The DAPPLE Project
Research type
Research Study
Full title
Developing effective service models for Adult Palliative and end of life care for People with a Learning disability (DAPPLE): Work package 3B
IRAS ID
328278
Contact name
Irene Tuffrey-Wijne
Contact email
Sponsor organisation
Kingston University
Clinicaltrials.gov Identifier
researchregistry10500, Research Registry
Duration of Study in the UK
2 years, 5 months, 29 days
Research summary
About 1 million people in England have a learning disability. They experience stark health inequalities, dying on average 22 years earlier than the general population. They do not have equal access to palliative and end-of-life care services. Their palliative and end-of-life care needs are often unrecognized or not addressed, contributing to poorer, often avoidable outcomes.
This study is a work package of a wider project which aims to improve the quality and accessibility of palliative and end-of-life care for people with a learning disability. We will work with health and social care services in four localities in England to explore what works well and what prevents the delivery of high quality palliative and end-of-life care. Within these localities, we will identify up to 20 people with a learning disability with current palliative and end-of-life care need and up to 40 people with a learning disability who have died recently. We will interview patients/family/carer/staff, look at documents, and “hang out” with those with current palliative and end-of-life care need (ethnography). We will produce 12 exemplars as comprehensive case studies.
People with a learning disability, self-advocacy groups, family carers, policy makers and other stakeholders will work with the project team throughout. We will employ researchers with a learning disability as part of the core team. We will seek to ensure other disadvantaging factors are known and represented, especially ethnicity and rurality, as well as different levels of learning disability.
Outputs will be in suitable formats for different audiences, including easy-read materials and easy-to-understand videos. We will engage with specialist networks and produce blogs, webinars and social media activities. We will develop free Open Learn educational online materials for the public and professionals.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
25/WM/0065
Date of REC Opinion
15 May 2025
REC opinion
Further Information Favourable Opinion