Partnering with Family Organizations in Research: Experiences from the Field

Parent Peer Support (PPS) provided by other caregivers who have lived experience raising a child with mental health conditions (e.g., such as anxiety, depression, attention, and/or behavior disorders) holds promise as a service that can improve outcomes by helping young people and their families overcome system- and individual-level barriers to receiving care. Here, we describe the development of a collaboration of researchers and Family-Run Organizations (FROs) to provide research support for PPS through three phases (1) developing a research agenda and study aims through a Patient-Centered Outcomes Research Institute (PCORI) “Pipeline to Proposal” grant; (2) designing a pilot study, including refining the measurement framework for a successful grant application to the National Institute of Mental Health (NIMH); and (3) implementing the study through the incorporation of research methodology into FRO operations without disrupting the organizations’ missions. This paper summarizes the participatory action research (PAR) strategies employed by this interdisciplinary research team throughout the three phases, covering the benefits and challenges of these unique partnership activities. We focus on how this project was able to increase the relevance of the research to the FROs and the communities they serve and improve dissemination and utilization of the results to support other PPS projects.