Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK; Centre for Global Mental Health/King's Global Health Institute, Department of Health Services and Population Research, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK.
Department of Psychiatry, WHO Collaborating Centre for Mental Health Research and Capacity-Building, School of Medicine, College of Health Sciences, Addis Ababa University, Ethiopia.
Soc Sci Med. 2020 Jul;256:113034. doi: 10.1016/j.socscimed.2020.113034. Epub 2020 May 15.
Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.
尽管与发育障碍（DD）相关的污名与照顾者的心理健康不良有关，但对于影响照顾者内化污名的因素，我们还缺乏深入的了解。我们的研究目的是探索埃塞俄比亚 DD 儿童父母的污名感知和经历，并根据父母自身的观点，研究导致污名内化的促成因素和保护因素。我们在亚的斯亚贝巴（2017 年 12 月 25 日至 2018 年 1 月 8 日）和布塔吉拉农村镇（2018 年 8 月 8 日至 2018 年 8 月 16 日）进行了 18 位父母（14 位母亲，4 位父亲）的深入访谈。我们使用主题分析对数据进行分析。父母对他们的孩子（公众污名）和自己（礼貌污名）有不同形式的污名感知和经历。一些父母还描述了他们如何将自己和孩子与社会生活隔离（附属污名）。父母认为污名对他们的 DD 孩子、兄弟姐妹和自己的生活有负面影响。大多数父母还描述了他们自己的家庭和社区的积极反应和支持的例子。参与者的描述表明，来自公众的支持性贡献和积极反应主要来自那些对 DD 有更好认识的人。并非我们研究中的所有父母都内化了针对他们的污名。虽然父母认为家庭支持和接受，以及对 DD 的认识增加，这有助于一些父母不内化污名，但缺乏社会支持和接受使一些父母容易受到污名内化的影响。这些发现可以为反污名干预提供重点。针对整个社区的提高认识活动以及针对父母本身的干预措施可能是有益的。干预措施应考虑整个家庭的福祉，而不仅仅是关注个人。
