Benefits and Burdens of Research Participation: A Mixed Methods Systematic Review in Palliative and End-of-Life Care

Research participation of hospice and palliative care patients and family caregivers is essential to develop and test best practices. Yet, healthcare professionals are often hesitant to ask patients and caregivers to participate in research, fearing it is too intrusive or unethical during a sensitive time. This review focused on the motivating factors, benefits, and burdens of research participation for patients with serious illness and their family caregivers. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Checklist, searches were conducted in 4 online databases for articles between January 1, 2015 and January 31, 2024. The team reviewed 3169 articles; 28 met inclusion criteria and findings were extracted and synthesized using the Joanna Briggs Institute’s mixed-method systematic reviews methodology following evaluation of each study. Results suggest greater benefits than burdens, reporting value in participation even when a burden is experienced. Burdens point to important social determinants of health concerns in research participation. For clinicians and researchers, connecting patients and caregivers to palliative and end-of-life research may be both beneficial as a contribution to scientific literature and as an additional source of ongoing support.