Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.
Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.
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DOI：
10.1186/s12914-018-0158-2
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发表时间：
2018-05-08
影响因子：
3
通讯作者：
Bunning K
中科院分区：
文献类型：
--
作者：
Gona JK;Newton CR;Hartley S;Bunning K
过去十年，撒哈拉以南非洲公众对残疾问题的认识有所提高。然而，许多社区仍然存在对残疾的负面和陈规定型观念。我们进行了一项研究，以提高肯尼亚农村地区对残疾问题的认识，采用反思和教育的过程。本文件报告的是第二个方面-教育。研究的问题是：如何与残疾人生活的个人叙述影响社区的态度和残疾的反应？一个定性的现象学的方法被采用。有20个社区团体参加，249人参加。每个小组在基线时参加一次焦点小组讨论，以探讨成员的个人经历和对残疾的看法。干预涉及三名残疾成年人与每组分享他们的个人叙述。干预后，与每组进行重复焦点小组讨论。根据框架法进行了主题分析。新兴的框架包括四个主题，组织为对立的结构：“负担”和“代理”，“次人类”和“人类”。“负担”集中在感觉到的绝望的情况。干预后的结果显示，对残疾人“代理”的支持更大，这体现在残疾人能够做什么，而不是他们没有能力，以及支持的相关性。从“非人”到“人”的概念一方面反映了对残疾人的非人化和歧视做法，另一方面反映了对残疾人的承认和融入社区。虽然在干预前阶段，支持和同情是显而易见的，但干预后显示，残疾人作为人类同胞得到了更大的认可。这项研究证明了将残疾人作为变革推动者的概念。通过专家的经验，社区团体有机会反思、审查和调整他们对肯尼亚这一农村地区残疾问题的看法。个人叙述的分享似乎能引起小组成员的共鸣，鼓励对个人而不仅仅是残疾的认可，并促使他们下定决心采取集体行动。需要进一步研究以评估这些干预措施的效果。本文的在线版本（10.1186/s12914-018-0158-2）包含补充材料，可供授权用户使用。
The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect – education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability? A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members’ personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method. The emergent framework consisted of four main themes, organised as opposing constructs: ‘burden’ and ‘agency’, ‘sub-human’ and ‘human’. ‘Burden’ focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the ‘agency’ of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The ‘sub-human’ to ‘human’ construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings. This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions. The online version of this article (10.1186/s12914-018-0158-2) contains supplementary material, which is available to authorized users.
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影响因子：
5.4
作者：
Bickenbach, JE;Chatterji, S;Üstün, TB
通讯作者：
Üstün, TB
影响因子：
3.7
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