Caregiver support, burden, and long‐term planning among caregivers of individuals with intellectual and developmental disabilities: A cross‐sectional study

Author:

Santos Telmo12,Steinway Caren12,Mastrogiannis Ariana2,Chen Jack1,Woodward Jason3,Riddle Ilka3,Spicer Brittany3,Berens John4,Davis Thomas5,Cornacchia Michelle5,Wright Charmaine6,Lindquist Lee A.7,Jan Sophia12ORCID

Affiliation:

1. Division of General Pediatrics Cohen Children's Medical Center of Northwell Health New Hyde Park New York USA

2. Department of Pediatrics Zucker School of Medicine at Hofstra/Northwell Hempstead New York USA

3. Division of Developmental and Behavioral Pediatrics Cinncinati Children's Hospital and Medical Center Cincinnati Ohio USA

4. Department of Medicine Baylor College of Medicine Houston Texas USA

5. Division of General Internal Medicine Geisinger Medical Center Danville Pennsylvania USA

6. Division of Internal Medicine Division of Pediatrics Christiana Care Wilmington Delaware USA

7. Division of Geriatrics Northwestern University Feinberg School of Medicine Chicago Illinois USA

Abstract

AbstractBackgroundLong‐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.MethodsA 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.ResultsCaregivers (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).ConclusionSocial 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.

Funder

Patrick and Catherine Weldon Donaghue Medical Research Foundation

Publisher

Wiley

Subject

Developmental and Educational Psychology,Education

Reference57 articles.

1. Caregiver Burden

2. Defining criteria for intellectual disability;American Association on Intellectual and Developmental Disabilities;American Association on Intellectual and Developmental Disabilities

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