The Stuart and Victoria Project
Research type
Research Study
Full title
Co-designing a toolkit of approaches and resources for end-of-life care planning with people with learning disabilities within social care settings
IRAS ID
311198
Contact name
Irene Tuffrey-Wijne
Contact email
Sponsor organisation
Kingston & St George's University of London
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
There are around a million people with learning disabilities in England, almost two thirds of whom live in residential care or supported living settings when they reach the end of their lives. Staff in learning disability services are therefore at the frontline of end-of-life care provision and planning, but they are often unprepared for this, lacking skills and/or confidence. People with learning disabilities themselves can find it hard to understand what is happening and are rarely involved in ensuring that end-of-life care is given according to their wishes and preferences. Learning disability services have asked us for help in knowing how to get end-of-life care planning right for the people they support.
Our study aims to co-design an end-of-life care planning toolkit for use within learning disability services. We will:
1. Hold focus groups with people with learning disabilities, families and professionals, asking them about their views and preferences about end-of-life care planning
2. Work together with a team of people with learning disabilities, family carers and professionals to review and further develop, approaches and resources for end-of-life care planning
Our final toolkit will clarify for who and in what situations the approaches and resources are most likely to be beneficial. They are primarily aimed at staff working in adult social care services, but will also be useful for families, people with learning disabilities themselves, and healthcare professionals. The toolkit will be evaluated in a later study and ethical approval for this will be sought separately.
This project is a unique collaboration between researchers (including researchers with learning disabilities, who have helped plan the project), services that support people with learning disabilities and palliative care services. There is strong engagement with people with learning disabilities, family carer organisations, policy makers and other stakeholders, who will advise the project team throughout.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
22/WM/0026
Date of REC Opinion
25 Apr 2022
REC opinion
Further Information Favourable Opinion