Experiences of stigma among caregivers of children with disabilities in Freetown

Abstract

Stigma surrounding disability continues to shape the lives of affected individuals and their families across diverse contexts. Studies indicate that caregivers of children living with disabilities (CLWDs) face stigma through their close association with the CLWD and the internalization of these beliefs. In Sierra Leone, experiences of stigma among caregivers may be intensified by beliefs that link disability to spiritual or moral failings of the CLWD's family and extend blame for the child's condition to the caregiver. This study explores how caregivers experience and respond to these intersecting forms of stigma and the social support they encounter or desire. We conducted six focus group discussions with 37 caregivers of CLWDs in Freetown, Sierra Leone, recruited through hospitals and a non-governmental organization providing therapeutic services. Discussions were guided by a semi-structured interview protocol and analyzed using qualitative content analysis. Caregivers reported experiencing stigma through labeling, avoidance, societal blame, and coercion into traditional practices. Stigma was deeply rooted in cultural narratives that attribute disability to supernatural causes, often extending blame to caregivers. Participants employed three overarching strategies to navigate stigma: withdrawing, coping (e.g., spiritual reframing, focusing on positive interactions), and resisting (e.g., challenging superstitious beliefs, advocating for inclusion). Despite some positive experiences of empathy and social inclusion, caregivers expressed a strong need for more practical support, community awareness, and holistic interventions to reduce stigma and foster understanding. This study sheds light on how intersecting forms of stigma-stigma by association, attributions of blame, and internalized stigma-shape the experiences of caregivers in Sierra Leone. While participants demonstrated resilience and adaptive strategies, the dual stigma of association and societal blame underscores the urgent need for inclusive policies and community-based interventions. Amplifying the voices of caregivers and addressing their needs holistically are essential steps toward reducing stigma and creating supportive environments. This study contributes to the broader discourse on caregiving and stigma, offering insights for research and interventions in similar cultural contexts.

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