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Palliative Medicine
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Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London

I. Tuffrey-Wijne

Division of Mental Health, St George's, University of London, London, ituffrey{at}sgul.ac.uk

L. McEnhill

The National Network for the Palliative Care of People with Learning Disabilities (NNPCPLD), Cambridge

L. Curfs

Gouverneur Kremers Centre, University of Maastricht/Academic Hospital Maastricht, Maastricht

S. Hollins

Division of Mental Health, St George's, Unveristy of London, London

Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are. Palliative Medicine 2007; 21: 493—499

Key Words: attitude of health personnel • death • health services accessibility • intellectual disabilities/mental retardation • palliative care • qualitative methods

Palliative Medicine, Vol. 21, No. 6, 493-499 (2007)
DOI: 10.1177/0269216307082019
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Home page
 Palliat MedHome page
I Tuffrey-Wijne, R Whelton, L Curfs, and S Hollins
Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals
Palliative Medicine, April 1, 2008; 22(3): 281 - 290.
[Abstract] [PDF]