Family Caregiver Participation in Palliative Care Research: Challenging the Myth

Context. Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. Objectives. To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. Methods. Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. Results. Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research the majority rated their involvement as very/extremely beneficial (control 77% intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed" "connection with others-outward directed" and "interpersonal-participant-researcher relationship." Conclusions. This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings.