Caregiver support, burden, and long‐term planning among caregivers of individuals with intellectual and developmental disabilities: A cross‐sectional study
Telmo Santos, Caren Steinway, Ariana Mastrogiannis, Jack Chen, Jason Woodward, Ilka Riddle, Brittany Spicer, John Berens, Thomas Davis, Michelle Cornacchia, Charmaine Wright, Lee A. Lindquist, Sophia Jan - Developmental and Educational Psychology
- Education
Abstract
Background
Long‐term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers.
Methods
A cross‐sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives.
Results
Caregivers (n = 405) were predominantly parents, female, non‐Hispanic, and in the ‘learning to plan’ stage of LTCP. Caregiver‐identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001).
Conclusion
Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.