Orsmond G I, Seltzer M M
Sargent College of Health and Rehabilitation Sciences, Boston University, Boston, MA 01867, USA.
J Intellect Disabil Res. 2007 Sep;51(Pt 9):682-96. doi: 10.1111/j.1365-2788.2007.00954.x.
In this study, we examine instrumental and affective involvement in the sibling relationship for adults who have a brother or sister with an autism spectrum disorder (ASD) or Down syndrome (DS). We ask three research questions: (1) How do adult siblings of individuals with ASD differ from siblings of individuals with DS in their assessment of the quality of the sibling relationship and their experience of growing up with a brother or sister with a disability? (2) Are there gender effects on the sibling relationship and sibling experience in these two groups? (3) Which factors are predictive of variation in the sibling relationship for siblings of adults with ASD or DS?
Data from 154 siblings who participated in two linked longitudinal studies were used. Seventy-seven siblings with a brother or sister with ASD were matched by age and gender to 77 siblings with a brother or sister with DS. The siblings in each group were between 21 and 56 years of age and over half were sisters. Siblings completed questionnaires on instrumental and affective involvement with their brother or sister with ASD or DS, the impact of growing up with a brother or sister with a disability on their lives, and their coping skills and feelings of pessimism.
Compared with the siblings of adults with DS, siblings of adults with ASD had less contact with their brother or sister, reported lower levels of positive affect in the relationship, felt more pessimistic about their brother or sister's future, and were more likely to report that their relationships with their parents had been affected. For siblings of adults with ASD, a closer sibling relationship was observed when the sibling had lower educational levels, lived closer to the brother or sister with ASD, used more problem-focused coping strategies, and when his or her brother or sister with ASD had higher levels of functional independence. In contrast, for siblings of adults with DS, a closer sibling relationship was observed when the sibling did not have children, had lower levels of education, lived closer to the brother or sister with DS, when he or she used more problem-focused coping, was less pessimistic about the brother or sister's future, and when his or her life had been impacted to a greater extent by growing up with a brother or sister with DS.
We discuss the implications of these findings for future caregiving roles for siblings. Siblings of individuals with ASD may face difficulty when their parents are no longer able to be the primary caregivers for their brother or sister with ASD, as they tend to have less emotional closeness and are more pessimistic about their brother or sister's future than siblings of individuals with DS. Moreover, in both groups, a closer sibling relationship was observed when the sibling used more problem-focused coping strategies, which may have implications for intervention.
在本研究中，我们调查了患有自闭症谱系障碍（ASD）或唐氏综合征（DS）的兄弟姐妹的成年手足在工具性和情感性方面对手足关系的参与情况。我们提出了三个研究问题：（1）患有ASD的成年人的手足与患有DS的成年人的手足在评估手足关系质量以及与残疾兄弟姐妹一起成长的经历方面有何不同？（2）这两组中的手足关系和手足经历是否存在性别差异？（3）哪些因素可预测患有ASD或DS的成年人的手足的手足关系差异？
使用了来自参与两项相关纵向研究的154名手足的数据。77名患有ASD的兄弟姐妹的手足按年龄和性别与77名患有DS的兄弟姐妹的手足进行匹配。每组中的手足年龄在21至56岁之间，超过一半是姐妹。手足们完成了关于与患有ASD或DS的兄弟姐妹在工具性和情感性方面的参与情况、与残疾兄弟姐妹一起成长对其生活的影响以及他们的应对技巧和悲观情绪的问卷。
与患有DS的成年人的手足相比，患有ASD的成年人的手足与他们的兄弟姐妹的接触较少，报告的关系中的积极情感水平较低，对其兄弟姐妹的未来更悲观，并且更有可能报告他们与父母的关系受到了影响。对于患有ASD的成年人的手足，当手足教育水平较低、居住得离患有ASD的兄弟姐妹更近、使用更多以问题为中心的应对策略以及其患有ASD的兄弟姐妹具有更高水平的功能独立性时，观察到更亲密的手足关系。相比之下，对于患有DS的成年人的手足，当手足没有孩子、教育水平较低、居住得离患有DS的兄弟姐妹更近、使用更多以问题为中心的应对方式、对兄弟姐妹的未来不太悲观以及其生活因与患有DS的兄弟姐妹一起成长而受到更大程度的影响时，观察到更亲密的手足关系。
我们讨论了这些发现对未来手足照顾角色的影响。当父母不再能够成为患有ASD的兄弟姐妹的主要照顾者时，患有ASD的成年人的手足可能会面临困难，因为他们往往情感亲密程度较低，并且比患有DS的成年人的手足对其兄弟姐妹的未来更悲观。此外，在两组中，当手足使用更多以问题为中心的应对策略时，观察到更亲密的手足关系，这可能对干预有启示意义。
