Between stigma, misinformation and delay of diagnosis: healthcare worker’s perspectives on leprosy care in Sindh, Pakistan

TL;DR

This study explores how stigma and misinformation affect leprosy care in Pakistan, based on healthcare workers' perspectives.

Contribution

The study provides new insights into the intersection of stigma, misinformation, and structural barriers in leprosy care in low-endemic settings.

Findings

Stigma and misinformation are shaped by factors like lack of public awareness and patriarchal norms.

Healthcare workers reported delays in diagnosis and psychological distress among leprosy patients.

Gender dynamics influence how patients seek and adhere to care.

Abstract

Beyond the physical symptoms of leprosy, persons affected by leprosy (PAL) continue to face stigma and discrimination, also in the low-endemic setting of Pakistan. Leprosy-related stigma and misinformation impacts treatment adherence and health-seeking behavior of PAL, ultimately increasing risks of disability and increased disease transmission. Healthcare workers (HCW) play a pivotal role in detecting, diagnosing, counseling and supporting PAL. Their insights are essential in developing effective interventions to combat the stigma and improve the overall well-being and confidence in healthcare of those affected.

Twenty-one in-depth individual interviews were conducted with dermatologists, dermatology residents, general physicians, leprosy technicians and nurses. A combined inductive-deductive thematic analysis approach was applied based on a “conceptual framework of the dimensions of stigma, its manifestations and impact on health outcomes” developed by Mukerji and Turan.

The study revealed that stigma and misinformation were shaped by contextual factors, including the absence of a national leprosy program, limited public awareness, patriarchal gender norms and socio-economic disadvantages. HCW reported frequent delays in diagnosis, psychological distress, limited awareness and socio-economic burden due to leprosy and its stigma among PAL. Although HCW demonstrated strong medical knowledge, low levels of leprosy exposure outside specialized centers reduced diagnostic confidence of non-dermatologists. Trust-building, psychosocial counseling and sensitive handling of disclosure proved essential for treatment adherence. Gender dynamics also affected care: women were more likely to hide symptoms due to the anticipated stigma, whereas men were more likely to comprise treatment adherence due to economic responsibilities.

In low-endemic settings like Pakistan, stigma, misinformation, and structural barriers intersect to drive diagnostic delay and limited access to care. Strengthening leprosy care requires (1) Increasing public awareness and reaching broader audiences through social media and digital health tools (2) collaboration with local and alternative medicine providers to reduce misdiagnosis (3) targeted training for HCW on psychosocial counselling and gender responsive care; and (4) evaluating and improving care interventions through close collaboration with PAL and community leaders. Further, integrating leprosy control into national programs and mental health services would improve comprehensive care and support stigma reduction.

Not applicable.

The online version contains supplementary material available at 10.1186/s12879-026-12551-z.

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