'All her children are born that way': gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya.
'All her children are born that way': gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya.
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DOI：
10.1080/13557858.2010.541903
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发表时间：
2011-08
影响因子：
3.1
通讯作者：
Molyneux SS
中科院分区：
文献类型：
--
作者：
Marsh VM;Kamuya DM;Molyneux SS
目标。探讨镰状细胞病（SCD）的早期经历的家庭有年幼的患病儿童，以及这些经历如何影响家庭内部的关系。考虑如何在撒哈拉以南非洲的卫生和研究规划中消除耻辱感。设计。在肯尼亚沿海的一个农村地区进行了一项定性研究，包括与13个受SCD影响的家庭和当地生物医学研究方案的12名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、宗教信仰、疾病负担严重程度和宗教信仰方面的多样性，并为员工借鉴相关经验。访谈记录、笔录和分析采用家庭访谈的持续比较方法和工作人员数据的专题框架方法。结果。最初对SCD及其病因的认知度较低与受影响家庭内的非专业监测做法有关，这导致了与遗传知识无关的污名化。人们常常把责任推给母亲，包括有可能因亲子关系不协调而受到指责。由于失去独立生计和应对这种慢性疾病的选择有限，母亲往往受到SCD的特别影响。结论。患有SCD儿童的母亲在家庭中特别容易受到歧视，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的环境，并且与其他遗传条件相关。歧视的可能性、性质和形式表明，有效的沟通和残疾管理在解决孩子患有残疾的指责和歧视方面的作用。调查结果强调了针对潜在的性别和经济不平等的更广泛的社会方案的重要性。
Objectives. 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. Design. 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. Results. 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. Conclusions. 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.
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影响因子：
1.8
作者：
Assimadi, JK;Gbadoé, AD;Nyadanu, M
通讯作者：
Nyadanu, M
影响因子：
5.4
作者：
Allotey, P;Reidpath, D
通讯作者：
Reidpath, D
影响因子：
1.5
作者：
Molyneux, CS;Murira, G;Snow, RW
通讯作者：
Snow, RW
影响因子：
5.9
作者：
MARKEL, H
通讯作者：
MARKEL, H
影响因子：
12.7
作者：
Castro, A;Farmer, P
通讯作者：
Farmer, P