Department of Special Education, Peabody College, Vanderbilt University, Vanderbilt Kennedy Center, Nashville, TN, USA.
Department of Special Education, University of Illinois at Urbana-Champaign, Urbana, IL, USA.
J Intellect Disabil Res. 2021 Mar;65(3):246-261. doi: 10.1111/jir.12806. Epub 2021 Jan 6.
Although they will often serve as caregivers for their brothers-sisters with intellectual and developmental disabilities (IDD), adult siblings are rarely included in future planning.
This study examined 495 American siblings who completed a web-based questionnaire about themselves, their brother-sister with IDD, parents and whether their families completed 11 future planning activities.
Although virtually all families completed some future planning, on average, families completed slightly over half of the 11 activities (75% completed eight or fewer). Families more frequently identified a successor to current caregivers and engaged in planning discussions with one another and with the brother-sister; least often, families completed a letter of intent or began securing residential placements. Future planning activities comprised three domains: (1) legal activities, (2) residential activities and (3) family discussions about the future. Variables relating to one or more domains included whether the brother-sister lived in or outside of family home; brother-sister independent living abilities; presence of an intellectual disability; parent caregiving ability; and current sibling caregiving and involvement with the brother-sister with IDD.
Although most families engage in some future planning, performance varies widely within and across future planning domains. Future planning involves different considerations and interventions depending on whether one is considering legal, residential or family discussions.
尽管成年兄弟姐妹通常会照顾他们有智力和发育障碍（IDD）的兄弟姐妹，但他们很少被纳入未来规划中。
本研究调查了 495 名美国成年兄弟姐妹，他们完成了一份关于自己、他们有 IDD 的兄弟姐妹、父母以及家庭是否完成了 11 项未来规划活动的在线问卷。
尽管几乎所有家庭都完成了一些未来规划，但平均而言，家庭只完成了 11 项活动中的略超过一半（75%的家庭完成了八项或更少的活动）。家庭更频繁地确定了当前照顾者的继任者，并彼此以及与兄弟姐妹进行规划讨论；最不常见的是，家庭完成了意向书或开始为居住安置做准备。未来规划活动包括三个领域：（1）法律活动，（2）居住活动，（3）家庭对未来的讨论。与一个或多个领域相关的变量包括兄弟姐妹是否居住在家庭住宅内或外；兄弟姐妹独立生活能力；是否存在智力障碍；父母照顾能力；以及当前兄弟姐妹对 IDD 兄弟姐妹的照顾和参与情况。
尽管大多数家庭都进行了一些未来规划，但在不同领域的表现差异很大。未来规划涉及不同的考虑因素和干预措施，具体取决于考虑的是法律、居住还是家庭讨论。
