Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia

Dadun Dadun, Ruth Peters, Mimi Lusli, Beatriz Miranda-Galarza, Wim van Brakel, Marjolein Zweekhorst, Rita Damayanti, Irwanto Irwanto, Joske Bunders


Purpose: This article explores the complexities of leprosy-related stigma and the potential effectiveness of a socio-economic intervention in Cirebon District, Indonesia.

Methods: A qualitative approach was adopted. 53 people affected by leprosy were interviewed, and 17 focus group discussions were conducted among people affected by leprosy, community and religious leaders, and health providers and other key persons who were all purposively selected.

Results:  People affected by leprosy face major socio-economic consequences. This was confirmed by key persons. Several opportunities for a possible socio-economic intervention were perceived, as also the barriers. People affected by leprosy are constrained by certain aspects of the health system (e.g., the health providers’ negative attitudes), views in society (e.g., misunderstandings about the condition, stigma), and the physical and social consequences of the disease (impairments, feelings of shame). Study participants identified strategies to deal with these barriers, as well as specific activities for a socio-economic intervention; in particular, the training of staff responsible for implementation.

Conclusion and Implications: Socio-economic interventions in the field of leprosy need to anticipate the barriers and develop strategies to deal with them. Cooperation between people working in the health system and those in the welfare / financial system is needed, to improve the quality of life of people affected by leprosy


Health system; Socio-economic status; Knowledge; Beliefs; Qualitative study

Full Text:



Arole S,Premkumar R, Arole R, Maury M, Saunderson P (2002). Social stigma: a comparative qualitative study of integrated and vertical care approaches to leprosy. Leprosy review, 73(2), pp.186–96. PMid:12192975

Awofeso (1992). Appraisal of the knowledge and attitude of Nigerian nurses toward leprosy. Leprosy review, 63(2), pp.169–172. http://dx.doi.org/10.5935/0305-7518.19920022

Barkataki P, Kumar S, Rao PSS (2006). Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India. Leprosy review, 77(1), pp.62–68. PMid:16715691

Barrett R (2005). Self-mortification and the stigma of leprosy in northern India. Medical anthropology quarterly, 19(2), pp.216–230. http://dx.doi.org/10.1525/maq.2005.19.2.216

Briden A, Maguire E(2003). An assessment of knowledge and attitudes towards leprosy / Hansen's disease amongst healthcare workers in Guyana. Leprosy review, 74(2), pp.154–162. PMid:12862257

Brouwers C, Brakel WH van, Cornielje H (2011). Quality of Life, Perceived Stigma, Activity and Participation of People With Leprosy-Related Disabilities in South-East Nepal. Disability, CBR & Inclusive Development, 22(1), pp.16–34. http://dx.doi.org/10.5463/dcid.v22i1.15

Brown W (2006). Can social marketing approaches change community attitudes towards leprosy? Leprosy review, 77(2), pp.89–98. PMid:16895065

Calcraft JH (2006). The effects of the stigma of leprosy on the income generation of leprosy affected people in the Terai area of South East Nepal. Asia Pacific Disability Rehabilitation Journal, 17(2), pp.73–89.

Cross HA, Heijnders M, Dalal A, Sermrittirong S, Mak S (2011). Interventions for Stigma Reduction – Part 2: Practical Applications. Disability, CBR & Inclusive Development, 22(3), pp.71–80.

Dalal AK (2006). Social interventions to moderate discriminatory attitudes: the case of the physically challenged in India. Psychology, health & medicine, 11(3), pp.374–382. http://dx.doi.org/10.1080/13548500600595392. PMid:17130074

Ebenso B, Fashona A, Ayuba M, Idah M, Adeyemi G, S-Fada S (2007). Impact of socio-economic rehabilitation on leprosy stigma in Northern Nigeria: findings of a retrospective study. Asia Pacific Disability Rehabilitation Journal, 18(2), pp.98–119.

Fiasse J (2011). Impact of micro credit scheme for persons with physical disabilities in Herat, Afghanistan. Disability,CBR and Inclusive Development, 22(1), pp.73–84. http://dx.doi.org/10.5463/dcid.v22i1.8

Heijnders ML (2004a). Experiencing leprosy: perceiving and coping with leprosy and its treatment. A qualitative study conducted in Nepal. Leprosy review, 75(4), pp.327–337. PMid:15682970

Heijnders ML (2004b). The dynamics of stigma in leprosy. International Journal of Leprosy and other Mycobacterial Diseases, 72(4), pp.437–447. http://dx.doi.org/10.1489/1544-581X(2004)72<437:TDOSIL>2.0.CO;2

Iyor F (2005). Knowledge and attitude of Nigerian physiotherapy students about leprosy. Asia Pacific Disability Rehabilitation Journal, 16(1), pp.85–92.

Ministry of Health Indonesia (2007). National Action Plan Leprosy control 2008-2010, Ministry of Health.

Ministry of Health Indonesia (2012). Annual Leprosy Statistics Indonesia 2011.

Nicholls PG, Wiens C, Smith WCS (2003). Delay in Presentation in the Context of Local Knowledge and Attitude Towards Leprosy - The Results of Qualitative Fieldwork in Paraguay. International Journal of Leprosy and Other Mycobacterial Diseases, 71(3), pp.198–209. http://dx.doi.org/10.1489/1544-581X(2003)71<198:DIPITC>2.0.CO;2

Nuwagaba EL, Nakabugo M, Tumukunde M, Ngirabakunze E, Hartley S, Wade A (2012). Accessibility to micro-finance services by people with disabilities in Bushenyi District, Uganda. Disability & Society, 27(2), pp.175–190. http://dx.doi.org/10.1080/09687599.2011.644929

Opala J, Boillot F (1996). Leprosy among the Limba: illness and healing in the context of world view. Social Science & Medicine, 42(1), pp.3–19. http://dx.doi.org/10.1016/0277-9536(95)00026-7

Rao PSS (2010). Study on differences and similarities in the concept and origin of leprosy stigma in relation to other health-related stigma. Indian Journal of Leprosy, 82, pp.117–121. PMid:21449222

Rao PSS, Raju MS, Barkataki A, Nanda NK, Kumar S (2008). Extent and correlates of leprosy stigma in Rural India. Indian Journal of Leprosy, 80(2), pp.167–174. PMid:19425512

Schuller I, van Brakel W (2010). The way women experience disabilities and especially disabilities related to leprosy in rural areas in South Sulawesi, Indonesia. Asia Pacific Disability Rehabilitation Journal, 21(1), pp.60–70.

Stevelink SAM, van Brakel WH, Augustine V (2011). Stigma and social participation in Southern India: differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychology, Health & Medicine, 16(6), pp.695–707. http://dx.doi.org/10.1080/13548506.2011.555945. PMid:21391136

Tsai AC, Bangsberg DR , Weiser SD (2013). Harnessing Poverty Alleviation to Reduce the Stigma of HIV in Sub-Saharan Africa. PLoS Medicine, 10(11). http://dx.doi.org/10.1371/journal.pmed.1001557. PMid:24319400

Tsutsumi A, Izutsu T, Islam AM, Maksuda AN, Kato H, Wakai S (2007). The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Social science & medicine (1982), 64(12), pp.2443–2453. http://dx.doi.org/10.1016/j.socscimed.2007.02.014. PMid:17382441

Varkevisser CM, Lever P, Alubo O, Burathoki K, Idawani C, Moreira TM, Patrobas P, Yulizar M (2009). Gender and leprosy: case studies in Indonesia, Nigeria, Nepal and Brazil. Leprosy review, 80(1), pp.65–76. PMid:19472853

Velema JP, Ebenso B, Fuzikawa L (2008). Evidence for the effectiveness of rehabilitation-in- the-community programmes. Lepr Rev, 79(May), pp.65–82. PMid:18540238

Verma DK, Katoch VM, Katoch K, Gupta SC, Jain P, Tomar S, Yaduvanshi AK(2009). A Study of Social Stigma by the Neighbours Among Leprosy patients of Agra and Kanpur District of U.P. Indian Journal of Community Health, 22, pp.8–12.

Wagner G, Rana Y, Linnemayr S, Balya J, Buzaalirwa L (2012). A qualitative exploration of the economic and social effects of microcredit among people living with HIV/AIDS in Uganda. AIDS Research and Treatment, 2012. http://dx.doi.org/10.1155/2012/318957. PMid:22778923. PMCid:PMC3388281

van de Weg N, Post EB, Lucassen R, De Jong JT, Van Den Broek J (1988). Explanatory models and help-seeking behaviour of leprosy patients in Adamawa State, Nigeria. Lepr Review, 69(4), pp.382–389.

Withington SG, Joha S, Baird D, Brink M, Brink J (2003). Assessing socio-economic factors in relation to stigmatisation, impairment status, and selection for socio-economic rehabilitation: a 1-year cohort of new leprosy cases in north Bangladesh. Leprosy review, 74(2), pp.120–132. PMid:12862253

World Health Organisation (2011). Guidelines for strengthening participation of persons affected by leprosy in leprosy services, New Delhi, India.

World Health Organisation (2015). Global leprosy update, 2014: need for early case detection. Weekly Epidemiological Record, (36), pp.No. 36, 2015, 90, 461–476

DOI: http://dx.doi.org/10.5463/dcid.v27i3.551


  • There are currently no refbacks.

Copyright (c) 2016 Dadun Dadun, Ruth Peters, Mimi Lusli, Beatriz Miranda-Galarza, Wim van Brakel, Marjolein Zweekhorst, Rita Damayanti, Irwanto Irwanto, Joske Bunders

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Supported by:


© Disability, CBR & Inclusive Development