Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers

The study addresses how to integrate community-based participatory research (CBPR) and co-design to improve youth opioid use treatments and services. Context: Growing interest in engaging patients/families and providers to enhance quality of care, yet youth needs in opioid services are often overlooked. Youth face barriers such as age-based restrictions, provider hesitancy to prescribe OAT, confidentiality concerns, and limited youth-friendly options. The opioid toxicity crisis in Canada (32,632 deaths, Jan 2016–Dec 2022; youth represent ~21% of deaths) underscores urgency. Purpose: To describe methodological processes and procedures for weaving CBPR and co-design to collaboratively develop and implement community-specific innovations for youth, caregivers, and service providers. Importance: Few studies report how to effectively integrate these methods or engage underserved youth and families in co-design; none focus on improving youth opioid services with co-design.

The paper situates co-design among related approaches (user-/human-centered design, design thinking) that engage end-users, with co-design elevating them to equal design partners. CBPR shares principles of reciprocity and collaboration and is used to address health disparities among underserved groups. Literature highlights benefits of patient/family engagement (improved service delivery, reduced admissions, better models/processes) and potential to shift organizational culture. For youth OUD, studies report misalignment between youth treatment goals and service delivery (e.g., youth view OAT as short-term tool amid broader needs) and barriers including stigma, age restrictions, and lack of youth-friendly harm reduction services. Prior work has not detailed integrating CBPR and co-design for youth opioid services; the paper fills this methodological gap with case studies.

Design: Multi-phase project (Improving Treatment Together, ITT) combining CBPR and co-design using a six-step design thinking framework across four BC communities (Kelowna, Prince George, Victoria, Vancouver). Ethics: UBC/Providence Health Care H19-02077. Phases: Phase 1 (published elsewhere) used community workshops with youth, caregivers, providers to empathize, define problems, ideate, and prototype low-fidelity solutions. Partnerships: National (CCSA), provincial (Foundry Central Office), and community partners (Foundry centers) established per CBPR to support recruitment and implementation. Youth team members with lived experience were trained in CBPR, design thinking, and facilitation. Phase 2 (focus of this paper): Selection of 3 prototypes from 31 based on affordability, sustainability, time, cross-community identification, scalability, and local partner assessment (impact, novelty, organizational match). Community Champions (CCs) were hired to co-lead local co-design and recruitment. Case Study 1 (Caregiver Handbook, Victoria): Co-leads (family peer supporter CC and ITT lead) convened a caregiver working group (n=12; 8 remained) meeting bi-weekly (Sep 2020–Feb 2021) via Zoom. Activities: develop terms of reference, environmental scan, topic prioritization (10 topics), breakout discussions with guided prompts, iterative drafting by ITT lead with caregiver review, incorporation of content experts, external testing with Foundry Provincial Family Advisory and other caregivers, copy editing, and iterative illustration/layout co-developed with a design vendor. Implementation: online publication on Foundry website and distribution of hard copies via local organizations; evaluation measures co-developed with evaluation lead. Compensation: $25/hour honoraria. Process Evaluation: Anonymous midpoint (2 months) and endpoint (6 months) surveys adapted from PPEET administered via Qualtrics to participating caregivers (n=8 respondents). Case Study 2 (Virtual OAT Guide, Vancouver & Kelowna): CCs included youth peer supporters (Vancouver) and a mental health clinician (Kelowna, after staff turnover). Participants: 10 youth with current/recent OAT experience; a nurse practitioner contributed to clinical content. Co-design steps (Dec 2020–Aug 2022): two rounds of youth interviews to identify and prioritize topics; evidence-based content drafting and expert validation; development of youth personas (Sam on methadone; Sasha on Suboxone) via focus group/interviews and journey mapping; selection of animated video podcast format with a youth-friendly vendor; six additional podcast interviews (5 youth, 1 NP) integrating lived experience audio into scripts; artwork by a youth artist; formation of a working group meeting bi-weekly over Zoom to refine scripts, artwork, and implementation; multiple review cycles with subject matter experts and partner leadership; youth held final decision-making authority. Implementation: four-episode video series posted on Foundry YouTube; an OAT infographic (options with pros/cons per youth) and local resource lists created. Compensation: $25/hour honoraria. Process Evaluation: Midpoint survey to interviewees, working group, and content experts (Mar 2022); endpoint survey to working group (Aug 2022); PPEET-adapted Likert and open-ended items via Qualtrics. COVID-19 Considerations: All activities adapted to virtual formats; engagement strategies adjusted for safety, flexibility, and trauma-informed practice; CCs leveraged trust and relationships to recruit and support participants.

Outputs: Two co-designed innovations: 1) a caregiver handbook (online and print) providing information on youth substance use/OUD, system navigation, and supportive storytelling; 2) a youth-friendly virtual OAT guide (four animated podcast-style videos), accompanying infographic, and local resource lists, published on Foundry channels. Process acceptability and perceived impact: Caregiver handbook surveys (n=8): Participants felt supported and satisfied, able to express views, and that the prototype met community needs. Reported Likert results included high anticipated usefulness/satisfaction: usefulness to caregivers 5.0 ± 0 (median 5); willingness to share 5.0 ± 0 (median 5); increased awareness 4.83 ± 0.41 (median 5); increased understanding 4.67 ± 0.52 (median 5). Other sample items indicated strong agreement that input would be used and that the prototype would achieve intended objectives (e.g., means ~4.38–4.83 on 5-point scales). Qualitative feedback highlighted therapeutic benefits, feeling less alone, and value of facilitation and structured breakout rooms. Noted gaps: need for more diverse caregiver perspectives (people of color, immigrants, fathers, grandparents, foster parents). Virtual OAT guide surveys: Midpoint (n=7) and endpoint (n=4) respondents reported clear role understanding (mid 4.86 ± 0.38; end 5.0 ± 0), adequate supports (mid 4.57 ± 0.53; end 4.75 ± 0.5), satisfaction with time use (mid 4.86 ± 0.38; end 4.75 ± 0.5), ability to express views (mid 4.75 ± 0.5; end 4.5 ± 1), and confidence in the guide’s utility (e.g., useful to youth considering OAT mid 4.71 ± 0.49; end 4.5 ± 0.58; willingness to share 5.0 ± 0 both). Qualitative themes: the guide offers hope, normalizes/humanizes OAT, increases youth agency in decisions. Engagement enablers: Trusted Community Champions, trauma-informed and flexible approaches, separate engagement of service users and providers to mitigate power dynamics, strong facilitation, iterative feedback loops with content experts and partners. Barriers: Time and resource intensity of co-design, COVID-19 restrictions (limiting in-person engagement and testing), challenges recruiting a diverse sample, complex multi-party review cycles.

Integrating CBPR with co-design created a structured yet flexible approach to engage youth, caregivers, and providers in developing contextually relevant innovations. CBPR partnerships facilitated recruitment, local implementation planning, and navigation of COVID-19-related constraints. Co-design methods elicited lived experiences and elevated youth and caregiver decision-making, yielding resources that reflect their needs and preferences. The process underscored the importance of trusted Community Champions, trauma-informed facilitation, and addressing power dynamics by engaging service users separately from providers. Although co-design limited generalizability and required substantial time/resources, process evaluations indicated high acceptability and anticipated impact. The resulting innovations address known barriers (e.g., lack of youth-friendly OAT information, caregiver navigation challenges), potentially improving treatment decision-making, engagement, and caregiver support. Future work should evaluate real-world implementation and outcomes across diverse communities.

Weaving CBPR and co-design enabled the development of accepted, community-informed innovations for youth opioid services and caregiver support. Strong partnerships supported recruitment and sustained engagement, while flexible, trauma-informed co-design centered youth and caregiver voices. Despite time/resource demands and COVID-19-related challenges, participants reported positive experiences and anticipated benefits. Future research should extend implementation evaluation, broaden engagement to more diverse populations, and explore scalability and adaptability to other contexts.

Co-design and CBPR were time- and resource-intensive, complicated by COVID-19 restrictions, which limited recruitment, in-person engagement, and iterative testing (especially for the OAT guide). Reliance on existing networks introduced sampling bias and underrepresentation of some groups (e.g., people of color, immigrants, fathers, grandparents, foster parents). Feedback collection methods (for the handbook) were heterogeneous, limiting consistent data capture. The storytelling/experiential focus constrained iterative testing cycles, and findings/solutions may have limited generalizability beyond local contexts.