Stigma in Context: Exploring the cultural and gender dimensions of health-related stigma through lived experiences

Health-related stigma—characterised by stereotyping, prejudice, and discrimination in contexts of power—is a widespread issue that affects people across the globe, in both high- and low-income settings. It operates not only at the individual level but also through relationships, families, communities, organisations, and institutions, including legal and policy systems. While research on health-related stigma is proliferating, it remains unclear how stigma may be shaped and impact people differently depending on their social and cultural context. Additionally, we still lack a clear understanding of how stigma operates across different social levels, from personal experiences and interpersonal dynamics to broader social and structural forces. This thesis aims to explore how health-related stigma is characterised and manifests in the daily lives of men and women in context, focusing specifically on cultural and gendered interactions within and across socioecological levels (intra-, interpersonal and structural). By uncovering these mechanisms, this thesis seeks to offer recommendations for contextually tailored stigma assessment and reduction strategies. Using a qualitative case study design, this thesis presents research on two specific stigmatised health conditions in the field of mental and physical health: ADHD and leprosy. Studies set out to collect and analyse perspectives and experiences various stakeholder groups on health-related stigma towards men and women, including persons affected by stigmatised conditions, family members, educational and health professionals as well as stigma researchers, using semi-structured interviews, FGDs and survey research complemented by literature review and researcher reflections. Both case studies illustrate differences in drivers and characterisations of stigma, including variations in the explicitness or subtlety of stigma related to ADHD and leprosy. However, there are common stigma manifestations – encompassing social exclusion, rejection, and reduced support and care. In terms of stigma assessment, the findings highlight the need for improved stigma assessment tools, including better measurement properties sensitive to cultural nuances and measuring actual differential treatment rather than reported behaviours (e.g., explicit stigma), among others. In terms of stigma reduction, case studies reveal how key cultural and/or gendered interactions contribute to shaping stigma, revealing critical intervention points per context (e.g., accessible and personalised (peer) support services for ADHD in the Netherlands and family support and engagement in health care for leprosy in Nepal). Overall, these findings underscore the critical need for accessible and quality health and support services, as well as the involvement of key stakeholder groups such as individuals with lived experiences, family members, and professionals in mitigating health-related stigma. Finally, the thesis offers recommendations for exploring and addressing contextual and cultural nuances of health-related stigma in the future.