Owning the narrative: Exploring the impact of a creative storytelling intervention on stigma and empowerment among persons affected by leprosy in Pakistan
7 affiliations
- 1Department of International Public Health, Liverpool School of Tropical Medicine, Liverpool, United Kingdom
- 2German Leprosy and TB Relief Association (DAHW), Würzburg, Germany
- 3Marie Adelaide Leprosy Centre (MALC), Karachi, Pakistan
- 4Department of Global Health, Institute of Public Health and Nursing Research, University of Bremen, Bremen, Germany
- 5Heidelberg Institute of Global Health, University of Heidelberg, Heidelberg, Germany
- 6Faculty of Pharmaceutical, Biomedical and Veterinary Sciences, University of Antwerp, Antwerp, Belgium
- 7Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium
Abstract
Introduction: Despite being curable, leprosy-related stigma in Pakistan persists, undermining dignity, delaying care, and hindering progress toward zero-leprosy targets. Empowerment is critical in counteracting stigma and restoring agency among affected persons. Participatory, contact-based storytelling has potential to reduce stigma and strengthen empowerment, but evidence remains limited. This study evaluates a participatory storytelling intervention involving persons affected by leprosy in Karachi. Objectives: This study investigates how a participatory storytelling intervention influences stigma and empowerment among persons affected by leprosy in Pakistan. It explores changes in participants’ experiences, examines the mechanisms through which storytelling engages with stigma and identifies practical insights to strengthen future intervention design. Methods: We conducted a qualitative study following the 2024–25 participatory storytelling pilot at MALC, Karachi. Persons affected by leprosy who participated in the intervention were purposively sampled (age 30–65 years); sixteen participated in photovoice and fourteen completed in-depth interviews (IDIs) (thirteen of which had also participated in photovoice) (total n = 17). Data were analysed thematically using the Social Ecological Model (SEM). Results: The programme supported a shift from shame and concealment to greater self-acceptance, confidence and openness. Peer groups and creative storytelling built solidarity, a sense of belonging and transferable skills, while organisational endorsement enhanced participants’ visibility and roles. However, stigma remained reinforced by community misconceptions, gender norms and practical barriers. Overall, the intervention’s greatest effect was at the individual level, reducing self and anticipated stigma, with intrapersonal empowerment emerging as the primary gain. Conclusion: Participatory storytelling enhanced identity and empowerment, but broader social change remained constrained by gender norms, visible disability, and structural barriers. Strengthening impact requires sustained community contact, supported peer educators, inclusive outreach to women and persons with visible impairments, and links to socioeconomic opportunities. Embedding peer-led storytelling within skin NTD services and national and WHO strategies can support community ownership and sustainability. Author summary: Leprosy is a curable disease, yet many people affected by it continue to experience stigma that affects their mental health, confidence, relationships and health seeking behaviour. In Pakistan, stigma remains a major barrier to achieving zero-leprosy goals and improving quality of life. Our study explored the degree to which a participatory storytelling intervention, where persons affected by leprosy share their experiences through creative methods, supported empowerment and reduced stigma. We conducted a qualitative study with participants involved in a storytelling pilot intervention in Karachi, using interviews and photovoice to explore their experiences. Participants described the transition from shame and secrecy toward openness, greater self-confidence and self-acceptance. The storytelling process encouraged peer support, strengthened social connections and helped participants develop new skills and a stronger sense of identity. However, persistent community misconceptions, gender norms, visible disability and economic constraints limited broader social change. Our findings suggest that participatory storytelling interventions present a promising approach for reducing internalised stigma and strengthening individual empowerment among persons affected by leprosy. To achieve wider impact, storytelling initiatives should be combined with sustained community engagement, inclusive outreach and integration into skin neglected tropical disease (NTD) services and broader social support programmes.
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BibTeX
@article{ibrahim2026owning,
title = {{Owning the narrative: Exploring the impact of a creative storytelling intervention on stigma and empowerment among persons affected by leprosy in Pakistan}},
author = {Nervana Ibrahim and Anil Fastenau and Abdul Salam and Fabian Schlumberger and Matthew Willis and Lucy McKane and Ali Murtaza and Maaike Seekles and Laura Dean and India Hotopf},
journal = {PLOS Neglected Tropical Diseases},
year = {2026},
month = nov,
doi = {10.1371/journal.pntd.0014046},
url = {https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0014046},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Owning the narrative: Exploring the impact of a creative storytelling intervention on stigma and empowerment among persons affected by leprosy in Pakistan
AU - Nervana Ibrahim
AU - Anil Fastenau
AU - Abdul Salam
AU - Fabian Schlumberger
AU - Matthew Willis
AU - Lucy McKane
AU - Ali Murtaza
AU - Maaike Seekles
AU - Laura Dean
AU - India Hotopf
PY - 2026
DA - 2026/11/02
JO - PLOS Neglected Tropical Diseases
DO - 10.1371/journal.pntd.0014046
UR - https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0014046
AB - Introduction: Despite being curable, leprosy-related stigma in Pakistan persists, undermining dignity, delaying care, and hindering progress toward zero-leprosy targets. Empowerment is critical in counteracting stigma and restoring agency among affected persons. Participatory, contact-based storytelling has potential to reduce stigma and strengthen empowerment, but evidence remains limited. This study evaluates a participatory storytelling intervention involving persons affected by leprosy in Karachi. Objectives: This study investigates how a participatory storytelling intervention influences stigma and empowerment among persons affected by leprosy in Pakistan. It explores changes in participants’ experiences, examines the mechanisms through which storytelling engages with stigma and identifies practical insights to strengthen future intervention design. Methods: We conducted a qualitative study following the 2024–25 participatory storytelling pilot at MALC, Karachi. Persons affected by leprosy who participated in the intervention were purposively sampled (age 30–65 years); sixteen participated in photovoice and fourteen completed in-depth interviews (IDIs) (thirteen of which had also participated in photovoice) (total n = 17). Data were analysed thematically using the Social Ecological Model (SEM). Results: The programme supported a shift from shame and concealment to greater self-acceptance, confidence and openness. Peer groups and creative storytelling built solidarity, a sense of belonging and transferable skills, while organisational endorsement enhanced participants’ visibility and roles. However, stigma remained reinforced by community misconceptions, gender norms and practical barriers. Overall, the intervention’s greatest effect was at the individual level, reducing self and anticipated stigma, with intrapersonal empowerment emerging as the primary gain. Conclusion: Participatory storytelling enhanced identity and empowerment, but broader social change remained constrained by gender norms, visible disability, and structural barriers. Strengthening impact requires sustained community contact, supported peer educators, inclusive outreach to women and persons with visible impairments, and links to socioeconomic opportunities. Embedding peer-led storytelling within skin NTD services and national and WHO strategies can support community ownership and sustainability. Author summary: Leprosy is a curable disease, yet many people affected by it continue to experience stigma that affects their mental health, confidence, relationships and health seeking behaviour. In Pakistan, stigma remains a major barrier to achieving zero-leprosy goals and improving quality of life. Our study explored the degree to which a participatory storytelling intervention, where persons affected by leprosy share their experiences through creative methods, supported empowerment and reduced stigma. We conducted a qualitative study with participants involved in a storytelling pilot intervention in Karachi, using interviews and photovoice to explore their experiences. Participants described the transition from shame and secrecy toward openness, greater self-confidence and self-acceptance. The storytelling process encouraged peer support, strengthened social connections and helped participants develop new skills and a stronger sense of identity. However, persistent community misconceptions, gender norms, visible disability and economic constraints limited broader social change. Our findings suggest that participatory storytelling interventions present a promising approach for reducing internalised stigma and strengthening individual empowerment among persons affected by leprosy. To achieve wider impact, storytelling initiatives should be combined with sustained community engagement, inclusive outreach and integration into skin neglected tropical disease (NTD) services and broader social support programmes.
SN - 1935-2735
ER -