Future planning for people with learning disabilities & family carers
Research type
Research Study
Full title
Growing older - Planning ahead: Co-designing resources to support future planning for older adults with learning disabilities and their families
IRAS ID
292248
Contact name
Irene Tuffrey-Wijne
Contact email
Sponsor organisation
Kingston & St George's University of London
Duration of Study in the UK
1 years, 5 months, 28 days
Research summary
This is the second stage of a work package to investigate, co-design and test a family-based support programme to help families living with older people with learning disabilities to prepare for parental loss, transitions in care, and end-of-life care for carers. It is part of a wider programme of work, "Growing Older, Planning Ahead".
We are currently conducting stage one of the work package, interviewing older people with learning disabilities (aged 40+) living at home with family; elderly parental carers; and siblings/close relatives. These interviews and focus groups explore experiences, hopes and concerns about future planning. In stage two, we will use the findings from stage one to inform co-design sessions to develop resources for transition planning. First, we will create a short video of people with learning disabilities and their families discussing future planning. People with learning disabilities and their families will then be invited to take part in group co-design sessions, where they will help to develop resources to support planning for the future. The video will be shown in the first session to spark discussion and structure the session. In regular meetings over six to nine months, families, alongside the research team, will decide on the content, format and design of the resources and consider how they could be used in practice. Relevant guest speakers, (e.g. social workers, solicitors, families) will also be invited to contribute sessions. It is unclear exactly what will be included in resources, as this will depend on the priorities of the participants. However, it is likely to include areas such as how to start the conversation about future planning; different residential options; and financial arrangements.
The final stage will involve testing the usefulness and acceptability of the resources developed in stage two. Ethical approval for stage three will be sought separately.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
21/LO/0494
Date of REC Opinion
9 Aug 2021
REC opinion
Further Information Favourable Opinion