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

Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project's activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

"A peer support worker can really be there supporting the youth throughout the whole process": a qualitative study exploring the role of peer support in providing substance use services to youth.

BACKGROUND: Youth (ages 12-24) rarely access services and supports to address substance use concerns. Peer support can facilitate service engagement and has been associated with positive substance use recovery outcomes in adults, yet few studies have examined this role among youth specifically. As such, this qualitative study explored the role of peer support in providing substance use services to youth in British Columbia and how best to support them in their role. METHODS: Participatory action research methods were used by partnering with youth who had lived/living experience of substance use, including peer support workers, to co-design the research protocol and materials. An initial focus group and subsequent interviews were held with 18 peer support workers who provide services to youth (ages 12-24) based on their own lived experience with mental health and/or substance use. The discussions were audio-recorded, transcribed verbatim, and analysed thematically using an inductive approach. RESULTS: Peer support workers' core experiences providing substance use services to youth centred around supporting youth throughout the whole process. This was accomplished by meeting youth where they are at, providing individualized care, and bridging the gap between other services and supports. However, participants experienced multiple organizational barriers hindering their ability to support youth and stressed the importance of having an employer who understands the work you are doing. This involved having someone advocating for the peer support role to promote collaboration, empowering peers to set boundaries and define their own role, and providing adequate training and mentorship. Finally, peer support workers described how their lived experience bridges connection and de-stigmatization at the individual, organizational, and community level, which was unique to their role. CONCLUSIONS: Peer support plays a unique role in youths' substance use journeys, given their own lived experience and flexibility within their role. However, their position is often misunderstood by employers and other service providers, leaving peers with inadequate support, training, and mentorship to do their job. The findings from this study call for improved integration of peer support into service environments, as well as standardized training that is in-depth and continuous.

"The system always undermined what I was trying to do as an individual": identifying opportunities to improve the delivery of opioid use services for youth from the perspective of service providers in four communities across British Columbia, Canada.

BACKGROUND: Substance use among youth is a longstanding global health concern that has dramatically risen in the era of highly toxic and unregulated drugs, including opioids. It is crucial to ensure that youth using unregulated opioids have access to evidence-based interventions, and yet, youth encounter critical gaps in the quality of such interventions. This study aims to address these gaps by identifying opportunities to improve the quality of opioid use services from the perspective of service providers, a perspective that has received scant attention. METHODS: This community-based participatory study was conducted in four communities in British Columbia (Canada), a province that declared a public health overdose emergency in 2016. Human-centered co-design workshops were held to understand service providers' (n = 41) experiences, needs, and ideas for improving the quality of youth opioid use services/treatments in their community. Multi-site qualitative analysis was used to develop overarching experiences and needs themes that were further contextualized in each local community. A blended deductive and inductive thematic analysis was used to analyze the ideas data. RESULTS: Three overarching themes were identified, reflecting service providers' goals to respond to youth in a timely and developmentally appropriate manner. However, this was significantly limited by organizational and systems-level barriers, revealing service providers' priorities for intra- and inter-organizational support and collaboration and systems-level innovation. Across communities, service providers identified 209 individual ideas to address these prioritized needs and improve the quality of youth opioid use services/treatments. CONCLUSION: These themes demonstrate a multi-level tension between macro-level systems and the meso-level organization of youth opioid use services, which undermine the quality of individual-level care service providers can deliver. These findings underscore the need for a coordinated multi-level response, such as developing youth-specific standards (macro-level), increasing inter-organizational activities and collaboration (meso-level), and creating programs that are specific to youths' needs (micro-level).

Using novel methodology to estimate the prevalence of mental disorders in British Columbia, Canada.

PURPOSE: A needs-based model of health systems planning uses a systematic estimate of service needs for a given population. Our objective was to derive annual prevalence estimates of specific mental disorders in the adult population of British Columbia, Canada and use a novel triangulation approach encompassing multiple data sources and stratifying these estimates by age, sex, and severity to inform Ministry partners, who commissioned this work. METHODS: We performed systematic literature reviews and subsequent meta-analyses to derive an annual prevalence estimate for each mental disorder. We then generated age- and sex-specific estimates by triangulating published epidemiological studies, routinely collected province-wide health administrative data, and nationally representative health survey data sources. The age- and sex-specific estimates were further stratified by severity using the Global Burden of Disease severity distributions and published literature. RESULTS: Anxiety disorders had the highest annual prevalence estimates (6.93%), followed by depressive disorders (6.42%). All other mental disorders had an annual prevalence of less than 1%. Prevalence estimates were consistently higher in younger age groups. Depressive disorders, anxiety disorders, and eating disorders were higher in women, while estimates for bipolar disorders, schizophrenia, and ADHD were slightly higher in men in younger age groups. CONCLUSION: We generated robust annual prevalence estimates stratified by age, sex, and severity using a triangulation approach. Variation by age, sex, and severity implies that these factors need to be considered when planning for mental health services. Our approach is replicable and can be used as a model for needs-based planning in other jurisdictions.

A qualitative study exploring how young people perceive and experience substance use services in British Columbia, Canada.

BACKGROUND: Substance use among youth (ages 12-24) is troublesome given the increasing risk of harms associated. Even more so, substance use services are largely underutilized among youth, most only accessing support when in crisis. Few studies have explored young people's help-seeking behaviours to address substance use concerns. To address this gap, this study explored how youth perceive and experience substance use services in British Columbia (BC), Canada. METHODS: Participatory action research methods were used by partnering with BC youth (under the age of 30) from across the province who have lived and/or living experience of substance use to co-design the research protocol and materials. An initial focus group and interviews were held with 30 youth (ages 12-24) with lived and/or living experience of substance use, including alcohol, cannabis, and illicit substances. The discussions were audio-recorded, transcribed verbatim, and analyzed thematically using a data-driven approach. RESULTS: Three main themes were identified and separated by phase of service interaction, starting with: Prevention/Early intervention, where youth described feeling unworthy of support; Service accessibility, where youth encountered many barriers finding relevant substance use services and information; and Service delivery, where youth highlighted the importance of meeting them where they are at, including supporting those who have milder treatment needs and/or do not meet the diagnosis criteria of a substance use disorder. CONCLUSIONS: Our results suggest a clear need to prioritize substance use prevention and early interventions specifically targeting youth and young adults. Youth and peers with lived and/or living experience should be involved in co-designing and co-delivering such programs to ensure their relevance and credibility among youth. The current disease model of care leaves many of the needs of this population unmet, calling for a more integrated youth-centred approach to address the multifarious concerns linked to young people's substance use and service outcomes and experiences.

Becoming our young people's case managers: caregivers' experiences, needs, and ideas for improving opioid use treatments for young people using opioids.

BACKGROUND: Evidence continues to show that young people, ages 15-24, remain at significant risk of harms from non-medical opioid use and opioid use disorder (OUD), with experts calling for widespread implementation of developmentally-appropriate interventions. These recommendations include the involvement of caregivers in the prevention, early intervention, and treatment of young people using opioids. However, little research has investigated caregivers' experiences supporting young people, leaving critical gaps in understanding this role. The aim of this study is to explore caregivers' experiences accessing opioid use treatments with young people and their needs and ideas for improving such treatments. METHODS: This study reports qualitative findings from Phase 1 of the Improving Treatment Together project, a multi-phase, multi-site community-based participatory study broadly aimed at co-designing opioid use treatments to improve the experiences and outcomes of young people using non-medical opioids. During Phase 1, a total of 27 caregivers (parents, guardians) participated in full-day workshops that were conducted in three communities in British Columbia, Canada. Following human-centred co-design methods, caregivers engaged in small and large group discussions of their experiences, needs, and ideas for improving opioid use treatments for young people. Discussions were audio-recorded, transcribed verbatim, and thematically analysed. RESULTS: Across communities, caregivers' main experiences were defined as 'becoming our young people's case managers' and 'enduring a never-ending rollercoaster'. To improve these experiences, two needs themes were identified - expanding organizational and system-level capacity and wider-spread understanding of opioid use as a health issue. Caregivers brainstormed a total of 378 individual ideas to meet these needs, several of which spanned multiple needs themes. CONCLUSIONS: Caregivers' experiences, needs, and ideas reveal critical opportunities for improving the quality of interventions for opioid use among young people. This study represents a substantial contribution to the design and implementation of developmentally-appropriate and family-centred interventions for young people using opioids.

"We need to build a better bridge": findings from a multi-site qualitative analysis of opportunities for improving opioid treatment services for youth.

BACKGROUND: Adolescence and young adulthood is an important period for substance use initiation and related harms. In the context of the ongoing opioid crisis, the risks for youth (ages 16-29) who use opioids are particularly heightened. Despite recommendations to adopt a developmentally appropriate and comprehensive approach to reduce opioid-related harms among youth, data continue to show that youth are not adequately engaged in opioid treatments and encounter many barriers. The aim of this study is to identify youth-centered opportunities for improving opioid treatment services. METHODS: This paper reports multi-site qualitative findings from youth participating in the 'Improving Treatment Together' project, a community-based participatory project being conducted in British Columbia and Alberta, two western Canadian provinces that have been dramatically impacted by the opioid crisis. Qualitative data were collected during three workshops with youth who used opioids and accessed opioid treatment services in the prior 12 months. These workshops were conducted in three communities following the core elements of human-centered co-design. A multi-site qualitative analysis was conducted to identify within- and between-site themes surrounding youths' needs for improving opioid treatment service experiences and outcomes. RESULTS: Three overarching needs themes were identified from across the communities. The first reflected youths' difficulties finding and staying connected to opioid treatment services, with the overarching need theme suggesting opportunities to reduce organizational and systems-related barriers to care, such as waiting times and wider information about service availability. The second area of need was rooted in youths' feelings of judgment when accessing services. Consequently, opportunities to increase respectful and empathic interactions were the overarching need. The final theme was more nuanced across communities and reflected opportunities for an individualized approach to opioid treatment services that consider youths' unique basic safety, social, and health needs. CONCLUSIONS: This study identifies fundamental directions for the operationalization and implementation of youth-centered opioid treatment services. These directions are contextualized in youths' lived experiences accessing services in their local communities, with overarching themes from across sites strengthening their transferability to other settings.

Estimating the Prevalence of Mental and Substance Use Disorders: A Systematic Approach to Triangulating Available Data to Inform Health Systems Planning.

OBJECTIVE: To estimate the prevalence of specific mental and substance use disorders (MSUDs), by age and sex, as a first step toward informing needs-based health systems planning by decision-makers. METHODS: We developed a conceptual framework and a systematic methodology for combining available data sources to yield prevalence estimates for specific MSUDs. Data sources used included published, peer-reviewed literature from Canada and comparable countries, Canadian population survey data, and health administrative data from British Columbia. Several well-established methodologies including systematic review and meta-analyses of published prevalence estimates, modelling of age- and sex-specific distributions, and the Global Burden of Disease severity distribution model were incorporated in a novel mode of triangulation. RESULTS: Using this novel approach, we obtained prevalence estimates for 10 MSUDs for British Columbia, Canada, as well as prevalence distributions across age groups, by sex. CONCLUSION: Obtaining reliable assessments of disorder prevalence and severity is a useful first step toward rationally estimating service need and plan health services. We propose a methodology to leverage existing information to obtain robust estimates in a timely manner and with sufficient granularity to, after adjusting for comorbidity and matching with severity-specific service bundles, inform need-based planning efforts for adult (15 years and older) mental health and substance use services.

Improving Treatment Together: a protocol for a multi-phase, community-based participatory, and co-design project to improve youth opioid treatment service experiences in British Columbia.

BACKGROUND: Opioid use is one of the most critical public health issues as highly potent opioids contribute to rising rates of accidental opioid-related toxicity deaths. This crisis has affected people from all age groups, including youth (ages 15-24) who are in a critical developmental period where the stakes of opioid use are especially high. Efforts to reduce the significant harms of opioid use have focused on the expansion of evidence-based treatments, including medications for opioid use disorder (e.g. buprenorphine). While these treatments are unequivocally life saving, recent evidence suggests that they may not align with youths' needs. Accordingly, the 'Improving Treatment Together' (ITT) project has been designed with the aim to improve youths' opioid treatment service experiences and outcomes by co-developing, implementing, and measuring youth-centred opioid use treatment service innovations. This manuscript describes the protocol for this multi-phase project. METHODS: The ITT project follows community-based participatory research (CBPR) and strategically integrates co-design processes throughout its four phases. Upon establishing a project partnership between national, provincial and community-based organizations, Phase 1 follows four core elements of human-centred co-design (empathy, needs identification, ideation, prototyping) in nine separate workshops. These workshops will be held in four diverse communities with youth, caregivers and service providers who have accessed or delivered opioid treatment services. Phase 1 will culminate in the co-production of opioid treatment service innovations to be considered by the project's partners for further co-development, pilot testing, and wider implementation during the remaining phases of the project. Throughout each phase, the project will collect and analyse both qualitative and quantitative research and evaluation data to determine the project's impact. DISCUSSION: This protocol provides a detailed description of the ITT project, with an emphasis on the project's application of co-design and CBPR processes, the planned research and implementation procedures, and the establishment of a unique partnership. To our knowledge, this is one of the first projects to integrate these participatory processes to the design, implementation and measurement of youth-centred opioid treatment services. Embedding these processes throughout each phase of the project will strengthen the relevance and feasibility of the project's service delivery innovations.

Retaining participants in community-based health research: a case example on standardized planning and reporting.

BACKGROUND: Effective strategies for participant retention are critical in health research to ensure validity, generalizability and efficient use of resources. Yet standardized guidelines for planning and reporting on retention efforts have been lacking. As with randomized controlled trial (RCT) and systematic review (SR) protocols, retention protocols are an opportunity to improve transparency and rigor. An RCT being conducted in British Columbia (BC), Canada provides a case example for developing a priori retention frameworks for use in protocol planning and reporting. METHODS: The BC Healthy Connections Project RCT is examining the effectiveness of a nurse home-visiting program in improving child and maternal outcomes compared with existing services. Participants (N = 739) were girls and young women preparing to parent for the first time and experiencing socioeconomic disadvantage. Quantitative data were collected upon trial entry during pregnancy and during five follow-up interviews until participants' children reached age 2 years. A framework was developed to guide retention of this study population throughout the RCT. We reviewed relevant literature and mapped essential retention activities across the study planning, recruitment and maintenance phases. Interview completion rates were tracked. RESULTS: Results from 3302 follow-up interviews (in-person/telephone) conducted over 4 years indicate high completion rates: 90% (n = 667) at 34 weeks gestation; and 91% (n = 676), 85% (n = 626), 80% (n = 594) and 83% (n = 613) at 2, 10, 18 and 24 months postpartum, respectively. Almost all participants (99%, n = 732) provided ongoing consent to access administrative health data. These results provide preliminary data on the success of the framework. CONCLUSIONS: Our retention results are encouraging given that participants were experiencing considerable socioeconomic disadvantage. Standardized retention planning and reporting may therefore be feasible for health research in general, using the framework we have developed. Use of standardized retention protocols should be encouraged in research to promote consistency across diverse studies, as now happens with RCT and SR protocols. Beyond this, successful retention approaches may help inform health policy-makers and practitioners who also need to better reach, engage and retain underserved populations. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01672060. Registered on 24 August 2012.

Posterolateral Versus Posterior Interbody Fusion in Lumbar Degenerative Spondylolisthesis.

STUDY DESIGN: This was a retrospective study of 2 different fusion techniques for the treatment of lumbar degenerative spondylolisthesis. OBJECTIVE: To determine whether posterior lumbar interbody fusion (IF) is associated with improved patient-rated satisfaction and functional outcome when compared with posterolateral fusion (PLF). SUMMARY OF BACKGROUND DATA: IF and PLF are widely used surgical approaches in the treatment of spondylolisthesis. Numerous studies have compared IF and PLF techniques, but inconsistent results, heterogeneous cohorts, and conflicting scientific evidence have made it difficult to reach a consensus on the optimal fusion technique. MATERIALS AND METHODS: A consecutive cohort of 87 patients who had single-level degenerative spondylolisthesis and either PLF or IF were identified from a prospectively maintained database. Short Form-36 physical and mental component score, Oswestry Disability Index, back and leg pain, and complication rate were assessed to 24 months postoperatively. Patient characteristics, clinical outcome, and complications were compared between groups. RESULTS: Of the 87 patients identified, 29 patients (33%) had PLF and 58 patients (67%) had IF. Patient follow-up was ≥85%. Foraminal stenosis (PLF, 13.8% vs. IF, 34.5%; P=0.046) was more common among the participants in the IF group. Intraoperative and postoperative complications were not different between groups (P>0.05). The reoperation rate was 3.4% in the PLF group and 10.3% in the IF group (P=0.416). Patients in the PLF group experienced similar gains in improvement in all outcome measures as those in the IF group (P>0.05). Four patients in the IF group and 3 in the PLF group were lacking evidence of radiographic fusion. These patients did have increased moderate back pain compared with patients demonstrating radiographic fusion but did not differ in any other postoperative outcomes measures. CONCLUSIONS: Type of fusion, IF or PLF, does not affect patient outcome or postoperative complication rates. LEVEL OF EVIDENCE: Level IV.

Does the wait for lumbar degenerative spinal stenosis surgery have a detrimental effect on patient outcomes? A prospective observational study.

BACKGROUND: Waits for elective spine surgery are common in Canada. We examined whether a prolonged wait for surgery for lumbar degenerative spinal stenosis was detrimental to outcome. METHODS: In this prospective observational study, we enrolled 166 consecutive patients referred to our centre for treatment of lumbar degenerative spinal stenosis between 2006 and 2010. Outcome measures were assessed at referral, preoperatively and until 24 months postoperatively. Primary outcome measures were the physical and mental component summary scores of the 36-Item Short-Form Health Survey and the Oswestry Disability Index. Secondary outcome measures included the symptom severity scale of the Zurich Claudication Questionnaire, a numeric rating scale for back and leg pain, and patient satisfaction with treatment. Wait time was defined as the time from referral to surgery. RESULTS: The follow-up rate at 2 years was 85%. The median wait time was 349 days. All health-related quality of life measures deteriorated during the waiting period, but there was no significant correlation between wait time and magnitude of the change in outcome measure. At 6 months postoperatively, the Pearson correlation was significantly positive between wait time and change in disability (r = 0.223), Zurich Claudication Questionnaire score (r = 0.2) and leg pain score (r = 0.221). At 12 months, the correlation remained significant for change in disability (r = 0.205) and was significant for change in mental well-being (r = -0.224). At 12 months, patients with a shorter wait (≤ 12 months) showed greater improvement in mental well-being (mean difference in change [and 95% confidence interval (CI)] 5.7 [1.4-9.9]) and decrease in disability (-9.3 [95% CI -15.1 to -3.6]) and leg pain (-1.6 [95% CI -3.0 to -0.3]). There were no statistically significant differences in outcome or patient satisfaction with treatment between those with shorter and longer waits at 24 months. INTERPRETATION: Patients awaiting spinal surgery experienced deterioration in health-related quality of life irrespective of the length of wait time. However, longer waits were associated with a delay in recovery during the first year after surgery.