Tozer Rosemary, Atkin Karl
Department of Health Sciences, University of York, York, UK.
J Appl Res Intellect Disabil. 2015 Jul;28(4):341-51. doi: 10.1111/jar.12145. Epub 2015 Mar 5.
The potential of adult siblings to offer long-term support to a brother or sister with autism is rarely realized. To understand this, our study explores the expectations of social care among adult siblings.
Using qualitative interviews, we spoke to 21 adult siblings about their family relationships and engagement with service delivery, met with 12 of their siblings with autism and talked to 12 social care staff.
Siblings, although reflecting on the difficulties of growing up with someone who had autism, expressed a commitment towards their brother or sister. Most wanted involvement in their care. While some siblings described positive relationships with services, many felt marginalized. Practitioners largely confirmed their perceptions, while offering a justification for why they struggled to engage with adult siblings.
By understanding the way relationships between siblings change over time, adult siblings' contribution to the lives of their disabled brother or sister can be better supported.
成年兄弟姐妹为患有自闭症的兄弟或姐妹提供长期支持的潜力很少得到发挥。为了解其中原因,我们的研究探讨了成年兄弟姐妹对社会照料的期望。
通过定性访谈,我们与21名成年兄弟姐妹谈论了他们的家庭关系以及与服务提供方的接触情况,与其中12名患有自闭症的兄弟姐妹进行了会面,并与12名社会照料工作人员进行了交谈。
兄弟姐妹尽管反思了与患有自闭症的人一起成长的困难,但仍表达了对其兄弟或姐妹的承诺。大多数人希望参与到对他们的照料中。虽然一些兄弟姐妹描述了与服务方的积极关系,但许多人感到被边缘化。从业者在很大程度上证实了他们的看法,同时为他们难以与成年兄弟姐妹接触提供了理由。
通过了解兄弟姐妹之间的关系随时间如何变化,可以更好地支持成年兄弟姐妹对其残疾兄弟或姐妹生活的贡献。