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

Dadun Dadun (1), Ruth Peters (2), Mimi Lusli (3), Beatriz Miranda-Galarza (4), Wim van Brakel (5), Marjolein Zweekhorst (6), Rita Damayanti (7), Irwanto Irwanto (8), Joske Bunders (9)
(1) Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia; Center for Health Research University of Indonesia, G Building, 2nd floor, Room 211, Faculty of Public Health Universitas Indonesia, Campus UI Depok, West Java 16424, ID; Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, Netherlands,
(2) Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, Netherlands,
(3) Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia, Indonesia,
(4) Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, Netherlands,
(5) Disability Studies, VU University, and Netherlands Leprosy Relief, Technical Department, Amsterdam, Netherlands,
(6) Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, Netherlands,
(7) Centre for Health Research, Faculty of Public Health, Universitas Indonesia, Indonesia,
(8) Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia, Indonesia,
(9) Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, Netherlands
https://doi.org/10.5463/dcid.v27i3.551

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Issue
Vol. 27 No. 3 (2016): Autumn 2016
Submitted
September 14, 2020
Published
November 14, 2016
Keywords:
    Health system, Socio-economic status, Knowledge, Beliefs, Qualitative study, Cirebon
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Abstract

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

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Authors

Dadun Dadun
Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia; Center for Health Research University of Indonesia, G Building, 2nd floor, Room 211, Faculty of Public Health Universitas Indonesia, Campus UI Depok, West Java 16424, ID; Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam
dadun.phui@gmail.com (Primary Contact)
Ruth Peters
Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam
Mimi Lusli
Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia
Beatriz Miranda-Galarza
Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam
Wim van Brakel
Disability Studies, VU University, and Netherlands Leprosy Relief, Technical Department, Amsterdam
Marjolein Zweekhorst
Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam
Rita Damayanti
Centre for Health Research, Faculty of Public Health, Universitas Indonesia
Irwanto Irwanto
Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia
Joske Bunders
Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam
Author Biographies

Dadun Dadun, Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia; Center for Health Research University of Indonesia, G Building, 2nd floor, Room 211, Faculty of Public Health Universitas Indonesia, Campus UI Depok, West Java 16424, ID; Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam

Dadun holds a BA degree in Public Administration from the Faculty Social and Political Science (1994) and a MPH from Faculty of Public Health Universitas Indonesia (2004), Depok, Indonesia. He is a PhD candidate in Faculty of Earth and Life Sciences Vrije University of Amsterdam in the Netherlands (2012-2016). He is a senior researcher and appointed Executive Secretary of the Center for Health Research Universitas Indonesia. He is also a research associate of the of the Centre for Disability Studies and the Centre for Child Protection at the Faculty of Social and Politic Sciences, Universitas Indonesia.

Ruth Peters, Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam

Ruth Peters holds a BSc degree in Physiotherapy from Hogeschool Arnhem and Nijmegen, a MSc in Public Health Research from VU University Amsterdam and an MA in Development Studies from the Institute of Development Studies, Sussex University, Brighton. She defended her PhD thesis on stigma reduction in leprosy in 2015. Her research interests are mixed methods, transdisciplinary research, participatory research, health-related stigma and disability.

Mimi Lusli, Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia

Mimi Lusli has a BA from IKIP Santa Dharma Jogjakarta (1985-1989), a MSc from Universitas Indonesia (UI) Depok (1995-1997), and a MA from Leeds University, England. She is PhD candidate in Faculty of Earth and Life Sciences Vrije Universiteit of Amsterdam in the Netherlands (2011-2016).  She was founder and Director of MIMI Institute Indonesia, and research associate at the Centre for Disability Studies and the Centre for Child Protection at the Faculty of Social and Politic Sciences, Universitas Indonesia.

Beatriz Miranda-Galarza, Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam

Beatriz Miranda-Galarza is a Social Scientist. She currently works as a researcher at the Instituto de Estudios Criticos.

Wim van Brakel, Disability Studies, VU University, and Netherlands Leprosy Relief, Technical Department, Amsterdam

Wim van Brakel holds a medical degree from Amsterdam University, an MSc in Epidemiology from the London School of Hygiene & Tropical Medicine and a PhD in neuro-epidemiology from Utrecht University. Dr. van Brakel has worked for 17 years in Nepal and India for international NGOs, specializing in leprosy control, public health, prevention of disabilities, rehabilitation and research. He worked at the Royal Tropic Institute (KIT), Amsterdam, as Senior Adviser Public Health from 2003 to February 2014. He now works as Senior Technical Consultant for Netherlands Leprosy Relief and as researcher for Disability Studies in Nederland at the VU University Medical Centre, Amsterdam. His research interests include epidemiology of leprosy, peripheral neuropathy in leprosy, disability and rehabilitation, social participation, stigma and clinimetrics. He has published over 80 papers and chapters in international journals and books.

Marjolein Zweekhorst, Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam

Marjolein B M Zweekhorst graduated in Medical Biology and holds a PhD in the institutionalisation of an interactive approach to technological innovation from the VU University Amsterdam. She is currently an associate professor at the Athena Institute, VU University, Amsterdam. Her current research is focused on methodology development for interactive policy and interactive technology development in the field of (international) public health, biotechnology and biomedical sciences and on innovations in education. She is also program director of the Master's programme in Management Policy-Analysis and Entrepreneurship in Health and Life Sciences.

Rita Damayanti, Centre for Health Research, Faculty of Public Health, Universitas Indonesia

Rita Damayanti holds a BA in Psychology Universitas Indonesia (1987), a MSc in Public Health (MSPH) from University of California Los Angeles (1992) and a PhD in public health from Faculty of Public Health Universitas Indonesia (2007), Depok, Indonesia. She is lecturer at the Department of Health Education and Behavioral Science and also a senior researcher and appointed Director of the Center for Health Research Universitas Indonesia. She is also a member of the Association of Indonesian Health Promotion (PPKMI) and of the Indonesian Public health association  (IAKMI).

Irwanto Irwanto, Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia

Irwanto holds a MSc degree in Psychology from Gadjah Mada University, Yogjakarta, Indonesia and an MSc (1982) degree and a PhD (1992) in Child Development and Family Studies from Purdue University, USA. He was a post-doctoral fellow at University of Illinois at Chicago. He was appointed Professor of Psychology at Atma Jaya University in 2008. He is an adjunct pofessor at the Department of Social Welfare and the director of the Centre for Disability Studies and the Centre for Child Protection at the Faculty of Social and Politic Sciences, Universitas Indonesia.

Joske Bunders, Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam

Joske F G Bunders graduated in Chemistry and Physics at the University of Amsterdam and wrote her PhD thesis on participatory approaches to the development of science-based innovations in agriculture at the VU University Amsterdam in 1994. She has been director of the Athena Institute for research on innovation and communication in Health and Life Sciences from 1981 till 2014. She was appointed Professor of Biology and Society at the VU University Amsterdam in 2000. Her specific field of interest in which she has published widely is the linking of knowledge and expertise of end users (e.g. small-scale farmers or patients) with developments in modern science and national and international policy.

1.
Dadun D, Peters R, Lusli M, Miranda-Galarza B, van Brakel W, Zweekhorst M, Damayanti R, Irwanto I, Bunders J. Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia. DCIDJ [Internet]. 2016 Nov. 14 [cited 2025 Jun. 24];27(3):5-23. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/229
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