King G A, Zwaigenbaum L, King S, Baxter D, Rosenbaum P, Bates A
Thames Valley Children's Centre, London, ON, Canada.
Child Care Health Dev. 2006 May;32(3):353-69. doi: 10.1111/j.1365-2214.2006.00571.x.
There have been few reports of the world views, values and priorities of families of children with autism or Down syndrome, despite the fact that family belief systems are considered to be among the most important factors affecting the adaptation and resilience of families.
Transcripts from three focus groups involving 19 key informants (15 parents of children with autism or Down syndrome, and 4 service providers) were analysed using qualitative methods.
The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents' experiences indicate the importance of hope and of seeing possibilities that lie ahead.
The information from this study may be used to provide families with an advance understanding of the changes in beliefs that they might undergo, and assists service providers in providing individualized and family-centred services and supports to families.
尽管家庭信仰体系被认为是影响家庭适应能力和恢复力的最重要因素之一，但关于自闭症或唐氏综合征患儿家庭的世界观、价值观和优先事项的报道却很少。
采用定性方法分析了来自三个焦点小组的记录，这些小组有19名关键信息提供者（15名自闭症或唐氏综合征患儿的家长和4名服务提供者）。
这些主题表明，抚养残疾儿童可能是一次改变人生的经历，促使家庭审视他们的信仰体系。通过世界观、价值观和优先事项的改变，包括以不同方式思考孩子、养育角色和家庭角色，父母能够获得一种连贯感和掌控感。尽管父母可能会纠结于失去的梦想，但随着时间的推移，积极的适应可能会以改变对生活和残疾的世界观以及认识到孩子对家庭成员和整个社会的积极贡献的形式出现。父母的经历表明了希望以及看到未来可能性的重要性。
本研究所得信息可用于让家庭提前了解他们可能经历的信仰变化，并帮助服务提供者为家庭提供个性化的、以家庭为中心的服务和支持。
