Family Caregiver Partnerships in Palliative Care Research Design and Implementation

Abstract

Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”1 Similarly, family partnerships in pediatric palliative care (PPC) research represent an innovative approach to the planning, delivery, and evaluation of research that is grounded in mutually beneficial relationships that recognize the importance of the family caregiver perspective. The goal of partnered research or study teams is to synthesize the unique perspectives of family caregivers, clinicians, regulatory representatives, and researchers to strengthen research design and implementation. This is accomplished by each unique stakeholder speaking from their own perspective, contributing what they know, and working together to integrate perspectives. The process of moving from just inviting family caregivers to be research subjects to actually engaging with family caregivers as partners with input into research design and development leads to feasible, acceptable, and effective research design and methods.