唐氏综合症患儿家长附属污名、压力与感知生活质量的关系

IF 1.9 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-07-25 DOI:10.1111/jar.70099

Shin Ying Chu, Jaehoon Lee, Dini Sofea Binti Zamsyari, Chun Hong Gan, Pui Juan Woi, Agnes Shu Sze Chong, Maria Garraffa, Ling-Yi Lin

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引用次数: 0

摘要

背景：研究唐氏综合症（DS）患儿父母的附属污名、压力和感知生活质量之间的关系。方法78例退行性痴呆患儿家长分别完成附属病耻感量表（ASS）、照顾者负担量表（CBI）和护理相关生活质量量表（CarerQol）。结果Pearson相关性显示，父母没有因为孩子患有退行性痴呆而感到耻辱（M = 30.51, SD = 10.47），并且报告了较低的照顾负担（CBI Total M = 19.73, SD = 12.72）。与ASD和CP组相比，DS组相对较低的照顾负担、挑战和未来障碍解释了其较少的耻辱、更高的生活质量和更大的幸福感。结论为退行性残疾儿童提供康复服务的医护人员需要更多地了解家庭和照顾者的需求，并了解如何最好地支持他们。

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Relationship Between Affiliate Stigma, Stress and Perceived Quality of Life Among Parents of Children With Down Syndrome

Background

To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS).

Method

Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales.

Results

Pearson correlations revealed that parents did not feel stigmatised for having a child with DS (M = 30.51, SD = 10.47) and reported a low caregiver burden (CBI Total M = 19.73, SD = 12.72). The relatively lower caregiving burden, challenges and future barriers in the DS group explained its lesser stigma, higher quality of life and greater happiness compared to the ASD and CP groups.

Conclusion

Healthcare professionals who provide rehabilitation services to children with DS need to be more aware of the needs of families and caregivers and educated about how to best support them.

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.