Research is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research.
To synthesise the evidence regarding patients’, family members’ and carers’ experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants.
A qualitative rapid review and thematic synthesis.
MEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients’, family members’ or carers’ experiences of participating in PEoLC research were included.
4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs.
A number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.