Luetke Lanfer Hanna, Anderson Elizabeth, Bah Fatmata, Krawiec Sarah, Rossmann Constanze, Vines Anna
School of Public Health, Bielefeld University, Universitaetsstrasse 25, 33615, Bielefeld, Germany.
Enable the Children, World Hope International, Freetown, Sierra Leone.
Sci Rep. 2025 Jun 20;15(1):20236. doi: 10.1038/s41598-025-07034-1.
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.
围绕残疾的污名化现象在不同背景下持续影响着受影响个体及其家庭的生活。研究表明，残疾儿童的照料者因其与残疾儿童的密切关联以及这些观念的内化而面临污名化。在塞拉利昂，照料者的污名化经历可能因一些观念而加剧，这些观念将残疾与残疾儿童家庭的精神或道德缺陷联系起来，并将儿童状况的责任归咎于照料者。本研究探讨了照料者如何体验和应对这些相互交织的污名化形式以及他们所遇到或期望的社会支持。我们在塞拉利昂弗里敦与37名残疾儿童的照料者进行了六次焦点小组讨论，这些照料者是通过医院和一个提供治疗服务的非政府组织招募的。讨论由半结构化访谈协议指导，并采用定性内容分析法进行分析。照料者报告称，他们因被贴标签、被回避、受到社会指责以及被迫接受传统做法而经历污名化。污名深深植根于将残疾归因于超自然原因的文化叙事中，往往将责任归咎于照料者。参与者采用了三种总体策略来应对污名：退缩、应对（如从精神层面重新审视、关注积极互动）和抵抗（如挑战迷信观念、倡导包容）。尽管有一些共情和社会包容的积极经历，但照料者表示强烈需要更多实际支持、社区意识以及全面干预措施，以减少污名并促进理解。本研究揭示了相互交织的污名化形式——因关联而产生的污名、指责归因以及内化污名——如何塑造了塞拉利昂照料者的经历。虽然参与者展现出了复原力和适应策略，但关联污名和社会指责的双重污名凸显了制定包容性政策和开展基于社区的干预措施的迫切需求。放大照料者的声音并全面满足他们的需求是减少污名和创造支持性环境的关键步骤。本研究为关于照料与污名的更广泛讨论做出了贡献，为类似文化背景下的研究和干预提供了见解。
