Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs
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| Title: | Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs |
|---|---|
| Language: | English |
| Authors: | Amy E. Bodde (ORCID |
| Source: | Journal of Applied Research in Intellectual Disabilities. 2025 38(5). |
| Availability: | 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/en-us |
| Peer Reviewed: | Y |
| Page Count: | 11 |
| Publication Date: | 2025 |
| Sponsoring Agency: | National Institute on Aging (NIA) (DHHS/NIH) National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH) |
| Contract Number: | AG063909 KL2TR002367 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Adults, Down Syndrome, Caregivers, Experience, Needs, Long Range Planning, Social Support Groups, Psychological Patterns |
| DOI: | 10.1111/jar.70118 |
| ISSN: | 1360-2322 1468-3148 |
| 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[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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1487683 |
| Database: | ERIC |
| 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[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. |
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| ISSN: | 1360-2322 1468-3148 |
| DOI: | 10.1111/jar.70118 |
