Victoria & Stuart Project - End-of-Life Toolkit Evaluation

• Research type

  Research Study

• Full title

  Evaluating a toolkit of approaches and resources for end-of-life care planning with people with learning disabilities within social care settings

• IRAS ID

  328961

• Contact name

  Irene Tuffrey-Wijne

• Contact email

  i.tuffrey-wijne@kingston.ac.uk

• Sponsor organisation

  Kingston University

• Duration of Study in the UK

  0 years, 5 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 at the end of their lives. Staff in learning disability services are therefore at the frontline of end-of-life care provision and planning.

  Learning disability services have asked us for help to get end-of-life care planning right for the people they support. People with learning disabilities 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.

  We have worked together with a team of people with learning disabilities, family carers and professionals to review existing resources for end-of-life care planning and to coproduce a new ‘toolkit’ of recommended resources and approaches.
  This study evaluates this end-of-life care planning ‘toolkit’ in practice.

  We will:
  1. Introduce the toolkit to support workers (testers) across a range of learning disability services.
  2. Invite testers to try out the toolkit with people with learning disabilities and/or their families (planners) as part of usual care conversations about funeral &/or illness planning.
  3. Evaluate the benefits, challenges and experiences of using the toolkit using qualitative diaries, questionnaires and focus groups with testers and their managers.
  4. Record and analyse ten end of life care planning conversations between testers and PwLD to understand how these happen in practice.
  5. Publish the toolkit online for wider use.
  6. Conduct an online survey about usefulness, acceptability of the toolkit and the roles and characteristics of the people who use them.
  7. Use the results of this evaluation to update the toolkit

  This project is a unique collaboration between researchers (with and without learning disabilities), LD and palliative care services. People with learning disabilities, family carer organisations, policy makers and other stakeholders formally advise the project team throughout.

• REC name

  Social Care REC

• REC reference

  23/IEC08/0033

• Date of REC Opinion

  29 Sep 2023

• REC opinion

  Further Information Favourable Opinion