Hartley S, Ojwang P, Baguwemu A, Ddamulira M, Chavuta A
The Centre of International Child Health, Institute of Child Health, London University, London, UK.
Child Care Health Dev. 2005 Mar;31(2):167-80. doi: 10.1111/j.1365-2214.2004.00464.x.
Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development.
A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural.
There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources.
CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.
1989年，世界卫生组织推荐以社区为基础的康复（CBR）作为提高残疾人及其家庭生活质量的策略，该策略应建立在当地知识和实践的基础上。在乌干达，没有关于服务与当地知识如何关联的文献记录。有必要增进对家庭成员如何照顾残疾子女的了解，为未来的服务发展提供依据。
采用定性现象学设计，深入了解乌干达家庭在其社区中如何照顾残疾子女。通过对乌干达三个地区（一个城市地区、两个农村地区）52个有残疾儿童的家庭进行访谈和观察，这些残疾儿童分属五个残疾类别。
许多残疾儿童被他们的家庭接纳、关爱和照顾。为寻求治愈花费了大量时间和金钱。大家庭系统正在瓦解，照顾残疾家庭成员的主要负担通常落在一名，有时是两名女性照顾者身上。男性成员充当把关人，控制有关孩子及相关资源的关键决策。
社区为基础的康复应将服务重点从残疾个体转向整个家庭。提供关于残疾原因和预防、治愈的实际情况、对女性照顾者的支持和喘息机会以及父亲参与机会的准确信息非常重要。这种方法是收集数据的实用机制，有可能对当地社区为基础的康复实践发展产生积极影响并提供指导。在概念层面，这些数据支持包容、社会融合的理念，信任和尊重的重要性以及采用整体方法。这些理念很容易应用到其他环境中。
