Growing older, planning ahead (WP4 Stage 1)
Research type
Research Study
Full title
Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and end of life care planning for carers. WP4 (Stage 1): Investigate 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.\n\n
IRAS ID
286973
Contact name
Irene Tuffrey-Wijne
Contact email
Sponsor organisation
Kingston University
Duration of Study in the UK
2 years, 5 months, 28 days
Research summary
This is the first stage of a work package to investigate, co-produce 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: Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and end of life care planning for carers“. \nIn stage 1 of this work package, we will conduct interviews and focus groups with older people with learning disabilities (aged 40+) living at home with family carers; elderly parental carers; and siblings/close relatives, to explore experiences, hopes and concerns about current and future living situations, as well as possible helpful interventions and resources for transition planning. Participants will be identified primarily through Oxford Family Support Network (OxFSN). Only adults with learning disabilities who are able to give informed consent will be included. Data collection methods for participants with learning disabilities will be flexible and may include the use of pictures. The research team includes a co-researcher with learning disabilities, who will be actively involved in data collection with participants with learning disabilities. The aim is for most interviews and focus groups to be held face-to-face over a period of 10 months (starting November 2020), but some flexibility in this may needed during the Covid-19 restrictions; telephone or video interviews are a possibility.\nWe will conduct thematic analysis of all data, using constant comparison techniques, aided by memos and mind maps, and involving discussions with the core research team as well as the wider programme team.\nIn stages 2 and 3, we will use Experience-Based Co-Design methods to co-produce and test family-based interventions. Ethical approval for this will be sought separately. \n
REC name
Social Care REC
REC reference
20/IEC08/0035
Date of REC Opinion
13 Nov 2020
REC opinion
Favourable Opinion