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发育障碍患者的成年兄弟姐妹参与未来规划。

Involvement of adult siblings of persons with developmental disabilities in future planning.

作者信息

Heller Tamar, Kramer John

机构信息

Department of Disability and Human Development, University of Illinois, Chicago, IL, USA.

出版信息

Intellect Dev Disabil. 2009 Jun;47(3):208-19. doi: 10.1352/1934-9556-47.3.208.

Abstract

This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.

摘要

本研究探讨了影响发育障碍患者的兄弟姐妹参与未来规划的因素及其对未来照料的期望。样本包括从在线兄弟姐妹列表和一次兄弟姐妹会议中招募的139名成年兄弟姐妹。结果表明,很少有家庭制定计划或让兄弟姐妹参与规划。参与未来规划最多的兄弟姐妹年龄较大,更多地参与残疾活动,并为其残疾兄弟姐妹提供更多支持。约38%的兄弟姐妹期望成为主要照料者,如果残疾兄弟姐妹住得更近、是女性、有更多的兄弟姐妹联系、为他们提供更多支持且照料满意度更高,那么他们更有可能期望担任这一角色。兄弟姐妹的主要支持需求包括支持小组、关于如何承担照料责任的工作坊培训、经济支持以及关于制定未来计划的印刷材料。

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