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Reflections and projections: Service user involvement in palliative care research

Phil Cotterell, Patient and Public Involvement Research Unit, Worthing and Southlands Hospitals NHS Trust
Co-author(s): Di Cowdrey and Mandy Paine, Research User Advisory Group for the 'Influencing Palliative Care Project'

Full paper (word doc)

Full paper (pdf)


This paper will discuss research in palliative care that is inclusive of the experience, knowledge and perspectives of service users. This is a collaborative presentation including people with direct experience of life limiting conditions. We are keen to address issues of choice and control within the research process for the service users involved. The research includes chronic conditions such as HIV+, multiple sclerosis and cancer amongst others, and such conditions are now included in the Draft Disability Discrimination Bill from point of diagnosis. People with life limiting conditions, the focus for palliative care, often challenge the 'personal tragedy' stereotype given them and this research is raising tentative connections to wider concerns of oppression and discrimination highlighted in disability studies/theory.

One of the reasons given by people who are reluctant to work with service users is that there is no proof that this involvement makes a positive difference to the research; others are that active involvement is simply too difficult or it doesn't lead to change for those who are involved (Boote et al, 2002). We will consider these points. It is stressed thatservice users need to be the commissioners and producers of research, and we will address how we are moving along in the process of a formation of equal relationships in the research (Beresford & Evans, 1999:674).

We will consider the effect of involvement on those involved and what it has been like, this working together collectively on a project that we all are committed to for different reasons. We will question the process of involvement in research for all and will reflect on emerging findings.


Beresford, P. & Evans, C. (1999) Research Note: Research and Empowerment. British Journal of Social Work. 29. Pp671-677

Boote, J., Telford, R., & Cooper, C. (2002) Consumer involvement in health research: a review and research agenda. Health Policy. 61. Pp213-236

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