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

caregiver burden long-term care planning social support

Journal

Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616

Informations de publication

Date de publication:
Nov 2023
Historique:
revised: 29 06 2023
received: 30 08 2022
accepted: 06 07 2023
pubmed: 2 8 2023
medline: 2 8 2023
entrez: 2 8 2023
Statut: ppublish

Résumé

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. 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. 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). 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.

Sections du résumé

BACKGROUND 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 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 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 CONCLUSIONS
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.

Identifiants

pubmed: 37530520
doi: 10.1111/jar.13141
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1229-1240

Subventions

Organisme : Patrick and Catherine Weldon Donaghue Medical Research Foundation
Organisme : Rx Foundation

Informations de copyright

© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

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Auteurs

Telmo Santos (T)

Division of General Pediatrics, Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.
Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA.

Caren Steinway (C)

Division of General Pediatrics, Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.
Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA.

Ariana Mastrogiannis (A)

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

Jack Chen (J)

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

Jason Woodward (J)

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

Ilka Riddle (I)

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

Brittany Spicer (B)

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

John Berens (J)

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

Thomas Davis (T)

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

Michelle Cornacchia (M)

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

Charmaine Wright (C)

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

Lee A Lindquist (LA)

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

Sophia Jan (S)

Division of General Pediatrics, Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.
Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA.

Classifications MeSH