Partnering with Family Organizations in Research: Experiences from the Field

Jessica Holmes, Tennyson Dahlman, Eric J. Bruns, Misty Woody, Melissa Hendricks, Millie Sweeney and Bruno J. Anthony ()
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Jessica Holmes: Department of Psychiatry, University of Colorado School of Medicine, Mail Stop F550 1890 N. Revere Court, Anschutz Health and Sciences Building, Suite 5240, Aurora, CO 80045, USA
Tennyson Dahlman: Department of Psychiatry, University of Colorado School of Medicine, Mail Stop F550 1890 N. Revere Court, Anschutz Health and Sciences Building, Suite 5240, Aurora, CO 80045, USA
Eric J. Bruns: Department of Psychiatry, University of Washington School of Medicine, Seattle, WA 98195, USA
Misty Woody: Allegheny Family Network, 1501 Reedsdale Street Suite 2007, Pittsburgh, PA 15233, USA
Melissa Hendricks: Oregon Family Support Network, 4275 Commercial St. SE, Suite 180, Salem, OR 97302, USA
Millie Sweeney: Family-Run Executive Director Leadership Association, 4725 Dorsey Hall Dr a316, Ellicott City, MD 21042, USA
Bruno J. Anthony: Department of Psychiatry, University of Colorado School of Medicine, Mail Stop F550 1890 N. Revere Court, Anschutz Health and Sciences Building, Suite 5240, Aurora, CO 80045, USA

IJERPH, 2025, vol. 22, issue 6, 1-13

Abstract: 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.

Keywords: Parent Peer Support; Family-Run Organizations; participatory action research; mental health; systems of care; Nominal Group Process (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2025
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