ERIC Number: EJ1487683
Record Type: Journal
Publication Date: 2025-Sep
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
Available Date: 2025-09-08
Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs
Amy E. Bodde1; Joanna Veazey Brooks2; Bethany Forseth3; Tara Wolfe1; Kristine Williams4; Lauren T. Ptomey1
Journal of Applied Research in Intellectual Disabilities, v38 n5 e70118 2025
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[subscript 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.
Descriptors: Adults, Down Syndrome, Caregivers, Experience, Needs, Long Range Planning, Social Support Groups, Psychological Patterns
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www-wiley-com.bibliotheek.ehb.be/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: National Institute on Aging (NIA) (DHHS/NIH); National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
Authoring Institution: N/A
Grant or Contract Numbers: AG063909; KL2TR002367
Author Affiliations: 1Department of Internal Medicine, The University of Kansas Medical Center, Kansas City, Kansas, USA; 2Department of Population Health, The University of Kansas Medical Center, Kansas City, Kansas, USA; 3Department of Physical Therapy, Rehabilitation Science, and Athletic Training, The University of Kansas Medical Center, Kansas City, Kansas, USA; 4School of Nursing, The University of Kansas Medical Center, Kanas City, Kansas, USA

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