Benefits and burdens of research participation: A mixed methods systematic review in palliative and end-of-life care

Benefits and burdens of research participation: A mixed methods systematic review in palliative and end-of-life care
Journal of Hospice and Palliative Nursing; by Cara L Wallace, Stephanie P Wladkowski, Ruaa Al-Juboori, Anna Wingo, Kathryn W Coccia, Rebecca Hyde, Verna Hendricks-Ferguson; 8/25
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. 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.