Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

Autor: Chicas VE; Alan and Marlene Norton College of Medicine at Upstate Medical University, Syracuse, New York, USA., Steinway C; Division of General Pediatrics, Steven & Alexandra Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.; Department of Pediatrics, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA., Chen J; Division of General Pediatrics, Steven & Alexandra Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA., Schwartz MC; Lewis Katz School of Medicine of Temple University, Philadelphia, Pennsylvania, USA., Wright C; Departments of Pediatrics and Medicine, ChristianaCare Health System, Newark, Delaware, USA., Cornacchia M; Department of Medicine, Geisinger Health System, Danville, Pennsylvania, USA., Davis TW; Department of Medicine, Geisinger Health System, Danville, Pennsylvania, USA., Berens JC; Department of Medicine, Baylor College of Medicine, Houston, Texas, USA., Riddle I; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA., Woodward JF; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA., Jan S; Division of General Pediatrics, Steven & Alexandra Cohen Children's Medical Center of Northwell Health, New Hyde Park, New York, USA.; Department of Pediatrics, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York, USA.; Feinstein Institutes for Medical Research, Northwell Health, Manhasset, New York, USA.
Jazyk: angličtina
Zdroj: Journal of applied research in intellectual disabilities : JARID [J Appl Res Intellect Disabil] 2022 May; Vol. 35 (3), pp. 867-877. Date of Electronic Publication: 2022 Mar 11.
DOI: 10.1111/jar.12991
Abstrakt: Background: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice.
Methods: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status.
Results: NVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool.
Conclusions: This study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.
(© 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)
Databáze: MEDLINE
Externí odkaz:
Nepřihlášeným uživatelům se plný text nezobrazuje