School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia.
J Intellect Disabil Res. 2012 Oct;56(10):961-73. doi: 10.1111/j.1365-2788.2012.01561.x. Epub 2012 Apr 25.
This study aimed to explore the factors that predict functioning in families with a child with Down syndrome using a mixed methods design. The quantitative component examined the effect of maladaptive and autism-spectrum behaviours on the functioning of the family while the qualitative component explored the impact of having a child with Down syndrome on family holidays, family activities and general family functioning.
Participants in this study were 224 primary caregivers of children with Down syndrome aged 4-25 years (57.1% male; 42.9% female) currently residing in Western Australia (74.0% in metropolitan Perth and 26.0% in rural Western Australia).
Maladaptive and autism-spectrum behaviour were associated with poorer family functioning. Mean total scores on the measures of family functioning and marital adjustment were comparable to that of families of typically developing children. Consistent with the quantitative findings, normality was the most common theme to emerge in the qualitative data. Child problem behaviours were also identified by parents/carers as having a negative impact on the family.
This study has implications for the development of programs to support families with a child with Down syndrome and may dispel some of the myths surrounding the impact of intellectual disability on the family.
本研究旨在采用混合方法设计探索影响唐氏综合征患儿家庭功能的因素。定量部分研究了适应不良和自闭症谱系行为对家庭功能的影响，定性部分则探讨了唐氏综合征患儿对家庭度假、家庭活动和一般家庭功能的影响。
本研究的参与者为 224 名年龄在 4-25 岁的唐氏综合征患儿的主要照顾者（57.1%为男性，42.9%为女性），他们目前居住在澳大利亚西部（74.0%居住在珀斯大都市区，26.0%居住在西澳农村地区）。
适应不良和自闭症谱系行为与较差的家庭功能相关。家庭功能和婚姻调整测量的平均总分与发育正常儿童的家庭相当。与定量结果一致，正常是定性数据中最常见的主题。父母/照顾者还认为儿童的问题行为对家庭有负面影响。
本研究对制定支持唐氏综合征患儿家庭的计划具有意义，并可能消除一些关于智力障碍对家庭影响的误解。
