Treffer: Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.

Title:
Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.
Authors:
Fakolade A; Louise D. Acton Building, School of Rehabilitation Therapy, Queen's University, 31 George Street, Kingston, ON K7L 3N6, Canada., Stone C; Louise D. Acton Building, School of Rehabilitation Therapy, Queen's University, 31 George Street, Kingston, ON K7L 3N6, Canada., Bobbette N; Louise D. Acton Building, School of Rehabilitation Therapy, Queen's University, 31 George Street, Kingston, ON K7L 3N6, Canada.
Source:
International journal of environmental research and public health [Int J Environ Res Public Health] 2023 Nov 16; Vol. 20 (22). Date of Electronic Publication: 2023 Nov 16.
Publication Type:
Journal Article; Research Support, Non-U.S. Gov't
Language:
English
Journal Info:
Publisher: MDPI Country of Publication: Switzerland NLM ID: 101238455 Publication Model: Electronic Cited Medium: Internet ISSN: 1660-4601 (Electronic) Linking ISSN: 16604601 NLM ISO Abbreviation: Int J Environ Res Public Health Subsets: MEDLINE
Imprint Name(s):
Original Publication: Basel : MDPI, c2004-
MeSH Terms:
Caregivers* , Developmental Disabilities*, Child ; Female ; Humans ; Male ; Pilot Projects ; Delphi Technique ; Canada ; Research
References:
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Grant Information:
N/A Queen's Health Sciences Internal Grant
Contributed Indexing:
Keywords: Delphi technique; caregivers; developmental disabilities; research agenda; wellness
Entry Date(s):
Date Created: 20231124 Date Completed: 20231127 Latest Revision: 20250911
Update Code:
20250911
PubMed Central ID:
PMC10671217
DOI:
10.3390/ijerph20227072
PMID:
37998303
Database:
MEDLINE

Weitere Informationen

Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.