Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme, Social and Behavioural Group, PO Box 230, Kilifi, 80108, Kenya.
Ethn Health. 2011 Aug-Oct;16(4-5):343-59. doi: 10.1080/13557858.2010.541903.
To explore early experiences of sickle cell disorder (SCD) in families with a young affected child, and the way these experiences influence relations within families. To consider ways in which stigma could be counteracted in health and research programmes in sub Saharan Africa.
A qualitative study was conducted in a rural area of coastal Kenya including in-depth interviews with 13 families affected by SCD and 12 staff of a local biomedical research progamme. Purposive selection aimed to maximize diversity in socioeconomic and educational status, religion, severity of illness burden and religion amongst families and draw on relevant experience for staffs. Interviews were recorded, transcribed and analysed using the constant comparative method for family interviews and a thematic framework approach for staff data.
Low initial recognition of SCD and its cause were associated with lay practices of surveillance within affected families, contributing to stigmatisation that occurred independently of genetic knowledge. Blame was often placed on mothers, including a risk of blame for misaligned paternity. Mothers are often particularly affected by SCD through the loss of independent livelihoods and their limited options in coping with this chronic condition.
Mothers of children with SCD were particularly vulnerable to stigmatisation within families, with underlying structural influences that suggest these findings may apply to other similar settings in Africa, and have relevance for other genetic conditions. The potential, nature and form of stigmatisation point to the role of effective communication and SCD management in addressing for blame and discriminative effects of having a child with SCD. The findings highlight the importance of broader social programmes targeting underlying gender and economic inequalities.
探讨镰状细胞病（SCD）患儿家庭的早期经历，以及这些经历如何影响家庭内部关系。考虑如何在撒哈拉以南非洲的卫生和研究计划中消除耻辱感。
在肯尼亚沿海的一个农村地区进行了一项定性研究，包括对 13 个受 SCD 影响的家庭和 12 名当地生物医学研究计划工作人员进行深入访谈。有目的的选择旨在最大限度地提高家庭在社会经济和教育地位、疾病负担严重程度和宗教方面的多样性，并为工作人员吸取相关经验。使用家庭访谈的恒定性比较方法和工作人员数据的主题框架方法对访谈进行记录、转录和分析。
最初对 SCD 及其病因的认识不足，加上受影响家庭内部的常规监测做法，导致了独立于遗传知识发生的污名化。责任往往归咎于母亲，包括对父亲身份错位的指责风险。母亲经常因 SCD 而特别受到影响，因为她们失去了独立的生计，而且在应对这种慢性疾病方面选择有限。
SCD 患儿的母亲在家庭中特别容易受到污名化，其潜在的结构性影响表明这些发现可能适用于非洲其他类似环境，并与其他遗传疾病有关。污名化的潜在性、性质和形式表明有效的沟通和 SCD 管理在解决责任和歧视问题方面的作用。这些发现强调了针对潜在性别和经济不平等的更广泛社会计划的重要性。
