Zuurmond Maria, Seeley Janet, Shakespeare Tom, Nyante Gifty G, Bernays Sarah
International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom.
Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, United Kingdom.
Afr J Disabil. 2020 Nov 27;9:705. doi: 10.4102/ajod.v9i0.705. eCollection 2020.
Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice.
This article is an empirical analysis of the 'empowerment journeys' of caregivers participating in a community-based training programme in Ghana.
In-depth interviews were conducted with 18 caregivers at three time points over 14 months. Thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey.
Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues.
A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities.
赋权是一个日益流行的目标，被视为残疾儿童及其家庭变革议程的核心。然而，在实践中它仍然可能是一个理解不深的概念。
本文是对参与加纳一个社区培训项目的照料者“赋权历程”的实证分析。
在14个月内的三个时间点对18名照料者进行了深入访谈。对全部数据集进行了主题分析，并挑选了三个具有代表性的案例研究进行更详细的分析，以说明时间和背景在塑造赋权历程中的动态作用。
我们的研究结果揭示了照料者赋权历程的复杂性和非线性。通过知识的提高和来自团体成员的宝贵同伴支持，在个人权力维度上取得了重要进展，集体权力也初现端倪。然而，他们对更广泛的经济和社会政治结构问题的有限影响力阻碍了进一步的进展，这些问题使他们的贫困、耻辱和照料的性别化经历持续存在。支持小组的协调员经常发挥宝贵的促成作用，以帮助跨越个人能动性和结构性问题。
对社区和家庭背景下照料者赋权有更丰富、更细致入微的理解，可以为关于残疾问题的更广泛讨论提供信息。与残疾人合作的指导方针以及赋权的作用不应忽视照料者的关键作用。如果我们想改进以家庭为中心的干预措施并改变残疾儿童的生活，就有重要的经验教训可供借鉴。
