‘There's a timebomb’: Planning for parental death and transitions in care for older people with intellectual disabilities and their families

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 disa...

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Bibliographic Details
Published in:Journal of applied research in intellectual disabilities 2024-03, Vol.37 (2), p.e13174-n/a
Main Authors: Anderson‐Kittow, Rebecca J., Keagan‐Bull, Richard, Giles, Jo, Tuffrey‐Wijne, Irene
Format: Article
Language:English
Subjects:
Adult children
Aged
ageing
Aging
Assisted living facilities
Communication
Humans
Intellectual disabilities
Intellectual Disability
Older people
parent carers
Parental Death
Parents
Parents & parenting
planning
qualitative
Qualitative research
Siblings
Transitions
Citations: Items that this one cites
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Summary: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.
ISSN:1360-2322
1468-3148
DOI:10.1111/jar.13174