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Original Research Articles

Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

Authors:

Ruth M H Peters ,

Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, NL
About Ruth M H

Ruth M H Peters holds a BSc degree in Physiotherapy from Hogeschool Arnhem and Nijmegen, an MSc in Public Health Research from the VU University Amsterdam and an MA in Development Studies from the Institute of Development Studies, Sussex University, Brighton. She is currently pursuing a PhD on stigma reduction in leprosy in Indonesia. 

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Miranda E Hofker,

Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, NL
About Miranda E

Miranda E Hofker received her BSc degree in Occupational therapy from Hogeschool Arnhem and Nijmegen and her MSc degree in Health Sciences from the VU University of Amsterdam in 2013. At the moment she works as an occupational therapist at RMC Groot Klimmendaal

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Wim H van Brakel,

Netherlands Leprosy Relief, NL
About Wim H

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.

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Marjolein B M Zweekhorst,

Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, NL
About Marjolein B M

Marjolein B M Zweekhorst graduated in Medical Biology at the VU University Amsterdam 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 Management Policy-Analysis and Entrepreneurship in the Health and Life Sciences.

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Francisia S S E Seda,

Centre for Disability Studies, Faculty of Social and Politic Sciences, Universitas Indonesia, ID
About Francisia S S E

Francisia S S E Seda graduated from Department of Sociology, University of Indonesia in 1987 and two years later achieved her master degree in Asian Studies from Cornell University, USA. She obtained her PhD from University of Wisconsin, Madison, USA. She is currently a lecturer and her fields of study are sociological theory, sociology of gender and sociology of education.

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Irwanto Irwanto,

Centre for Disability Studies, Faculty of Social and Politic Sciences, Universitas Indonesia, ID
About Irwanto

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.

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Joske F G Bunders

Athena Institute, Faculty of Earth and Life Sciences, VU University, Amsterdam, NL
About Joske F G

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.

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Abstract

Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others.

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

How to Cite: Peters, R.M.H., Hofker, M.E., van Brakel, W.H., Zweekhorst, M.B.M., Seda, F.S.S.E., Irwanto, I. and Bunders, J.F.G., 2014. Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia. Disability, CBR & Inclusive Development, 25(4), pp.5–21. DOI: http://doi.org/10.5463/dcid.v25i4.389
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Published on 31 Dec 2014.

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