and outcome of leprosy was identified among the respondents. Stigmatising attitudes towards leprosy patients were also present and found to be primarily associated with misconceptions regarding the spread of leprosy.

Recommendations: To facilitate the re-integration of persons cured of leprosy into the society, there is a need to educate the community in order to alleviate the stigma and misconceptions regarding leprosy and promote a positive change in attitude.

xiii

Introduction

Chapter 1

Introduction

LEPROSY

Leprosy is one of the oldest diseases known to man. However, it still continues to be a serious public health problem in the developing world. This is primarily because leprosy is a medical problem with grave social overtones since permanent and progressive disability and consequent psychological damage is a recognized sequale of untreated leprosy. Hence, leprosy, irrespective of the occurrence of deformities, often results in intense stigma and social discrimination of patients and their families, causing tremendous social problems not only to the affected individuals but also to their families and the community at large (WHO, 1996a).

1.1. LEPROSY

1.1.1. The cause and transmission of leprosy

Leprosy is a chronic granulomatous disease resulting from infection with the bacteria Mycobacterium leprae. This organism was demonstrated to be the causative agent of leprosy by G. Armauer Hansen of Norway in 1873 and is still referred to as

Hansen’s disease. M. leprae is an acid-fast, rod-shaped, gram-positive bacillus that is an obligate intracellular parasite which can be demonstrated in skin smears or biopsy sections in patients (Jacobson and Yoder, 1998). Humans are considered the main host and reservoir of the leprosy bacilli. Nonetheless, the mechanism by which leprosy is transmitted remains unresolved (Jacobson and Yoder, 1998). As a general rule, it is considered that the main mode of transmission is droplet transmission from multibacillary (MB) cases occurring as a consequence of prolonged close contact with an infected person (Jacobson and Yoder, 1998). Accordingly, the incidence of leprosy

Introduction has been reported to be higher in a family with a case of leprosy than in families with no cases (Guinto, 1978). The exact incubation period of leprosy is not known since many newly diagnosed cases have no known contact from whom they likely contracted the disease (Noordeen, 1994). Nonetheless, incubation periods ranging from less than one year to up to thirty years are reported, with an average incubation period ranging from 4 - 8 years (Noordeen, 1994).

1.1.2. Epidemic behaviour and contagiousness of leprosy

Leprosy is now found mainly in tropical and subtropical climatic areas, although it has occurred as much in the north temperate zones. Hence, there is no significant seasonal or geographical variation in the occurrence of leprosy. Leprosy is also more common among the poor in underdeveloped countries. The current school of thought ascribes leprosy to crowded living conditions, impoverished diet, inadequate medical care and improper sanitation facilities, although, little evidence for these associations has been documented. Moreover, there are no data that indicate any race- related susceptibility or resistance to leprosy or any particular relationship between specific occupations and leprosy (Jacobson and Yoder, 1998).

Leprosy has a relatively high infectivity but lower pathogenicity for most individuals and the majority of the population (~ 95 %) appear to be able to resist the infection with M. leprae and do not develop any signs and symptoms of leprosy

(Jacobson and Yoder, 1998). Therefore, epidemics, in the true sense of word, do not commonly occur in leprosy (Baumgart et al., 1993). It is hypothesized that a genetic defect, probably associated with the immune response gene, determines the susceptibility of an individual to leprosy and its mode of expression (Hastings, 1977).

Introduction

1.1.3. Clinical spectrum of leprosy

The wide spectrum of clinical and histological manifestations seen in patients infected with M. leprae can be attributed to the variability of the cellular immune response of the host to the organism. Hence, the clinical spectrum may vary from a single skin patch (single-lesion leprosy) that may heal spontaneously to widespread damage to nerves, bones and other vital organs. These two ‘poles’ of the disease are defined as tuberculoid (TT) and lepromatous (LL) leprosy although borderline cases which fall in-between the two extremes are not uncommon. The Ridley-Jopling immunological classification (Figure 1) (Ridley and Jopling, 1966) is now a generally accepted model that describes the clinical spectrum of leprosy.

TT BT BB BL LL

Contact with Indeterminate M.leprae leprosy (I) TT- Tuberculoid leprosy BT- Borderline-tuberculoid BB- Mid-borderline BL- Borderline-lepromatous No disease LL- Lepromatous leprosy

Figure 1.1. Ridley- Jopling classification of leprosy.

The earliest form of leprosy is usually, but not invariably, indeterminate leprosy (I) which presents as one or two hypo-pigmented or occasionally erythematous skin lesions that may also exhibit diminished sensation. Tuberculoid leprosy (TT) is characterized by few hypo-pigmented or erythematous sharply demarcated skin lesions

Introduction that have lost sweat glands, hair follicles and sensation. Nerve involvement may also be present with thickened and palpable nerves which sometimes result in anaesthesia or loss of motor function in the hand or foot (Griffin et al., 1999). Lepromatous leprosy (LL) is usually a generalized, extensive, symmetrical skin eruption that may involve the face as well as extremities. As the disease progresses, near-total body anaesthesia, clawing of hands or toes, foot drop and other motor dysfunction as well as disfigurement of the face giving rise to the classic leonine (lion-like) facies may be seen (Griffin et al., 1999; Jacobson and Yoder, 1998). However, borderline disease which occupies the broad, middle portion of the leprosy spectrum is most common and presents a varied clinical picture: tuberculoid-like (borderline tuberculoid (BT) or lepromatous-like (borderline lepromatous (BL) or mixed (mid-borderline (BB) leprosy

(Griffin et al., 1999).

1.1.4. Control and prevention of leprosy

The current strategy of leprosy control is focussed mainly on early case detection and treatment. Treatment with rifampicin almost completely kills all viable bacteria within a few days of treatment (WHO, 1998a), while a protracted multi-drug therapy (see below) prevents the emergence of drug resistant strains. Consequently, the person affected with leprosy is rapidly rendered non-infectious and hospitalisation is rarely required.

Community surveys on leprosy to detect new cases and to assess prevalence are primarily done by clinical examination for signs and symptoms of leprosy. While this may be satisfactory in communities where leprosy is widely prevalent, in countries where the disease is rare, household contact examination is the only kind of survey that

Introduction has any practical value (Jacobson and Yoder, 1998). Lepromin skin test1 is still a practical and economical indicator to assess the immune status of the individual with regard to M. leprae (WHO, 1998a), although this has been superseded by more direct and specific measures of immunity such as lymphocyte transformation test, antibody assays and polymerase chain reaction assays (Jacobson and Yoder, 1998).

1.1.5. Diagnosis of leprosy

A ‘case of leprosy’ is defined as a person having one or more of the following features, and who has yet to complete a full course of treatment (WHO, 1995): (1) hypo-pigmented or reddish skin lesion(s) with definite loss of sensation; (2) involvement of peripheral nerves, as demonstrated by definite thickening with loss of sensation; and (3) skin smear positive for acid fast bacilli. The isolation and the identification of the organism from a skin smear from active skin lesions in a patient is the most common test utilised for the confirmation of a diagnosis of leprosy (Jacobson and Yoder, 1998). The density of the bacilli is recorded logarithmically as the Bacterial

Index2 (BI). Patients are classified as having paucibacillary (PB) disease when no bacilli are demonstrated and multibacillary (MB) disease when bacilli are seen (WHO,

1987).

Skin smear positivity is also used by the WHO as an operational classification for chemotherapy as well as for control programmes (WHO, 1982). This classification defines MB cases as including LL, BL and BB cases in the Ridley-Jopling

1 Lepromin skin test – An extract sample of inactivated M. leprae is injected just under the skin and the injection site labelled. The site is examined on day 3 and day 28 for evidence of reaction. Little or no reaction indicates absence of leprosy or LL whereas abnormal reactions are positive for TL and BT leprosy. 2 Bacterial index (OIF, oil immersion field): 0 = No bacilli per 100 OIFs; 1+ = 1-10 bacilli per 100 OIFs; 2+ = 1-10 bacilli per 10 OIFs; 3+ = 1- <10 bacilli per OIF; 4+ = 10- <100 bacilli per OIF; 5+ = 100- <1000 bacilli per OIF; 6+ = ≥ 1000 bacilli per OIF.

Introduction classification and a BI of ≥ 2 at any site in the initial skin smears whereas PB leprosy included the I, TT and BT cases in the Ridley–Jopling classification and a BI of < 2 at all sites in initial skin smears. In the absence of skin smears, the following working classification (WHO, 1998a) is used to categorize the patients: PB single lesion leprosy (one skin lesion); PB leprosy (2-5 skin lesions) and MB leprosy (more than 5 skin lesions). Serologic and immunologic diagnostic methods have not been proven to be practical in the diagnosis of leprosy (Jacobson and Yoder, 1998).

1.1.6. Treatment of leprosy

In 1981, multi drug therapy (MDT) with dapsone, rifampicin and clofazimine was introduced for the treatment of leprosy (WHO, 1982). MDT has since proved to be highly effective in curing the disease and is the cornerstone in the leprosy elimination campaign. The regime of MDT is as follows:

Table 1.1. The WHO multi drug treatment regimens (WHO, 1982).

Pauci bacillary (PB) regimen Multi bacillary (MB) regimen

Duration: 6 months. Duration: 24 months.

Rifampicin: 600 mg monthly, supervised. Rifampicin: 600 mg monthly, supervised.

Dapsone: 100 mg daily, self-administered. Dapsone: 100 mg daily, self-administered.

Clofazimine: 300 mg monthly, supervised; 50 mg daily, self-administered.

The MDT has proved to be practical, effective and with minimal side effects and therefore, widely acceptable. Importantly, MDT has not produced drug resistant organisms so far and the reported relapse rate is only about 1% for either regimen

Introduction

(Pattyn, 1993). However, in addition to drug treatment, the management of leprosy entails a multi-disciplinary approach that includes physical therapy and orthopaedic care for leprosy-associated deformities as well as education and awareness programmes for the patient, family and the community in order to facilitate the social rehabilitation of the patient.

1.1.7. Prophylaxis and immunization for leprosy

Currently, the WHO does not recommend any form of chemoprophylaxis for the prevention of leprosy (WHO, 1994a). No specific anti-leprosy vaccine is yet available but the BCG (Bacillus-Calmette-Guerin) vaccine used against tuberculosis offers about 50 – 80 % protection against leprosy (Ponnighaus et al., 1992; Convit et al., 1993). Trials using BCG vaccines that are incorporated with heat-killed M. leprae bacilli are now underway, and if successful, it would conceivably be beneficial in areas where leprosy is highly endemic.

1.2. HISTORY OF LEPROSY

Leprosy is one of the oldest scourges known to mankind. It probably originated in India and the first authentic description of leprosy comes from there in the year 600

BC (McDougall and Yawalkar, 1996). Leprosy was described as an “eating disease” called Kushta, still the name for leprosy in Hindi. In China, leprosy was first described under the name “Da Feng” in Nei Jing, a medical classic written in the year 400 BC

(Skinses, 1964). Likewise, the earliest Japanese references of leprosy are also from the

4th century BC. The translation of the Hebrew originals of the Old Testament in 200

BC describes leprosy as “tsaraath” (Levictus, Chapter 13 and 14). Apart from the

Introduction description in ancient literature, the first direct evidence of leprosy with bone involvement was found in an Egyptian mummy of the 2nd century BC (McDougall and

Yawalkar, 1996). These reports clearly place the existence of leprosy to ancient times dating back as far as the year 600 BC.

While the origins of leprosy are established to be from the Far East, its spread through the continents over time is less clear. Leprosy was probably brought to the

Mediterranean region from India in 327 - 326 BC and onto Europe in the middle of the

16th century (McDougall and Yawalkar, 1996). It is likely that leprosy probably spread to the Americas from, both, Europe and Africa because of migration and the slave trade, respectively.

During its long history, leprosy wreaked havoc on humankind as a result of the disfigurement and disability it produced and therefore, the disease was much feared and stigmatised. Until the introduction of dapsone in the 1940’s there was no effective treatment for leprosy and infected individuals were isolated and segregated from the society. For instance, it is estimated that over 19,000 leprosaria existed all over Europe for the isolation of cases during the early 13th century. In some parts of the world, this approach to the management of leprosy continued until well into the 1980’s, even after the overwhelming success of MDT in curing leprosy (McDougall and Yawalkar,

1996). Today, leprosy is mostly found in developing countries, mainly in tropical and subtropical areas where it continues to be a serious public health problem.

Introduction

1.3. STIGMA OF LEPROSY

The term "stigma" embraces any mark or sign of perceived or inferred conditions of deviation from norm and is considered as representing a negative outcome to an unwanted effect (Jones et al., 1984).

Leprosy has long been described as a disease that destroys not only the body but also the soul; a disease that slowly turns a person into a ‘thing’ (Valencia, 1983).

Accordingly, leprosy stigma arose as an instinctive social reaction to what was perceived as a contagious, mutilating and incurable disease (Jopling, 1991). Goffman

(1986) defines stigma as an attribute that is deeply discrediting to the extent that the stigmatised individual is not accorded the respect, rights and regard of his peers; one who is disqualified from full social acceptance. Goffman (1986) also describes three main groups of stigmatised individuals. Firstly, those with physical deformities, secondly, those with blemishes of character, and thirdly, those with tribal stigma.

Applying Goffman’s definition to leprosy, one can see that all these three categories of stigmatisation are encompassed by one disease (Jopling, 1991): in the group with physical deformities are the visible deformities of a leprosy patient; in the group with blemished character is the belief that leprosy is a punishment for the sins of the individual; and in the group with tribal stigma is the fact that leprosy is looked down upon as the disease of poverty or of a person ‘of an inferior class’.

Stigma against leprosy patients affects all aspects of leprosy control (Bainson and Van Den Borne, 1998). Interventions aimed at solving the problem of stigma in leprosy are unlikely to succeed unless the various dimensions of the disease that

Introduction influence the process of stigmatisation are understood (Jones et al., 1984).

Understanding the factors contributing to the process of stigmatisation may reveal how the social devaluation of leprosy patients and adoption of negative behaviours towards them occurs. At present, data regarding the dynamics of leprosy stigma are scarce

(Bainson and Van Den Borne, 1998).

Although it is well known that persons affected by leprosy are shunned and become isolated within their communities, stigmatisation in leprosy is not limited to the affected persons and is often extended towards their families and friends and even towards those providing care for them (Kant, 1984; Ulrich et al., 1993; Kumaresan and

Maganu, 1994a). Goffman (1986) labels this as “courtesy stigma.” Leprosy stigma can be so intense that children affected by the disease are expelled from schools and persons affected by the disease are banished from their villages (De Stigter et al, 2000) and many even committed suicide (Jopling, 1991). Unfortunately, social stigmatisation of leprosy patients is often tolerated and even condoned in many societies and cultures and consequently, it has persisted up to modern times (Jopling, 1991).

The stigma of leprosy seems to be perpetuated by the fact that leprosy deforms and disables but seldom kills, so that those who have been crippled, live on, getting steadily worse, their deformities visible to the whole community. Furthermore, the physical and social scars of untreated leprosy often afflict individuals in their most productive stages of life and thereby limit or prevent that person from fulfilling his or her normal role in society. As a consequence, they may lose their economic independence as a result of losing their jobs, their physical independence as a result of

Introduction disabilities and their self esteem as a result of social isolation and in general, live a lower quality of life (Bainson and Van Den Borne, 1998).

The misconceptions that propagate leprosy stigma are related to the theories and folklore regarding the cause and transmission of the disease. Since leprosy has a long incubation period, the origin of the disease cannot be traced back to the source in many instances and because of this seemingly unknown aetiology, leprosy is believed to occur spontaneously or due to evil spirits or curses or as punishment from God. For instance, in Western Europe in the Middle ages, leprosy was considered by the society and the Church as unclean and divine punishment, and the sufferer denied civil rights, exiled from the society and compelled to live in Lazar houses outside the city wall

(Browne, 1975). In India, which has the highest incidence of leprosy in the world,

Hindus considered it as a divine punishment for evil acts committed in the previous life (Seaton and Collier, 1997). In Chinese folklore, it is believed that leprosy is sexually transmitted (Skinses, 1964). In Norway, where Hansen identified the leprosy bacilli, the medical profession once believed that leprosy was hereditary and promoted the idea of segregation for preventing procreation. Ironically, even the germ theory of leprosy proposed by Armauer Hanson perpetuated the need for segregation of leprosy patients on the basis that the disease was highly contagious (Jopling, 1991). Some important factors that contribute to the stigma towards leprosy are outlined in Table

1.2.

Introduction

Table 1.2. Factors contributing to leprosy stigma.

Factors contributing to leprosy stigma

1. Many communities in the world harbour discrediting beliefs and misconceptions

regarding the causation and transmission of leprosy.

2. Misconceptions regarding the “incurability” and “high infectiousness” of leprosy

contribute to stigma (Jopling, 1991).

3. Most leprosy patients tend to keep their diagnosis a secret, which leads to the wrong

belief that the disease is incurable and disfiguring (Jopling, 1991).

4. The medical profession in many endemic countries shares the community’s

misconceptions and looks upon leprosy as a disease apart and tends to avoid it

(Mutatkar, 1977; Mutatkar and Ranade, 1986; Jopling, 1991).

5. In the past, leprosy hospitals and colonies used for segregating patients have played a

role in promoting and sustaining stigma.

6. The Leprosy Acts that were enforced in many countries perpetuated the misconceptions

regarding the disease (Jopling, 1991).

7. The words “leprosy”, “leper”, or “leprous” are still used to imply something evil,

degrading or immoral by writers, journalists and politicians (Skinses and Evolve, 1970).

8. Fund raising agencies have, in the past, depicted the horrors of neglected leprosy that

have inadvertently encouraged stigma (Jopling, 1991).

9. Deformed beggars reinforce the association between poverty and leprosy

(Mutatkar, 1977; Mutatkar and Ranade, 1986).

Stigmatisation of leprosy can be readily related to the cognitive dimensions of stigma which describe how leprosy emerged as a socially degrading condition

(Bainson and Van Den Borne, 1998) (Table 1.3).

Introduction

Table 1.3. Cognitive dimensions in relation to characteristics of leprosy (adapted from Bainson and Van Den Borne, 1998).

Cognitive dimensions Characteristics of leprosy

Concealability Visible stigmatising marks on head, hands and feet.

Aesthetic qualities Presence of progressive deformities.

Course Although curable, leprosy is generally perceived as being incurable; chronic course Origin Many stigmatizing beliefs as to the origin of leprosy exist in communities and vary according to local culture. Peril Leprosy is generally perceived as being very contagious although it is only mildly contagious.

The deformities, chronic course and incurable nature attributed to leprosy are also characteristics seen in other chronic conditions such as diabetes and rheumatoid arthritis, which are, however, less plagued by stigma. This may perhaps be best explained by the work of Bainson and Van Den Borne (1998) who noted that the beliefs and misconceptions regarding a disease, rather than the actual course of the disease, were responsible for stigmatisation. Although many researchers have concluded that deformities (Kopparty et al., 1995; Myint et al., 1992), misconceptions regarding the origin the disease (De Stigter et al., 2000), beliefs on contagiousness and the incurable nature of the disease give rise to stigma in leprosy, few have specifically related these findings to stigma associated with leprosy. Furthermore, studies such as that by Van den Broek et al. (1998) which found that unwillingness to shake hands and to share food with leprosy patients were significantly associated with the belief that leprosy is an infectious disease raise a pertinent issue as to whether a single factor or a multitude of issues affect respondents' behaviour towards leprosy. Clearly, the underlying causes for stigma in leprosy need to be evaluated further.

Introduction

A study by Gussow and Tracy (1970) in the United States found that although the respondents identified leprosy as one of the top ten serious diseases, it was viewed with less apprehension than diseases like cancer and mental illness. The authors conclude that the lack of familiarity due to the rarity of leprosy in the USA led to the people not seeing it as a threat. In such a situation, the integration of those previously affected by leprosy and the few current patients will be a relatively easy task.

Moreover, if the prevalence and familiarity of the society to a disease determined community attitudes towards that disease, it will be interesting to explore the social attitudes in a community where leprosy is no longer a public health problem.

1.4. HEALTH EDUCATION

The problem with leprosy is not what the disease is, but what the people believe it to be (Jopling, 1991). Hence, stigma against leprosy seriously hinders all aspects of leprosy control. In a society which discriminates against leprosy sufferers, patients would conceal their condition and not seek or adhere to the treatment for fear of or as a result of social rejection. Consequently, case detection is hindered resulting in permanent deformities. In addition, the risk of transmission in the community also increases as the infection pool is maintained longer than necessary (WHO, 1996b).

Stigma attached to leprosy stems from or is reinforced by socio-cultural beliefs of the community regarding the disease, which are often unfounded and lack scientific rationale. Nonetheless, misconceptions once formed are difficult to dispel and if any progress is to be made in reducing the stigma associated with leprosy, educating the community about leprosy is of paramount importance.

Introduction

Health education is a communication activity with an aim of attaining positive health and preventing or decreasing the ill health by influencing the beliefs, attitudes and behaviour of a person or community (ILEP, 1998). Positive health in leprosy can only be achieved if the persons afflicted with leprosy are accepted by their communities and experience a satisfactory quality of life equal to that of their peers.

Clearly therefore, health education activities have a crucial role to play in leprosy control programmes and demand equal attention and resources as multi-drug therapy.

The primary objectives of leprosy education interventions aimed at the community or grass root level are to inform the community about: (1) the availability of free and effective treatment, counter the stigma and promote integration of affected persons and their families; and (2) early signs and symptoms of leprosy and the treatment available in the area so that new cases are detected by voluntary presentation of suspected cases in the early phases of the diseases. In addition, these efforts should be sustained and ensure a continuous repetition of health education programmes over a long period of time, using all effective media to reach the community (ILEP, 1998).

Communication campaigns differentially impact diverse social groups

(Krishnatray and Melkote, 1998). Successful health education can only be achieved by integrating the socio-cultural beliefs prevalent in the target population with scientific rationale. Equally importantly, a multi-disciplinary approach to health education that involves the engagement of healthcare workers, primary care workers, traditional practitioners, community and religious leaders as well as policy makers in all stages of the planning and delivery of health messages will ensure accuracy, better impact, continuity of the programme as well as wider acceptance of the intended health

Introduction message. Mass media campaigns, community mobilisation events and the active involvement of local communities in leprosy awareness activities have been highly successful in detecting new cases and encouraging people to seek and comply with treatment. Ultimately, a sustained, well tailored and attractive health education programme which arouses the interest of the community and leaves a reservoir of knowledge behind will lead to a positive change in community attitudes towards leprosy facilitating the social reintegration of patients (Nash, 1999).

1.5. THE GLOBAL SITUATION

Over the past 35 years, the prevalence of leprosy in the world increased from

8.4 cases per 10,000 population in 1966 to a peak of 12 cases per 10,000 in 1985. Prior to the adoption of the resolution in 1985 to attain the elimination goal by the year

2000, there were 5.4 million registered cases of leprosy. Since then, there has been steady decline in cases with this number dropping to 1.7 million by 1994 (WHO,

1994b). In early 2000, the global prevalence of leprosy had reduced significantly by

89 % to less than 1 case per 10,000 population (WHO, 2002a), highlighting the tremendous success of the WHO elimination programme and even hinting at the possibility of total eradication of leprosy. At the end of 2000 (Table 1.4), the number of registered leprosy patients in the world was reported to be 597,232 with 719,330 new cases detected during the last year of reporting (WHO, 2002a). It was then declared that, overall, among 122 countries considered endemic in 1985, 107 countries had reached the elimination goal. Nonetheless, leprosy still remains a public health problem in 15 countries, situated mainly in the inter-tropical belt, with the highest prevalence rates observed in Asia, Africa and South America.

Introduction

Table 1.4. Prevalence of leprosy by WHO regions (WHO, 2002a).

WHO region Registered cases (rate / 10,000) New cases (rate / 100,000)

Africa 53 694 (0.9) 54 602 (8.6)

Americas 85 996 (1.0) 44 786 (5.5)

South East Asia 432 715 (2.9) 606 703 (40.2)

Eastern Mediterranean 8 525 (0.2) 5 565 (1.1)

Western pacific 11 105 (0.1) 7 563 (0.4)

Europe 197 (0.0) 111 (0.0)

Total 597 232 (1.0) 719 330 (11.9)

Today, the highest burden of leprosy is concentrated mainly in India, Brazil,

Myanmar, Madagascar, Nepal and Mozambique. These countries account for about 83

% of the prevalence worldwide (WHO, 2002a). Furthermore, nearly three quarters of the world’s registered leprosy patients are in South-East Asia with India, Indonesia,

Nepal and Myanmar accounting for 70 % of the cases in the region (WHO, 1998b). Of the top six countries3 where leprosy is endemic, three are in Southeast Asia with India alone representing 64 % of the prevalence and 78 % of new cases detected worldwide

(WHO, 2002b).

Africa is the second most affected region in terms of detection of new cases of leprosy (Table 1.4) and has pockets of population in difficult-to-reach areas (WHO,

1998b) posing a considerable challenge to the task of elimination. Madagascar has the highest prevalence rate in the world with 5.4 cases per 10,000 population and in

Mozambique, 14 % of all registered cases have grade 2 disabilities, which is the highest in the world. Leprosy is also common in central and south America, with

3 Top endemic countries (in diminishing order): India, Myanmar, Madagascar, Nepal, Mozambique.

Introduction

Brazil accounting for over 80 % of the cases in that continent. Records also show that about 150 new cases are diagnosed in the USA every year (McDougall and Yawalkar,

1996). In Central and Eastern Europe, sporadic cases are still reported (WHO, 1998b).

1.6. GLOBAL STRATEGY FOR THE ELIMINATION OF LEPROSY

In 1991, the World Health Assembly and its member States adopted a resolution, setting a goal of eliminating leprosy as a public health problem by the year

2000. “Elimination” was defined as achieving a prevalence less than 1 case per 10,000 population (WHO, 1998a). Leprosy elimination deemed to be a feasible target because of a confluences of four highly favourable factors (WHO, 1996b): an epidemiological opportunity (leprosy is on the retreat in many parts of the world), a technological opportunity (MDT is effective in curing the disease), a political opportunity (strong national commitment in all leprosy endemic countries) and a resource opportunity

(many donor agencies are willing to fund the leprosy elimination campaign). The main focus of the leprosy elimination campaign (LEC) was to: (1) increase community awareness and participation; (2) improve the capacity of general health workers in diagnosis and treatment; and (3) detect cases that have remained undetected in the community and cure them by providing free access to MDT (WHO, 2002b).

In 1994, the Heads of States of many countries, partner organisations and the

WHO reaffirmed their commitment to leprosy elimination and formulated a global strategy. The global strategy drawn up in 1994 focuses on the implementation of MDT together with intensive case-detection, while emphasizing the need for public awareness at the community level to ensure early case detection. Programme

Introduction monitoring and evaluation as well as epidemiological surveillance are also important elements of the strategy. Although not directly related to the elimination goal, disability prevention and rehabilitation are other vital aspects of the plan of action. In addition, political commitment of the policy makers, donor non governmental organisations and community health volunteers are essential prerequisites for the success of the global elimination strategy. Since 1995, national programmes in all endemic countries have been implementing the LEC with the aim of intensifying elimination activities at the grass-root level (WHO, 1998b).

By 1998, MDT coverage had been increased to over 97 % worldwide and currently, the provision of MDT for the difficult-to-reach population in remote areas and those living under difficult conditions has become the priority (WHO, 1998b). Due to the uneven distribution of leprosy within a country, it is possible to have significant endemicity in some areas even though the elimination target has been achieved at national level. It is therefore important to focus on elimination activities at the most peripheral level and plan for elimination at the intermediate (provincial or state) level

(WHO, 1998b). The overall target set in 1991 for the elimination of leprosy as a public health problem has largely been attained within the stipulated time-framework.

Under the Global Alliance for Elimination of Leprosy, the remaining countries with high leprosy rates plan to eliminate leprosy by the new deadline of 2005 (WHO,

2001a).

Introduction

1.7. GLOBAL STRATEGY BEYOND THE ELIMINATION PHASE

The success achieved in leprosy elimination at the global level needs to be reproduced at every national level since a few countries still need to attain the elimination target. Therefore, a considerable challenge lies ahead for the Leprosy

Elimination Programme to reduce the disease burden in the remaining endemic countries and bringing leprosy services closer to all communities that require them.

Even so, leprosy cases will continue to appear, in smaller numbers, in the “post- elimination” era because of infection acquired earlier and the low level of transmission in endemic communities. In the past fifty years, medical advances have played a lead role in reducing the stigma of the disease, but in the next fifty years, it will take similar social and economic advances to further diminish it (First, 2000). Hence, the problem of leprosy and leprosy related disabilities will continue to exist far beyond the turn of the century (Feenstra, 1994). The achievements made through anti-leprosy activities need to be sustained for decades to come, with constant vigilance and surveillance to monitor and deal with any resurgence of the disease (WHO, 1998a; Feenstra, 1994).

Self-reporting is the most appropriate method for case detection under low endemic conditions (Lechat, 1989). In this regard, increasing community awareness about leprosy and its curability by means of health education is vital to ensure self- referral for diagnosis and treatment (WHO, 1998a). Moreover, with low endemicity, cost-effectiveness will be a major criterion for the sustainability of services. The integration of vertical leprosy services into the main stream general health service will be a suitable solution as the latter has a wider coverage and is permanently accessible and more acceptable to the people (Feenstra, 1994). Apart from this, there are large

Introduction numbers of patients with leprosy-related disabilities who will continue to need various services from the control programme if they are to be rehabilitated and to maintain their ability to work.

It now appears that, in the long run, even the complete eradication of leprosy may be feasible as a result of a combination of various factors, including the current elimination strategy of early diagnosis and treatment, socio-economic development and BCG vaccination (Feenstra, 1994). A variety of actions are recommended if true elimination of leprosy is ever to be achieved. These include practical and sensitive diagnostic tests for diagnosis of leprosy that can be used under field conditions, shorter term drug therapy to ensure compliance, highly effective vaccine against leprosy to be used in endemic areas as well as cost effective leprosy control services (Jacobson and

Yoder, 1998). Equally importantly, minimizing the stigma of leprosy will also be vital for achieving total success in leprosy elimination.

1.8. LEPROSY IN SINGAPORE

Leprosy was introduced to Singapore by early immigrants from endemic countries. In the early days, leprosy sufferers posed considerable medical and social problems and were segregated in camps, a practice that continued until the late seventies (Tan, 1987). Leprosy became a notifiable disease in 1951, and the Leprosy

Ordinance of 1955 provided legal backing to control the disease by mandatory isolation and treatment of cases. In 1976, the legislation for the control of leprosy was modified and included in the Infectious Diseases Act of 1976. Since then, uncomplicated new patients have been treated as outpatients (Tan, 1987).

Introduction

During the course of 1995 to 1996, an outreach subcommittee of Singapore

Leprosy Relief Association (SILRA) looked into the needs and problems of leprosy patients living in the community as most efforts until then had been focussed on the residents of the SILRA home and little was known about the patients outside the home.

It was found that the majority of the patients also suffered from psycho-social problems as a consequence of their illness. This investigation revealed the importance of addressing the needs and problems of Leprosy patients in the wider community and to plan programmes to meet their requirements (SILRA, 1996b)

The incidence of leprosy among the residents of Singapore has been declining over the past three decades from an incidence rate of 21.3 cases per 100,000 population in 1960 to 0.1 cases per 100,000 population in 2002 (Table 4)

(Epidemiological News Bulletin, 2003). The latest statistics show that only three resident cases of leprosy were notified in the year 2002 and among them there were one male (60 – 69 year age group) and two females (50 - 69 year age group). Of the cases notified, one had BL, and two had BT. There was no family history of leprosy among the cases and none of the household contacts traced had leprosy

(Epidemiological News Bulletin, 2003). However, the number of notified cases of leprosy was greater than the number of resident cases due to cases imported from outside of Singapore, mainly from Southeast Asia. In the year 2002, of the total of 11 cases of leprosy notified, eight cases were imported. The contribution on non-residents to the total number of cases increased from 21% in 2001 to 73% in 2002

(Epidemiological News Bulletin, 2003). Although most communicable diseases in

Singapore have been brought under control or eliminated, an increasing proportion of the reported cases were imported (Goh, 1984). This clearly shows that Singapore,

Introduction being a hub in the South Asian region, is faced with the problem of an external source of introduction of communicable diseases.

Table 1.5. Incidence of leprosy in Singapore 1960 – 2001 (Epidemiological News Bulletin, 2001; 2002; 2003).

Year Number of resident cases Incidence rate / 100,000

1960 351 21.3 1970 153 7.4 1980 45 2.0 1990 24 0.9 1991 13 0.5 1992 17 0.6 1993 15 0.5 1994 14 0.5 1995 22 0.7 1996 13 0.4 1997 10 0.3 1998 07 0.2 1999 14 0.4 2000 05 0.2 2001 11 0.3 2002 03 0.1

1.8.1. The National Leprosy Programme

The National Leprosy Programme of Singapore is a comprehensive campaign that encompasses several curative and preventive aspects of leprosy control

(Epidemiological News Bulletin, 1999). These include:

(1) Treatment of cases: The National Skin Centre (NSC) is the tertiary referral

institution for the investigation, treatment and follow-up of all active leprosy

cases.

(2) Contact tracing: The immediate family members and close contacts of an index

case are traced, medically examined and followed up at the NSC for a period of 5

years after the index case becomes smear positive.

Introduction

(3) Surveillance: Surveillance of leprosy is maintained through a comprehensive

notification system as well as the leprosy register which allows close monitoring

to ensure proper treatment and follow up of cases.

(4) Legislation: The legislation for the notification of suspected or confirmed cases of

leprosy is provided for under the infectious disease act of Singapore.

(5) Health education: Leprosy is included in the undergraduate and postgraduate

medical teaching and training curriculum. In addition, continuing medical

education programmes are conducted for medical practitioners to increase

awareness as well as to provide updates about the disease. Persons diagnosed with

leprosy are counselled and educated by trained nurses and their family members

and contacts are taught to recognise early symptoms of leprosy and to seek

treatment. The Ministry of Health works closely with the Singapore Leprosy

Relief Association (SILRA), a community based organisation, in promoting

awareness of leprosy among general public.

(6) Singapore Leprosy Relief Association (SILRA): SILRA was formed in 1971. The

objectives of SILRA are to promote, aid and coordinate the welfare and relief of

persons suffering from leprosy. It runs the SILRA home and provides aid and

rehabilitative services to its inmates to learn to adjust to their disabilities, learn

new skills and eventually become self-supporting members of the community

(SILRA, 1984). In addition, SILRA also offers psychotherapy to help patients

restore their self-confidence and self-respect and to motivate them to seek

employment and to adapt to any prejudices that they may face in the society.

(Goh, 1983).

(7) Community support: SILRA provides community support to persons affected by

leprosy through the SILRA home, which mainly caters to patients without family

Introduction support. An effort is also taken to look into the needs of the ex-leprosy patients who live on their own. SILRA is also actively involved in the education of the public through public forums and distribution of educational pamphlets as well as features in television and radio programmes and newspapers (SILRA, 1996a).

Review of Literature

Chapter 2

Review of Literature

KNOWLEDGE, ATTITUDES AND PRACTICES ON LEPROSY

Culturally determined beliefs and misconceptions regarding leprosy exist in almost all communities (Table 2.1). These often arouse strong negative attitudes towards leprosy. Persons affected by leprosy, themselves part of this community, may also share these misconceptions and fear the social consequences and as a result, impose self-isolation. Ironically, the community beliefs regarding leprosy may also instil similar negative feelings among health care providers, seriously compromising the effectiveness of case detection and treatment. Clearly therefore, studies which explore the community knowledge, beliefs, attitudes and practices provide deep insight and useful information for planning and conducting culture-specific health education campaigns which are an integral part of any leprosy control programme. For any health education effort to succeed, the people’s perception of the disease, their beliefs and cultural practices have to be taken into consideration as these have tremendous influence on their acceptance of new ideas (Chen and Sim, 1986).

2.1. COMMUNITY KNOWLEDGE OF LEPROSY

South Asia has the largest population of leprosy sufferers in the world, with

India alone accounting for about 64 % of the cases in the region (WHO, 2000).

Overall, studies have found that the community knowledge of leprosy in India was poor. For instance, a study in India (Shetty et al., 1985) revealed that just 15 % of the community were aware of the early signs of leprosy and very few (7 %) knew that leprosy was caused by germs. The spread of the disease was rightly attributed to prolonged close contact by only 19 % of the community respondents. Raju and

Review of Literature

Kopparty’s study (1995) among rural populations in India found that 35.7 – 49.7% of the respondents had high overall knowledge regarding leprosy, based on a scoring system devised by that study.

The majority of these studies in India were carried out among the illiterate population and mostly reflected the knowledge of those with little or no education.

However, a recent study carried out among teachers and students in India (Rajaratnam et al., 1999) found that the knowledge among both groups was variable. While only

23.4 % of the teachers as compared to 57.4 % of the students knew that leprosy was due to germs, more teachers (80 %) than students (43 %) knew about the skin patches of leprosy. Nonetheless, overall, better knowledge regarding leprosy was seen in this study when compared to a similar study conducted 18 years earlier in India (Gershon et al., 1981) which found that only 21.7 % of the teachers knew about the leprosy skin patches and a mere 7 % believed germs to be the cause of disease. Another study by

Kumar et al. (1983) compared 955 community members from rural, urban slum and urban areas in Tamil Nadu, India and found that only 46 % and 5 % of the respondents, respectively, were aware of the skin patches of leprosy and anaesthesia on the patch. Moreover, 81 % and 57 % of the respondents, respectively, were unaware of or held superstitious ideas about the causation and the spread of leprosy. However, surprisingly, it was found that the slum areas had better overall knowledge of leprosy in spite of high literacy rate prevalent among the urban population (Kumar et al.,

1983). Likewise, a study in Myanmar (Myint et al., 1992) found that members of a rural community had slightly better knowledge regarding the cause of leprosy (92.5 %) when compared to their counterparts in a peri-urban society (85.7 %). This data

Review of Literature suggests that a higher level of education does not necessarily give rise to better awareness of leprosy.

Elsewhere in Asia, in one of the cities with the highest number of leprosy cases in Philippines (Gerochi, 1986), it was found that even though 94 % of the household heads interviewed believed in germs as the cause of disease, a variable number (11 -

87 %) also held superstitious beliefs regarding the causation of leprosy. A low level of knowledge on the causation of leprosy was also seen among the respondents representing five ethnic groups in Malaysia, with as little as 1.5 % - 12.8 % attributing it to germs (Chen, 1986). Similarly, a study carried out to assess the KAP between two ethnic groups in North Western Botswana found no difference in knowledge regarding leprosy between the ethnic groups or among the males and females (Kumaresan and

Maganu, 1994a). In contrast a community based study by Crook et al., (1991) in India reported that women had lower awareness of leprosy than men. Furthermore, 59 % of all respondents did not know the cause of leprosy. Many studies discussed above fail to substantiate their preliminary analysis with further statistical analysis to identify factors associated with low knowledge of the disease. These findings would be useful in planning and selecting the target audience for a successful community health education campaign.

An adequate knowledge of leprosy plays a large part in determining the community’s health-seeking behaviour. The lack of knowledge of leprosy among leprosy patients in India was highlighted in a study (Pal and Girdhar, 1985) which revealed that, overall, only 8.5 % knew the cause of the disease. However, the more literate urban patients (36 %) had better knowledge regarding the transmission of

Review of Literature leprosy than their rural counterparts (28 %). Another study in India also showed that the literate and younger age groups had better awareness of the disease (Raj et al.,

1981). Studies in Tanzania have found a higher educational level among patients to be associated with good knowledge regarding leprosy (Van den Broek et al., 1998). A low level of knowledge on the causation of leprosy among patients has also been shown by studies in various countries including Indonesia (Elissen, 1991), Pakistan

(Mull et al., 1989) and Nigeria (Nwosu and Nwosu, 1997; Van De Weg et al., 1998).

However, some comparative studies carried out between the leprosy patients and the general community suggest that persons affected by leprosy are likely to have better knowledge about leprosy than the general community. A study in rural South India found that 42 % of the patients, compared to 15 % of the community, were aware of early signs of leprosy and more patients (22 %) than the members of the community

(7 %) knew that leprosy was caused by germs (Shetty et al., 1985). Likewise, better awareness among patients was also seen in a study in Botswana that showed that 59 % had adequate knowledge regarding cause of leprosy (Kumaresan and Magnu, 1994a).

The knowledge and attitudes of healthcare workers have a strong bearing on the success or failure of leprosy control programmes. Inadequate knowledge and skill on the part of medical staff may result in the failure to detect cases early which can seriously compromise the late phase of the LEC. A study conducted among the general heath staff in China found that the majority (91 %) of doctors other than dermatologists could not recognize early signs of leprosy and only 38 % of dermatologists were updated about MDT (Chen et al., 2000). This lack of knowledge on leprosy among health care workers was also observed in studies carried out in India

(Ramanathan and Ramu, 1986; Uplekar and Cash, 1991). A study among general

Review of Literature practitioners in India found that, overall, less than 8 % of the doctors gave correct answers to key questions on all aspects of leprosy except those specifically related to the diagnosis of leprosy where 76 – 88 % of the practitioners were found to be adequately knowledgeable (Uplekar and Cash, 1991). Likewise, studies among nurses in Nigeria (Awofeso, 1992) and the Philippines (Gerochi, 1986) also found that the overall knowledge on leprosy to be poor.

2.2. BELIEFS AND MISCONCEPTIONS ABOUT LEPROSY1

Communities over wide geographical and cultural backgrounds around the world harbour false beliefs and misconceptions regarding the cause and transmission of leprosy (Table 2.1). Even though scientific knowledge and medical treatment have made advances in curing the disease and minimizing infectivity, these beliefs have persisted over the decades, nurturing the negative attitudes and the stigma attached to the disease. A study conducted in Malaysia among five major ethnic groups found that the Chinese held the most misconceptions, whereas the Malays had the least misconceptions regarding leprosy (Chen, 1986). Most Chinese believed that sexual relations with prostitutes (41.2 %) and heredity (32.5 %) caused leprosy whereas the

Iban community believed that heredity (41.8%) was the predominant cause. Other ethnic groups including the Malays (53.5 % to 76 %) were ignorant of the cause of leprosy. This study highlights the existence of different beliefs among the various ethnicities within a country. Studies carried out in India, also revealed that false beliefs and misconceptions were widespread (Ramu et al., 1975; Shetty et al., 1985; Pal and

1 “To understand leprosy from the patient’s (and community’s) point of view, it is important to examine the peculiar and largely negative socio-cultural beliefs that exist about it and their influence, if any, on patient’s perception” Awofeso, 1995.

Review of Literature

Girdhar, 1985; Rajaratnam et al., 1999). The study by Ramu et al. (1975) revealed that most respondents were of the opinion that leprosy was hereditary (80 %) and could also be caused by the “malefic influence of planets and stars” (80 %) while 44 % believed it to be a venereal disease and 64 % thought it was contagious. Pal and

Girdhar (1985) also found 91.5 % of leprosy patients in their study believed that past sins, the curse of God and ill fate were the reasons for their affliction. A study among schoolteachers in India revealed that up to 23.4 % of the teachers also had misconceptions about leprosy and attributed the disease to insect bites and immoral conduct (Rajaratnam et al., 1999).

Leprosy is referred to as ‘ngara’ or ‘lepero’ in Botswana implying an association with “bad blood” (Kumaresan and Maganu, 1994a) and as ‘qumtina’ in

Ethiopia denoting the “state of amputation or mutilation” (Tekle-Haimanot et al.,

1992). Accordingly, a study in Botswana showed that 19 % of the respondents believed leprosy to be due to “bad blood” (Kumaresan and Maganu, 1994a), a concept that is also associated with other diseases such as syphilis (Krause, 1991). In Ethiopia

(Tekle-Haimanot et al., 1992), a significant number of people believed that leprosy was hereditary (48 %) and contagious (53 %). The societal beliefs on the causation of leprosy were also shared by the leprosy patients in Africa. Most patients in Ethiopia

(84 %) believed that leprosy was hereditary (Bekri et al., 1998) and in Nigeria, 58 % attributed leprosy to the ingestion of certain foods, witchcraft and evil spirits (Van De

Weg et al., 1998).

It has also been found that even though some communities were aware that leprosy was caused by bacteria, they still had misconceptions about the disease. For

Review of Literature instance, a study in Myanmar (Myint et al., 1992) showed that while most (81 -

92.5 %) respondents knew the cause of leprosy to be germs, they were also of the belief that it could be caused by eating certain foods. Likewise, in the Philippines, although most (94 %) respondents knew that germs caused leprosy, many also believed it to be related to blood (87 %), inherited (62 %), God given (50 %) or caused by sex with prostitutes (51 %). In addition, most were also of the opinion that skin-to- skin contact (94 %) would result in transmission of the disease (Gerochi, 1986). These results were corroborated by another study in Philippines (Valencia, 1983) which found that although a majority (88.4 %) of community health care providers believed that leprosy was caused by bacteria, 70 % also believed it to be highly contagious and

11.6 % held beliefs that “unclean blood” and witchcraft were responsible for the disease.

The widely held misconceptions regarding leprosy are that it is contagious, incurable and will inevitably lead to deformities and disfigurement. For instance, in

Myanmar, most patients (85 %) perceived deformities in leprosy to be inevitable

(Myint et al., 1992) whereas in Ethiopia, over 75 % of patients believed that the loss of a body part or deformities was the first sign of leprosy (Bekri et al., 1998). In Nigeria,

67 % of the nursing students who took part in a survey said that the commonest and inevitable presentation in leprosy was deformed limbs (Awofeso, 1992). However, studies in India have revealed that about 50 – 60 % of the community respondents believed that leprosy could be cured (Ramu et al., 1975; Shetty et al., 1985; Seshu

Babu et al., 1988). Likewise, in Ethiopia about 55 % of the respondents (Tekle-

Haimanot et al., 1992) and in Urban Guyana, 39 % of the respondents (Cook, 1982) believed that leprosy was curable. In contrast, the majority of respondents in Malaysia

Review of Literature

(96.6 % of the Iban community and 99 % of the Chinese community) believed that leprosy could be cured (Chen, 1986). Studies among leprosy patients in Nigeria

(Reddy et al., 1985) as well as in Indonesia (Elissen, 1991) have all found that over 80

% of patients believed in the curable nature of leprosy. In contrast, in Ethiopia only 19

% believed that leprosy was curable, possibly because they associated a cure from leprosy to be synonymous with a cure from leprosy related disabilities (Bekri et al.,

1998).

A post intervention-comparative study in Tanzania, (Van den Broek et al.,

1998) which explored the causes of stigmatising beliefs about contracting leprosy showed them to be associated with knowledge of infectiousness, a lack of primary education and female gender. Overall, these studies reveal that the misconceptions regarding leprosy are universal and seem to differ due to societal, cultural and religious influences. Although evidence is presented as to the presence of misconceptions few studies have explored the underlying factors associated with the misconceptions.

Review of Literature

Table 2.1. Community beliefs and misconceptions regarding leprosy.

Country Study design and sample Findings

India Cross sectional comparative Community vs. patients: (Shetty et al., 1985) study among 198 leprosy is contagious- 54% vs. 41% leprosy community members from 2 is curable – 60% vs. 86% deformities and rural areas and 105 patients disabilities are inevitable - 64% vs. 76% attending a leprosy clinic.

India Cross sectional study among Teachers vs. students: (Rajaratnam et al., 1999) 30 teachers and 120 Leprosy is transmitted by insects – 6.6% vs. students. 14.2% Leprosy can be caused by immoral conduct- 23.4% vs. 14.2%

Botswana Cross sectional study among Leprosy is due to bad blood – 19% leprosy (Kumaresan and Maganu, 356 households in a rural can be caused by certain foods 1994a) community.

Ethiopia Comparative study of Leprosy is hereditary- 48% (Tekle-Haimanot et al., leprosy and epilepsy among Leprosy is contagious – 53% 1992) a sample of 1546 rural population.

Nepal 200 family members from 5 Leprosy is caused by germs and it is (De Stigter et al., 2000) communities. contagious- 64% Leprosy is due to curse of God-9%

Malaysia Cross sectional study on a Chinese had severe misconceptions (Chen, 1986) sample of 504 members compared to other ethnic groups from five major ethnic Chinese: leprosy is due to sex with groups. prostitutes- 41.2%, inheritance -32.5%, foods – 10.3%, germs/dirty blood/ hot air-5 % Iban community: inheritance –41.8% dirty blood -17.7% Other causes reported in the study are that leprosy is due to certain foods, casual contact with a leprosy patient, evil spirits, curse and local charms

Myanmar Matched case control study Leprosy can be caused by taboo food (Myint et al., 1992) of 243 patients and Rural vs. urban community 68.4% vs. 75.4%; community members in Rural vs. urban patients: 64% vs. 66.4%; rural and peri-urban areas.

Philippines Random sample of 100 Leprosy can be caused by blood predilection (Gerochi, 1986) household heads and 70 (94%), inheritance (62%) sex with prostitutes student nurses. (51%) God’s will, spontaneous food and evil spirits (11-58%). Leprosy can be transmitted by having sex with prostitutes- 54%; skin to skin contact - 94%; sleeping or living together-90-93%; sharing toilet, clothes etc- 80-89%.

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2.3. COMMUNITY ATTITUDES TOWARDS LEPROSY1

The widely held belief that leprosy is highly contagious and the intense stigma attached to the disease prompted the segregation of the leprosy patients to prevent the spread of the disease. In spite of current evidence that leprosy was curable and not contagious, public attitude towards leprosy has remained largely unchanged (Table 2.2

– 2.3). Therefore, the diagnosis of leprosy can often be traumatic for individuals and their families and a person affected by leprosy suffers negative reactions such as shame, fear and guilt. The community reaction to leprosy cause serious constraints on social activities of the leprosy patient and their families. Studies in India over the years have uniformly shown that adverse attitudes towards leprosy sufferers are widely prevalent in Indian communities. Studies in India have reported that over 50 - 75 % of the respondents considered it necessary to segregate leprosy patients (Ramu et al.,

1975) and many were against even casual contact with leprosy patients and vehemently opposed to their living in the neighbourhood (Kumar et al., 1983).

However, more recent studies in India (Seshu Babu et al., 1988) and in Nepal (De

Stigter et al., 2000) where leprosy is endemic, found that these negative attitudes towards leprosy have decreased, suggesting that even in the absence of specific health education, some degree of awareness has been created in the community prompting a positive change in attitude.

Stigmatising beliefs regarding the causation of leprosy largely determined community attitudes towards those affected by the disease. Chen’s study in Sarawak,

1 “Attitudes are characteristics acquired by social interactions. The success or failure of a control programme is intricately linked to the attitude of the public towards the disease and its sufferers”. Park, 1997.

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Malaysia showed that the attitude of the Chinese community towards leprosy patients was the most negative in comparison to the other ethnic groups as the Chinese perceived leprosy to be the result of sexual contact with prostitutes (Chen, 1986).

Consequently, almost all Chinese respondents (96 – 100 %) disapproved of having direct or indirect contact with leprosy patients or even with items handled by the patients and only less than 25 % even approved of marrying a relative of a patient. A study in Indonesia (Elissen, 1991) also revealed that most leprosy patients did not encounter any discrimination from their families or their community. These studies conclude that patients of Islamic faith suffered less discrimination because of the religious and traditional values of Islam which does not regard leprosy as a punishment of God and instead considers it the duty of all Muslims to care for the sick (Mohamed,

1985; Elissen, 1991; Berkri et al., 1998). Therefore, religious and cultural values can positively influence the attitude and practices of the community. The results of these findings were not substantiated by further statistical evidence.

It has been documented that the stigma against leprosy prevalent in the community induces self discrimination in leprosy patients (Mull et al., 1989; Elissen,

1991). For example, in Indonesia, it was found that despite an apparent adequacy of knowledge, over 50 % of the patients interviewed felt ashamed or inferior as a result of their condition and felt that they needed to be isolated, forbidden to marry healthy partners or live together with their families or have children (Elissen, 1991). It was also not uncommon for leprosy to cause family and marital discord amounting to separation (Reddy et al., 1985; Mull et al., 1989; Kumaresan and Magnu, 1994a;

Awofeso, 1995). For instance, in Nigeria over 50 % of patients had problems in their marriage and 29 % were separated from their families due to leprosy (Reddy et al.,

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1985). Likewise, discriminative attitudes towards family members with leprosy were common among extended families in India and often resulted in the break up of the family structure (Rao et al., 1996; Kaur and Ramesh, 1994). Furthermore, gender discrimination in leprosy was also apparent as females with leprosy were also more likely to be divorced by their husbands than vice versa (Awofeso, 1995; Mull et al.,

1989).

More recently, studies have analysed gender differentials and their effect on leprosy in great detail (Rao et al., 1996; Morrison, 2000). These studies show that males generally faced socio-economic problems such as securing or holding on to lucrative jobs with consequent loss of income whereas female patients, who were mainly housewives, were more affected within the family sphere. Consequently, in societies with a high level of social ostracism, males were more likely to be rejected from communities than females, partly because they were more exposed to their society than women. In contrast, more women than men suffered isolation and rejection from within their family (Kant, 1984; Rao et al., 1996). In addition, a study by Kopparty (1995) in India among different castes patients and families, which is a broad indicator of the social and economic status of the group in the society, found that the lower caste group faced more severe economic problems while the upper caste group faced more social problems. A study among women in India (Kaur and Ramesh,

1994) similarly showed that stigma attached to leprosy had more negative impact on educated women belonging to higher socio-economic groups.

Perhaps the most important element that has led to intense discrimination of leprosy patients is the occurrence of leprosy related disfigurement and disabilities

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(Myint et al., 1992; De Stigter et al., 2000; Morrison, 2000) and the degree of rejection, correlated with the extent of the disabilities and dysfunction present

(Kumaresan and Maganu, 1994a). Likewise, a study in Sudan also found that the stigma associated with leprosy was particularly severe towards those with extreme deformities and ulcerations (El Hassan et al., 2002). This was clearly highlighted in a study in India which found that families of leprosy patients with deformities faced ten times more social problems than those without deformities (Kopparty et al., 1995).

Hence, the physical aspect of leprosy also substantially influences the attitudes and behaviour of the society.

A post intervention-comparative study in two neighbouring districts in

Tanzania, (Van den Broek et al., 1998) is one of the few studies which looked into the variables associated with negative attitudes pertaining to leprosy. Multivariate analysis showed that the willingness to shake hands and share food with a person with leprosy were significantly associated with the knowledge that leprosy is an infectious disease, persons of younger age and not following Muslim religion. The findings were similar in both districts, which had or had not received health education on leprosy.

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Table 2.2. Community knowledge and attitudes towards leprosy.

Country Study design and sample Findings

India Random sample of 955 19.2%-25% were aware of the cause of (Kumar et al., 1983) adult community members leprosy. Respondents from the urban area had from urban, urban-slum and a better overall awareness of leprosy. rural areas. 51% of rural and 42% of urban community members had negative attitudes.

India Cross sectional comparative Overall poor knowledge on leprosy was (Shetty et al., 1985) study among 198 present. community members from 2 Community respondents vs. Patients rural areas and 105 patients Leprosy is caused by germs 8% vs.22% attending a leprosy clinic. Aware of early signs of leprosy-15% vs. 42% Aware of the mode of spread- 19% vs.12% Patients should be segregated–60% vs. 56%

India 364 individuals from 2 rural 15.5% were aware of the cause and (Seshu Babu et al., areas. transmission of leprosy. 1988) Higher knowledge of leprosy was seen among females, literate and Muslims respondents. 18% of the respondents said they would avoid total contact with a patient; 16.2% had sympathetic attitude towards a patient.

Ethiopia Comparative study of Negative attitude towards leprosy was (Tekle-Haimanot et leprosy and epilepsy among stronger compared to epilepsy. al., 1992) a sample of 1546 rural population.

Nepal 200 family members from 5 Negative attitude was present among the (De Stigter et al., communities. community. But a decreasing trend in 2000) negativity was seen over the years.

Malaysia Cross sectional study on a Chinese had severe misconceptions compared (Chen, 1986) Sample of 504 members to other ethnic groups. from 5 major ethnic groups. < 5% of the Chinese and 12.8% of the Iban community mentioned germs as the cause of leprosy. Chinese had the most negative attitude (98- 100%) compared to other ethnic groups.

Myanmar Matched case control study 92.5 % of the rural and 85.5% of the urban (Myint et al., 1992) of 243 patients and community knew that leprosy was caused by community members germs. Among the patients, 96.9% of rural (control) in rural and peri- and 81% of the urban patients knew of the urban areas. germs. 51% urban and 42% rural community respondents had negative attitude towards leprosy. 15.7% of the urban patients said they were insulted for having leprosy compared to 3% from rural town.

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Table 2.3. Knowledge, attitudes and practices among leprosy patients.

Country Sample Findings

Ethiopia Case control study High level of stigma and reliance in traditional (Bekri et al., 1998) patients with and healers lead to late presentation. disabilities 19% knew leprosy was curable. 105 cases and 168 84% believed in hereditary as the cause. controls from three 75% believed that first sign of leprosy was loss of areas. parts or deformities. Old age, illiterate and Christian religion were significantly associated with late reporting.

Nigeria Sample of 60 58% had traditional beliefs of the cause of (Van De Weg et al., patients in out patient leprosy. 1998) department and 20% believed leprosy was contagious. hospital setting. 37% consulted the folk sector as the first line of treatment.

Trinidad Random sample of 67% did not know the cause of leprosy. (Suite and Gittens 92 dermatology 21% mentioned germ as the cause of leprosy. 1992) clinic patients. 50% believed leprosy to be curable.

India 356 households in a 21% men and 26% women hid their disease from (Rao et al., 1996) rural community. others. Fasting and offering to God delayed women from seeking early medical treatment.

Women faced more discrimination due to leprosy. They were isolated from cooking 80.0%, touching (84%) eating together (63%) sleeping together (85.8%) sex (71%) and attending festival (21%) compared to men. (Men – 29%, 17.7%, 48%, 20%, 22%, 9.6% respectively).

India (Kaur and Ramesh, 50 women leprosy More women belonging to higher socio-economic 1991) patients in 2 urban and better educated groups were adversely leprosy centres affected by leprosy stigma. Discrimination was more common in extended than nuclear families.

Pakistan Cross sectional study 52% initially sought treatment from a traditional (Mull et al., 1989) of 128 patients healer. 34% were shunned by their neighbours. 27% were rejected by their families (7 divorced) 19% lost their jobs.

Indonesia Random sample of Satisfactory knowledge of leprosy but 40% had (Elissen, 1991) 50 leprosy patients traditional beliefs and 54% had religious ideas regarding the disease. 48% consulted an indigenous healer. Remarkable degree of self discrimination was present.

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Adequate technical knowledge and desired attitudes of the “healer” is as important as those of the patient and community in ensuring the success of the programme (Gill, 1983). Surprisingly, it has been found that health care providers also shared the negative perceptions and attitudes of the community (Table 2.4; Uplekar and Cash, 1991; Awofeso, 1992; Kumaresan and Magnu 1994b; Van Den Broek et al.,

1998). A comparative study in Bombay, India, among general practitioners who were trained in the management of leprosy with those who were not, found that only 24 % of trained doctors, as opposed to 75 % untrained doctors, believed that isolation and treatment of leprosy patients was necessary (Uplekar and Cash, 1991). Furthermore, fewer (22 %) trained doctors than untrained doctors (59 %) were opposed to social integration of leprosy patients even after complete cure. Likewise, in Botswana, the attitude of health service providers was found to be influenced by a lack of knowledge on leprosy with over a third of the respondents believing that patients should be isolated and treated (Kumaresan and Maganu 1994b). Negative attitudes were also present among final year nursing students in Nigeria who felt that nursing leprosy patients was a “dirty job” (74 %) and that these patients should be isolated and treated

(78 %) (Awofeso, 1992).

An interesting study in India by Premkumar et al., (1994) compared the attitudes of health personnel who had worked in a leprosy campaign for over five years with those who had worked for a year. In the “attitude scale” developed by the researchers, 65.5 % of all personnel tested had a “minimum desirable attitude” with laboratory technicians showing the “highest desirable” attitudes (74.7 %) and health educators scoring the lowest (57.5 %). Surprisingly, the stigma shown towards leprosy was highest among the doctors. Clearly therefore, a lack of scientific knowledge does

Review of Literature not appear to be the sole reason for negative attitudes towards leprosy. Indeed, studies have found that doctors in India expressed concerns about treating leprosy patients for fear of being socially stigmatised themselves (Uplekar and Cash, 1991; Ramanathan and Ramu, 1986).

In general, studies which attempted to explore the “attitudes” of the community have used the term very loosely. The results would be better expressed, be made more comparable and more descriptive by the use of validated scales for assessing overall attitudes. Many studies conducted in order to assess the attitudes towards leprosy have stopped short of preliminary analysis of their findings. Many studies also fail to look for underlying factors associated with the expressed stigma towards leprosy. In addition, in instances where several variables are being studied, it is essential to identify associations taking the confounders into consideration. In the light of the leprosy elimination efforts, negative social attitudes have been shown to seriously affect the outcome of the programme. Carefully designed, culture specific health education, based on the priority areas and deficiencies identified by KAP studies, will create awareness among the community.

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Table 2.4. Knowledge, attitudes and practices among leprosy health care providers.

Country Sample Findings

China Sample of 142 doctors 6 –14% didn’t know the pathogen (Chen, 2000) at different levels causing leprosy. 9-73%- believed treatment of leprosy was life-long. 62% didn’t know about MDT. Majority could not recognise early symptoms of leprosy.

India Random sample 106 None of the doctors knew about MDT. (Uplekar and Cash, 1991) GP’S – comparative 22- 24% of GP’s with training and 76- study on doctors with 88% had negative attitudes towards and without training in leprosy. leprosy

India Comparative study of 65.5% of the respondents had minimum (Premkumar et al., 1994) Health professionals in desirable attitudes towards leprosy. National Leprosy Attitude differed between different Elimination Programme categories of staff with doctors showing with one and five years the least desirable attitude towards experience leprosy.

Nigeria Volunteer sample of 13% – 17% had below basic average (Awofeso, 1992) 278 Nurses knowledge of leprosy. 65% believed that leprosy was highly infectious. 75% said that leprosy patients should be isolated and treated. 74% said nursing leprosy patients was a dirty job.

Philippines Random sample of 100 45% of nurses had inadequate knowledge (Gerochi, 1986) household heads and 70 of leprosy. senior student nurses 56% of the student nurses would not favour living in the same community as the leprosy patients.

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2.4. COMMUNITY HEALTH PRACTICES

All forms of leprosy can be completely cured by MDT if appropriately and adequately treated. However, the recognition of the early manifestations of the disease to enable early referral and treatment is vital for the success of leprosy elimination programme. Despite the best efforts, a significant number of leprosy patients already have irreversible nerve damage and disabilities when they first come into contact with the health services (WHO, 1996b). A disability rate up to 32 % has been reported among the newly detected cases of leprosy (WHO, 2002a). Delayed presentation to healthcare facilities is a recognisable risk factor of disability in leprosy and studies in the Africa and Asia reveal a median delay of approximately 1- 2 years before patients seek medical treatment since first noticing their symptoms (Reddy et al., 1985; Bekri et al., 1998; Van de Weg et al., 1998; Robertson et al., 2000). The cost of preventing leprosy related disabilities is extremely modest when compared to the cost of rehabilitation of affected patients (Feenstra, 1994).

An important task in the prevention of leprosy related disabilities is to determine the reasons for the delay in presenting to health facilities and design appropriate interventions aimed at promoting early reporting and speedy diagnosis. A study in Ethiopia identified misconceptions about leprosy, leprosy stigma and lack of awareness of modern treatment as well as the influence of traditional healers or community leaders as important factors associated with the delay in seeking help

(Berki et al., 1998). The study also showed that, generally, the older and illiterate patients had the longest delays in presenting to the clinics. In Nepal, it was found that a younger age of the patient and better awareness of leprosy to be positively associated

Review of Literature with early self referral for treatment whereas the reliance on traditional healers, rural dwelling and longer distance to the health facilities were associated with a delay in health seeking (Robertson et al., 2000). Similar findings were reported by studies in

India where better awareness of the leprosy, younger age of affliction and an urban background were significantly associated with the motivation to be cured and compliance with treatment (Kumar et al., 1983; Anandaraj, 1986).

Traditional healers have been found to play a significant role in the delay in the reporting of new cases (Bekri et al., 1998; Robertson et al., 2000). In Botswana, the typical health seeking behaviour of leprosy patients consisted of a routine of home- based care followed by consultation with traditional healers and finally, after a substantial delay, referral to the local health facility (Kumaresan and Maganu, 1994b).

Other studies carried out in Ethiopia (Bekri et al., 1998), Nigeria (Van de Weg et al.,

1998), Indonesia (Elissen, 1991) and Pakistan, (Mull et al., 1989) also showed that the most influential and most frequently consulted first step in health-seeking routine was the folk medicine sector and that many patients had lost years of effective treatment by opting for informal and traditional management for their conditions. This over reliance on traditional healers has been attributed to the fact that many communities did not regard leprosy to be a medical problem requiring health care in its early stages

(Kumaresan et al., 1993).

Compliance with MDT treatment is yet another hurdle faced by the leprosy control services. It has been reported that most patients who defaulted treatment were not convinced that leprosy required prolonged treatment or were found to be “clinic shopping” with the hope that their skin patch would not be diagnosed as leprosy

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(Anandaraj, 1986). It was also found that the patients’ level of education and distance of the clinic from their home did not have any association with compliance to treatment (Nwosu and Nwosu, 1997). Studies in India also showed that although more women than men delayed treatment and opted for traditional or religious practices such as fasting and offerings (Rao et al., 1996), once on treatment for leprosy, women tended to have higher compliance rate (Rao et al., 1996: Mull et al., 1989). In contrast, in Nigeria, more women (43 %) than men (24 %) went directly to leprosy services for treatment, circumventing traditional medical consultations (Van de Weg et al., 1998).

Health seeking behaviour is not the sole responsibility of the patient. A well informed family and community are also important to guide and support the patient to seek and adhere to treatment. Furthermore, community awareness of leprosy rather than the literacy level determines the health seeking behaviour of a community whereas the misconceptions regarding the disease, the stigma attached to leprosy and the practice of seeking help from traditional healers as the first step in health care seeking routine influence the delay in starting treatment.

2.5. MEASURING LEPROSY STIGMA

Stigma against leprosy patients undermines leprosy control efforts which are unlikely to succeed unless the various dimensions of the disease that influence the process of stigmatisation are understood and addressed (Jones et al., 1984; Bainson and Van Den Borne, 1998). However, information regarding the dynamics of leprosy stigma is scarce considering the sensitivity of the issue and the complexity of assessment. Particularly, systematic research that quantifies the intensity of stigma is

Review of Literature rare due to the difficulty of reliably measuring psychosocial phenomena such as stigma

(Bainson and Van Den Borne, 1998). Studies that involve some form of measurement of stigma can be broadly categorised into two groups, (I) studies that assess the effects of stigma on the person affected, and (II) surveys that assess community attitudes and / or practices (Van Brakel, 2003). One commonly used working definition describes stigma as “a real or perceived negative response to a person or persons by individuals, communities or society, characterised by rejection, denial, discrediting, disregarding, underrating and social distance” (Weiss and Ramakrishna, 2001). As revealed in the literature review, the study instrument used by most studies consisted largely of questionnaires or lists of statements to which the respondents had to reply or rate on a response scale to assess the attitudes of the respondents.

To date, there is no accepted scale or instrument with which leprosy stigma in the community could be reliably measured (Van Brakel, 2003). In the context of the new International Classification of Functioning, Disability and Health (ICF), the consequences of stigma would manifest to a large extent as participation restrictions

(WHO, 2001). Specifically, the ICF recognises some important life domains relevant to community stigma in which participation may be restricted, i.e. mobility; domestic life; interpersonal interactions and relationships; major life areas; community, social and civic life. Accordingly, items routinely used in surveys that assessed community attitudes and practices have been grouped according to ICF domains stated above

(summarised in Table 2.5).

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Table 2.5. Attitude and practice items commonly used in surveys that assessed community attitudes and practices grouped according to ICF domains (adapted from Van Brakel, 2003).

Domain Item

Mobility Move around freely in the community. Allowed to use public transport.

Domestic life Sharing food with an affected person. Using the same utensils as other family members. Live in the same room or house as an affected person.

Interpersonal interactions and Shake hands or touch an affected person. relationships Marry into a family where someone had leprosy. Allowed to play with children. Visit or be invited by family and/ or others. An affected person should be isolated.

Major life areas Work with or employ. Equal treatment of an affected person as other patients.

Community social and civic life Attend social functions. Spend leisure times with friends. Allowed to use public facilities buy food from an affected person. Participate in religious services.

The concept of analysing stigma in the context of ICF domains reflects the fact that despite enormous cultural and geographical diversity, many areas of life affected by stigma appear to be remarkably similar suggesting that a culture-free stigma scale may be used to measure the intensity of leprosy stigma in a given community (Van

Brakel, 2003). In contrast, Kleinman and Sung (1979) emphasise that the social course of a disease like leprosy varies according to the different worlds, social networks and social histories and recommend that the process of stigmatisation of leprosy should be researched and understood in the local context of every community. Weiss (2001) agrees and states that a single scale or instrument is unlikely to be adequate to fulfil the needs for disease-specific and culture-specific studies of stigma that address local concepts.

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Measurement of stigma is needed for the process of destigmatisation, which is vital for all aspects of leprosy elimination as well as the social re-integration of affected persons. The challenge, however, is to relate to the ambiguity surrounding the term stigma and there is a need to disentangle this term into its attitudinal and behavioural components (Volinn, 1983). Identifying the stigma in relation to these components may help in planning a successful health education programme.

2.6. EFFECTIVENESS OF INTERVENTIONS TARGETING KNOWLEDGE

AND ATTITUDES

Health education on knowledge, attitudes and practices on leprosy

Good quality health education programmes can improve knowledge, dispel wrong beliefs and influence behaviour and lifestyles of the target population. Table 2.6 gives an overview of some diverse health education intervention studies carried out in the past decade. A study in Bangladesh (Croft and Croft, 1999) that compared two areas which varied widely in the coverage of health education they received, found that the knowledge of the signs, symptoms and curability of leprosy was significantly higher among the population in the area that had had extensive health education coverage (p<0.05). For instance, 94 % of those who received health education as opposed to 46 % of those who did not, believed leprosy to be curable. More importantly, a markedly lower level of prejudice towards leprosy patients was demonstrated by those who had received health education (18 % - 28 %) in contrast to those who had not (50 % - 94 %). In the village that had not received health education, over 75 % of the families reported that they would not share a meal with a leprosy sufferer and 94 % stating that they would not permit their son to marry a girl who is

Review of Literature cured of leprosy. Similarly, another post-intervention control group study in a slum area in Bangladesh also found that the overall knowledge of leprosy and positive attitudes towards those affected were significantly higher in the intervention area

(Hilary, 2000). A KAP study in South India, before and after a community leprosy health education project, concluded that there was a favourable change in attitude among both, public and patient groups following health education, with the “mean attitude score” increasing from 12 % to 43 % in the public and from

3 % to 50 % among the patients (Mathews and Jesudasan, 1978). Collectively, these studies reveal that community education can give rise to a higher level of knowledge about leprosy that favours a positive change in community attitudes.

However, large scale community studies carried out in India and Tanzania which studied the effectiveness of routine health education programmes found only moderate increases in level of knowledge and no detectable change in expressed prejudice towards leprosy sufferers (Raju and Kopparty, 1995; Van den Broek et al.,

1998). Similarly, an assessment of the impact of a seven-year intensive health education campaign on leprosy delivered to the community of the Rufiji District in

Tanzania did not find a significant improvement in knowledge or attitudes of the general public or health staff in Rufiji District when compared to the control population of the neighbouring district that did not receive health education (Van den

Broek et al., 1998). In both districts, on average, 40 - 45 % of the people were willing to shake hands and to share food from the same plate with a leprosy patient, although stigmatising beliefs associated with contracting leprosy appeared to be less in the area which received health education (18 % vs. 30 %). However, it was found that health education had a favourable effect on the knowledge and attitudes of school children,

Review of Literature with 75 - 90 % of the children from Rufiji district as compared to 52 – 74 % from the control area being aware of the signs and curability of leprosy (Van den Broek et al.,

1998).

Knowledge has been shown to be transmitted from one strata of the community to another. Studies have been carried out in India to determine whether health information regarding leprosy given to schoolchildren would, in turn, influence the knowledge and attitudes of their families (Jacob et al., 1994). Although these intervention studies found a significant increase in knowledge among leprosy-educated school children, only modest improvement in knowledge was seen among their family members (Bhore et al., 1992; Jacob et al., 1994). It was also seen that the attitudes of the family members towards leprosy patients remained the same or had worsened

(Bhore et al., 1992; Jacob et al., 1994). In addition, the attitudes of the children towards leprosy patients were also found to have been adversely affected, with increased fear and apprehension towards the disease (Premkumar et al. 1991; Jacob et al., 1994).

The large scale studies mentioned above failed to look into the community knowledge and attitudes prior to the introduction of health education programmes. The failure of these programmes to have an adequate impact on the society may have been the lack of insight into the culture of these communities. The importance of exploring community beliefs and sensitivities can be seen in the success of a culture specific health education programme in Malaysia that incorporated local cultural believes and considered people’s sensitivities, social structure values and beliefs. This approach was successful in increasing their acceptance of messages and improving the knowledge

Review of Literature and attitudes of the target community (Chen and Sim, 1986). These communication campaigns have had to deal with a lack of a formal definition of stigma. This may have been the underlying factor in the moderate success seen in these programmes.

Research examining the causes contributing to stigma and reduction or removal of stigma prior to these campaigns would contribute to the success of the health education campaigns.

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Table 2.6. Knowledge and attitudes following health education interventions.

Sample size and Country Intervention Results design India 118 school HE sessions Knowledge on the cause of leprosy (Pre-test vs. (Jacob et al., children and 229 administered to Post-test) 1994) family members students School children - C I-15% vs. 72%, C II – 24% Pre and post test Class I- HE on leprosy vs. 58%, C III – 24% vs. 57% (p<0.05) case control study with homework Families - CI-14% vs. 58%, CII- 18% vs. 49%, assignment CIII- 38% vs. 37% Class II - HE on School children and families of CI had leprosy worsening attitudes; the attitude of CII, CIII Class III- HE on TB was unchanged (control)

India 41 schoolchildren Group I – HE on Knowledge of cause of leprosy (Pre-test vs. and 116 family leprosy Post-test) (Premkumar et members Group II- HE on TB School children - G I- 14.3% vs. 50.0%, GII- al., 1991) Pre and post test 4.5% vs. 13.6%: case control study Families - G I - 10.5% vs. 4.3%, 8.5% vs. 2.1% GI had worsened attitude towards leprosy; the attitudes of GII and families of GI and GII were unchanged.

Tanzania Post intervention Group education Knowledge of cause of leprosy (School and sessions/ children with health education vs. controls) (Van Den Broek Control groups seminar/meeting for 7 Knowledge on signs of leprosy - 90% vs. 74%; et al., 1998) School children- years Knowledge of curability of leprosy- 75% vs. 52 l1, 120 % (p = 0.000) General public- Favourable attitudes towards leprosy were seen 444 only among the children who had health Medical staff-96 education. Thirty eight percent from the area with health education and 21% from control area were willing to play or share food with a schoolmate having leprosy.

Bangladesh Cluster sample of 2 year HE in the Knowledge of cause of leprosy (Intervention 100 households. intervention area in vs. Control area) (Croft and Croft, Comparative study addition to routine 1999) of 2 areas with and health education Knowledge on signs of leprosy - 90 % vs. 16%, without HE. Post through locally Knowledge of curability of leprosy 94% vs. HE and control developed slide 46% (p< 0.05) groups shows, school visits More positive attitudes were seen in the area of and group health intervention education activities

India Cross sectional Routine HE 49.7 % from Andra and 37.7 % from Orissa study on 1199 campaigns had better overall knowledge. (Raju and respondents from Attitude was poor among the respondents in Kopparty 1995) 2 states both areas

Bangladesh Post –intervention, Extensive health Overall knowledge was high in the area of control group education campaign intervention. (Intervention vs. Control area) (Hilary, 2000) study among 400 using media, audio Leprosy is caused by germs-56% vs. 9%; respondents from visual effects, street leprosy is curable - 94% vs. 20% 2 areas plays and health talks Positive attitude seen among the intervention group compared to control. Would stay with a patient with leprosy - 76% vs. 29%. Females and those with primary education and above had more positive attitude following health education compared to males and illiterate respondents.

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2.7. CONCLUDING REMARKS

In summary, the review of literature suggests that, overall, community knowledge of leprosy was poor and the attitudes towards leprosy patients, negative.

Misconceptions regarding leprosy were widely prevalent in communities over wide geographical, cultural and economical backgrounds. The negative attitudes and stigma towards leprosy have persisted despite medical advances that have resulted in curing leprosy and minimizing infectivity. The leprosy elimination campaign can be deemed to be successful only if the awareness it creates brings about positive change in attitude and behaviour of the community and, eventually, facilitates the social reintegration of leprosy patients.

2.8. RATIONALE FOR THE STUDY

Early voluntary reporting is the cornerstone for the successful elimination of leprosy as a public health problem, and possibly, the eradication of leprosy. Another important challenge in the post-elimination era of the leprosy elimination campaign is the reintegration of cured leprosy patients into the society. However, positive community attitudes conducive to social reintegration of patients must be cultivated before this could be achieved. In this context, leprosy stigma which arose as a consequence of the misconceptions and cultural beliefs associated with the disease has been found to be among the most important causes for the negative attitudes of the community towards leprosy patients (Jopling, 1991).

Review of Literature

Stigma in leprosy is one area where there is paucity in empirical data (Bainson and Van Den Borne, 1998). Clearly therefore, the first step in any successful leprosy control programme should be to overcome the social prejudices and stigmatising cultural beliefs associated with leprosy (Vellut and Christian, 1978). This requires culture-specific health education programmes that take into consideration the community’s perception of the disease, beliefs as well as religious and cultural practices, all of which have significant influence on their acceptance of new messages

(Sandhu, 1976; Chen and Sim, 1986). As a pre-requisite for the planning and implementation of culture-specific health education, the community’s knowledge and attitudes towards leprosy have to be studied in detail. This would ensure that socially appropriate messages are formulated and delivered in a manner most receptive to the community and most likely to bring about the desired change in attitude and practices

(WHO, 1998b).

Although leprosy is no longer a public health problem in Singapore, by virtue of its strategic location as a hub in the South Asian region, Singapore is faced with the problem of an external source of introduction of communicable diseases including leprosy (Tan, 1987). With over 70 % of the global leprosy cases accounted for by countries in South Asia and Southeast Asia, this is a serious cause for concern.

Moreover, in the late phase of any disease elimination programme, such as the situation of leprosy in Singapore, problems arise with regard to the early detection and treatment of a few numbers of incident cases (Chen et al., 2000). This can undermine any effort to eliminate leprosy altogether. In addition, the social reintegration of patients is an important goal of the leprosy elimination campaign, which can be a considerable challenge in any plural society. Therefore, the problem of leprosy in

Review of Literature

Singapore is far from over. Public awareness, vigilance and education is needed to diagnose cases early (Tan, 1987) and to increase acceptance of leprosy patients. There will also be a continuing need for health education campaigns to repeatedly emphasize that leprosy is curable and that treated patients, even with deformities, represent no further risk of transmitting the disease.

So far, no studies have been carried out to assess the knowledge and attitudes regarding leprosy in Singapore. There is also no recent documentation of an appraisal of the knowledge and attitudes of a population in any country where leprosy is no longer a public health problem. Therefore, the current study will be the first to assess the awareness and identify the misconceptions and beliefs of a multi-racial and multi- religious community in Singapore with regard to leprosy. The present study will also assess community attitudes that influence the reintegration of those affected by leprosy into the society.

Review of Literature

2.9. OBJECTIVES

2.9.1. General objective

To assess the community knowledge, beliefs and attitudes towards leprosy in

the Ang Mo Kio constituency, Singapore.

2.9.2. Specific objectives

1. To assess the knowledge of the respondents with regard to the cause of

leprosy and its transmission.

2. To identify the prevailing beliefs and misconceptions regarding the cause of

leprosy and its transmission.

3. To assess the respondents’ attitudes towards leprosy.

4. To determine the association between socio-demographic variables of the

respondents and knowledge and attitudes of the respondents towards

leprosy and persons affected by leprosy.

5. To identify the factors that are associated with stigmatising attitudes

towards leprosy patients.

Methodology

Chapter 3

Methodology

STUDY DESIGN, MATERIALS AND METHODS

This chapter sets out to give a comprehensive overview of the methods and materials employed by the current study.

3.1. STUDY DESIGN

This was a cross sectional study in which information was obtained on the community’s knowledge, attitudes and practices towards leprosy by the administration of a structured interviewer-administered questionnaire. The study was carried out during the period of July to December 2001.

3.2. PLACE OF STUDY

The study was conducted among the residents of the Housing Development

Board (HDB) estates in the Ang Mo Kio constituency. HDB estates were selected since about 86 % of the population of Singapore live in HDB housing estates (Census of Population 2000). In addition, the data collection was also expected to be easier since accessibility to the respondents was unrestricted. Accordingly, 86.6 % of the population in Ang Mo Kio were also resident in HDB estates. The Ang Mo Kio constituency was specifically selected for the study as its community represented a mixed ethnic, religious and age distribution. The presence of a wide range of one to five roomed housing apartments also reflected the varying socio-economic backgrounds of the residents. In addition, as the only resident leprosy facility in

Methodology

Singapore (SILRA Home) is located in the vicinity, it is important to assess the attitudes of this community.

The Ang Mo Kio constituency, located north east of Singapore, has a population of 180,112 (Census of population, 2000). The majority of the residents were Chinese (83.6 %), while 8.1 % were Malays and 7.4 %, Indians. Other ethnicities contributed to 0.9 % of the population. Male: female ratio of the population was

1: 1.01. The median age of the residents was 45 years (range 21 - 91 years). The population constituted a multi-religious community with Buddhism (47.1 %), Taoism

(12.2 %), Christianity (13.4 %), Islam (7.9 %) and Hinduism (4.1 %) being the religions practised. Other religions contributed to the faiths of 0.5 % of the population while 14.8 % were free thinkers. Of those residents of Ang Mo Kio, excluding students, 24.7 % had had no formal education qualifications while 12.9 %, 42.1 % and

20.2 %, respectively, had had primary education, secondary education or held a diploma or university degree. Most (43.4 %) of the residents lived in three roomed units (Census of population, 2000).

3.3. STUDY POPULATION

The study population consisted of citizens and permanent residents of

Singapore who were 18 years of age or older and residing in HDB estates in Ang Mo

Kio.

Methodology

3.4. SAMPLING

Preliminary preparation was undertaken over a period of six months prior to the commencement of the study. The maps and the details of the housing estates, the number and type of HDB units as well as the population characteristics of Ang Mo Kio were obtained.

3.4.1. Sample population

The following were the eligibility criteria for inclusion in the study:

1. Population who were 18 years or older.

2. Population residing in HDB estates selected by the present study during the period

of May 2001 to February 2002.

3. Citizens and permanent residents of Singapore.

3.4.2. Sample size

A sample of 672 subjects was drawn in order to yield 5 % accuracy for the estimated prevalence rate of 52 % of knowledge of a key fact in leprosy at the 95 % confidence level and after factoring a non-response rate of 60 %. The estimated prevalence rate was derived from the pilot study (see below). Since, knowledge of the cause of a disease is one of the most important factors in the control of the disease, knowledge that ‘leprosy was caused by germs’ was taken as the prevalence rate for the purpose of calculating the sample size.

Methodology

3.4.3. Sampling frame and sampling method

The list of HDB housing units of the Ang Mo Kio estate was taken as the sampling frame. The Constituency of Ang Mo Kio had 68 housing blocks. The accommodation units which had been converted to shops and the housing blocks which contained less than five living accommodations either due to renovation or to their location in a shopping or commercial complex were not included in the sampling frame. The final sampling frame contained 60 housing blocks with a total of 8289 accommodation units. The units were then stratified according to the number of rooms they contained. A sampling fraction of 0.081 was used for the selection of the number of units from each housing block. Random numbers were generated for housing units of different size. The computer software EPISTAT was used for generating random numbers for the sample selection of housing units. Following the selection of the housing units, a random table was used to select one respondent from each housing unit to be interviewed.

3.5. DATA COLLECTION

3.5.1. Instrument

A structured questionnaire was used as the data collection instrument.

3.5.2. Questionnaire survey

An interviewer-administered structured questionnaire was used to collect the data for the study. As this survey deals with knowledge and attitudes of a population, the questions were based on statements. An interviewer-administered questionnaire was selected instead of a self-administered questionnaire, as this method is reasonably

Methodology independent of the respondents’ level of education. Preparation of the questionnaire used in the survey commenced in the planning stage and the contents of the questionnaire were planned according to the objectives of the study. All questions were of closed type, with the exception of questions which inquired into the additional causes of transmission and treatment of leprosy. The questionnaire was of a structured type, listing several possible response statements to the questions posed under each section. The responses of ‘yes’, ‘no’ and ‘do not know’ were used for questions that assessed community knowledge and beliefs whereas the section on community attitudes was assessed by using a ‘Likert scale’. Accordingly, the questionnaire was divided into six sections as follows:

Section A: Socio-demographic factors

The respondents’ socio-demographic variables such as age, citizenship, sex, ethnicity, religion, marital status, educational level, employment, household income and accommodation status were obtained.

Section B: Knowledge on leprosy

General awareness and misconceptions on leprosy were assessed by enquiry as to whether leprosy was a highly feared disease / whether it could spread easily and whether it was curable. Knowledge of the common symptoms of leprosy was explored using simple lay terms to describe the symptoms (see Annexe I).

Section C: Knowledge and beliefs regarding the cause and transmission of leprosy

Knowledge regarding the cause, transmission and treatment of leprosy was explored by listing common beliefs and misconceptions identified in the literature. The correct

Methodology responses were also stated as options. The respondents were also asked whether patients with leprosy should be isolated and treated.

Section D: Attitudes towards leprosy patients

The attitudes of the respondents towards leprosy patients were assessed by enquiry as to how the respondent would treat a family member, friend or colleague or unknown person with leprosy. Attitudes towards social and personal contact with leprosy patients were assessed by enquiry as to how the respondent would react to various situations of social and personal contact with a leprosy patient.

Section E: Practices towards leprosy patients

Respondents were asked on the course of action they would take if someone they knew contracted leprosy. The options of referral to a hospital / polyclinic or a traditional practitioner were given.

Section F: General information

Respondents were asked whether they knew or had seen a person with leprosy. They were also asked whether they would avoid a patient with leprosy, and if yes, their reasons for doing so.

The questionnaire was prepared in English using simple language, in order to be easily understood by illiterate respondents. It was then was pre-tested among a group of respondents similar to the study sample, in order to review the wording format and sequence of questions, ease of administration, repeatability, reliability,

Methodology acceptance and time taken for administration. A pilot study was conducted to assess the feasibility and shortcomings of the study.

3.6. INTERVIEWERS

The interviews were carried out by the students of the National University of

Singapore. The interviewers were familiarised with the questionnaire and trained in the proper manner of questioning as well as being familiarised with the operational definitions (see Annexe II) in order to maintain the uniformity of interpretation and explanation for the benefit of the illiterate and non-English speaking respondents. It was stressed that the interviewers write the responses as stated by the respondents and not their own interpretation of what was stated. The interviewers were also trained not to show bias or emotion during the interview. Instructions were given to the interviewers to visit the selected households three times before eliminating the units that had no occupants. To improve the response rate, the accommodation units were visited on three separate occasions at different times of the day with at least one visit during the weekend. Non-respondents were not replaced for the purpose of the survey.

A brief introduction about the purpose and nature of the study and assurance about confidentiality were explained to the respondents prior to the interview. The interview for each respondent lasted 20 to 30 minutes on average.

3.7. PILOT STUDY

The pilot study was conducted among a random sample of 20 respondents each from three selected areas (60 respondents in total) in October 2000. These areas of

Methodology study were randomly selected housing units in HDB estates in Hougang, Pasir Ris and

Ang Mo Kio. The Ang Mo Kio estates selected for the pilot study were not included in the main survey. The shortcomings in the study instrument that were identified by the pilot study were rectified prior to carrying out the main survey. Specifically, questions that were ambiguous were modified, replaced or removed.

3.8. DATA PROCESSING AND ANALYSIS

The responses in the recording form were manually checked for errors and omission. Standardised codes were used to simplify the coding process and analysis.

Data were analysed using Statistical Package for Social Sciences (SPSS) software

Version 11.0 (Chicago, IL). Data analysis was done based on the objectives of the study. Data screening was done to determine associations or correlations between variables. Chi square test was used to compare differences in proportions for categorical variables and Chi square test for trend was used to compare trends for selected ordinal independent variables. To assess the statistical significance of association for dichotomous variables and ordinal variables that were skewed, the non- parametric Mann-Whitney-U test and the Kruskal-Wallis test, respectively, were applied. A p value less than 0.05 was considered to be statistically significant.

Correlation analysis was used to determine the strength of knowledge between two ordinal variables, for example, the knowledge score and attitude score and between continuous variables and ordinal variables, for example, the age of the respondent and attitude score. Multiple regression analysis by stepwise method was used to evaluate the combined effect of the independent variables on the attitude score

Methodology of the respondents towards leprosy. Kolmogorov-Smirnov (Lilliefor’s) test of normality was carried out to test the distribution of the continuous variable – the attitude score. Natural logarithmic transformation of the variable was carried out to normalise the data distribution before carrying out the multiple regression analysis.

3.9. STUDY VARIABLES

3.9.1. Outcome variable

The main outcome variable in this study was attitudes of the respondents towards those affected by leprosy. The responses to hypothetical statements on attitudes were collected using a five point Likert scale ranging from “strongly disagree” to “strongly agree”.

3.9.2. Independent variables

Two groups of independent variables were measured in relation to the attitudes towards leprosy.

(i) Socio-demographic characteristic of the respondents: The type of accommodation was used as an indicator of economic status as most respondents from our pilot study declined to report the household income.

(ii) Mediating Variables: General misconceptions regarding leprosy, beliefs on causes of leprosy and beliefs regarding the transmission of leprosy were considered as mediating variables. The responses to questions under the knowledge and attitudes sections were analysed individually and as aggregated scores.

Methodology

3.9.3. Knowledge score

For the purpose of calculating the score on knowledge of symptoms and the overall knowledge score, one point was awarded for each correct response and no points given for incorrect or ‘don’t know’ responses.

The five items in score on knowledge of symptoms consisted of the following symptoms of leprosy: (i) skin patches; (ii) absence of itchiness or irritation of skin; (iii) skin nodules; (iv) loss of sensation; (v) disfigurement or deformities. The minimum and maximum scores on knowledge of symptoms were, respectively, 0 and 5 (range 0 -

5). Based on the median score (< median and ≥ median), the respondents were then categorised as having low knowledge (those who stated two or fewer symptoms; score on knowledge of symptoms ≤ 2) and high knowledge (those who stated three or more symptoms; score on knowledge of symptoms ≥ 3) for the purpose of further analysis.

Six items composed the overall knowledge score of leprosy: (i) leprosy is caused by germs; (ii) leprosy spreads easily; (iii) skin patches are a symptom of leprosy (early and common symptom); (iv) leprosy is curable; (v) leprosy can be treated by drugs; (vi) isolation of patients is necessary. Cronbach’s coefficient alpha

(α) was 0.4. The minimum and maximum overall knowledge score were, respectively,

0 and 6. The median was used as the cut-off point for categorising the respondents' level of knowledge on leprosy as being high (score ≥ median value) or moderate (score

= median value) or low (score < median value) for further analysis.

Methodology

3.9.4. Attitude score

The questionnaire used a ‘Likert scale’ (1 - 5) to evaluate the attitudes of the respondents towards leprosy. An attitude score was derived at by computing the sum of the responses given by the respondents to the following nine statements, each depicting a situation requiring physical and/or social contact with a leprosy patient: (i)

I will sit beside a patient (ii) I will shake hands with a patient (iii) I will share food with a patient (iv) I will buy food from a patient (v) I will house a patient (vi) I will work in the same environment with a patient (vii) I will befriend a patient (viii) I will allow a cured patient to marry a member of my family.

These statements were carefully selected for the assessment of respondents’ attitudes towards leprosy following discussions with the field officers involved in control of leprosy and the Leprosy Relief Association as well as literature reviews and were substantiated by the findings from the pilot study.

Factor analysis was performed to identify items that explained the variable attitude score. Factor analysis (Principal Component Analysis) was performed using nine items: (i) I will sit beside a patient (ii) I will shake hands with a patient (iii) I will share food with a patient (iv) I will buy food from a patient (v) I will house a patient

(vi) I will work in the same environment with a patient (vii) I will befriend a patient

(viii) I will allow my child to play with the children of a leprosy patient (ix) I will allow a cured patient to marry a member of my family. Eight items were identified with the cut off point being 0.34 or higher, that explained the pattern of correlations within a set of observed variables (Table 3.1 – 3.3). The range of the attitude scores was 8 – 40. The Cronbach’s coefficient alpha (α) was 0.89.

Methodology

Factors associated with the attitude score were analysed both as categorical variables and as continuous variables. The social reintegration of a person affected by leprosy requires total acceptance by their community in all aspects of interaction with the patient. In the univariate analysis of factors associated with stigmatising attitudes, a score of 31 or less in the attitude scale represents the respondents who disagreed, strongly disagreed or were neutral (based on the Likert scale) to having any form of contact with a leprosy patient in all nine statements used to explore respondents' attitudes. Therefore, for further analysis, respondents who scored 31 or less were considered to have stigmatising attitudes towards leprosy. In the multivariate analysis, in order to determine the independent factors associated with stigmatising attitudes, the dependent variable was analysed as a continuous variable.

Table 3.1. Correlation between the eight items in the attitude score.

Items patient patient patient patient a patient a patient Sit next to a Work with a Shake hands Friend with a with a patient Marry a cured leprosy patient Buy food from Share food with House a leprosy

Sit next to a patient 1.00 0.76 0.63 0.52 0.58 0.61 0.53 0.36 Shake hands with a patient 1.00 0.63 0.45 0.54 0.62 0.50 0.41 Share food with a patient 1.00 0.55 0.52 0.50 0.33 0.29 Buy food from a patient 1.00 0.41 0.51 0.43 0.30 House a leprosy patient 1.00 0.53 0.42 0.42 Work with a patient 1.00 0.61 0.41 Friends with a patient 1.00 0.48 Marry a cured leprosy 1.00 patient

Methodology

Table: 3.2. Extracted item scores and the component matrix of attitude score.

Items Extraction Components

Sit next to a patient 0.72 0.85 Shake hands with a patient 0.70 0.83 Share food with a patient 0.56 0.75 Buy food from a patient 0.48 0.69 House a leprosy patient 0.54 0.74 Work with a patient 0.65 0.81 Friends with a patient 0.50 0.71 Marry a cured leprosy patient 0.34 0.59

Extraction Method: Principal Component Analysis.

3.10. MINIMISING ERRORS

The steps taken to minimise errors in data collection and data entry were as follows:

1. The interviewers were familiarised with the questionnaire and adequately trained to

complete the required responses to minimise interviewer bias.

2. A weekly assessment of completed questionnaires was carried out by a single co-

ordinator and feedback provided to the interviewers.

3. Regular supervision of interviewers was carried out during the course of data

collection.

4. Random checks on the accuracy of the responses were carried out by the co-

ordinator by re-visiting the housing units of the respondents and reviewing the

questionnaire with them.

5. Accuracy of data entry was assessed by a 10 % reassessment of data entry and

crosschecks with the hard copy of the data.

Methodology

3.11. ETHICAL ISSUES

The following ethical issues were considered in the design of the study:

1. The participants were briefed regarding the nature, objectives and method of

study and their voluntary participation acquired.

2. Participants were reserved the right to withdraw from the study at any point of

time.

3. Total confidentiality with regard to the identification of the participants and

information volunteered was assured at all times during and after survey.

Results

Chapter 4

Results

RESULTS

4.1. DESCRIPTIVE ANALYSIS

The sample population of 400 individuals was composed exclusively of citizens and permanent residents of Singapore. The overall response rate was 70.3 % (Table

4.1). The response rate among the contactable respondents was 81.2 %.

Table 4.1. Response rate of the sample population.

Response No. (n = 672) %

Participants 400 70.3

Refusals 126 18.8

Non-contactable 61 9.1

Not eligible 12 1.8

4.1.1. Socio-demographic variables

The distribution of the socio-demographic characteristics of the study sample is given in Tables 4.2 and 4.3.

The ethnic distribution of the respondents constituted 81.5 % Chinese, 9.3 %

Malays and 9.3 % Indians. The majority of the respondents were Buddhist (52.3 %).

The gender distribution was almost equal and constituted of 50.3 % females and 49.8% males.

Results

The age of the respondents ranged from 18 to 81 years. More than one third (36

%) of the respondents were in the age group of 18 - 30 years. The median age was 37.2 years and the mean was 38.4 years.

Table 4.2. Distribution of citizenship, ethnicity, religion, gender, age and marital status of the respondents.

Socio-demographic Variables No. Percentage (%)*

Citizenship Singaporean 367 91.8 Permanent Resident 33 8.3

Gender Male 199 49.8 Female 201 50.3

Ethnicity Chinese 326 81.5 Malay 37 9.3 Indian 37 9.3

Religion Buddhism 209 52.3 Christianity 55 13.8 Islam 37 9.3 Hinduism 26 6.5 Taoism 13 3.3 Free thinker 58 14.5 Sikhism 2 0.5

Age group (years) 18 - 30 144 36.0 31 - 40 89 22.3 41 - 50 79 19.8 51 - 60 54 13.5 61 - 70 26 6.5 > 71 8 2.0

Mean (SD) 38.4 (14.3) years Median 37.2 years Range 18 – 80.8 years

(SD) – Standard deviation

* Rounding off to the first decimal point applied to percentages where relevant.

Results

Just over a third of the respondents had completed secondary education (34.3

%) and 17.0 % had had university education. However, 6.3 % of the respondents had had no education. The respondents belonged to different employment categories and the highest proportion of the interviewed persons were housewives (14.8 %) or those employed in the sales and services sector (14.5 %). The professionals (doctors, engineers, lawyers, accountants and teachers) comprised 10.8 % of the respondents.

Students constituted 10.5 % and only 5.3 % were unemployed. Thirty one point five percent of the respondents were in the income group of < $ 999 whereas, 26 % and

19.8 % had monthly incomes of $ 1000 - 1999 and $ 2000 - 2999, respectively. The majority (68.3 %) lived in housing units that had three rooms or less whereas 11.3 % lived in housing units with five or more rooms.

Results

Table 4.3. Distribution of education, employment, marital status, housing and income of the respondents.

Variables No. Percentage (%)

Education None 25 6.3 Primary (1 - 6 years) 71 17.8 Secondary (7-10 years) 137 34.3 Junior college (11-12 years) 21 5.3 Technical (ITE) 16 4.0 Polytechnic 62 15.5 University 68 17.0

Employment Administrative/ managerial 32 8.0 Professional 43 10.8 Technical 32 8.0 Sales and services 58 14.5 Clerical 21 5.3 Production worker 22 5.5 Cleaner/ labourer 15 3.8 Student 42 10.5 Housewife 59 14.8 Retiree 18 4.5 Unemployed 21 5.3 Others+ 37 9.3

Marital status Single 173 43.3 Married 217 54.3 Separated 1 0.3 Divorced 4 1.0 Widowed 5 1.3

Gross monthly income (S$) < 999 126 31.5 1000 - 1999 104 26.0 2000 - 2999 79 19.8 3000 - 3999 23 5.8 4000 - 4999 18 4.5 > 5000 8 2.0 Not disclosed 42 10.5

Housing (Housing Development Board flats) 273 68.3 ≤ 3 rooms 82 20.5 4 rooms 45 11.3 ≤ 5 rooms

+Others: Security guard (08), National service (04), Armed forces regular (14), Part-time employment (02), Self employed (13)

Results

4.1.2. General information

On enquiry as to whether the respondents had ever come into contact or seen a patient with leprosy (Figure 4.1), it was found that only 12 % of the respondents had either come in contact or knew a patient with leprosy while 22.5 % said that they had seen a patient with leprosy.

Known a patient 48 (12%)

Seen a patient 90 (22.5%)

Not known or Seen a patient 262 (65.5%)

Figure 4.1. Distribution of respondents who had known or seen a patient with leprosy.

Results

4.1.3. Knowledge of leprosy

Table 4.4 gives the knowledge of symptoms of leprosy among the respondents.

When the respondents were asked about the symptoms of leprosy, 67.5 % knew that leprosy could present as skin patches while 70.5 % also knew of the deformities and disfigurement associated with leprosy. Only 41.5 % of the respondents were aware that a loss of sensation could be a symptom of leprosy while 18.5 % knew that leprosy did not cause itchiness or irritation of the skin. Results also revealed that 17.3 - 35.3 % of the respondents were unsure of the various symptoms of leprosy.

Table 4.4. The knowledge of the respondents on the symptoms of leprosy.

Response ‘yes’ Symptoms No. (%)

Skin patch 270 67.5 Disfigurement/ deformities 283 70.8 Loss of sensation 166 41.5 Nodules 189 47.3 No Itchiness/ irritation of skin 74 18.5

Results

Figs. 4.2 and 4.3 show the beliefs held by the respondents with regard to the causation and transmission of leprosy in descending order of prevalence. The beliefs listed as options in the questionnaire were identified during the review of relevant literature.

Sixty five percent of the respondents correctly believed that leprosy was caused by germs. However, 12.8 % and 22.3 % of the respondents, respectively, said that leprosy was not caused by germs or did not know whether it was due to germs. A hereditary origin was stated as the next common cause (46.8 %) of leprosy. Immoral conduct was believed to be a cause by 10.8 % of the respondents while only 2.5 - 7 % believed that leprosy was a punishment for sins or due to curse, witch craft or evil spirits. Poor personal hygiene, sex with prostitutes, saliva and weather were other causes stated by some of the respondents.

70 65.0

50 46.8

40 36.8 34.8 32.0 30

20 Percentage (%) 10.8 10 7.0 6.0 5.8 5.5 2.5 2.5 0 t t n y c s c ins od od it rms tary s fo ir blood en fo di nme i y’ Curse g’ sp Ge e o fic for t n il e l condu t li Her d a hea o WitchcraftEv en ‘ o Impure m g ‘c min mor a m sh tin g I ni tin Vit Ea Pu Ea Unclean envir Causes of leprosy

Figure 4.2. Distribution of respondents on beliefs regarding the cause of leprosy among respondents.

Results

More than half the respondents (54.3 %) believed that leprosy could be transmitted by personal contact such as sharing personal items including towels and toothbrushes. Fifty one point five percent also stated incorrectly that leprosy could be transmitted from mother to infant. However, many were aware of the fact that it could not be transmitted by casual contact like sitting close to (67.3%), shaking hands (66.0

%) or sharing food (55.8 %) with a patient. Almost two thirds (65 %) correctly reported that leprosy was not transmitted by insects, water or soil. Twenty one point eight percent of those interviewed reported that leprosy could be transmitted by air.

60 54.3 51.5 50

40 37.0

27.0 27.0 30 24.8 21.8 17.8 20 17.3 15.3

Percentage (%) Percentage 13.0 12.3 10

t s n ct d ir se e ta o A o soil items nfa fo ito river d l i on g cl u c g sq n a in rin tin o i k h patients a it rsona S it h S /m e w S p x Shaking hands cts ntaminate g mother to o se Bathing rin Se C a rom Sex with prostitutes In F Sh Transmission

Figure 4.3. Distribution of respondents on beliefs regarding the transmission of leprosy among respondents.

Results

Figure 4.4 shows the knowledge and beliefs of the respondents regarding the treatment of leprosy.

Of the respondents interviewed, 78.5 % correctly reported that leprosy could be treated with anti-leprosy drugs recommended for the treatment of leprosy whereas the others said it could not be treated (15.8 %) or were unsure (5.8 %) about treatment with anti-leprosy drugs. While 36.8 % also believed in medicinal herbs as a cure of leprosy, the role of avoiding taboo food and religious rituals in the treatment of leprosy were also stated by 24.3 % and 10 % of the respondents, respectively.

100

90 78.5 80

50 36.8 40

Percentage (%) 30 24.3

20 10.0 10

0 Anti-leprosy drugs Medicinal herbs Avoiding taboo food Religious rituals Ttreatment of leprosy

Figure 4.4. Knowledge and beliefs of the respondents regarding the treatment of leprosy.

Results

4.1.4. Misconceptions regarding leprosy

Table 4.5 shows the general misconceptions prevailing among the respondents regarding leprosy.

Forty one point three percent of the respondents believed that leprosy could spread easily. However, 39.8 % were of the opinion that it was not. About one third

(32.3 %) held the misconception that leprosy could not be cured. Almost half the respondents (49 %) were also of the opinion that leprosy patients always had deformities and 36 % believed that segregation or isolation of the patient during the illness was warranted.

Table 4.5. Distribution of respondents on the common misconceptions regarding leprosy.

Yes No Do not know Misconceptions regarding leprosy No. (%) No. (%) No. (%)

Leprosy can spread easily 165 41.3 159 39.8 76 19.0 Leprosy is incurable 130 32.5 176 44.0 94 23.5 Patients always have deformities 196 49.0 107 26.8 97 24.3 Segregation / isolation of patients is 144 36.0 233 58.3 23 5.8 necessary

Results

4.1.5. Attitudes towards leprosy patients

Table 4.6 describes how the study participants would respond if an unknown person or a friend or family member were affected by leprosy.

The commonest response of the respondents towards an unknown person (36.5

%) or a friend or colleague (43.0 %) with leprosy was to feel sorry or pity for the affected person. However, if the affected individual were a family member, the commonest response was to foster acceptance of the person (65 %). In contrast, only

19.8 % and 34.3 % of the respondents, respectively, were willing to accept an unknown person or a friend with leprosy. Overall, only a few (0.5 % - 2.0 %) said they would avoid the patient out of disgust. While one-fifth (20.5 %) would avoid an unknown person out of fear, less than 6 % said that they would do the same if it were a friend or colleague.

Table 4.6. Distribution of the attitudes of the respondents towards an unknown person, friend or family member affected by leprosy,

Unknown person Friend / colleague Family member Response No. (%) No. (%) No. (%)

Accept the person 79 19.8 137 34.3 260 65.0 Feel pity 146 36.5 172 43.0 83 20.8 Neutral 85 21.3 68 17.0 42 10.5 Avoid out of disgust 8 2.0 2 0.5 2 0.5 Avoid out of fear 82 20.5 21 5.3 13 3.3 Total 400 100.0 400 100.0 400 100.0

Results

The reasons given by the respondents for avoiding a patient are given in Figure

4.5. Of the 135 (33.8 %) respondents who said that they would avoid leprosy patients, the commonest reason cited for avoidance was the fear of being infected (88.1%) while

66.7 % stated that they were afraid of the deformities of the patient.

100 88.1 90 80 70 66.7 60 50 40.7 40.0 40 30 Percentage (%) Percentage 20 10 0 Afraid they will infect Afraid of their Others will think I I do no twant to be me deformities have leprosy associated with a Reasons for avoidance patient

Figure 4.5. Distribution of respondents on the reasons stated for avoiding a patient with leprosy (n=135).

Results

Figure 4.6 details the reasons given by the respondents for not avoiding a patient with leprosy. Of those who said they would not avoid a patient (65.3%), the majority felt that leprosy patients were unfortunate to have contracted the disease (95.1

%) and should be treated equally as any other person (97 %).

100 97 95.1 90 82.4 77.4 80 70 60 50 40 30

Percentage (%) Percentage 20 10 0 All people should They are I do not bother I will not be infected be treated equally unfortunate to have about what others by being near a contracted leprosy think patient Reasons for non avoidance

Figure 4.6. Distribution of respondents on the reasons stated for not avoiding a patient with leprosy (n = 265).

Results

The distribution of the attitudes of the respondents towards leprosy patients and the median scores are summarised in Table 4.7.

Thirteen questions were asked from the respondents to assess their attitudes towards leprosy patients. The results showed that, overall, the respondents showed less favourable attitudes with fewer than half being agreeable to sit beside (38.1 %), shake hands with (39.5 %), share food with (39.5 %) or buy food from (34 %) a person with leprosy. Furthermore, there was also reluctance on the part of the respondents to house a leprosy patient (21.3 %), work in the same environment as the patient (43.8%) as well as being willing to let their children play with a leprosy patient’s child (37.3 %).

However, more than half were acceptable towards sharing public transport (63.8 %) or accepting the patient’s participation at social functions (57.8 %) and most did not mind their family member marrying a patient cured of leprosy (57.8 %) or being friends with a leprosy patient (55.8 %). Many (75.3 %) also said that they would feel sorry or pity for the patient and 64.8 % said they were willing to help a patient in need.

Median values of attitudes

The median scores of the respondents' attitudes towards of leprosy patients revealed that while the respondents showed the most negative attitude towards sharing food with a leprosy patient (median 2), they were more amenable (median 4) towards helping, being friends with, sharing public transport or attending social functions with a person affected by leprosy.

Results

Table 4.7. Distribution of the attitudes of the respondents towards leprosy patients.

Strongly Strongly Disagree Neutral Agree Disagree Agree Median Community behaviour Score No. (%) No. (%) No. (%) No. (%) No. (%)

Sit beside a patient 30 (7.5) 67 (16.8) 151 (37.8) 115 (28.8) 37 (9.3) 3.0

Shake hands with a patient 31 (7.8) 85 (21.3) 126 (31.5) 120 (30.0) 38 (9.5) 3.0

Share food with a patient 61 (15.3) 151 (37.8) 103 (25.8) 68 (17.0) 17 (4.3) 2.0

Buy food from a patient 46 (11.5) 107 (26.8) 111 (27.8) 106 (26.5) 30 (7.5) 3.0

House a patient 57 (14.3) 137 (34.3) 121 (30.3) 70 (17.5) 15 (3.8) 3.0

Work in the same 19 (4.8) 63 (15.8) 143 (35.8) 142 (35.5) 33 (8.3) 3.0 environment with a patient

Be friends with a patient 13 (3.3) 37 (9.3) 127 (31.8) 181 (45.3) 42 (10.5) 4.0

Patients should be allowed to 9 (2.3) 36 (9.0) 100 (25.0) 198 (49.5) 57 (14.3) 4.0 use the public transport

Patients should be allowed to 12 (3.0) 39 (9.8) 118 (29.5) 192 (48.0) 39 (9.8) 4.0 attend public functions

Allow my child to play with a 27 (6.8) 80 (20.0) 144 (36.0) 108 (27.0) 41 (10.3) 3.0 child of a leprosy patient

Allow a cured patient to 42 (10.5) 64 (16.0) 191 (47.8) 84 (21.0) 19 (4.8) 3.0 marry a member of my family

Feel sorry or pity for the 11 (2.0) 14 (3.5) 74 (18.5) 222 (55.5) 79 (19.8) 4.0 patient

Help a patient 8 (2.0) 14(3.5) 119(29.8) 192 (48.0) 67(16.8) 4.0

1-strongly disagree, 2-disagree, 3-neutral, 4-agree, 5-strongly agree

The respondents’ attitude regarding their health seeking behaviour was assessed by the question ‘What would you do if a person you know contracts leprosy?’

Most respondents (95.5 %) said they would recommend referral to a hospital or polyclinic. However, a significant proportion (47.8 %) of the respondents stated that they would refer patients to a traditional healer.

Results

4.2. STATISTICAL ANALYSIS FOR ASSOCIATIONS

4.2.1. Knowledge of leprosy by socio-demographic variables

Symptoms of leprosy

Table 4.8 tabulates the knowledge on symptoms of leprosy by the socio- demographic variables of the respondents. The mean of the score on symptoms was

2.46 (±1.41 SD) and the median was 3 and the range was 0 - 5. The score on the knowledge of the symptoms of leprosy was obtained by summing up the responses of the respondents to the following items: (i) skin patches (ii) absence of itchiness or irritation of skin (iii) skin nodules (iv) loss of sensation and (v) disfigurement or deformities, each correct answer being awarded one point. Respondents who correctly cited three or more symptoms of leprosy (taking the median value as the cut-off point) were categorised as having high knowledge. Accordingly, it was found that, overall, 47

% of the respondents had low knowledge and 53 % had high knowledge of the symptoms of leprosy

Knowledge regarding the symptoms of leprosy was then analysed by the socio- demographic characteristics of the respondents. Among the ethnic groups, Malay respondents appeared to have low knowledge of the symptoms of leprosy as compared to Chinese and Indians. This difference in the levels of knowledge was not statistically significant. However, a statistically significant, higher proportion of Christian respondents had high knowledge of the symptoms of leprosy when compared with persons of other faiths. More males than females had significantly higher knowledge regarding the symptoms of leprosy. The knowledge of symptoms increased

Results significantly with increasing age of the respondents. The analysis by marital status also showed a statistically significant higher proportion of married respondents to have a high knowledge regarding the symptoms of leprosy than those who were never married.

Table 4.8. Knowledge on symptoms of leprosy by the socio-demographic variables of the respondents.

Score on symptoms of leprosy p Low knowledge High knowledge Socio-demographic factors (n = 188) (n = 212) value No. (%) No. (%)

Race Chinese 151 (46.3) 175 (53.7) Malay 20 (54.1) 17 (45.9) 0.67 Indian 17 (45.9) 20 (54.1)

Gender Male 81 (40.7) 118 (59.3) <0.05 Female 107 (53.2) 94 (46.8)

Religion* Buddhism/Taoism 107 (48.2) 115 (51.8) Christian 18 (32.7) 37 (67.3) 0.16 Islam 20 (54.1) 17 (45.9) Hindu/Sikh 16 (57.1) 12 (42.9) Free thinker 27 (46.6) 31 (53.4)

Age group 18 - 40 120 (51.5) 113 (48.5) < 0.05 (years) 41 - 60 55 (41.4) 78 (58.6) >61 13 (38.2) 21 (61.8)

Housing ≤3 rooms 130 (47.6) 143 (52.4) 0.92 4 rooms 38 (46.3) 44 (53.7) ≥ 5 rooms 20 (44.4) 25 (55.6)

Marital status Never married 91 (52.6) 82 (47.4) 0.05 Married 97 (42.7) 130 (57.3)

Educational Primary / No education 44 (45.8) 52 (54.2) level Secondary / Technical / 86 (49.4) 88 (50.6) 0.68 Junior college Polytechnic / University 58 (44.6) 72 (55.4)

* Christians vs. persons of other faith p <0.05

Results

Leprosy is caused by germs

The respondents’ awareness that leprosy was caused by germs was analysed by selected socio-demographic variables as detailed in Table 4.9. Accordingly, the knowledge that leprosy is caused by germs increased significantly with increasing age of the respondents. A higher proportion of the respondents who were married believed in the germ theory of leprosy as compared those who were never married. This difference was marginally close to statistical significance.

Table 4.9. Specific knowledge of “germs as the cause of leprosy” by the socio- demographic variables of the respondents.

Caused by germs Socio-demographic variables p value n = 260 No. (%)

Race Chinese 212 (65.0) Malay 23 (62.2) p = 0.89 Indian 25 (67.6)

Gender Male 130 (65.3) p = 0.89 Female 130 (64.7)

Religion Buddhism/Taoism 140 (63.1) Christianity 35 (63.6) p = 0.47 Islam 23 (62.2) Hinduism / Sikhism 18 (64.3) No religion (Free thinkers) 44 (75.9)

Age group (years) 18 - 40 147 (63.1) p < 0.05 41 - 60 83 (62.4)

> 61 30 (88.2)

Housing ≤3 rooms 179 (65.6) 4 rooms 57 (69.5) p = 0.18 ≥ 5 rooms 24 (53.3)

Marital status Never married 104 (60.1) p = 0.07 Married 156 (68.7)

Educational level Primary / No education 63 (65.6)

Secondary / Technical / Junior college 119 (68.4) p = 0.31 Polytechnic/ University 78 (60.0)

Results

Treatment of leprosy

Table 4.10 outlines the knowledge of the respondents regarding the recommended treatment of leprosy by anti-leprosy drugs analysed with respect to their socio-demographic variables. None of the socio-demographic characteristics of the respondents showed statistically significant association with this specific knowledge of the treatment leprosy.

4.10. Knowledge on treatment of leprosy by the socio-demographic variables of the respondents.

Leprosy can be treated Socio-demographic factors by anti-leprosy drugs p value

No. (%)

Race Chinese 257 (78.8) p = 0.66 Malay 27 (73.0) Indian 30 (81.1)

Gender Male 151 (75.9) p = 0.20 Female 163 (81.1)

Religion Buddhism/Taoism 176 (79.3) Christian 41 (74.5) p = 0.79 Islam 27 (73.0) Hindu/Sikh 23 (82.1) No religion 47 (81.0)

Age group 18 - 40 176(75.5) p = 0.15 (years) 41 - 60 112 (84.2) >61 26 (76.5)

Housing ≤3 rooms 210(76.9) p = 0.46 4 rooms 66 (80.5) ≥ 5 rooms 38 (84.4)

Marital Never married 129 (74.6) p = 0.10 status Married 185 (81.5)

Educational Primary / No education 77 (80.2) level Secondary / Technical / Junior college 131 (75.3) p = 0.38 Polytechnic / University 106 (81.5)

Results

4.2.2. Beliefs regarding leprosy by socio-demographic variables

Spread of leprosy

The respondents’ response to the statement ‘Leprosy can spread easily’ was analysed by selected socio-demographic variables (Table 4.11). Only the marital status of the respondents showed a statistically significant association with knowledge of the spread of leprosy, with 44.1 % of the married respondents, as opposed to 34.1 % of those who were unmarried, correctly stating that leprosy was not easily spread.

Table 4.11. Knowledge regarding the spread of leprosy by the socio-demographic variables of the respondents.

Leprosy can spread easily p value

Socio-demographic factors “No” (n = 159) No. (%)

Race Chinese 127 (39.0) p = 0.71 Malay 15 (40.5)

Indian 17 (45.9)

Gender Male 77 (38.7) p = 0.67 Female 82 (40.8)

Religion Buddhism/Taoism 88 (39.6) Christian 24 (43.6) p = 0.72 Islam 15 (40.5) Hindu/Sikh 13 (46.4) No religion 19 (32.8)

Age group* 18 - 40 87 (37.3) p = 0.49 (years) 41 - 60 58 (43.6) >61 14 (41.2)

Housing ≤3 rooms 106 (38.8) p = 0.60 4 rooms 32 (39.0) ≥ 5 rooms 21 (46.7)

Marital status Never married 59 (34.1) p < 0.05 Married 100 (44.1)

Educational Primary / No education 36 (37.5) level Secondary / Technical / Junior college p = 0.81 72 (41.4) Polytechnic / University 51 (39.2)

* ≤ 40 years vs. >40 years p = 0.24

Results

Curability of leprosy

The analysis of responses regarding the curability of leprosy is presented in

Table 4.12. The analysis by age of the respondents showed that more respondents who were older than 60 years were aware that leprosy was curable as compared to those from the 18 - 60 years age groups. This difference was not statistically significant.

Table 4.12. Knowledge of curability of leprosy by the socio-demographic variables of the respondents.

Curable p value

Socio-demographic factors “Yes”

No. (%)

Race Chinese 146 (44.8) p = 0.72 Malay 16 (43.2) Indian 14 (37.8)

Gender Male 87 (43.7) p = 0.91 Female 89 (44.3)

Religion Buddhism/Taoism 103 (46.4) Christian 20 (36.4) p = 0.72 Islam 16 (43.2) Hindu/Sikh 11 (39.3) No religion 26 (44.8)

Age group 18 - 40 104 (44.6) p = 0.11 (years) 41 - 60 52 (39.1) >61 20 (58.8)

Housing ≤3 rooms 123 (45.1) p = 0.79 4 rooms 35 (42.7) ≥ 5 rooms 18 (40.0)

Marital Never married 70 (40.5) p = 0.21 status Married 106 (46.7)

Educational Primary / No education 42 (43.8) p = 0.99 level Secondary / Technical / Junior college 76 (43.7)

Polytechnic / University 58 (44.6)

Results

Deformities in leprosy

Table 4.13 details the beliefs of the respondents regarding deformities in leprosy by their socio-demographic characteristics. None of the variables showed a statistically significant association or trend between the categories included in the analyses. Analysis by the gender of the respondents showed that more males than females wrongly believed that leprosy always caused deformities. This difference was close to statistical significance.

4.13. Knowledge of deformities in leprosy by the socio-demographic variables of the respondents.

Deformities are P value inevitable in leprosy Socio-demographic factors “No”

No. (%)

Race Chinese 94 (28.8) p = 0.14 Malay 7 (18.9) Indian 6 (16.2)

Gender Male 45 (22.6) p = 0.06 Female 62 (30.8)

Religion Buddhism/Taoism 61 (27.5) Christian 15 (27.3) p = 0.49 Islam 7 (18.9) Hindu/Sikh 5 (17.9) No religion 19 (32.8)

Age group 18 - 40 64 (27.5) (years) 41 - 60 30 (22.6) p = 0.17 ≥61 13 (38.2)

Housing ≤3 rooms 75 (27.5) p = 0.48 4 rooms 18 (22.0) ≥ 5 rooms 14 (31.1)

Marital Never married 44 (25.4) p = 0.60 status Married 63 (27.8)

Educational Primary / No education 25 (26.0) level Secondary / Technical / Junior college 46 (26.4) p = 0.96 Polytechnic / University 36 (27.7)

Results

4.2.3. Overall knowledge scores

The overall knowledge score was derived at by the sum of the respondents' responses to questions on the cause, symptom, transmission, curability and treatment of leprosy (see Chapter 3). A score of one was assigned for every correct response and a score of zero assigned to each wrong and 'don’t know' responses.

The mean knowledge score (see Chapter 3) of the sample population was 3.5

(± 1.38 SD) and the median was 4 with a range of 0 - 6. The median was used as the cut-off point for categorising the respondents' level of knowledge on leprosy as being high (score > median value) or moderate (score = median value) or low (score < median value) for further analysis. Accordingly, the frequency distribution showed that

44.3%, 31 % and 24.8 % of the respondents, respectively, had low, moderate and high knowledge of leprosy. Furthermore, 5.8% of the respondents correctly answered all questions pertaining to the knowledge score.

Median knowledge scores

The median scores on knowledge were analysed by the socio-demographic variables of the respondents as well as the criteria of prior acquaintance with a leprosy patient (detailed in Table 4.14). All groups analysed had a median knowledge score of four and there was no statistically significant difference in median scores by socio- demographic characteristics.

Results

Table 4.14. Comparison of knowledge median scores by socio-demographic characteristics of the respondents and prior acquaintance with a leprosy patient.

Socio demographic variables No. Median p value*

Sex Male 199 4.0 p = 0.78 Female 201 4.0

Age groups < 40 years 233 4.0 p = 0.29 41 – 60 years 133 4.0

> 61 years 34 4.0

Ethnicity Chinese 326 4.0 p = 0.91 Malay 37 4.0 Indian 37 4.0

Religion Buddhism / Taoism 222 4.0 Christianity 55 4.0 p = 0.98 Islam 37 4.0 Hinduism / Sikh 28 4.0 No religion 58 4.0

Marital status Never married 173 4.0 p = 0.12 Married 227 4.0

Education None / Primary 96 4.0 p = 0.97 ITE / Secondary / Junior college 174 4.0 Polytechnic / University 130 4.0

Accommodation ≤ 3 Rooms 273 4.0 p = 0.86 4 Rooms 82 4.0 ≥ 5 Rooms 45 4.0

Prior acquaintance Known a patient with leprosy 48 4.0 with a patient Seen but not known patient 90 4.0 p = 0.96 Not seen or known a patient 262 4.0

* Mann-Whitney and Kruskal-Wallis Test for significance.

Results

4.2.4. Beliefs regarding the cause of leprosy by socio-demographic variables

This study identified many beliefs harboured by the respondents with regard to the cause of leprosy. These and other beliefs identified in the literature as being attributable to the negative attitudes of the community towards leprosy were compared with respect to the socio-demographic variables of the respondents. Heredity as a cause of leprosy was reported by significantly less Indians (27 %) when compared to other ethnic groups (Chinese = 49.1 %, Malay = 45.9 %: χ2 = 10.49, df = 2, p < 0.01).

Likewise, fewer respondents of Hindu or Sikh religious faiths (28.6 %) believed that leprosy was hereditary when compared to respondents of other religious faiths (41.8 %

- 53.4 %). This difference just reached statistical significance (χ2 = 6.15, df = 2, p = 0.05). Analysis also showed an increasing trend in the belief that leprosy was hereditary with increasing age (χ2 = 8.32, df = 1, p < 0.01) and decreasing level of education (χ2 = 15.76, df = 1, p < 0.001) of the respondents. These associations were found to be highly significant.

Interestingly, twice the number of unmarried respondents (15 %) believed in superstitious causes of leprosy as compared to the married respondents (7.5 %;

χ2 = 5.81, df = 1, p < 0.05). When the respondents were stratified by their age (≤40 and

>40 years) and analysed, more unmarried respondents in both age groups believed in superstitious causes of leprosy (14.1% and 20.8%, respectively) compared to the married respondents (7.1% and 7.7%, respectively). This difference was not significant among the married and unmarried respondents in the ≤40 year age group (p = 0.11) but was significant among the >40 year age group (p < 0.05). Furthermore, 11.4 %, 3.7 % and 20 % of the respondents living in three, four and five roomed housing units,

100

Results respectively, attributed the cause of leprosy to superstitious beliefs. These differences in beliefs were statistically significant (χ2 = 8.42, df =2, p < 0.05). None of the variables tested were significant with regard to the specific belief that leprosy was due to immoral conduct of the person or due to the consumption of certain foods.

4.2.5. Attitudes towards persons affected by leprosy

The attitudes of the respondents towards persons affected by leprosy were probed with the direct question ‘What would be your reaction towards an unknown person, a friend or a family member with leprosy?’ Those who stated that they would accept an unknown person or friend or colleague or family member affected by leprosy were analyzed by their socio demographic characteristics and beliefs and misconceptions regarding leprosy.

4.2.5.1. Attitudes towards persons affected by leprosy by socio demographic variables of the respondents

The acceptance of an (i) unknown person or (ii) friend or colleague or (iii) family member affected by leprosy was analyzed by selected socio-demographic characteristics of the respondents (Table 4.15).

Acceptance of an unknown person with leprosy

The race, religion and age of the respondents were found to be significantly associated with the acceptance of an unknown person with leprosy. Only half the proportion of Chinese respondents interviewed as compared to the respondents from other races said that they would accept an unknown person affected by leprosy. The

101

Results highest acceptance was seen particularly among the respondents of Islamic faith.

Younger respondents were found to be the least likely to accept an unknown person with leprosy, compared to those above 40 years of age.

Acceptance of a friend or colleague with leprosy

An increasing level of acceptance of a friend affected by leprosy was seen with increasing age of the respondents. Furthermore, a significantly higher proportion of the respondents who were married compared to those who were never married, were also found to be more likely to accept a friend or colleague with leprosy.

Acceptance of a family member with leprosy

The housing status, indicative of the respondents’ socio-economic status, was the only variable found to be significantly associated with the acceptance of a family member affected by leprosy. Although respondents residing in units with four rooms appeared more likely to accept a family member with leprosy, a significant trend was not observed in the level of acceptance and accommodation status of the respondents.

Overall, acceptance of a family member affected by leprosy was high and appeared to be independent of the socio-demographic characteristics of the respondents. In contrast, the acceptance of an unknown person with leprosy was low and found to be associated with the age, religious faith and race of respondents.

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Results

Table 4.15. Respondents’ attitudes towards an unknown person, friend or colleague or a family member with leprosy by socio-demographic variables.

Will accept a patient with leprosy as he or she is Unknown Friend or p Family Independent variables p value p value person colleague value member

No. (%) No. (%) No. (%)

Race Chinese 55 (16.9) 0.01 105 (32.2) 0.07 206 (63.2) 0.18 Malay 12 (32.4) 13 (35.1) 25 (67.6) Indian 12 (32.4) 19 (51.4) 29 (78.4)

Gender Male 39 (19.6) 0.94 67 (33.7) 0.81 123 (61.8) 0.18 Female 40 (19.9) 70 (34.8) 137 (68.2)

Religion Buddhism/Taoism 33 (14.9) 61 (39.1) 140 (63.1) Christian 15 (27.3) <0.05 24 (43.6) 0.21 39 (70.9) 0.42 Islam 13 (35.1) 14 (37.8) 26 (70.3) Hindu/Sikh 8 (28.6) 13 (46.4) 21 (75.0) No religion 10 (17.2) 17 (29.3) 34 (58.6)

Age group (years) ≤ 40 years 34 (14.6) <0.01 67 (28.8) <0.01 153 (65.7) 0.74 >41 years 45 (26.9) 70 (41.9) 107 (64.1)

Housing

≤3 rooms 53 (19.4) 96 (35.2) 166 (60.8) 0.14 0.33 <0.05* 4 rooms 21 (25.6) 30 (36.6) 64 (78.0) ≥ 5 rooms 5 (11.1) 11 (24.4) 30 (66.7)

Marital status Never married 32 (18.5) 0.58 50 (28.9) <0.05 111 (64.2) 0.76 Married 47 (20.7) 87 (38.3) 149 (65.6)

Educational level Primary / No education 18 (18.8) 33(34.3) 55 (57.3) Secondary / Technical / 43 (24.7) 0.06 67 (38.5) 0.19 115 (66.1) 0.16 Junior college Polytechnic / University 18 (13.8) 37 (28.5) 90 (69.2)

* χ2 for trend p =0.55

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Results

4.2.5.2. Attitudes towards persons affected by leprosy by the respondents’ beliefs regarding leprosy

The respondents who stated that they would accept an unknown person or friend or colleague or family member affected by leprosy were analyzed by their beliefs on the cause, spread, cure, occurrence of deformities (Table 4.16).

Acceptance of an unknown person with leprosy

Respondents who believed that leprosy spreads easily and that it was a consequence of immoral conduct were found to show a statistically significant association with decreased willingness to accept an unknown patient affected by leprosy.

Acceptance of a friend or colleague with leprosy

The only belief that was associated with respondents not being willing to accept a friend with leprosy was the belief that leprosy related deformities were inevitable. A significantly higher proportion of respondents were willing to be friends with patients without deformities (61.2 %) than those with deformities (32.8 %). The willingness to accept a leprosy patient was marginally close to significance with the belief that leprosy is easily spread.

Acceptance of a family member with leprosy

In contrast, respondents expressed willingness to accept a family member with leprosy irrespective of their beliefs on the deformities associated with leprosy.

However, beliefs that leprosy was infectious, incurable, and hereditary and that it was

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Results due to immoral conduct or superstitious causes showed a statistically significant association with decreased acceptance of a family member affected by leprosy.

Overall, the belief that leprosy spread easily was consistently found to be significantly or marginally significantly associated with a decreased acceptance in all three categories of affected persons, i.e. unknown person, friend or family member.

Table 4.16. Respondent’s attitudes towards an unknown person, friend or colleague or a family member affected by leprosy by respondents' beliefs.

Will accept a patient with leprosy as he or she is

Unknown Friend or p Family Independent variables p value p person colleague value member value No. (%) No. (%) No. (%)

Leprosy spreads easily 44 (27.7) 0.001 62 (39.0) 117 (73.6) <0.01 0.10 No 35 (14.5) 74 (31.1) 143 (59.3) Yes /Don’t know

Leprosy is curable Yes 37 (21.0) 0.57 65 (36.9) 0.32 129 (73.3) <0.01 No / Don’t know 42 (18.8) 72 (32.1) 131 (58.5)

Leprosy always causes deformities No 54 (23.4) 0.27 92 (42.1) < 0.05 190 (65.4) 0.92 Yes /Don’t know 25 (18.4) 45 (31.4) 70 (64.8)

Leprosy is of hereditary origin No 31 (25.0) 0.08 47 (37.9) 0.30 90 (72.6) <0.05 Yes / Don’t know 48 (17.4) 90 (32.6) 170 (61.6)

Leprosy is due to immoral conduct No 68 (23.8) 0.001 104 (36.4) 0.16 195 (68.2) <0.05 Yes/Don’t know 11 (9.6) 33 (28.9) 65 (57.0)

Leprosy is due to superstitious causes* No 74 (21.0) 0.10 125 (35.4) 0.18 244 (69.1) <0.001 Yes/ Don’t know 05 (10.6) 12 (25.5) 16 (34.0)

* Superstitious causes of leprosy – Leprosy is due to witchcraft, curse or evil spirits.

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Results

4.2.6. Overall attitudes scores

Attitude scores

The respondents' overall attitude score that reflected their attitudes towards having physical and/or social contact with a leprosy patient was determined by the sum of their responses to the selected statements (attitude score; see Chapter 3). The range of the attitude score was 8 - 40. The mean attitude score was 24.1 (± 6.2 SD) and the median was 24. The frequency distribution and the descriptive statistics of the attitude score are given in table 4.17 and figure 4.7.

Kolmogorov-Smirnov (Lilliefor’s) test of normality was carried out to test the assumption that the continuous variable, attitude score was normally distributed. The frequency distribution was not normally distributed (K-S statistic 0.07, p <0.001) and was significantly negatively skewed.

Stigmatising attitude

For the purpose of further analysis, the respondents who agreed or strongly agreed with all statements reporting positive attitudes or acceptance of leprosy patients were categorised as having positive attitude or acceptance towards a person with leprosy (score of 32 - 40). The respondents who disagreed or strongly disagreed or responded neutral to these statements were categorised as having negative or stigmatising attitudes (score of 31 or less) towards a patient with leprosy. Accordingly,

87.8 % of the respondents were found to have negative attitude (stigmatising attitude) whereas 12.3 % had a positive attitude (acceptance) towards those affected by leprosy.

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Results

Table 4.17. Descriptive statistics of the attitude score.

Descriptives Statistics

Total 400 Mean 24.1 (23.5-24.7) Median 24.0 Standard deviation 6.2 Range 8 - 40 Skewness -0.14 (± 0.12 SE) Kurtosis -0.13 (± 0.24 SE)

100

Frequency 0 7.5 12.5 17.5 22.5 27.5 32.5 37.5 10.0 15.0 20.0 25.0 30.0 35.0 40.0

Attitude score

Figure 4.7. Frequency distribution and normal curve of attitude score.

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Results

4.2.7. Median attitude scores

Attitudes of the respondents by socio demographic variables

Table 4.18 gives the median scores of attitudes for selected variables. The respondents living in an accommodation with five or more rooms had significantly more negative attitude towards leprosy than those living in accommodation with fewer rooms. Attitudes towards leprosy were found to be more positive among the respondents with primary or no education compared to those with higher levels of education. It was also found that an overall low knowledge of leprosy among the respondents was significantly associated with poor attitudes towards leprosy patients.

Although variables such as an older age (> 61years) and prior acquaintance with a patient with leprosy showed better median attitudes, these differences were not found to be statistically significant.

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Results

Table 4.18. Comparison of attitude median scores by socio-demographic variables and acquaintance with a patient with leprosy.

Socio demographic variables No. Median p Value*

Sex Male 199 24.0 p = 0.75 Female 201 24.0

Age groups# < 40 years 233 24.0 p = 0.15 41 – 60 years 133 24.0 >61 years 34 28.0

Ethnicity Chinese 326 24.0 p = 0.54 Malay 37 24.0 Indian 37 24.0

Religion Buddhism/Taoism 222 24.0 Christianity 55 24.0 p = 0.58 Islam 37 24.0 Hinduism/Sikh 28 24.0 No religion 58 24.0

Marital status Never married 173 24.0 p = 0.15 Married 227 24.0

Education None /Primary 96 25.0

ITE/Secondary/ Junior college 174 24.0 p < 0.05 Polytechnic/ University 130 24.0

Accommodation <= 3 rooms 273 24.0 4 rooms 82 24.0 p < 0.05 >= 5rooms 45 23.0

Knowledge score Low knowledge 177 24.0 p = 0.001 Moderate knowledge 124 25.0

High knowledge 99 25.0

Acquaintance with a Known a patient with leprosy 48 26.0 patient‡ Seen but not known patient p = 0.25 90 24.0 Not seen or known a patient 262 24.0

* Mann-Whitney and Kruskal-Wallis Test for significance # ≤ 60 vs. > 61 years p = 0.07 ‡ Known vs. not known a patient p = 0.24

Attitudes of the respondents by the beliefs regarding the causes of leprosy

Table 4.19 gives the median scores of the attitudes of the respondents with respect to their beliefs on the causes of leprosy. The respondents who believed that leprosy

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Results was due to impure blood or due to unclean environment had significantly more negative attitudes towards patients with leprosy than those who did not harbour these beliefs. The belief that leprosy was due to immoral conduct also showed a significant difference in the attitudes between those who believed leprosy was due to immoral conduct and those who did not.

Table 4.19. Comparison of attitude median scores by the respondents beliefs regarding the causes of leprosy.

Independent variables No. Median p Value* Causes of leprosy

Germs Yes 260 24.0 p = 0.21 No 140 24.0

Witch craft No 342 24.0 p = 0.06 Yes 58 24.0

Evil spirits No 346 24.0 p = 0.08 Yes 54 24.0

Curse by god No 324 24.0 p = 0.10 Yes 76 24.0

Immoral Conduct No 286 24.0 p < 0.05 Yes 114 24.0

Sex with a prostitute No 197 24.0 p = 0.06 Yes 203 24.0

Punishment for sins No 325 24.0 p = 0.11 Yes 75 24.0

Vitamin deficiency No 171 24.0 p = 0.55 Yes 229 24.0

Cold food No 293 24.0 p = 0.92 Yes 107 24.0

Hot food No 294 24.0 p = 0.82 Yes 106 24.0

Impure blood No 170 25.0 p = 0.001 Yes 230 24.0

Unclean environment No 147 25.0 p= 0.001 Yes 253 24.0 * Mann-Whitney U test for significance Superstitious beliefs p= 0.06

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Results

Attitudes of the respondents by the beliefs regarding the transmission of leprosy

The attitude scores of the respondents analysed with respect to their beliefs on the transmission of leprosy is given in Table 4.20. The respondents who believed that personal contact such as sharing items, shaking hands, sharing food and sitting close to a patient could transmit leprosy had significantly more negative attitude towards leprosy compared to those who do not hold these beliefs. Those who harboured the beliefs that leprosy could be spread by soil or by air also showed a significantly higher stigmatising attitude.

Table 4.20. Comparison of attitude median scores by the respondents beliefs regarding the transmission of leprosy.

Independent variables No. Median p Value* Transmission of leprosy

Sharing personal items with a patient No 95 27.0 p < 0.001 Yes 305 24.0

Shaking hands with a patient No 264 25.0 p < 0.001 Yes 136 21.0

Sitting close to a patient No 269 25.0 p < 0.001 Yes 131 21.0

Sharing food with a patient No 223 25.0 p < 0.001 Yes 177 23.0

By air No 216 24.0 p < 0.05 Yes 184 24.0

By soil No 258 25.0 p < 0.001 Yes 142 24.0

By insects No 262 24.0 p = 0.07 24.0 Yes 138

* Mann-Whitney U test for significance

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Results

Attitudes of the respondents by the misconceptions regarding leprosy

Table 4.21 gives the median scores of the attitudes of the respondents with respect to their misconceptions regarding leprosy. Those who believed that leprosy spread easily, leprosy was incurable and that deformities in leprosy were inevitable had highly significant negative attitudes compared to those who did not hold these misconceptions.

Table 4.21. Comparison of attitude median scores by misconceptions regarding leprosy.

Independent variables No. Median p Value*

Leprosy spreads easily No 159 24.0 p < 0.001 Yes 241 24.0

Leprosy is incurable No 176 25.0 p < 0.001 Yes 224 24.5

p < 0.001 Leprosy always causes deformities No 107 26.0 Yes 293 24.0

Leprosy is hereditary No 124 23.0 p = 0.07 Yes 276 24.0

* Mann-Whitney U test for significance

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Results

4.2.8. Relationship between overall knowledge, age, education or accommodation of the respondents and attitude score.

Spearman’s correlation (r) was calculated to assess the relationship between knowledge of leprosy, age, level of education or accommodation status of the respondents and attitude score (Table 4.22). Although statistically significant, a weak positive correlation was found between the knowledge of leprosy and the attitudes of the respondents. A significant but weak negative correlation was found between the educational level and attitudes and the accommodation status and attitudes of the respondents.

Table 4.22. Correlation between knowledge, age, education, accommodation of the respondents and attitudes scores.

Scores rs p Value

Knowledge vs. Attitudes 0.25 p < 0.001

Age vs. Attitudes 0.07 p = 0.17

Education vs. Attitudes - 0.10 p < 0.05

Accommodation vs. Attitudes -0.13 p < 0.01

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Results

4.2.9. Stigmatising attitudes towards leprosy

Stigmatising attitudes of the respondents with respect to the combined effects of mediating variables

Table 4.23 shows the significant association of stigmatising attitudes of the respondents towards leprosy with combinations of misconceptions regarding leprosy.

Although the misconceptions that leprosy was hereditary or due to superstitious causes or was incurable did not individually show any association with stigmatising attitudes of the respondents, these misconceptions were found to be significantly associated with stigmatising attitudes when analysed in combination with the beliefs that leprosy was contagious, always caused deformities and was a consequence of immoral conduct. The misconceptions that leprosy-related deformities are inevitable or leprosy is incurable or that leprosy is caused by immoral conduct showed highly significant association with negative attitudes when held in combination with the belief that leprosy spreads easily. The highest prevalence rate (PR = 1.17) was seen with those who held a combination of beliefs that leprosy spreads easily, was incurable and that deformities were inevitable in leprosy.

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Results

Table 4.23. Prevalence of stigmatizing attitudes of the respondents by combinations of misconceptions regarding leprosy.

n (%) with stigmatising attitudes

Independent variables* Prevalence ratio No. (%) 95 % CI p Value

Spreada + incurableb

No 164 (81.2) 1 <0.001 Yes 187 (94.4) 1.16 (1.08-1.25)

Spread + deformitiesc

No 204 (82.9) 1 <0.001 Yes 147 (95.5) 1.15 (1.08-1.23)

Spread + Hereditary d

No 193 (84.3) 1 < 0.05 Yes 158 (92.4) 1.09 (1.02-1.17)

Spread + immoral conducte 1 No 263 (84.8) 1.15 (1.08-1.21) 0.001 Yes 88 (97.8)

Spread + superstitious beliefsf No 314 (86.5) 1 Yes 37 (100.0) 1.16 (1.11-1.20) <0.05

Spread + incurable + deformities No 221 (83.1) 1 Yes 130 (97.0) 1.17 (1.09-1.24) <0.001

Spread + incurable + heredity No 244 (84.7) 1 Yes 107 (95.5) 1.13 (1.05-1.20) <0.01

Spread + incurable + immoral conduct No 284 (85.5) 1 Yes 67 (98.5) 1.15 (1.19-1.21) <0.01

Spread + incurable + superstitious beliefs No 316 (86.6) 1 Yes 35 (100.0) 1.15 (1.12-1.20) <0.05

Spread + deformities + hereditary

No 220 (84.9) 1 <0.05 Yes 131 (92.9) 1.09 (1.02-1.17)

Spread + deformities + immoral conduct No 272 (85.0) 1 Yes 79 (98.8) 1.16 (1.10-1.22) 0.001

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Results

Table 4.23. Continued.

Table 4.23. Prevalence of stigmatizing attitudes of the respondents by combinations of misconceptions regarding leprosy.

n (%) Stigmatising attitudes

Independent variables Prevalence ratio No. (%) 95 % CI P Value

Spread + deformities + superstitious beliefs No 314 (86.5) 1 Yes 37 (100.0) 1.16 (1.11-1.20) <0.05

Spread + heredity + immoral conduct No 279 (85.6) 1 Yes 72 (97.3) 1.14 (1.07-1.20) <0.01

Spread + hereditary + superstitious beliefs No 316 (86.6) 1 Yes 35 (100.0) 1.15 (1.10-1.20) < 0.05

Incurable + deformities No 177 (83.1) 1 Yes 174 (94.1) 1.12 (1.04-1.20) <0.01

Incurable+ immoral conduct No 272 (85.8) 1 Yes 79 (95.2) 1.10 (1.03-1.18) <0.05

Incurable + superstitious beliefs No 312 (86.7) 1 Yes 39 (97.5) 1.13 (1.06-1.20) <0.05

Incurable + deformities + immoral conduct No 279 (85.8) 1 Yes 72 (96.0) 1.11 (1.04-1.9) <0.05

Incurable + deformities + superstitious beliefs No 312 (86.4) 1 Yes 39 (100.0) 1.15 (1.11-1.20) <0.05

Incurable + hereditary + superstitious beliefs No 315 (86.5) 1 Yes 36 (100.0) 1.15 (1.11-1.20) <0.05

Incurable + immoral + superstitious beliefs No 315 (86.5) 1 Yes 36 (100.0) 1.16 (1.11-1.20) <0.05

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Results

Table 4.23 Continued.

Table 4.23. Prevalence of stigmatizing attitudes of the respondents by combinations of misconceptions regarding leprosy.

n (%) Stigmatising attitudes Independent variables Prevalence ratio No. (%) 95 % CI P Value

Deformities + immoral conduct No 256(85.3) 1 Yes 95 (95.0) 1.11 (1.04-1.19) 0.01

Deformities + superstitious beliefs No 310(86.6) 1 Yes 41 (97.6) 1.13 (1.06-1.20) < 0.05

Deformities + hereditary + immoral conduct No 272 (85.8) 1 Yes 79 (95.2) 1.10 (1.03-1.18) <0.05

Yes = believed in both misconceptions No = did not believe in both misconceptions or believed in one of the misconception

*Only significant variables are listed.

Spreada = leprosy spreads easily; Incurableb = leprosy is incurable; Deformitiesc = leprosy always causes deformities; Hereditaryd = leprosy is hereditary; Immoral conducte = leprosy is caused by immoral conduct; Superstitious beliefsf = Leprosy is due to superstitious causes such as curse, witch craft or evil spirits

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Results

4.3. STRATIFIED ANALYSIS

Analysis of the association of stigmatising attitude of the respondents with their beliefs on leprosy was conducted after stratification by the respondents’ age group as this was the only variable which, when analysed as a categorical variable, showed a significant association with attitude.

4.3.1. Stratified analysis by age group

The study population was stratified by age groups (≤ 40 years and > 40 years) in order to carry out an analysis of the association of stigmatising attitudes of the respondents with beliefs and misconceptions as age could be a confounder (Table

4.24). Overall, stigmatising attitudes were present among 90.6% of the respondents belonging to the ≤ 40 years age groups and among 83.8% of those in the > 40 years age groups (p < 0.05).

Respondents belonging to both strata, who believed that leprosy spread easily and deformities were inevitable in leprosy or that leprosy spread easily and was due to immoral conduct or those who held a combination of all three beliefs showed significantly high stigmatising attitudes when compared to those who did not harbour these misconceptions. In addition, the misconception that leprosy was incurable was associated with stigmatising attitudes when held in combination with the misconception that deformities were inevitable in leprosy or the misconceptions that leprosy spread easily and deformities were inevitable in leprosy or misconceptions that leprosy spread easily and was due to immoral conduct.

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Results

With these exceptions, the association between stigmatising attitudes of the respondents among the two strata of age groups and misconceptions varied considerably. Among those above 40 years of age, stigmatising attitude was associated with the misconception that leprosy spread easily when held together with the misconceptions that leprosy was incurable, was hereditary or the combination of the three misconceptions. The misconceptions that leprosy spread easily and that it was hereditary in combination with the misconceptions that deformities were inevitable in leprosy or a consequence the immoral conduct of the affected person gave rise to significantly high stigmatising attitudes. The highest prevalence ratio was found for the group which held a combination of beliefs on the spread and incurability of leprosy and spread, incurability and deformities of leprosy (PR = 1.27).

Among the respondents who were less than 40 years old, those who believed that deformities were inevitable in leprosy and leprosy was due to immoral conduct or leprosy was hereditary and due to immoral conduct or held the combination of the three misconceptions showed significantly high stigmatising attitudes. In addition, the misconception that leprosy was incurable was associated with stigmatising attitudes only when held in combination with the misconceptions that deformities were inevitable in leprosy and that leprosy was due to immoral conduct. Superstitious beliefs regarding the origin of leprosy did not give rise to stigmatising attitudes even when in association with other misconceptions regarding leprosy.

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Results

Table 4.24. Stratified analysis of stigmatising attitudes by age groups (≤ 40 years and > 41 years).

Stigmatising attitudes ≤40 years > 41 years Independent variable n=211 n=140 Prevalence ratio Prevalence ratio No. (%) No. (%) 95% CI 95% CI

Spread + incurable No 124 (87.9) 1 80 (76.2) 1 Yes 87 (94.6) 1.08 (0.99-1.16) 60 (96.8) 1.27 (1.13-1.43) 0.09 <0.001

Spread + deformities No 96 (85.0) 1 68 (76.4) 1 Yes 115 (95.8) 1.13 (1.04-1.23) 72 (92.3) 1.21 (1.06-1.38) <0.01 <0.01

Spread + Hereditary No 121 (89.6) 1 72 (76.6) 1 Yes 90 (91.8) 1.03 (0.94-1.11) 68 (93.2) 1.22 (1.07-1.38) 0.57 <0.01

Spread + immoral conduct No 161 (88.5) 1 102 (79.7) 1 Yes 50 (98.0) 1.11 (1.04-1.18) 38 (97.4) 1.22 (1.11-1.35) <0.05 <0.01

Spread + incurable + deformities 1 88 (77.2) 1 No 133 (87.5) 1.10 (1.02-1.19) 52 (98.1) 1.27 (1.14-1.41) Yes 78 (96.3) <0.05 0.001

Spread + incurable + 1 heredity 151 (89.3) 93 (78.2) 1 1.05 (0.97-1.18) No 60 (93.8) 47 (97.9) 1.25 (1.13-1.39) 0.31 Yes 0.01

Spread + incurable + immoral conduct Yes 175 (88.8) 1 109 (80.7) 1 No 36 (100.0) 1.13 (1.07-1.18) 31 (96.9) 1.12 (1.08-1.33) <0.05 <0.05

Spread + deformities + immoral conduct Yes 167 (88.4) 1 105 (80.2) 1 No 44 (100.0) 1.13 (1.08-1.19) 35 (97.2) 1.21 (1.10-1.34) <0.05 0.01

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Results

Table 4.24 continued.

Table 4.24. Stratified analysis of stigmatising attitudes by age groups (≤ 40 years and > 41 years).

Stigmatising attitudes ≤ 40 years > 41 years Independent variable n=214 n=144 Prevalence ratio Prevalence ratio No. (%) No. (%) 95% CI 95% CI

Spread + deformities + hereditary Yes 134 (88.7) 1 86 (79.6) 1 No 77 (93.9) 1.06 (0.99-1.15) 54 (91.5) 1.15 (1.02-1.30) 0.20 <0.05

Spread + heredity + immoral conduct Yes 175 (90.7) 1 110 (82.7) 1 No 39 (97.5) 1.08 (1.01-1.15) 34 (100.0) 1.21 (1.12-1.31) 0.15 < 0.01

Incurable + deformities No 109 (86.5) 1 68 (78.2) 1 Yes 102 (95.3) 1.10 (1.02-1.20) 72 (90.0) 1.15 (0.01-1.32) <0.05 <0.05

Incurable + deformities + immoral conduct No 173 (88.7) 1 106 (81.5) 1 Yes 38 (100.0) 1.13 (1.07-1.19) 34 (91.9) 1.13 (0.99-1.28) < 0.05 0.13

Deformities + immoral conduct No 158 (87.8) 1 98 (81.7) 1 Yes 53 (100.0) 1.14 (1.18-1.20) 42 (89.4) 1.09 (0.96-1.25) <0.01 0.22

Deformities + hereditary + immoral conduct 1 No 168 (88.4) 1 104 (81.9) 1.10 (0.96-1.25) Yes 43 (100.0) 1.13 (1.07-1.19) 36 (90.0) 0.22 <0.05

Hereditary + immoral conduct 1 1 No 164 (88.6) 100 (82.0) 1.11 (1.03-1.18) 1.08 (0.95-1.24) Yes 47 (97.9) 40 (82.0) 0.05 0.28

*Only significant variables are listed.

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4.4. MULTIPLE REGRESSION ANALYSIS

The results of the multiple regression analysis of correlates of attitudes towards leprosy are shown in Table 4.25. Natural logarithmic transformation of the variable - attitude score, was carried out prior to carrying out the multiple regression analysis.

All the variables found to be associated with the attitudes towards leprosy patients

(p<0.05) on preliminary univariate analysis were entered into the regression model with attitude score as the dependent variable. The following variables were entered into the model:

1. Socio-demographic variables of the respondents: (i) Age; (ii) Education; (iii)

Accommodation.

2. Overall knowledge of leprosy (Knowledge score).

3. Leprosy is caused by germs (Yes = 1 / No = 0).

4. Misconceptions regarding leprosy: (i) Leprosy spreads easily; (ii) Leprosy is

incurable; (iii) Deformities are inevitable in leprosy (Yes = 0 / No = 1).

5. Beliefs regarding the cause of leprosy: (i) Immoral conduct; (ii) Impure blood (iii)

Unclean environment (Yes = 0 / No = 1).

6. Beliefs regarding the transmission of leprosy (i) Sharing personal items with a

patient; (ii) Sitting close to a patient; (iii) Shaking hands with a patient (iv) Sharing

food with a patient; (v) Air; (vi) Soil (Yes = 0 / No = 1).

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Results

Table 4.25. Relationship of socio demographic variables and mediating variables to respondents’ attitudes towards leprosy.

Standardized Regression Independent variables * t statistics p value Coefficients β

Leprosy can spread by shaking 0.23 4.448 <0.001 hands with a patient

Knowledge score 0.12 2.413 <0.05

Accommodation status -0.10 -2.090 <0.05

Leprosy can spread by sharing 0.10 2.005 <0.05 items with a patient

* Only those variables that were significantly correlated with attitudes are listed.

Multiple R (correlation coefficient) = 0.361 R2 = 0.13 Adjusted R2 = 0.121

The variables found to be significantly correlated with attitudes were (i) the knowledge score, (ii) accommodation status of the respondents and (iii) the beliefs that leprosy was spread by sharing personal items or (iv) by shaking hands with a person with leprosy. Although only four variables entered into the multiple regression analysis model showed significant correlation with attitudes of the respondents, they explained only 13 % of the variation.

A lower attitude score indicates more negative attitude and a higher score indicates more positive attitude towards leprosy. The accurate belief that leprosy cannot be transmitted by shaking hands with a patient was the most important correlate contributing to a positive attitude towards leprosy patients. In addition, positive attitudes were also present among those who believed that leprosy could not be spread by sharing items with a leprosy patient. The increased knowledge score was positively

123

Results correlated with the attitude score, indicating that better knowledge regarding leprosy gave rise to better attitudes towards leprosy patients. A better accommodation status of the respondents, however, showed a negative correlation with the attitude score, meaning that the respondents of a higher socio economic status had more stigmatising attitudes towards those affected by leprosy.

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Chapter 5

Discussion and Conclusions

125 5.1. MAIN FINDINGS

The current study, which assesses community knowledge, attitudes and practices towards leprosy in Singapore, was carried out in the Constituency of Ang Mo

Kio, which represented a multi-ethnic, literate, urban community of Singapore.

Overall, 55.8 % of the respondents interviewed had moderate to high knowledge of leprosy. Although most respondents were aware that germs caused leprosy, many of these respondents also held other multiple beliefs regarding the causation of the disease. A significant number of the respondents (41.3 %) believed that leprosy spread easily, 48.5 % believed leprosy-related deformities to be inevitable and 32.3 % believed leprosy to be incurable. With increasing age of the respondents, the knowledge of signs and symptoms of leprosy and the fact that it was caused by germs also increased. However, the commonest misconception that leprosy was hereditary was also found to increase with age. Fewer respondents who were young or had had a higher level of education believed leprosy to be hereditary. On direct questioning, the respondents who reported that they would avoid a patient with leprosy, stated the “fear of being infected” and “fear of leprosy-related deformities” as the major causes for avoidance. More (65.5 %) respondents were willing to accept a family member with leprosy, compared to only 34.3 % and 19.8 %, respectively, who would accept a friend or a stranger with leprosy. Based on a scoring system devised by this study, 87.8 % of the respondents were found to have stigmatizing attitudes towards leprosy.

Stigmatising attitudes were high among the respondents who had low overall knowledge of leprosy. The misconceptions that leprosy spread easily, it was incurable and caused inevitable deformities were most strongly associated with stigmatising attitudes. The misconceptions regarding leprosy varied among respondents belonging

126 to younger and older age groups (≤40 and >40 years) with more significant associations between misconceptions and stigmatising attitudes observed in the older age group. The correct beliefs that leprosy was not transmitted by shaking hands or sharing personal items with a person with leprosy were significantly correlated with a positive attitude towards the disease. A higher knowledge score was also significantly correlated with a better attitude score. However, better accommodation status of the respondents was correlated with negative attitudes.

5.2. LIMITATIONS OF THE PRESENT STUDY

1. The study is a cross-sectional survey conducted among residents of the Ang Mo

Kio Constituency in northern Singapore. The selected area of study varied in the

ethnic and religious composition from Singapore’s national statistics. The national

figures for the year 2000 (Census of Population) showed that the resident

population of Singapore was represented by 76.8 % Chinese, 13.9 % Malays and

7.9 % Indians and 1.4 % of other minor ethnic groups. Our sample population,

however, was composed of 81.5 % Chinese, 9.3 % Malays and 9.3 % of Indian and

other ethnicities. Therefore, the composition of the study population may not be

entirely representative of the actual population of Singapore, which may in turn

affect the generalisability of the findings of the study.

2. The non-participation of selected respondents or the inability on the part of the

interviewers to locate the selected respondents may have contributed to non-

response bias in this study. The respondents in the present study lived in

accommodation units with three or fewer rooms (68.3 %), four rooms (20.5 %) and

127 five or more rooms (11.3 %). This distribution of accommodation status was

comparable to that of the study population which was 62.8 % (≤ 3 rooms), 26.6 %

(4 rooms) and 10.5 % (≥ 5 rooms) (p = 0.98). Furthermore, non-response was

minimised by visiting the accommodation units on three separate occasions at

different times of the day. Although some non-respondents declined to participate

citing a lack of time as an excuse or did not provide any explanation for non-

participation, it is possible that some may have had negative feelings towards

leprosy to the extent that they were unwilling to discuss it. It is also possible that

since leprosy is not perceived by many as a serious public health problem in

Singapore, the non-respondents were not motivated to respond.

3. Face to face interviews are an effective method to explore the knowledge, attitudes

and practices of the respondents. However, a structured–questionnaire-interview

may be somewhat limited in accurately assessing an individual’s attitudes and

beliefs.

4. Social disability bias: This study looked into the attitudes of the respondents

regarding leprosy. Instances where some respondents may have given a response

that they felt would be more acceptable to the interviewer rather than reveal their

actual attitudes may also be a limiting factor in this study. This limitation could

have been overcome by using self-administered or audio-assisted interview

questionnaires for data collection.

5. Interviewer bias: Questions that probed the attitudes of the respondents may have

been viewed by some respondents as being too sensitive or of a personal nature.

128 With this regard, the approach and skill of the interviewer would be crucial in

obtaining accurate responses from the respondents and any shortcoming on the part

of the interviewer would have given rise to some degree of interviewer bias. The

study attempted to minimize this error by using well-trained interviewers,

adequately familiarised with the contents of the questionnaire and the process of

administering it.

5.3. INTERPRETATION OF FINDINGS

KNOWLEDGE OF LEPROSY

Overall knowledge of leprosy

The knowledge score of leprosy which assessed the respondents’ knowledge regarding the cause, transmission, symptoms and treatment of leprosy found that, overall, over half (55.8 %) the respondents interviewed had moderate to high knowledge of leprosy (i.e. their overall knowledge score was equal to or greater than the median score). Specifically, 5.8 % answered all the questions correctly. A study in

India (Raju and Kopparty, 1995) found that 35.7 % – 49.7 % of respondents had high overall knowledge regarding leprosy based on a scoring system devised by that study.

Furthermore, De Stigter et al. (2000) have concluded that 77 % of the community members in their study in Nepal had satisfactory knowledge of the disease. The relative gap in knowledge regarding leprosy among the respondents in this study, in spite of the high literacy rate in Singapore, may be due to the low prevalence (0.1 per

100,000 population) of leprosy in Singapore (Epidemiological News Bulletin, 2003).

129 This is corroborated by evidence that only 34.5 % of the participants in the study had either known or seen a patient with leprosy.

Knowledge on cause and signs and symptoms of leprosy

The current study found that 65 % of the respondents were aware that leprosy was caused by germs. This was lower than that documented in Myanmar (85.7 - 92.5

%) (Myint et al., 1992). Recognition of the early signs and symptoms of leprosy is still an important factor in diagnosing a case of leprosy which is an imperative step in the elimination or eradication of leprosy. Overall, 64.8 % of the respondents in the present study knew of at least three or more symptoms of leprosy. This was comparable to a study conducted in India by Raju and Kopparty (1995) which reported that 50 – 64 % of the study population had satisfactory knowledge of the signs and symptoms of leprosy. The comparison is striking considering that leprosy is still a sizable public health problem in India where there is an ongoing awareness program whereas the target of the leprosy elimination campaign has long been achieved in

Singapore.

The current study revealed that with increasing age of the respondents, their knowledge of the signs and symptoms of leprosy as well as awareness that leprosy is caused by germs, increased. Since leprosy was a serious public health problem in the early years, especially during and prior to the 1970’s (Epidemiological News Bulletin,

2001), older respondents in this study were more likely to have received health education messages and were therefore more knowledgeable on leprosy.

130 A statistically significant higher proportion of male than female respondents as well as a higher proportion of those of Christian faith than respondents belonging to other religious faiths also had “high” knowledge of the symptoms of leprosy. A community based study by Crook et al., (1991) and a study among leprosy patients by

Rao et al., (1996) in India similarly reported that awareness of the symptoms of leprosy was lower among female than male respondents.

Management of leprosy

The intense stigma associated with leprosy compelled the segregation and confinement of patients in leprosariums or “leper colonies” in the past (Browne, 1975).

On questioning the respondents regarding the practice of segregation of leprosy patients, the current study found that 36 % still believed in segregation or isolation of the patient from the society. Studies in India have also found that many communities favour some form of segregation of persons affected by leprosy (Raju and Kopparty,

1995; Shetty et al., 1985). Despite current scientific evidence that leprosy is not highly contagious as previously feared, the present study found that a substantial proportion of the respondents still believed in the segregation of leprosy patients, clearly indicating a need for health education that promotes a favourable change in attitudes.

BELIEFS AND MISCONCEPTIONS

Leprosy stigma arose as an instinctive social reaction to what was perceived as a contagious, mutilating and incurable disease (Jopling, 1991).

131 Misconceptions regarding the cause of leprosy

The current study found that although two thirds of the respondents were aware that leprosy was caused by germs, many also held other (multiple) beliefs regarding the causation of the disease. This pattern has also been reported by other studies in

Asia and Africa (Chen, 1986; Gerochi, 1986; Van De Weg et al., 1998).

Misconceptions regarding the cause of leprosy are one of the most compelling factors that influence a community’s health seeking behaviours and determine their attitudes towards those affected by the disease (Kumaresan and Magnu, 1994a). Hence, it is important to study the beliefs and misconceptions associated with leprosy before appropriate interventions can be planned.

The commonest beliefs regarding the cause of leprosy that were prevalent among the respondents were that it was hereditary (46.8 %) and due to “impure blood”

(34.8 %). Beliefs of congenital transmission of leprosy have also been reported by

Tekle-Haimanot et al., in Ethiopia (1992). Other beliefs cited by the respondents in the present study regarding the cause of leprosy included unclean environment, vitamin deficiency, consumption of ‘cooling’ or ‘heaty food’, immoral behaviour as well as superstitious beliefs such as “punishment for the sins of ancestors”, divine punishment or curse, witchcraft and evil spirits. A study in Malaysia also found similar beliefs to be prevalent mainly among the Chinese population, with “physical contact with prostitutes” and “immoral behaviour” being most commonly attributed to the cause of leprosy (Chen, 1986).

The present study found overall similarity in many of the misconceptions pertaining to leprosy that were prevalent among the respondents of different socio-

132 demographic characteristics. This may reflect the integration of multicultural values in

Singapore. However, the belief that leprosy was hereditary showed variation, with significantly fewer Indian respondents holding this belief compared to other ethnic groups. Other studies have shown that beliefs may vary between different ethnicities and religious faiths within a community (Tekle-Haimanot et al., 1992). It was found that increasing age and decreasing level of education of the respondents were highly significantly associated with the belief that leprosy was hereditary. In accordance, a study in Tanzania (Van den Broek et al., 1998), also found that the education contributed to alleviating stigmatising beliefs regarding leprosy.

Misconceptions regarding transmission of leprosy

In the current study, a significant number (41.3 %) of the respondents believed that leprosy spread easily. Similar fears of contagion have been documented in studies from Mangalore, India (Shetty et al., 1985) and Ethiopia (Tekle-Haimanot et al., 1992) which showed that 53 - 64 % of the population interviewed were of the belief that leprosy was infectious. The belief that leprosy spreads easily was significantly high among the married respondents. This belief was less common among respondents who were less than 40 years of age and this difference was close to statistical significance.

A significant proportion of the respondents in this study believed that the mode of transmission of leprosy was by casual contact such as sharing personal items

(54.3 %), skin contact (37 %), sharing food (24.8 %), shaking hands (17.8 %) or sitting beside (17.3 %) a patient with leprosy. Some respondents also believed that leprosy could be transmitted by sexual contact with a patient (27 %) or prostitutes (27 %). In keeping with the misconception that leprosy was hereditary, 51.5 % said that it could

133 be transmitted from mother to infant. In concurrence with the current study, other studies have also reported that direct contact with a patient, including sexual contact, was believed to be the main mode of transmission of leprosy (Shetty et al., 1985;

Tekle-Haimanot et al., 1992).

Misconceptions regarding the curability of leprosy

Although three quarters of the respondents (78.5 %) in the current study reported that the disease could be treated with anti-leprosy drugs, 32.3 % were also of the view that leprosy was incurable. Similar beliefs were prevalent among the respondents in a study in Bangladesh where 46 % stated that leprosy was incurable

(Croft and Croft, 1999). It is possible that some of the respondents who believed leprosy to be incurable may have wrongly associated the “incurability” of the disease with the permanent deformities sustained as a consequence of delayed treatment seen among some of the cured patients in the society (Berkri et al., 1998).

Misconceptions regarding deformities in leprosy

It has been wrongly perceived that visible deformities were inevitable in the progression of leprosy (De Stigter et al., 2000). In urban Guyana, leprosy was seen as a process of progressive and irreversible deterioration by many (61 %) (Cook, 1982) and in Myanmar, most (85 %) respondents perceived deformities in leprosy to be inevitable (Myint et al., 1992). The present study also found that although 70.5 % of the respondents were aware of the disfigurement and deformities associated with leprosy, comparatively fewer respondents (48.5 %) believed that the deformities were inevitable. This may perhaps be due to the fewer cases of leprosy-related deformities

134 in Singapore as a result of timely medical intervention and follow up or alternatively, be simply due to the lack of familiarity of the respondents with the disease.

ATTITUDES TOWARDS LEPROSY

Reasons for avoidance of a person with leprosy

On direct questioning, the present study found that of the respondents (33.8 %) who said that they would avoid a patient with leprosy, 88.1 % were of the belief that

“being near a person with leprosy” would infect them. The fear of leprosy-related deformities was also cited as another common reason (66.7 %) for avoidance. In contrast, only 22.5 % of the respondents who said they would not avoid someone with leprosy were of the opinion that leprosy was infective. Other studies have also found these two factors to be important in influencing public attitudes towards leprosy patients (Myint et al. 1992; De Stigter et al., 2000).

Acceptance of an unknown person, friend or colleague or a family member with leprosy

The present study attempted to identify possible differences in the attitudes of the respondents towards an unknown person or a friend or colleague of the respondent or a member of the respondent’s own family afflicted with leprosy. Although 65.5 % of the respondents were willing to accept a family member with leprosy, only 34.3 % and 19.8 %, respectively, said that they would accept a friend or colleague or an unknown person similarly affected. The association between the belief that leprosy spread easily and non-acceptance of all three categories of persons affected by leprosy by the respondents, was significant or marginally close to significance. In addition, the

135 belief that leprosy was due to immoral conduct was found to be associated with the negative attitudes towards an unknown person with leprosy and the misconception that

“leprosy-related deformities were inevitable” was associated with a respondent not accepting a friend with leprosy.

The association of the belief that leprosy spread easily with non-acceptance is in concurrence with previous reports that the fear of contagion was more likely to lead to rejection than any other affective domain (Jones et al., 1994). It has also been reported that when the perceived cause of a disease is presumed to be beyond the volitional control of the affected person, then he or she is likely to be treated with pity in contrast to where the cause is perceived to be under the patient’s voluntary control

(Bainson and Van Den Borne, 1998). This may likely explain the association between the belief that leprosy was due to immoral conduct and rejection of an unknown person with leprosy.

Age was associated with the acceptance of a friend or colleague affected by leprosy. Increasing acceptance was seen with increasing age of the respondents. It was also found that Chinese respondents were significantly less willing, while those of

Islamic faith were more willing, to accept an unknown person with leprosy. Studies conducted in northern Nigeria also found that Muslim respondents were more tolerant towards leprosy patients than respondents of other faiths (Shiloh, 1965; Awofeso,

1995). It has previously been reported that religion plays a significant role in determining a community’s attitudes towards leprosy with negative attitudes being more common in societies where the disease is explained as a transgression against divinity. Consequently, followers of Islam do not display much resentment towards

136 leprosy patients since they believe that every outcome, success or failure, is ordained by God (Bainson and Van Den Borne, 1998).

Specific attitudes of the respondents to personal or social contact with persons with leprosy

The current study explored various scenarios depicting possible interactions of respondents with a person affected by leprosy, in order to assess their willingness to associate, at a personal or social level, with the leprosy patient. Although, most respondents (75.3 %) said that they would feel sorry or pity for the patient and “be willing to help a patient in need” (64.8 %) or “be friends with a leprosy patient”

(55.8%), the respondents showed less favourable attitudes when it came to personal contact with leprosy patients such as sharing food (39.5 %), shaking hands (39.5 %), buying food from a leprosy patient (34 %), housing a leprosy patient (21.3 %) or sitting beside a leprosy patient (38.1 %) as well as being willing to let their children play with a leprosy patient’s child (37.3 %). Less than half the respondents were willing to share the work environment (43.8 %) with a patient. Only 25.8% of the respondents were willing let their family member marry a patient cured of leprosy.

Overall, most were willing to accept social contact with leprosy patients including their sharing public transport (63.8 %) and participation at social functions (57.8 %).

Other studies in many parts of the world (Kumar et al., 1983; Chen, 1986;

Tekle-Haimanot et al., 1992; Hilary, 2000) have reported largely negative community attitudes towards leprosy patients. For instance, only 17 % of a community in Ethiopia were willing to work together with a leprosy patient (Tekle-Haimanot et al., 1992) while as few as 1 - 25 % of the respondents in an Indian study were willing to share

137 food with a leprosy patient (Raju and Kopparty, 1995). Another study (Kumar et al.,

1983) found that over 75 % of the study population were opposed to even casual contact with leprosy patients. In contrast, the present study revealed that leprosy patients in Singapore do not face outright segregation and ostracism. Given the high literacy rate in Singapore, it is likely that a well planned health education campaign can further increase awareness and improve attitudes and create a social environment conducive for the integration of rehabilitated leprosy patients into the society.

Currently, newly identified leprosy patients are treated in a community setup. The

Singapore Leprosy Relief Association (SILRA) is tasked with the responsibility of rehabilitation and possible re-integration of the resident inmates of SILRA home into the community as well as to support and oversee the well-being of cured “ex-leprosy” patients who live on their own (SILRA, 1996a). Public education to dispel misconceptions about leprosy is also undertaken by SILRA whenever an opportunity arises. In comparison to studies in other countries, the current study which identified favourable attitudes concerning the acceptance of family members affected by leprosy, suggests a positive outlook for the success of these rehabilitation and reintegration efforts.

Stigmatising attitudes associated with leprosy constitute environmental and societal barriers to the dimensions of functions, activities and participation of those affected by leprosy. The International Classification of Functioning, Disability and

Health (ICF) has identified life domains in which participation of affected persons may be restricted by community stigma (WHO, 2001) (see Table 2.5 in Review of

Literature). In the context of these ICF domains, the present study has also attempted to address the community stigmatising attitudes on the domestic life, interpersonal

138 interactions and relationships, mobility within the society and social and civic life of those affected by leprosy. It was found that, overall, there was more acceptance of social interactions such as sharing public transportation and work environment than personal interactions such as shaking hands or sharing food with a leprosy patient.

Overall attitudes of the respondents towards leprosy

The origins of the social stigma of leprosy were a primitive fear evoking a guilt complex in the sufferer and the observer, a rational fear of contagion and a religious fear of divine punishment (Edwards, 1964).

For the purpose of the study, stigma could be defined as “a real or perceived negative response to a person affected by leprosy by individuals in the community.”

Overall, the present study revealed that 87.8 % of the respondents had some degree of stigmatising attitudes towards persons affected by leprosy as evidenced by a scoring system devised by this study. The distribution of the attitude scores tended to cluster near the middle of the range of possible scores suggesting that the attitudes of most respondents were neither particularly favourable nor unfavourable towards leprosy patients. Even so, the existing “neutral” attitudes of this proportion of the community could be changed to positive attitudes by providing accurate and appropriate information on leprosy that would dispel the false beliefs and misconceptions that were found to be a significant influence in determining negative attitudes.

Socio-demographic variables associated with stigmatising attitudes

The present study found that the respondents who lived in accommodations with four or fewer rooms (low to moderate socio-economic status as defined by this

139 study) as well as the respondents who had less than secondary school education had more positive attitudes compared to those with higher educational and accommodation status. A study among women in India (Kaur and Ramesh, 1994), similarly showed that stigma attached to leprosy had more negative impact on educated women belonging to higher socio-economic groups. Another study in India (Kopparty, 1995) also found that “upper-caste” families faced more social problems due to their high social status in the society suggesting that there is greater stigma among upper than lower social classes.

The present study also found significantly high stigmatising attitudes among the respondents who had a low overall knowledge of leprosy in comparison to the respondents who had high to moderate knowledge of leprosy. This is in support of overwhelming evidence that effective public communication can create a reasoned and rational community attitude towards leprosy patients and facilitate destigmatisation

(Krishnatray and Melkote, 1998). Further, this finding may be authentication that effective health education can foster a conducive environment for the successful rehabilitation and social re-integration of leprosy patients.

Misconceptions associated with stigmatising attitudes

The belief that leprosy spread easily was highly significantly associated with stigmatising attitudes of the respondents towards a leprosy patient. In the present study, on direct questioning, the commonest reason cited by the respondents for the avoidance of a leprosy patient was the fear of being infected, which has also been widely reported by other studies (Jones et al., 1984; De Stigter et al., 2000; Withington et al., 2003). The present study also found that the perceived modes of spread of

140 leprosy also contributed to stigmatising attitudes, which were significantly higher among the respondents who believed that leprosy spread easily such as ‘by sitting close to’ or ‘shaking hands with’ or ‘sharing food or personal items’ with a patient.

Therefore, in the local context, leprosy education aimed at the community should focus on the core message that leprosy does not spread easily and that a patient, on starting the treatment, does not transmit the disease as well as providing information on how leprosy is not transmitted. Indeed, an association between high knowledge of leprosy among the respondents and better attitudes towards leprosy patients has been identified by the present study.

The second most common concern expressed by the respondents for avoiding a person affected by leprosy was the fear of leprosy-associated deformities. As anticipated, the misconception that deformities were inevitable in leprosy was found to be a significant variable contributing to the stigmatizing attitudes of the respondents towards leprosy patients. Likewise, a study in Sudan also found that the stigma associated with leprosy was particularly severe towards those with extreme deformities and ulcerations (El Hassan et al., 2002). The study by De Stigter et al. in Nepal (2000) also concludes that a person with leprosy-associated deformities was more likely to experience negative community reaction than those without deformities. A visible sign of an illness is therefore, an important trigger for negative community behaviour.

The present study also found that the misconception that leprosy was incurable was significantly associated with negative attitudes towards leprosy. Studies have reported that the respondents were inclined to associate a cure from leprosy to be synonymous with cure from leprosy related deformities (Berkri et al., 1998). These

141 findings clearly emphasise the need for leprosy control programmes to focus on early diagnosis and treatment to prevent leprosy related disabilities and also reinforce the importance of rehabilitation and social reintegration of leprosy patients, particularly those with visible deformities. The perception that leprosy is contagious, mutilating and difficult, if not impossible to treat, have particularly favoured and perpetuated stigmatisation of the disease (Bainson and Van Den Borne, 1998). These three perceived attributes of leprosy have also been identified by the present study where the respondents’ fear of infectiveness, leprosy-related deformities and notion of incurability appear to underlie rejection of leprosy patients.

The findings of the present study also relate to the cognitive dimensions of leprosy stigma described by Bainson and Van Den Borne (1998) (see Table 1.3 in

Introduction). For instance, stigmatising attitudes of respondents were associated with the misconceptions that leprosy was contagious, incurable, caused by immoral conduct and that leprosy-related deformities were inevitable, which characterise the cognitive dimensions of peril, course, origin and concealability / aesthetic qualities, respectively.

Other researchers have also identified misconceptions regarding the origin the disease, beliefs on contagiousness and the incurable nature of the disease and fear of deformities as giving rise to leprosy stigma (Myint et al., 1992; Kopparty et al., 1995;

De Stigter et al., 2000).

The present study also found that a combination of misconceptions regarding the cause, spread and outcome of leprosy gave rise to significantly higher stigmatising attitudes towards those affected by the disease. For instance, although the misconceptions that leprosy was incurable, was hereditary and was due to superstitious

142 causes did not individually appear to show any association with stigmatising attitudes, these misconceptions were found to be significantly associated with stigmatising attitudes when analysed in combination with the beliefs that leprosy spreads easily, always caused deformities and was a consequence of immoral conduct.

Initial analysis revealed that a statistically significant lower level of stigmatising attitudes were present among those over forty years of age. As age was also found to be associated with misconceptions and beliefs, age could confound the relationship between misconceptions and stigmatising attitudes. Therefore, a stratified analysis was undertaken in order to attempt to identify factors (i.e. misconceptions and beliefs) contributing to stigmatising attitudes after controlling for age. Stratified analysis by age revealed that age was an effect modifier in expressed stigma due to misconceptions. Some misconceptions that gave rise to stigma varied between the younger (≤ 40 years) and older (> 40 years) age groups. This revealed that even though the young and the older age groups shared common misconceptions regarding leprosy, their contribution to stigmatising attitudes varied between the age groups. The association between misconceptions or beliefs and stigmatising attitudes were stronger in the older than younger age group. The highest prevalence ratio was found among the older respondents who held a combination of misconceptions on its spread, deformities and incurability. Nonetheless, the prevalence ratio of stigmatising attitudes due to these misconceptions was found to be low. It is possible that the low prevalence rate of leprosy in the community may also have been a factor as the respondents may not have perceived the disease to be a threat to them.

143 Correlates of attitudes

The results of the multiple regression analysis of correlates of attitudes towards leprosy found four variables to be significantly correlated with the attitudes.

Stigmatising attitudes towards leprosy were significantly associated with the (i) beliefs that leprosy was spread by shaking hands or (ii) sharing personal items with a person with leprosy, (iii) overall knowledge of leprosy and (iv) the accommodation status of the respondents. However, these four variables explained only 13 % of the observed variation, suggesting that there may be more factors other than those included in this study that contribute to the attitudes of the respondents towards leprosy.

The accommodation status of the respondents was the only socio-demographic variable that showed a significant, but negative correlation with the attitude score, indicating that the respondents with better accommodation status (indicative of a higher socio-economic status) had more negative attitudes towards leprosy. Since leprosy has been reported to be more common among lower socio-economic groups

(Jacobson and Yoder, 1998; Krishnatray and Melkote, 1998), it is possible that respondents from the lower socio-economic strata may have developed more tolerance and acceptance as a consequence of having had more contact with leprosy patients.

The correct belief that leprosy was not transmitted by shaking hands with a patient was the most important correlate contributing to positive attitude towards leprosy patients. In addition, positive attitudes were also present among those who believed that leprosy cannot be spread by sharing items with a leprosy patient. The results also showed that an increased knowledge score was also significantly correlated with a better attitude score. Ignorance about transmission fuels leprosy-related stigma

144 as individuals fear casual contagion and take inappropriate actions or inaction. These data reinforce the fact that by overcoming the fear of infectivity and dispelling misconceptions of the spread of leprosy, it is possible to bring about positive change in community attitudes towards leprosy patients.

Fundamentally, stigma is defined as “an attribute that is significantly discrediting” and is conceptualised on the basis of perceived deviance or difference from norms (Goffman, 1986). The fact that 87.8 % of the respondents in the present study had some degree of stigmatising attitudes towards persons affected by leprosy suggest that despite the fact that leprosy is not highly infectious, is curable and deformities preventable, leprosy is still regarded as “different from the norms” to the extent of being stigmatised. The accurate assessment of stigma associated with leprosy is a complex and difficult but urgent and important task. Based on the preliminary findings of the present study, further research is warranted that specifically examines the social and cultural determinants of stigma and explores the impact of stigma on leprosy control.

145 5.4. CONCLUSIONS

1. Over half of the respondents (55.8 %) interviewed had moderate to high knowledge

of leprosy.

2. Although most respondents (65 %) were aware that germs caused leprosy, many

of these respondents also held other multiple beliefs regarding the causation of the

disease. The commonest misconception held by the respondents regarding the

cause of leprosy was that it was hereditary.

3. A significant number of the respondents believed that leprosy spread easily

(41.3 %) and leprosy-related deformities were inevitable (48.5 %).

4. With increasing age of the respondents, the knowledge of the signs and symptoms

of leprosy and the fact that leprosy was caused by germs also increased. Older

respondents may likely have received intensive and effective health education

about leprosy in the era when it was a serious public health problem in Singapore.

5. More male than female respondents and more respondents of Christian faith than

respondents belonging to other faiths were found to have a high knowledge of the

symptoms of leprosy.

6. The commonest belief that leprosy was hereditary was found to be less common

among the younger respondents and those who had had a higher level of education.

146 This finding is a positive outlook for the effectiveness of future leprosy education

programs.

7. The study found that 32.3 % of the respondents believed leprosy to be incurable.

Given the current low incidence of leprosy in Singapore, it is likely that these

respondents may have wrongly associated the “incurability” of leprosy with the

permanent deformities sustained as a consequence of delayed treatment seen

among some of the cured patients in the society.

8. Most respondents were more agreeable towards having social contact with a patient

with leprosy (travelling, attending social functions and working together) as

opposed to having personal contact such as sharing food or housing or shaking

hands with a leprosy patient.

9. More respondents (65.5 %) were willing to accept a family member with leprosy,

than a friend (34.3 %) or an unknown person (19.8 %) with leprosy. The

association between the belief that leprosy spread easily and non-acceptance of

persons affected by leprosy was significant.

10. Based on a scoring system devised by this study, 87.8 % of the respondents were

found to have some degree of stigmatizing attitudes towards leprosy. However, the

median scores revealed that most were “neutral”, not particularly favourable nor

unfavourable towards having contact with a patient with leprosy.

147 11. A significant proportion (38.1- 39.5 %) of the respondents believed that leprosy

could be transmitted by casual contact such as sharing personal items or sitting

close to or sharing food or shaking hands with a leprosy patient. The respondents

who believed leprosy spread easily by means of casual contact had significantly

higher negative attitudes towards leprosy patients.

12. Multiple regression analysis of correlates of attitudes towards leprosy found four

variables to be significantly correlated with the attitude score. These are (i) beliefs

that leprosy was spread by shaking hands or (ii) sharing personal items with a

person with leprosy, (iii) overall knowledge of leprosy and (iv) the accommodation

status of the respondents. However, these four variables explained only 13% of the

observed variation. The poor correlation suggests that there may be more factors

other than those included in this study that contribute to the attitudes of the

respondents towards leprosy.

13. The respondents with better accommodation (indicative of a higher socio-economic

status) had more negative attitudes towards leprosy.

14. The wrong beliefs that leprosy can be transmitted by shaking hands or by sharing

items with a patient with leprosy were correlated with stigmatising attitudes

towards leprosy patients. The results also showed that the respondents with better

knowledge of leprosy had more positive attitudes towards those with leprosy.

148 5.5. RECOMMENDATIONS

1. Only about half of the respondents interviewed had satisfactory knowledge of

leprosy. It is therefore essential to provide information regarding leprosy to

increase awareness of leprosy at community level.

2. Younger respondents had less than adequate knowledge of leprosy compared to the

older age groups. Since leprosy is no longer a public health problem in Singapore,

the present health education programmes are focussed mainly on the family

members and contacts of persons diagnosed with leprosy (Epidemiological News

Bulletin, 1999). The scope of these education programmes should be expanded to

include the community at large to increase acceptance and reintegration of leprosy

patients into the community.

3. Misconceptions regarding the transmission of leprosy were found to contribute

significantly to stigmatising attitudes of the respondents towards leprosy.

Therefore, in addition to the core message that leprosy is not contagious, health

education should also include specific messages on the modes by which leprosy is

not transmitted in order to alleviate the fear of the community in relating to those

with leprosy.

4. Large-scale community education is not cost effective in view of the low incidence

rate of leprosy in Singapore. To increase acceptance of leprosy by the younger age

group, the high literacy rate of this target group and easy access to electronic and

print media can be exploited to provide specific health education messages on the

149 cause, transmission and curability of leprosy tailored to counter the misconceptions

prevalent in the community about the disease.

5. Stigmatising attitudes towards leprosy patients were present among the

respondents and were primarily associated with lack of knowledge about leprosy,

particularly with regard to its curability and spread, and the prevalence of

misconceptions. Therefore, leprosy education efforts on the curability of leprosy,

that it is not easily spread and that early treatment will prevent deformities should

be the key messages that need to be sustained and repeated periodically in order to

bring about a positive change in community attitudes which would facilitate the

integration and acceptance of leprosy patients into the community.

6. The study also suggests that the respondents’ age may play an important role in

expressing stigma arising as a consequence of their misconceptions. Therefore,

health education messages need to be age-specific to effectively target the intended

audience and address the specific misconceptions identified by the study as giving

rise to stigmatising behaviours among the selected subpopulation.

7. The rehabilitation and reintegration of patients cured of leprosy is an important

aspect of the leprosy elimination programme. Disabled persons with skills have

better chances of overcoming societal prejudices and achieving social acceptance

(First, 1980). The present study identified strong negative community attitudes

with respect to contact with leprosy patients with deformities. This important

finding is likely to impede the social integration of patients. Therefore, due

consideration must be given to create integrated vocational rehabilitation

150 opportunities for leprosy patients that may enable them to be socially adaptable and

independent.

8. The National Skin Centre of Singapore has expressed an interest in utilising the

findings of the present study as a resource for background information on the

knowledge, beliefs and attitudes of the local population which could be utilized for

the planning and implementation of leprosy education programmes. The study will

also be useful for the planning of rehabilitation and social reintegration

programmes for leprosy patients. Future studies should address the needs and

requirements of leprosy patients with respect to physical rehabilitation.

151

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165

Appendices

ANNEXE I QUESTIONNAIRE

SURVEY ON COMMUNITY KNOWLEDGE, BELIEFS AND ATTITUDES TOWARDS LEPROSY

Introduction: Good Morning/ Afternoon/ Evening. The National university of Singapore is conducting a survey on Leprosy among a random sample of people. We sincerely hope for your participation. We are not here to judge you, but merely to study people's practices in general. The information will be valuable for programme planning to improve health, which will benefit the community. Therefore we hope that you will agree to participate in this survey. Your questionnaire will be kept in strict confidentiality.

INTERVIEWER NAME: …………………………... RESPONDER NO: ………………………...

DATE OF INTERVIEW: ……………………………

SECTION A - DEMOGRAPHIC DATA

1 Name ………………………………………………….

2 Address Block No.………………… Unit No……………………….

3 Date of Birth …………/…………/………(dd/mm/yy)

Please circle the number in the box appropriate to your personal particulars

4 Citizenship 1. Singaporean 1 2. Permanent Resident 2

5 Sex 1. Male 1 2. Female 2

6 Ethnic Group 1. Chinese 1 2. Malay 2 3. Indian 3 4. Others ______(Please specify) 4

7 Religious Beliefs 1. Buddhist 1 2. Christian 2 3. Hindu 3 4. Islam 4 5. Others ______(Please specify) 5

8 Martial Status 1. Single 1 2. Married 2 3. Separated 3 4. Divorced 4 5. Widowed 5

9 Educational Level 1. No education 1 2. Primary Education 2 3. Technical (ITE) 3 4. Secondary Education 4 5. Junior College 5 6. Polytechnic 6 7. University 7

10 Employment 1. Administrative / Managerial 1 2. Professional 2 3. Technical 3 4. Sales & Services 4 5. Clerical 5 6. Production Worker 6 7. Cleaner/Labourer 7 8. Student 8 9. Housewife 9 10. Retiree 10 11. Unemployed 11 12. Others ______12 (Please specify)

11 Household income 1. Less than $ 999 1 2. Between $ 1000 - $ 1999 2 3. Between $ 2000 - $ 2999 3 4. Between $ 3000 - $ 3999 4 5. Between $ 4000 - $ 4999 5 6. Above $ 5000 6

12 Accommodation status 1. HDB 3 Rooms & Below 1 3. HDB 4 Rooms 2 3. HDB 5 Rooms & above 3

SECTION B - KNOWLEDGE OF LEPROSY

What do you know about leprosy? Please circle the appropriate number on the scale. Scale: 1 = Yes 2 = No 3 = Do not know

13 It can spread easily 1 2 3

14 It is not curable 1 2 3

What are the symptoms of leprosy? Please circle the appropriate number on the scale. Scale: 1 = Yes 2 = No 3 = Do not know

15 It causes skin irritation or itchiness 1 2 3

16 It can present as skin patches 1 2 3

III 17 It can present as nodules 1 2 3

18 Leprosy can present as loss of sensation 1 2 3

19 It can lead to deformities or disfigurement 1 2 3

20 Leprosy patients always end up with deformities 1 2 3

SECTION C - BELIEFS REGARDING LEPROSY

What causes leprosy? Please circle the appropriate number on the scale. Scale: 1 = Yes 2 = No 3 = Do not know

21 Leprosy can be caused by unclean environment 1 2 3

22 Leprosy can be caused by eating too much 'cooling' food 1 2 3

23 Leprosy can be caused by eating too much 'heaty' food 1 2 3

24 Leprosy is a punishment for our sins/sins of parents or grand-parents 1 2 3

25 Leprosy occurs due to impure blood 1 2 3

26 Leprosy is due to curse/ punishment by god 1 2 3

27 Leprosy is caused by witchcraft 1 2 3

28 Leprosy is due to evil spirits 1 2 3

29 Leprosy is hereditary 1 2 3

30 Leprosy can be caused by immoral conduct 1 2 3

31 Leprosy is due to vitamin deficiency 1 2 3

32 Leprosy is caused by germs 1 2 3

33 Are there any other causes of leprosy? ………………..(Please Specify)

How is leprosy transmitted? Please circle the appropriate number on the scale. Scale: 1 = Yes 2 = No 3 = Do not know

34 By air 1 2 3

35 By contaminated soil 1 2 3

36 By bathing in a river 1 2 3

37 By insects such as mosquitoes 1 2 3

38 By sexual contact with leprosy patients 1 2 3

39 By sexual contact with prostitutes 1 2 3

40 By skin contact 1 2 3

41 By sitting close to the leprosy patients 1 2 3

42 By eating food together with leprosy patients 1 2 3

43 By shaking hands with leprosy patients 1 2 3

44 By sharing personal items such as towel, toothbrush etc. with 1 2 3 leprosy patients

45 Leprosy is passed from mother to infant 1 2 3

46 Are there any other ways of transmission of Leprosy? ……………………………(Please Specify)

How can leprosy be treated? Please circle the appropriate number on the scale Scale: 1 = Yes 2 = No 3 = Do not know

47 Pharmaceutical drugs against leprosy 1 2 3

48 Avoiding taboo food 1 2 3

49 Medicinal herbs 1 2 3

50 Religious rituals 1 2 3

51 Patient should be isolated from others during treatment 1 2 3

52 Are there any other ways by which leprosy can be treated?…………………………………………… (please specify)

SECTION D -- ATTITUDES TOWARDS LEPROSY PATIENTS

What would your reaction be: Please circle the appropriate number on the scale. Scale: 1 = Avoid out of disgust 2 = Avoid out of fear 3 = Neutral 4 = Feel pity 5 = Accept the person as he/she is

53 If you see a person afflicted with leprosy 1 2 3 4 5

54 If one of your friends or colleagues is afflicted with leprosy 1 2 3 4 5

55 If your family member is afflicted with leprosy 1 2 3 4 5

What would be your attitude towards a leprosy patients? Please, circle the number on the scale of your reaction Scale: 1 = Strongly disagree 2 = Disagree 3 = Neutral 4 = Agree 5 = Strongly agree

56 I will sit beside a leprosy patient 1 2 3 4 5

57 I am willing to shake hands with leprosy patient 1 2 3 4 5

58 I am willing to share food with a leprosy patient 1 2 3 4 5

59 I would buy food from a leprosy patient 1 2 3 4 5

60 I am prepared to work in the same environment with a leprosy patient 1 2 3 4 5

61 I will house a leprosy patient 1 2 3 4 5

62 I will be friends with a leprosy patient 1 2 3 4 5

63 I will not allow my children from playing with a child of a leprosy patient 1 2 3 4 5

64 Leprosy patients should be allowed to use public transport 1 2 3 4 5

65 Leprosy patients should be allowed to attend public functions 1 2 3 4 5

66 I will allow a cured leprosy patient to marry a member of my family 1 2 3 4 5

67 I will feel sorry or pity for a leprosy patient 1 2 3 4 5

68 I will help a leprosy patient if necessary 1 2 3 4 5

What would you do if a person you know contracts leprosy ? Please circle the appropriate number on the scale Scale: 1 = Yes 2 = No

69 Advice him or her to seek treatment from a traditional healer 1 2 3

70 Advice him or her to seek treatment from a hospital/poly clinic 1 2 3

SECTION E - GENERAL

Please circle the appropriate number on the scale Scale: 1 = Yes 2 = No

71 Have you come in contact/ known any leprosy patient 1 2

72 Have you ever seen a person with leprosy 1 2

73 Would you avoid a leprosy patient? 1 2 For example, avoid having food or activities with him/her

If the answer is 'Yes' to question 73, please answer 74 to 78 If the answer is 'No' please answer 79 to 82

74 I am afraid he/she will spread the infection to me

75 I am afraid of his/her deformities/look

76 I am afraid other people will think I have leprosy too

77 I do not want to be associated with leprosy patient

78 I think leprosy patients are bad people

79 I believe all people should be treated equally as humans

80 It is unfortunate that they contacted the disease

81 I do not bother what other people may think of me as long as I am doing right

82 I do not think I will be infected just by being near with a leprosy patient

VII ANNEXE II

Operational Definitions

Age

Age was defined as the chronological age of the respondent on the day of interview.

Ethnicity

For the purposes of this study, the population of Singapore was classified into ethnicities as defined by the Census of Population, 2000.

i. Chinese: persons of Chinese origin.

ii. Malay: persons of Malay or Indonesian origin.

iii. Indian: persons of Indian, Pakistani, Bangladeshi or Sri Lankan origin.

iv. Other: persons of origins other than those stated above.

Religion

The population was categorised as belonging to one of the following religious faiths:

i. Buddhism

ii. Taoism

iii. Islam

iv. Hinduism

v. Christianity (including Catholicism and other Christian faiths)

vi. Other (any faith other than the above mentioned)

vii. Free thinkers (not practicing any religious faith)

VIII Level of education

The level of education of the respondents was assessed by the highest qualification obtained or the last grade attended when the subject left school, as the case may be. In the case of students, the current class being attended was asked. Accordingly the educational level was categorised as follows:

i. No education: not attended school at all.

ii. Primary education: primary 1 - 6 or part thereof.

iii. Secondary education: secondary 1 - 5 or part thereof.

iv. Technical education: courses of secondary level offered at vocational technical and

commercial institutions.

v. Junior college: upper secondary level education.

vi. Polytechnics: diploma / course offered by a polytechnic institution.

vii. University: degree or post graduate degree from a university.

Occupation

Occupation denoted the respondent’s current employment. Employment was categorised according to the Singapore Standard Occupational Classification (2000).

Household income

Household income included the combined monthly income of all members of the respondent’s household.

Nodules

Swellings or lumps on the body, especially of the arms and face.

IX Leprosy associated deformities and disfigurements

Encompasses a spectrum of signs and symptoms including non-healing wounds of the fingers and toes, loss of digits in hands and feet, loss of function of hands or feet, clawing of fingers or toes, change of facial features and difficulty in walking.

Hereditary disease

Broadly defined as a disease that may be inherited; may be passed on from generation to generation, may be passed on from mother to child; may affect more than one member of the family.

Immoral behaviour

Conduct unbecoming or in violation of the social, cultural or religious values and virtues upheld by the community such as sexual misconduct.