It's my pleasure?': the views of palliative care patients about being asked to participate in research

摘要

Background: There is a paucity of studies which explore palliative care patients’ involvement in research. Theninvolvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchersnkeen to take account of their views and experiences of service provision. Assumptions are readily madenabout whether participation is appropriate for this patient group due to their perceived vulnerability.nAim: To explore the views of hospice users regarding their motivations for taking part in a study, designed toninform the delivery of care, and ensure ongoing service improvement.nMethods: Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using anqualitative interview approach, twenty-one patients under the care of three hospices in the Aucklandnregion of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysednusing a thematic analysis technique.nResults: The involvement of hospice users in research is important and has the capacity to produce a diverse,nbut significant impact on those involved. Not only does their involvement demonstrate the potential to shapenservice provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simplyntaking part. Of particular importance is the view that participation enables a sense of personhood to benmaintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliativencare patients should be regarded as autonomous individuals and given the opportunity to participate innresearch.