Zuurmond Maria, Nyante Gifty, Baltussen Marjolein, Seeley Janet, Abanga Jedidia, Shakespeare Tom, Collumbien Martine, Bernays Sarah
International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, UK.
University of Ghana, Accra, Ghana.
Child Care Health Dev. 2019 Jan;45(1):45-53. doi: 10.1111/cch.12618. Epub 2018 Sep 27.
Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.
A qualitative longitudinal study was conducted to investigate the impact of a training programme, "getting to know cerebral palsy," with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes.
Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are "not on their own." While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network.
This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.
据估计，全球1.5亿残疾儿童中有五分之四生活在资源匮乏的环境中，在这些环境中，家庭对于确保这些儿童生存和茁壮成长起着至关重要的作用。尽管家庭发挥着关键作用，但目前仍缺乏关于如何为这些家庭提供最佳支持的证据。本研究探讨了通过当地支持小组为照料者开展的参与式培训计划的影响，重点是了解照料者的幸福感。
开展了一项定性纵向研究，以调查“认识脑瘫”培训计划对照料者幸福感的影响。来自四个地区的18名照料者在14个月内接受了多达三次访谈，以评估影响及任何变化的原因。
一开始，常见的主题包括知识水平低、耻辱感高、身心疲惫，以及家庭关系往往困难，孩子和照料者受到社会排斥。照料者难以兼顾照料孩子和经济活动。父亲普遍缺席使情况更加恶化。培训结束两个月后，他们报告的幸福感有所改善。原因包括对孩子病情的了解有所提高、对孩子的态度发生积极转变、产生希望感，以及通过小组支持，深刻认识到“自己并不孤单”。虽然在许多情况下家庭内部关系仍然复杂，但支持小组提供了一个重要的替代性社会支持网络。
本研究说明了一种相对简单的照料者干预措施的诸多益处，该措施有可能提供一种机制，为脑瘫患儿的照料者和孩子提供可持续的社会支持。未来的任何计划还需要解决更多结构性问题，包括耻辱感和歧视，并加强家庭参与的方法。
