Date Presented 04/05/2025
This session explores self-determination in health management from the perspective of adults with Down syndrome (DS) and their caregivers, including consideration of health management as a co-occupation between the adults with DS and their parents.
Primary Author and Speaker: Kayla Millan
Additional Authors and Speakers: Evguenia S. Popova
IMPORTANCE: Participation in the occupation of health management plays a vital role in one’s self-determination over their healthcare; however, individuals with intellectual and developmental disabilities (IDD) are less likely to participate in health management despite frequent utilization of healthcare services.
OBJECTIVE: Explore self-determination within health management from the perspective of adults with Down syndrome (DS) and their caregivers.
DESIGN: Descriptive, mixed methods study. Setting: Community Participants: Adults with DS and their caregivers (i.e., parents). Measures: Background, Health Inventory, and Transition-Q surveys. A semi-structured interview discussing participants’ experiences and knowledge of physical, social-emotional, and sexual health domains.
RESULTS: Four parent-child dyads participated in the study (n=8). Adults with DS and their caregivers had similar ratings on the Transition-Q and the Health Inventory, reporting limited health-related knowledge/skills for adults with DS. Three themes emerged as participants described health management as a co-occupation for adults with DS and their caregivers: (1) caregivers as guardians of health knowledge, (2) caregivers as executive assistants, and (3) caregivers as health coaches.
CONCLUSION AND RELEVANCE: Adults with DS reported having limited health-related knowledge/skills and decreased independent participation in health management. Consistently, both adults with DS and their caregivers viewed health management as a co-occupation, with caregivers playing a vital role in the process across physical, social-emotional, and sexual health domains.
References
Borthwick, C., Inchley, J., & Jones, J. (2021). Health promotion in adults with Down’s syndrome: Experiences of caregivers. Journal of Intellectual Disabilities, 25(3), 312–330. https://doi.org/10.1177/1744629519890956
Friedman, C., Rizzolo, M. C., & Spassiani, N. A. (2019). Self-management of health by people with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 32(3), 600–609. https://doi.org/10.1111/jar.12554
De La Garza, E., Scott, A., Hillerstrom, H., Hendrix, J., & Rubenstein, E. (2024). Caregivers’ concerns and supports needed to care for adults with Down syndrome. American journal of medical genetics.
Part C, Seminars in medical genetics, 196(1), e32041. https://doi.org/10.1002/ajmg.c.32041
van den Driessen Mareeuw, F. A., Coppus, A. M. W., Delnoij, D. M. J., & de Vries, E. (2020). Quality of health care according to people with Down syndrome, their parents, and support staff-A qualitative exploration. Journal of Applied Research in Intellectual Disabilities, 33(3), 496–514. https://doi.org/10.1111/jar.12692
