Burke Meghan M, Lee Chung Eun, Hall Sarah A, Rossetti Zach
Meghan M. Burke and Chung eun Lee, University of Illinois at Urbana-Champaign; Sarah A. Hall, Ashland University; and Zach Rossetti, Boston University.
Intellect Dev Disabil. 2019 Feb;57(1):26-41. doi: 10.1352/1934-9556-57.1.26.
Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads ( N = 18) about decision making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision making. Individuals with IDD were more likely to make their own decisions about leisure activities; however, siblings were more likely to make formal decisions for their brothers and sisters.
许多兄弟姐妹期望承担起照顾患有智力和发育障碍（IDD）的兄弟姐妹的责任。考虑到这些角色以及支持性决策的重要性，了解患有IDD的个体及其兄弟姐妹如何做出决策至关重要。通过二元访谈，我们研究了九个兄弟姐妹二元组（N = 18）在自我决定、独立生活和就业方面的决策观点。参与者的年龄在19岁至57岁之间。使用持续比较分析对数据进行分析以确定主题。决策的特点是：父母和兄弟姐妹主要确定行动方案；基于人与环境的匹配度确定各自后果的可能性；以及兄弟姐妹在做出最终决策中的作用。与患有IDD的个体、家庭、兄弟姐妹和环境相关的特征影响了决策。患有IDD的个体更有可能自行决定休闲活动；然而，兄弟姐妹更有可能为他们的兄弟姐妹做出正式决策。
