Amy E. Bodde, Joanna Veazey Brooks, Bethany Forseth, Tara Wolfe, Kristine Williams, Lauren T. Ptomey
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Caregiving for Adults With Down Syndrome: Caregiver Experiences and Support Needs
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, Mage = 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.
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.
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