Caregiving for Adults With Down Syndrome: Caregiver Experiences and Support Needs

IF 1.9 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-08 DOI:10.1111/jar.70118

Amy E. Bodde, Joanna Veazey Brooks, Bethany Forseth, Tara Wolfe, Kristine Williams, Lauren T. Ptomey

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Abstract

Background

Family caregivers of adults with Down syndrome often provide life-long caregiving support for their loved one. Long-term caregiving can impact caregivers' health and well-being, yet their experiences and support needs are underexplored.

Method

Semi-structured interviews were conducted with caregivers of adults with Down syndrome to understand their caregiving experiences and perceived caregiver support needs. Transcripts of the recorded interviews were coded and analysed thematically.

Results

Seventeen family caregivers (94.1% female, M_age = 58.8 years) of adults with Down syndrome completed the interviews. We identified four major themes: constancy of caregiving, future planning, significance of social supports and positive joys and rhythms.

Conclusion

Our findings demonstrate that caregiving responsibilities can feel constant and unceasing, yet consistent routines and positive appraisal help ease the burden. Family and friends support thriving, but trusted options for transportation services, life transition planning and respite care are needed. Targeting these support needs may improve caregiver well-being.

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照顾成人唐氏综合症：照顾者经验和支持需求

唐氏综合症成人的家庭照顾者通常为他们所爱的人提供终身护理支持。长期照护会影响照护者的健康和福祉，但他们的经历和支持需求尚未得到充分探讨。方法采用半结构化访谈法对成年唐氏综合征患者的照顾者进行访谈，了解其照顾经历和感知到的照顾者支持需求。对记录的采访笔录进行了编码和专题分析。结果17名成人唐氏综合征家庭照顾者（女性94.1%，年龄58.8岁）完成访谈。我们确定了四个主要主题：持续的照顾、未来规划、社会支持的重要性以及积极的快乐和节奏。结论照护责任是一种持续的、不间断的感觉，而一致的日常安排和积极的评价有助于减轻负担。家人和朋友支持蓬勃发展，但需要可靠的交通服务选择，生活过渡规划和临时护理。针对这些支持需求可以改善照顾者的幸福感。

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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.