Meghan M. Burke and Chung eun Lee, University of Illinois at Urbana-Champaign; and.
Catherine K. Arnold and Aleksa Owen, University of Illinois at Chicago.
Intellect Dev Disabil. 2017 Apr;55(2):72-83. doi: 10.1352/1934-9556-55.2.72.
Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.
成年智障人士（IDD）的兄弟姐妹报告说，他们在努力驾驭成人残疾服务提供系统并与专业人员合作方面遇到困难。然而，到目前为止，还不清楚专业人员如何鼓励兄弟姐妹的参与，以及与兄弟姐妹合作的促进因素和挑战。在这项研究中，290 名专业人员参与了一项全国性的网络调查；参与者回答了三个关于如何让兄弟姐妹参与、与兄弟姐妹的积极经历以及与兄弟姐妹合作的挑战的开放性问题。专业人员报告了鼓励兄弟姐妹参与的个人层面和系统层面的支持。此外，专业人员还报告说，他们喜欢与智障人士的凝聚力家庭合作，并见证了兄弟姐妹给智障兄弟姐妹带来的好处。与兄弟姐妹合作的挑战包括：缺乏兄弟姐妹的参与、制度障碍和照顾负担。讨论了对未来研究和实践的影响。
