Research & Outcomes

Family voice and engagement is important at all points in data collection, evaluation, and research. Families play a key role in identifying the areas to study, and the design, implementation, analysis, and dissemination of research. 

FREDLA can help your organization develop strategies to engage families in data collection and evaluation, as well as support the development of mechanisms to capture valuable data for quality improvement, advocacy, and sustainability.  FREDLA is a conduit to partnerships between family-run organizations, families, and researchers for studies into the areas of children’s mental health and systems that impact child and family outcomes. Below are some of FREDLA’s research and evaluation activities.

Family Research Partnership

FREDLA hosts the Family Research Partnership, a national group of family leaders from 16 states, state and national stakeholders, and researchers from 10 renowned centers of excellence in children’s mental health focused on researching and contributing to the literature around family engagement, the impact of family-run organizations (FROs) and parent peer support. The Partnership meets quarterly to share ideas and work, to identify potential research opportunities and to provide a space for researchers, FROs and family leaders to connect for collaborative research projects.

Collaborative research projects

FREDLA partners with research institutions across the nation to explore and evaluate topics related to children’s mental health, family engagement, parent peer support, and more. Our collaborative efforts have also yielded new tools for use in our work.

Leveraging a Community-Based Participatory Approach in the Design of a Family Engagement Intervention that Optimizes Adolescent Residential Treatment Gains. (2023-2025) – Collaboration led by Ohio State University and comprised of FREDLA, Devereux Advanced Behavioral Health (corporate office, AZ, GA), and family-run organizations in the Arizona and Georgia to study implementation and outcomes of parent peer support with youth and families involved in residential care.

Family Engagement in Residential Programs (2023) A Group Concept Mapping Study Findings Report. Columbus, OH: The Ohio State University College of Nursing: Supporting families during and after residential care is associated with a six-fold increased likelihood of sustained treatment gains. The Family First Prevention Services Act (FFPSA) recognizes the importance of family engagement and mandates that residential programs engage families. While this legislation promises to overhaul residential care, advocates have voiced concerns about the lack of clarity and uniformity around what family engagement will look like in practice.  As of January 2023, the federal government still had no definition or activities around family engagement in residential care.  Read the findings of this group concept mapping study to learn more. 

Eugene Washington PCORI Engagement: “Youth and Family Behavioral Health Service Priorities: Identifying Outcomes that “Matter” (2022-2023)PCORI convening award to fill a knowledge gap in existing PCOR/CER around outcomes that matter to youth and families through a series of stakeholder convenings. The project has the following objectives: 1. To develop a comprehensive list of existing child/YYA- and family-level outcomes used in behavioral health services policies and research; 2. To identify child/YYA- and family-level behavioral health services outcomes most valued by child and YYA service users and their parents, as well as the underlying values that are the foundation of these preferences overall and by domains (e.g., symptoms, functioning, health care system); and 3. To create a summary of Patient-Centered Outcomes (PCOs) valued by child behavioral health services most valued by children and YYA with behavioral health needs and their parents; Distribute the summary through our dissemination networks. FREDLA partnered with FROs and their YYA-Led organizational partners in six communities around the U.S. to plan and execute the local convenings and to finalize and disseminate project results. FREDLA collaborated with the University of Texas at Arlington and the University of North Carolina Chapel Hill for research guidance and support. These documents offer additional details. Project Brief Infographic Expanded Outcomes from Infographic

Systematic Review of Family Engagement in Residential Treatment (2021-2023) – The Research Committee of ACRC completed an overarching systematic review project that aimed to review the literature on family partnership in relation to youth outcomes.  FREDLA provided a tiered conceptualization of family partnership used by the researchers, defining and providing examples of family involvement (i.e. family’s inclusion in their child’s care); family engagement (i.e. collaboration between TRC and families); and family-driven (i.e. families as full partners). The review found that the most common family involvement methods were family therapy and family visits to the program, and the most common family engagement method was activities, therapies, and skill building occurring at the home with family present. Implications for research and practice include the provision of research that evaluates the effects of family partnership on outcomes important in the TRC setting and the development of research-practice and family-research collaborations to increase the uptake of effective family partnering methods.  Several journal articles have been published from this review, including Are We Practicing What We Preach? Family Partnership in Therapeutic Residential Care for Children and Youth.

NIMH R-34 Parent Peer Navigator (2019-2023): FREDLA is a collaborative partner with the University of Colorado, the University of Washington, the University of Pittsburgh, Allegheny Family Network (PA), Uplift Wyoming, and Oregon Family Support Network on a 3 year study of parent peer support providers as navigators supporting parents of children who are just entering the mental health service system. The goal is to examine if the use of parent peer support providers impacts the trajectory of the children’s mental health challenges/illness and the families’ ability to navigate the necessary service systems.

Ripple Effects (2020-2022) –  Ripple effects are positive or negative effects that are not usually examined in mental health research, such as feelings of self-confidence or burnout that might result from being a peer support provider, or unexpected and unplanned outcomes. FREDLA was a collaborative partner for this NIMH funded study headed by Michael Pullman, PhD, and his team at the University of Washington. See the results of the study here

PCORI Pipeline to Proposal project(2015-2018) Improving Outcomes for Children with Mental Health Challenges and Their Families through Parent-to-Parent Peer Support .  The Patient-Centered Outcomes Research Institute (PCORI) awarded a Pipeline to Proposal grant to FREDLA to develop a study measuring the impact of family peer support provider services. The program funded three tiers of awards that supporting FREDLA and partners to establish community partnerships, develop research capacity, and hone a comparative effectiveness research question that became the basis of a research funding proposal that was submitted to PCORI and to the National Institute of Mental Health. The Family Research Partnership was formalized during this project, and the group submitted a successful proposal to NIMH in tier three for an R-34 research project on parent peer navigation.