Case studies & study sites
We want to explore what is currently happening with people with a learning disability who are coming to the end of their life. We will do this in four diverse areas in England (study sites):
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Croydon (South London)
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Bedfordshire, Luton and Milton Keynes
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Leicester, Leicestershire and Rutland
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Kirklees, Calderdale and Wakefield (West Yorkshire)
This is the biggest part of the DAPPLE project. We have a lot of questions, including:
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What palliative and end of life care do people get?
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How do people with a learning disability (and their families and carers) experience the care and support?
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What are the models of care that can be used?
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How can services work well together?
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What can we learning from this, about what works well and what stops people getting good care?
We will start by interviewing commissioners and senior service managers and getting to know the study sites.
We will conduct case studies between June 2025 and April 2027. At each study site, we will spend time with:
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5 People with a learning disability who have palliative and end of life care need. We will “hang out” with them (ethnography). We will listen to them, and to their family, carers and staff
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Family, carers and/or staff of 10 people with a learning disability who have died recently. We will interview them.
This part of the study is carried out by 3 academic partners:
Kingston University: Professor Irene Tuffrey-Wijne (lead), Dr Andrea Bruun (Croydon study site), Jonathon Ding (Kirklees study site)
The Open University: Professor Elizabeth Tilley (lead) Professor Louise Wallace (senior manager interviews), Professor Erica Borgstrom (ethnography lead), Ned Redmore (Milton Keynes study site)
LOROS Hospice: Dr Zoebia Islam (lead), Professor Christian Faull, Dr Francesca Horne (Leicester study site)
Within the four study sites, we are working closely together with the following organisations:
St Christopher’s Hospice (Croydon), MacIntyre (Milton Keynes), Willen Hospice (Milton Keynes), St Anne’s Community Services (Kirklees).