ERIC Number: EJ1412955
Record Type: Journal
Publication Date: 2024
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
'There's a Timebomb': Planning for Parental Death and Transitions in Care for Older People with Intellectual Disabilities and Their Families
Rebecca J. Anderson-Kittow; Richard Keagan-Bull; Jo Giles; Irene Tuffrey-Wijne
Journal of Applied Research in Intellectual Disabilities, v37 n2 e13174 2024
Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning. Data were analysed using framework analysis. Results: Four themes were identified: 'What matters to me', 'When should we plan', 'What are the options' and 'Who will help'. Participants knew they needed to make plans but did not feel supported to do so. While they viewed moving as an opportunity for independence, they feared there were no viable alternatives. Conclusion: Person-centred resources and support are needed for families to plan for transitions in care, including proactive approaches from social services and help to prepare for conversations with social care professionals.
Descriptors: Family (Sociological Unit), Older Adults, Long Range Planning, Intellectual Disability, Death, Transitional Programs, Adults
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://bibliotheek.ehb.be:2191/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A