Adapting the Parent Connector program for caregivers of adults with SMI: the Family Connector experience

Schizophrenia and other psychotic disorders are serious mental illnesses associated with marked functional impairment, elevated mortality risk, family distress, and economic burden. The period following first episode psychosis (FEP), which typically occurs in adolescence or early adulthood, is critical for determining illness trajectory; coordinated specialty care programs have been developed internationally in response. Despite benefits of evidence-based psychosocial interventions and medication, disengagement from treatment is common and may undermine outcomes. Family involvement is a key predictor of sustained engagement, yet caregivers face substantial barriers across systems (delays in access, limited continuing care after discharge, constrained non-clinical supports) and experience high levels of psychological distress. Family peer support may address caregivers’ informational (psychoeducation, resource navigation) and emotional support needs, but evidence for caregivers of adults with SMI is limited. The present study describes and documents the systematic adaptation of the evidence-based Parent Connectors program to Family Connectors (FC) for caregivers of young adults discharging from FEP services (OnTrackNY), with the aim to improve program fit, specify modifications, and inform future implementation and evaluation.

The paper highlights a paucity of research on family peer interventions for caregivers of adults with SMI; existing evidence shows variable outcomes with some positive effects on functioning and symptoms. Within FEP programs, family education and involvement are prioritized, but family peer professionals are not universally integrated. Treatment disengagement is common in FEP for multifactorial reasons (e.g., dissatisfaction with services, limited trauma-informed and culturally relevant approaches). Disparities exist across race/ethnicity and culture in pathways to care and access to quality treatment. Caregivers require both psychoeducation/resource navigation and emotional support. Prior work on Parent Connectors demonstrated effectiveness for caregivers of school-aged youth, suggesting potential adaptability to other populations. Communication strategies like LEAP (Listen-Empathize-Agree-Partner) have been associated with improved insight and adherence in SMI, supporting their inclusion. Literature on support groups indicates psychosocial benefits for individuals with SMI and families, underscoring the need for tailored resources for this population.

Design and setting: The adaptation was undertaken within an ongoing NIMH-funded study evaluating FC effects on caregiver self-efficacy, health services activation, hope, and selected young adult outcomes (e.g., employment, adherence) among caregivers of young adults discharged from OnTrackNY, New York’s coordinated specialty care program for FEP (ages 16–30). The study is not integrated with OnTrackNY services. Intervention basis and initial adaptation: FC adapts the Parent Connectors (PC) program, grounded in the Theory of Planned Behavior (subjective norms, perceived behavioral control, attitudes). As in PC, FCs are trained peer support professionals providing informational, instrumental, and emotional support. Training retained the PC format (didactics, role-plays, team-building) while adding FEP-relevant content (psychosis psychoeducation, OnTrackNY). FCs conduct weekly telephone calls with caregivers for 6 months and receive weekly supervision with an FC coach (mental health professional). FCs and coach trained with PC developers (February 2022); service delivery began March 2022. By the time of reporting, 21 caregivers were served. Approach to adaptation: A collaborative partnership between researchers and five FCs (with lived experience; one culture broker bridging research and practice) facilitated iterative refinements during the first implementation year. A formal review divided the FC manual into 10 sections for weekly joint meetings to (1) assess application of strategies, (2) identify most helpful strategies, and (3) propose edits/additions/removals to improve fit for caregivers of young adults with SMI. Notes from implementation and review informed classification of adaptations using Stirman et al.’s framework (content, context, training/evaluation), with documentation of decision-makers and intended beneficiaries. Manuscript preparation was co-authored by the team.

Adaptations after initial implementation were primarily content modifications, with one supervision change categorized under training/evaluation. No further context changes were needed beyond the initial population shift. Content modifications (tailoring/tweaking/refining): - Emphasized unique issues in caring for adult loved ones (long service histories, legal constraints on caregiver involvement, variable clinician inclusion of caregivers, need for partnership over authority). - Expanded training on SMI-specific factors (anosognosia, chronicity/unpredictability of symptoms) and tailored emotional support needs (ambiguous grief, isolation, shame, trauma). - Increased emphasis on safety and crisis planning; routine inquiry about safety; education on structural supports (988 vs 911, AOT, PADs) and clearer FC roles during crises. - Greater focus on cultural competence and humility due to compounded marginalization. Integrating another approach: Incorporated caregiver education on the LEAP (Listen-Empathize-Agree-Partner) method to build trust and improve communication, particularly when anosognosia limits insight and treatment adherence. Adding elements: Created an online resource hub for ongoing caregiver referral; recommended development of a tailored monthly support group post-discharge. Lengthening/extending: Extended services by approximately 2 months for some caregivers, especially during crises or when securing services was delayed due to system constraints and lack of a natural endpoint. Training/evaluation modification: Added a weekly peer-to-peer supervision meeting (without the FC coach) to process burnout, triggers, and to provide mutual support; standard contact logs and outcome measures from PC were retained.

The structured, collaborative adaptation process preserved core theoretical elements of the Parent Connectors program while refining FC to fit caregivers of adults with SMI. The predominance of low-magnitude tailoring reflects the program’s inherent flexibility and individualized focus, facilitating application to a novel population. Emphasizing partnership with adult service providers, understanding HIPAA constraints, addressing anosognosia, cultural humility, and proactive crisis planning aligns FC activities with the realities of adult SMI caregiving and may enhance engagement and caregiver well-being. The integration of LEAP is consistent with evidence linking improved communication to better insight and adherence. Extending the intervention in select cases acknowledges non-linear recovery trajectories and systemic barriers post-FEP discharge. The added peer-only supervision supports FC well-being and role clarity, complementing clinician-led coaching and addressing known supervision challenges for peer providers. While outcome data are pending, the adaptations are expected to more directly impact proximal caregiver outcomes (self-efficacy, strain) than immediate young adult outcomes, which may require longer time horizons and broader system-level changes.

This work documents the first detailed adaptation of a family peer support intervention for caregivers of young adults with SMI transitioning from FEP services. By retaining core components of Parent Connectors and systematically tailoring FC content, adding LEAP-based communication strategies, building crisis and cultural competence, creating a resource hub, selectively extending service duration, and enhancing supervision with peer-only meetings, the program is better aligned with caregiver needs and system realities. Future research should standardize and test these adaptations against usual community services, evaluate optimal timing (e.g., intake or first hospitalization), determine cost-effectiveness, expand culturally responsive practices, and identify integration pathways within coordinated specialty care. Centering lived experience and cross-stakeholder collaboration remains essential to optimize caregiver support and downstream outcomes.

Generalizability is limited by a single-state (New York) context and recruitment from OnTrackNY; only three team members had lived experience specifically with FEP programs. The number of caregivers served to date is small. Direct feedback from caregivers who received FC has not yet been collected; a qualitative study is underway. Outcome data are pending as the parent study is ongoing.