Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia
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).
Keywords
Authors
How to Cite
Download Citation
License
Copyright © 2014 The Author(s)

This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License By-NC-ND 4.0 that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access ).
Similar Articles
- Maria Luisa Toro, Yasmin Garcia, Alejandra Manoela Ojeda, David J Dausey, Jon Pearlman, Quantitative Exploratory Evaluation of the Frequency, Causes and Consequences of Rehabilitation Wheelchair Breakdowns delivered at a Paediatric Clinic in Mexico , Disability, CBR & Inclusive Development: Vol. 23 No. 3 (2012): Autumn
- Consuelo Gonzalez-Suarez, Karen Grimmer, Isaias Alipio, Elda Grace Anota-Canencia, Maria Luisa Santos-Carpio, Janine Margarita Dizon, Lauren Liao, Jan Tyrone Cabrera, Romil Martinez, Eulalia Beredo, Carolina Valdecanas, Vania Yu, Stroke Rehabilitation in the Philippines: An Audit Study , Disability, CBR & Inclusive Development: Vol. 26 No. 3 (2015): Autumn 2015
- Zinia T Nujum, TV Anilkumar, K Vijayakumar, TS Anish, Hisham Moosan, A Framework for Healthcare Provision to Children with Intellectual Disability , Disability, CBR & Inclusive Development: Vol. 23 No. 4 (2012): Winter
- Swati Ashok Kurne, Anita Dipak Gupta, Impact of Long-term Use of Adaptive Seating Device among Children with Cerebral Palsy and their Families in Mumbai, India: A feasibility study , Disability, CBR & Inclusive Development: Vol. 27 No. 3 (2016): Autumn 2016
- Amelia Ganefianty, Ardi Zulfariansyah, Titin Mulyati, The Role of Interdisciplinary Teams in Preventing ICU-Acquired Weakness: A Systematic Review , Disability, CBR & Inclusive Development: Vol. 37 No. 2 (2026): Summer Issue
- Inoka E Weerasinghe, P Fonseka, S D Dharmaratne, J A M S Jayatilake, Andrea C Gielen, Barriers in Using Assistive Devices among a Group of Community-dwelling Persons with Lower Limb Disabilities in Sri Lanka , Disability, CBR & Inclusive Development: Vol. 26 No. 1 (2015): Spring 2015
- Peter Ingemar Karlsudd, The Search for Successful Inclusion , Disability, CBR & Inclusive Development: Vol. 28 No. 1 (2017): Spring 2017
- Marlee Elizabeth Quinn, Cynthia L Hunter, Sumanta Ray, Mohammad Morshedul Quadir Rimon, Krishno Sen, Robert Cumming, The Double Burden: Barriers and Facilitators to Socioeconomic Inclusion for Women with Disability in Bangladesh , Disability, CBR & Inclusive Development: Vol. 27 No. 2 (2016): Summer 2016
- Hester M van Biljon, Bianca Salie, Jancke C van Wyk, Jessica Daniel, Lize-Mari Kersop, Michaela Naidoo, Lana van Niekerk, Access to Public Healthcare Rehabilitation Services by Persons with Disabilities in South Africa: a Scoping Review , Disability, CBR & Inclusive Development: Vol. 33 No. 3: (Autumn) - 2022
- Henry McCarthy, Self-Advocacy and Ally-Advocacy for Disability Justice: Organisational, Psychosocial, and Political Resources , Disability, CBR & Inclusive Development: Vol. 32 No. 2 (2021): Summer
You may also start an advanced similarity search for this article.
Most read articles by the same author(s)
- Maartje J Meis, Anna Tiny van 't Noordende, Liesbeth F Mieras, Nand Lal Banstola, Krishna P Dhakal, Dirk R Essink, Wim H van Brakel, The Impact of Leprosy and Physical Disability on Marital and Sexual Relationships of Married Nepali Men , Disability, CBR & Inclusive Development: Vol. 33 No. 1: (Spring) - 2022
- Dadun Dadun, Ruth Peters, Mimi Lusli, Beatriz Miranda-Galarza, Wim van Brakel, Marjolein Zweekhorst, Rita Damayanti, Irwanto Irwanto, Joske Bunders, Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia , Disability, CBR & Inclusive Development: Vol. 27 No. 3 (2016): Autumn 2016
- Noortje P M Lubbers, Reshma Parvin Nuri, Wim H van Brakel, Huib Cornielje, Sexual Health of Women with Spinal Cord Injury in Bangladesh , Disability, CBR & Inclusive Development: Vol. 23 No. 3 (2012): Autumn
- Marie-Julie J Heeren, Lai Ky, Wim H van Brakel, Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study , Disability, CBR & Inclusive Development: Vol. 25 No. 3 (2014): Autumn 2014