The literature observes the importance of not forgetting the patients voice5 and that users views are considered central to policy6. In addition there is evidence that people facing death may wish to participate in research7 with evidence of benefit 3,8, including social interaction, a sense of contributing and the opportunity to discuss their illness9.
So if research is potentially sensitive why do we do research in hospice and palliative care?
Dr Liz Reed, Research Lead at Princess Alice, Hospice in Esher reflected:
“I know that people can be concerned about patients and families taking part in research. That they are vulnerable and should not be approached at such a difficult time in their lives. This can be true at times so doing research in hospices needs a considerable amount of sensitivity. I always try work with the doctors and nurses involved in the day to day care. They know their patients well and on the whole I don’t see gate keeping, just an appropriate level of protection for their patients”
“What’s important when taking part in research is a credible organisation who clearly explain what the objectives of the research are, how you could help, the type of thing you will need to do, how long it takes, when it takes place, whether there is any remuneration for taking part, what happens to the information you give (anonymity etc.), no right or wrongs etc”.
“The benefits are making a product/service even better, tailoring it to what people really want and need. Hearing the voice of people 'at the coal face'”.
You can see her video interview with Pat, whose husband was involved in research at St Richards Hospice Worcester here https://www.strichards.org.uk/about/education/research/ . Pat emphasises how taking part in hospice research is about being for the good of other people.
A therapeutic value in taking part in the interview
“I’ve been quite relaxed...you know...actually I have enjoyed it. Because it has bought more things out.... it's bought more things out ...and be able to discuss things easier”
Motivation to help others
“If this can be of any help to any other people in the future then fantastic”
Being videoed was a novelty rather than a burden.
“oh no it (pointing at flip video) puts you on the back foot...that’s all but you soon get used to it I mean its only tiny interview not for hours”
So #whywedoresearch in hospice and palliative care?
Because it enables better partnerships between clinical practice, academic knowledge and the real world of peoples lives.
- Gysels M and Higginson IJ, 2007. Systematic Reviews. In Addington-Hall JM and Bruera E and Higginson IJ and Payne S, ed. Research Methods in Palliative Care. Oxford University Press, pp. 115–136.
- Murtagh, F.E.M., Addington-Hall, J.M. & Higginson, I.J., 2007. The value of cognitive interviewing techniques in palliative care research. Palliative Medicine, 21(2), pp.87–93.
- Gysels, M., Shipman, C. & Higginson, I.J., 2008. Is the qualitative research interview an acceptable medium for research with palliative care patients and carers? BMC Medical Ethics, 9(1), p.7.
- Wiles, R., Crow, G., Heath, S. and Charles, V., 2008. The management of confidentiality and anonymity in social research. International Journal of Social Research Methodology, 11(5), pp.417-428.
- Mak, Y.Y.W. & Elwyn, G., 2005. Voices of the terminally ill: uncovering the meaning of desire for euthanasia. Palliative medicine, 19(4), pp.343–350.
- DH, 2008. End of Life Strategy: Promoting High Quality Care for All Adults at the End of Life, London.
- Kendall, M., Harris, F., Boyd, K., Sheikh, A., Murray, S.A., Brown, D., Mallinson, I., Kearney, N. and Worth, A., 2007. Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study. bmj, 334(7592), p.521.
- Gysels, M., Evans, C.J., Lewis, P., Speck, P., Benalia, H., Preston, N.J., Grande, G.E., Short, V., Owen-Jones, E., Todd, C.J. and Higginson, I.J., 2013. MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research. Palliative medicine, 27(10), pp.908-917.
- Pessin, H., Galietta, M., Nelson, C.J., Brescia, R., Rosenfeld, B. and Breitbart, W., 2008. Burden and benefit of psychosocial research at the end of life. Journal of palliative medicine, 11(4), pp.627-632.