INTERNATIONAL JOURNAL of LEPROSY Volume 71, Number 3 Printed in the U.S.A

INTERNATIONAL JOURNAL OF LEPROSY Volume 71, Number 3 Printed in the U.S.A. (ISSN 0148-916X) INTERNATIONAL JOURNAL OF LEPROSY and Other Mycobacterial Diseases

VOLUME 71, NUMBER 3SEPTEMBER 2003

Measuring Leprosy Stigma—A Preliminary Review of the Leprosy Literature1

Wim H. van Brakel2 ABSTRACT A literature review was conducted to review work done to date on measuring stigma related to leprosy. References were obtained through a PubMed (Medline) search and through examining relevant bibliographies. Twelve papers were selected that addressed the issue of measurement of stigma and that contained a sample of the instrument used. Three unpub- lished studies were also included in the review. Studies that attempt to measure stigma can be broadly categorized in two groups, a) studies that assess the effects of stigma on the person affected, and b) surveys that assess community attitudes and/or practices. The study and questionnaire characteristics of the studies in both categories are described and compared. The studies reviewed indicate that leprosy stigma is still a global phenomenon, occurring in both endemic and non-endemic countries. The consequences of stigma affect individuals as well as the effectiveness of leprosy control activities. Despite enormous cultural diversity, the areas of life affected are remarkably similar. They include mobility, interpersonal relationships, marriage, employment, leisure activities, and attendance at social and religious functions. This suggests that development of a standard stigma scale for leprosy may be possible. Data obtained with such an instrument would useful in situational analysis, advocacy work, monitoring and evaluation of interventions against stigma, and research to better understand stigma and its determinants. RÉSUMÉ Une revue de la littérature visant à revisiter le travail fait jusqu’à présent pour mesurer les stigmates associées à la lèpre, s’est appuyée sur les références obtenues par l’intermédiaire d’une recherche électronique Pubmed (Medline) et en examinant des bibliographies appro- priées. Douze publications ont été sélectionnées, traitant du problème de la mesure des stigmates et qui contenait un échantillon des instruments utilisés. Trois études non publiées furent également incluses dans cette revue. Les études qui ont tenté de mesurer les stigmates peuvent être globalement divisées en deux groupes: a) les études qui évaluent les effets des stigmates sur la personne affectée et b) les enquêtes qui évaluent l’attitude et les pratiques des communautés (la stigmatisation). Le plan et les caractéristiques des questionnaires de ces enquêtes dans les deux catégories d’étude sont décrites et comparées.

1 Received for publication on 15 November 2002. Accepted for publication on 7 July 2003. 2 W. H. van Brakel, M.D., M.Sc., Ph.D., TLM Research Resource Center 5 Amrita Shergill Marg, New Delhi—110003, India. Reprint requests to: Dr. Wim H. van Brakel, Consultant for Leprosy and Tuberculosis, Royal Tropical Insti- tute (KIT), Amsterdam, the Netherlands. E-mail: [email protected]

190 71, 3 Van Brakel, et al.: Measuring Leprosy Stigma, a Review 191

La revue de ces études indique que la stigmatisation de la lèpre reste un phénomène global, sévissant à la fois dans les pays endémiques et non endémiques. Les conséquences des stigmates affectent non seulement les individus mais aussi l’efﬁcacité des activités de contrôle de la lèpre. Malgré une diversité culturelle très importante, les aspects de la vie qui en sont affectés sont remarquablement similaires. Elles incluent la mobilité, les relations in- terpersonnelles, le mariage, l’emploi, les loisirs et la participation aux activités locales et re- ligieuses. Cela suggère que l’élaboration d’une échelle standard des stigmates de la lèpre reste possible. Les données obtenues avec un tel instrument pourrait être utiles dans les analyses de situation, le travail de défense, le suivi et l’évaluation des interventions dirigées contre la stigmatisation, ainsi que la recherche pour mieux comprendre la stigmatisation et ses déterminants. RESUMEN Se hizo una revisión de la literatura sobre el tema del estigma en la lepra y su valoración. Como fuente de información se recurrió a PubMed (Medline), de donde se seleccionaron 12 publicaciones que hacen referencia al estigma en la lepra y al método de su medición. Tam- bién se incluyeron tres trabajos que todavía no han sido publicados. Los estudios que pretenden medir el estigma de la enfermedad pueden clasiﬁcarse grue- samente en dos grupos: a) los estudios que miden los efectos del estigma en la persona afec- tada, y b) los estudios que miden la actitud o la reacción de la comunidad hacia los enfer- mos. En la presente revisión se describen y se comparan los procedimientos y los cues- tionarios aplicados en las dos categorías de estudio. Los resultados de los trabajos revisados indicaron que el estigma en la lepra es todavía un fenómeno global tanto en los países endémicos como en los no endémicos. Las consecuen- cias del estigma afectan tanto a los individuos como a los programas de control contra la lepra. No obstante la enorme diversidad cultural, las áreas afectadas de la vida son muy sim- ilares e incluyen desplazamiento, relaciones interpersonales, matrimonio, empleo, activi- dades recreativas, y asistencia a eventos sociales y religiosos. Esto sugiere que es posible de- sarrollar una escala de estigma estándar para la lepra. Los datos obtenidos con este instru- mento podrían resultar de gran utilidad en la medición del estigma, en las investigaciones orientadas a entender mejor el estigma y sus determinantes, y en la evaluación de los resultados de las medidas tomadas contra el estigma.

Leprosy stigma is known and referred to references. Only papers from the English very widely, even to the extent that the literature that included the questions used in word “leprosy” (or the local term for lep- the study were included in the review. rosy) is used as a curse word in some countries (13). However, comparatively little sys- RESULTS tematic research has addressed the issue of Studies that involve some form of mea- stigma. Particularly, studies that have at- surement or assessment of stigma can be tempted to measure the level or intensity of broadly categorized in two groups: (i) stud- stigma are rare. This is possibly due to the ies that assess the effects of stigma on the difficulty of reliably measuring psychoso- person affected, and (ii) studies that assess cial phenomena such as stigma. Currently, attitudes and/or practices towards people no standard stigma scale is widely available affected by leprosy. that could be used to measure leprosy- Studies that assess the effects of stigma related stigma in different cultural settings. on the person affected. The best developed instrument in this category is the ‘De- METHODS habilitation Scale’ published by Dr. Hanna To review the work done to date on mea- Anandaraj (1). This 52-item scale covers suring stigma related to leprosy, a literature four areas related to stigma: family relation- study was done. References were collected ships, vocational conditions, social interac- through a PubMed (Medline) search on the tion, and self esteem. The items consist of keywords “leprosy” combined with “stigma,” positive or negative statements, with 5-point “KAP,” or “attitude.” In addition, relevant Likert-type response scales (strongly agree bibliographies were studied for additional to strongly disagree) (25). The results are 192 International Journal of Leprosy 2003 summed, divided by the maximum possible characteristics of these studies are summa- score, and multiplied by 100 to get the rized in Table 1. “score-quotient.” No published studies us- The majority of studies were cross sec- ing this scale were identified in this search. tional questionnaire surveys. Our own Dr. P.K. Gopal developed a questionnaire study in Nepal (van Brakel, W. H., Bhatta, designed to identify target groups for so- I., Anderson, A. M., and Engelbrektsson, U. cioeconomic rehabilitation (Gopal, P. K. Preliminary results from a Leprosy Elimi- Personal communication). It contains 14 nation Campaign conducted in Parwat Dis- items related to attitude or practice that trict, West Nepal. Paper presented at the were to be answered with yes/no. If the re- 2nd International Conference on the Elimi- spondent answered ‘yes’ on 50% or more of nation of Leprosy, New Delhi, India, 11Ð13 the items, (s)he was considered in need of October 1996.), and the studies of van der socioeconomic rehabilitation. A large study Broek, et al. (28) and Croft and Croft (10) (53,000) was conducted in India using this were health education impact assessments, questionnaire, but, to my knowledge, the comparing a community with itself in a results have not been formally published “before and after” trial design or comparing yet (15). intervention with a control community. The perceived participation restriction Sometimes attitudes and practices regard- approach is being used in the development ing leprosy were compared between com- of a Participation Scale for use with people munity and people affected by leprosy (20, 24), affected by leprosy or other disability. The or between different communities (8, 21). preliminary work on that scale done in One study compared the community atti- Nepal was presented during the 16th World tudes towards leprosy with attitudes to- Leprosy Congress in Brazil (Anderson, et wards epilepsy in the same community (24). al. Book of Abstracts. No. OSA10). The All of the studies reviewed used ques- Participation Scale Development Program tionnaires rather than scales. Most ques- is an international multi-center project aim- tionnaires contained items on knowledge ing to develop an instrument to assess, regarding leprosy, as well as on attitude monitor, and evaluate rehabilitation needs and/or practice. The number of items on at- and the impact of interventions. titudes and practice varied from 2 to 12. Similar approaches are used in many Four studies used items with “Yes/No/Don’t stigma-related scales in the field of non- know” response scales. Four studies used leprosy rehabilitation, for example the re- multiple category response scales (3Ð5 cat- cently developed Rehabilitation Activity egories); one used a mixture of response Profile (27), the Impact on Participation and options, and two used semi-structured ques- Autonomy Questionnaire (7), scales in the tionnaires with open questions, one of field of HIV/AIDS (3) and other stigma- which was a checklist of answer options. tized infectious diseases, such as onchocer- Items commonly used in the above in- ciasis (5), as well as in many other handicap struments. Many areas of life may be af- scales (6). fected by stigma. In the terminology of the Studies that assess attitudes and/or new WHO International Classification of practices towards people affected by lep- Functioning, Disability and Health (ICF), rosy. Dozens of studies have been reported the consequences of stigma would manifest in which investigators have attempted to as- to a large extent as participation restrictions sess attitudes and/or practices towards lep- (29). The ICF recognizes nine life domains rosy or people affected by leprosy. Often in which participation may be restricted (29). this was in preparation for or in association These are: (i) learning and applying knowl- with health education interventions, to see edge, (ii) general tasks and demands, (iii) to what extent knowledge input would communication, (iv) mobility, (v) self care, modify attitudes and practices among the (vi) domestic life, (vii) interpersonal interac- target group(s) (9, 10, 11, 21, 28). Most studies tions and relationships, (viii) major life areas, use questionnaires or lists of statements to and (ix) community, social, and civic life. which respondents must reply or rate on a In Table 2, the attitude and practice items response scale. Reports on studies that in- used in two or more of the studies reviewed cluded the scale or questionnaire used were here have been listed, grouped according to included in the present review. The main the ICF domains. The domains covered are 71, 3 Van Brakel, et al.: Measuring Leprosy Stigma, a Review 193

TABLE 1. Overview of studies in which attitudes and/or practices towards people affected by leprosy were assessed.

Country Authors Type of study/ No. of Response Number of and year questionnaire items* scale subjects U.S.A. Shearer and Questionnaire 5 Yes/No/Don’t know 149 non-pro- Hoodwin, survey fessional; 55 1958 (4) professional Nigeria Awofeso, 1992 Questionnaire 5 5-point agreement scale 278 nurses (2) survey Ethiopia Tekle- Questionnaire 8 Yes/No/Don’t know 1313 leprosy, Haimanot, survey; com- 1257 et al., 1992 parison with epilepsy (26) attitudes to epilepsy Tanzania Van den Broek, Evaluation of 5 Open questions with 1064 school et al., 1998 health checklist children, (28) education 344 general campaign public India Ramu, et al., Questionnaire 2 Yes/No/Don’t know 25 ‘normal’in- 1975 (22) survey dividuals in rural south India Raju and 8 3-point scale (positive, 599 Orissa, 600 Kopparty, neutral, negative) Andhra 1995 (21) Pradesh

Sharma, et al., Questionnaire 4 3-option ‘scales’ 36 Panchayat 2001 (24) survey, as reps and 16 well as people af- qualitative fected by lep- methods rosy in Mad- hya Pradesh Nepal Van Brakel, Questionnaire 8 Yes/No/Don’t know or 534 rural et al., 1996a survey multiple answer community before and categories members after campaign (independent samples) De Stigter, et Cross-sectional Respondents were cate- 192 community al., 2000 (12) study using a gorized based on their members semi-struc- responses (usual be- tured inter- havior, eating limita- view tions, individual negative behavior, social- public limitations and segregation) Myanmar Myint, et al., Comparative 9 4-point agreement scale 251 Leprosy 1992 (20) cross-sec- cases and tional study 251 community members Bangladesh Croft and Croft, Controlled HE 4 Yes/No/Don’t know 50 ‘cases’and 1999 (10) impact study 50 controls Malaysia- Chen, 1986 (8) Cross-sectional 12 Approve/disapprove of 388 community Sarawak comparison given statements members of between dif- different ferent ethnic ethnic groups background *Only items measuring attitude and/or practice have been counted here. a van Brakel, W. H., Bhatta, I., Anderson, A. M., and Engelbrektsson, U. Preliminary results from a Leprosy Elimination Campaign conducted in Parwat District, West Nepal. Paper presented at the 2nd International Con- ference on the Elimination of Leprosy, New Delhi, India, 11Ð13 October 1996. 194 International Journal of Leprosy 2003

TABLE 2. Commonly used attitude and practice items grouped according to ICF domains.

Domain Item Number of studies Mobility Move around freely in the community II Allowed to use public transport II Domestic life Sharing food with an affected person III Using the same household utensils as other family members III Eating separately IIII Live in the same room or house as an affected person IIII Interpersonal interactions and Shake hands/touch an affected person III relationships Marry (your son/daughter) into a family where someone had leprosy IIIII An affected person should be isolated IIII Allowed to play with children IIII Is the condition associated with shame II Treated with respect by family, community members, health workers IIII Visiting or being invited by friends, family and/or others IIIII Concealing the disease IIII Major life areas Working with/employing an affected person IIII Will an affected person get equal treatment along with (in the same place) as other patients III Loosing work or diminished employment prospects II Community, social, and civic life Attending social/community functions and/or meetings IIIII Spending leisure time with friends II Being visited by others II Allowed to use public facilities III Buy food from (shop of) affected person III Go to temple or participate in religious services, functions or rituals II

Mobility, Domestic life, Interpersonal inter- outweigh the burden of physical afﬂictions. actions and relationships, Major life areas, Many people live happily with severe phys- and Community, social and civic life. ical impairments, as long as they are ac- A very different approach to stigma mea- cepted, respected, and loved by those surement—semantic differential scales—was around them and are able to function and used in two studies described in a paper by participate meaningfully in the society in Gussow and Tracy (16). This technique re- which they live. In conditions like leprosy, quires respondents to rate subjects such as “a HIV/AIDS, epilepsy, and mental health person with mental illness,” “a person with conditions such as schizophrenia, the tuberculosis,” or “a person affected by lep- stigma attached to the condition may be rosy” on multi-point response scales (7-point worse than the condition itself. in the quoted studies). The rating 1 represents Stigma is called “enacted” when the per- a very unfavourable view (“bad,” “sad,” son actually faces the effects of stigma, “worthless”), whereas 7 indicates a positive such as discrimination, rejection, physical concept (“good,” “happy,” “valuable”). A rat- abuse, loss of employment, or divorce (23). ing of 4 is considered neutral. The ratings of Although enacted stigma against leprosy is the individual items are summed and the now less common than before, it still affects mean is calculated. In this way, one can com- countless people worldwide. Even people pare community perceptions or attitudes to related to or working with those affected various conditions. Two different semantic may experience such stigma. “Perceived” differential scales are described in Gussow or “felt” stigma (“self-stigma”) refer to the and Tracy’s paper. fear of enacted stigma. Perceived stigma is a very widespread phenomenon, which may DISCUSSION disrupt people’s lives even more than en- Stigma has been deﬁned as “an attribute acted stigma (17, 23). Perceived stigma typi- that is deeply discrediting,” leading to a cally occurs when a condition can be con- “spoiled identity” (14). In terms of human cealed [Hyland (18) cited by Heynders (17)]. suffering, the consequences of stigma often Important life areas that are commonly 71, 3 Van Brakel, et al.: Measuring Leprosy Stigma, a Review 195

affected by enacted stigma are people’s dig- tionships, marriage, employment, leisure nity, social status, employment opportuni- activities, and attendance at social and reli- ties or job security, family relationships, gious functions. These similarities suggest and friendships. Perceived stigma may that it may be possible to develop a culture- cause emotional stress and anxiety, depres- free stigma scale to measure the intensity of sion, (attempted) suicide, isolation, and stigma related to a condition like leprosy in problems in family relationships and friend- a given community. The data collected with ships. People have left their families, and such an instrument would be very useful for even spouses and children, fearing the a number of purposes. repercussions of the fact they had leprosy (i) Understanding the situation of people (19). In addition, (perceived) stigma may af- affected by leprosy in a given area. This fect many aspects of leprosy control. may be part of a situational analysis in People who fear the consequences of the di- preparation for a rehabilitation or health ed- agnosis of leprosy may delay in presenting ucation program. themselves to the health services, and thus (ii) Helping in advocacy work. Data on have an increased risk of disability and con- stigma would very much strengthen the tinue to be a potential source of infection in case of people involved in advocacy on be- the community. Fear of “being found out” half of those stigmatized. Such data would and the possible consequences of that may awaken the interest of the public to the lead to the patient discontinuing of treat- plight of those affected by the stigma. ment (18). Similarly, perceived stigma may (iii) Monitoring and evaluation of inter- lead to non-compliance with self-care rou- ventions to reduce stigma in the commu- tines and thus worsening of impairments. nity. Large sums of money are spent on me- While the presence of stigma attached to dia campaigns and other IEC interventions a given condition is often well recognized, aiming to reduce stigma, but, to date, the the magnitude or intensity of such stigma is impact of these is very difficult to assess. difficult to quantify. The question, “How (iv) Research. If we were able to measure strong is the stigma against leprosy in this stigma, we could increase our understand- community?” is likely to be answered with ing of the dynamics and causes of stigma, vague statements, such as “very strong,” hopefully leading to more effective inter- “not so strong,” or “less strong than before.” ventions. We could compare stigma inten- If stigma plays such a major role, why do sity between different people groups and we not know more about its magnitude and communities, and try to discover factors prevalence? The answer is that psychoso- that have helped some to overcome stigma cial phenomena such as stigma are difficult or factors that increase the risk of stigmati- to measure. To date, there is no accepted zation. scale or instrument with which stigma in When assessing stigma, one should re- the community can be quantified. Such in- member that stigma attached to a given struments have been developed to measure condition “in the community” is not the stigma attached to other conditions, such as same as the stigmatizing attitudes of indi- HIV/AIDS. viduals in that community. In other words, The studies reviewed here indicate that “community stigma” is more (or less) than leprosy stigma is still a global phenomenon, the sum of stigmas held by those who make occurring in both endemic and non- up that community [Anderson, A. (INF RE- endemic countries. However, the question- LEASE Project). Personal communication.] naires used in these studies were very dif- For example, the media may portray a ferent in content and structure and results negative image of people with a particular are therefore difficult to compare. In addi- condition, while many people in that commu- tion, the items that related to attitude and nity actually have a positive attitude. Simi- practice were usually only a minority larly, services may be provided for people among a large number assessing leprosy- with the condition, but these services them- related knowledge. selves may be stigmatizing. The classic ex- Despite enormous cultural diversity, ample is that of patients with leprosy who many areas of life affected by stigma are re- may be able to get treatment from the gen- markably similar in different countries. eral health services, but who, in many ar- They include mobility, interpersonal rela- eas, are still required to attend on the “lep- 196 International Journal of Leprosy 2003 rosy day,” once a week or once a month. 4. BOOTH, R. J., and ASHBRIDGE, K. R. A fresh look at Attending the health facility on that partic- the relationship between the Psyche and Immune ular day in itself may lead to the person be- system: teleological coherence and harmony of ing stigmatized. An assessment of stigma in purpose. J. Mind-Body Health 9(2) (1993) 8Ð23. 5. BRIEGER, W. R., OSHINAME, F. O., and OSOSANYA, a given community should therefore in- O. O. Stigma associated with onchocercal skin clude an assessment of the attitudes and disease among those affected near the Ofiki and practices of members of that community, as Oyan Rivers in western Nigeria. Soc. Sci. Med. well as, if possible, an “audit” of the media, 47(7) (1998) 841Ð852. legislation, and services provided. These 6. CARDOL, M., BRANDSMA, J. W., DE GROOT, I. J., could possibly be sub-scales of one overall VAN DEN BOS, G. A., DE HAAN, R. J., and DE JONG, stigma scale. B. A. Handicap questionnaires: what do they as- It should also be remembered that a sess? Disabil. Rehabil. 21(3) (1998) 97Ð105. stigma scale would assess reported attitudes 7. CARDOL, M., DE HAAN, R. J., RN, DE JONG, B. A., and practices, which are not necessarily a VAN DEN BOS, G. A. M., and DE GROOT, I. J. M. Psychometric properties of the impact on partici- accurate reflection of the real situation. pation and autonomy questionnaire. Arch. Phys. Where possible, studies that use question- Med. Rehabil. 82 (2001) 210Ð215. naires or scales to assess stigma should 8. CHEN, P. C. Human behavioural research applied therefore be complemented and validated to the leprosy control programme of Sarawak, by qualitative methods, such as participant Malaysia. Southeast Asian J. Trop. Med. Public observation, focus group discussions, and Health 17(3) (1986) 421Ð426. in-depth interviews. Another means to vali- 9. CHEN, P. C., and SIM, H. C. The development of date the results obtained from a community culture-specific health education packages to in- stigma survey would be to compare the re- crease case-finding of leprosy in Sarawak. South- sults with information obtained from those east Asian J. Trop. Med. Pub. Health 17(3) (1986) affected by the stigma through an instru- 427Ð432. 10. CROFT, R. P., and CROFT, R. A. Knowledge, ment such as the Participation Scale (A cul- attitude and practice regarding leprosy and tuber- ture-free questionnaire-based instrument, culosis in Bangladesh. Lepr. Rev. 70(1) (1999) currently being developed in an interna- 34Ð42. tional multi-center study; for more informa- 11. CROOK, N., RAMASUBBAN, R., SAMY, A., and tion, please contact the author) or Anan- SINGH, B. An educational approach to leprosy daraj’s Dehabilitation Scale (1). control: an evaluation of knowledge, attitudes and practice in two poor localities in Bombay, India. CONCLUSION Lepr. Rev. 62(4) (1991) 395Ð401. 12. DE STIGTER, D. H., DE GEUS, L., and HEYNDERS, Many attempts have been made to assess M. L. Leprosy: between acceptance and segrega- the intensity and qualities of stigma attached tion. Community behaviour towards persons af- to leprosy, but no standard instrument has fected by leprosy in eastern Nepal. Lepr. Rev. been developed for this purpose. The conse- 71(4) (2000) 492Ð498. quences of stigma are far-reaching, affecting 13. FRIST, T. Don’t Treat Me Like I Have Leprosy! 1st the lives of countless individuals, as well as edn. 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