'Just because we're younger doesn't mean our opinions should be any less valued': A qualitative study of youth perspectives on a Youth Advisory Council in a mental healthcare context.

INTRODUCTION: Recognition of the importance of youth engagement in youth mental health and/or addiction (MHA) service design and delivery is increasing. Youth Advisory Councils embedded in MHA organizations represent one strategy that allows youth to be involved in MHA at the individual, organization and systemic levels. This level of involvement can facilitate positive outcomes for both the youth and the organization. As these councils become more common, it is important that organizations are prepared to partner with the participating youth. This study uses a descriptive qualitative approach to understand the motivations and expectations of youth with lived experience with MHA concerns who were beginning to work on a Youth Advisory Council in an MHA setting in the Greater Toronto Area. METHODS: Semistructured interviews were conducted with each youth, ages 16-26, on the advisory council (N = 8) to understand their motivations, expectations and goals coming into the work. Interviews were transcribed verbatim and analysed using a reflexive thematic analysis. RESULTS: Analysis resulted in five overarching themes: providing opportunities for youth learning and growth, platforming youth, empowering youth, embracing youth leadership and promoting youth-driven change. The findings illustrate that these youth came into the Youth Advisory Council motivated to create positive change in the mental health system, take on leadership roles and had high expectations for organizational support. Our analyses provide insight for organizations planning and implementing Youth Advisory Councils in the MHA sector with the goal of best supporting youth in driving positive change across the system. CONCLUSION: Youth want to be provided authentic opportunities for their engagement to make a difference. MHA organizations must embrace youth leadership and move towards listening to youth experience and acting on youth recommendations to enhance service design and implementation to improve access and to better meet the needs of youth utilizing these services. PATIENT OR PUBLIC CONTRIBUTIONS: This study incorporated service users, including youth ages 16-26 with lived experience of MHA concerns who served on the Youth Advisory Council at the Family Navigation Project, Sunnybrook. Youth Advisory Council members contributed to two relevant research activities: (1) youth reviewed the draft interview guide before data collection, and their feedback was prioritized in the final version and (2) youth contributed to knowledge translation through contributing to academic conference presentations.

Transitions in mental health and addiction care for youth and their families: a scoping review of needs, barriers, and facilitators.

INTRODUCTION: Transitional-aged youth (TAY) with mental health and/or addictions (MHA) concerns and their families experience significant challenges finding, accessing, and transitioning through needed MHA care. To develop appropriate supports that assist TAY and their families in navigating MHA care, their experiences of transitions in the MHA care system must be better understood. This scoping review identifies and explores the needs, barriers, and facilitators for TAY and their families when transitioning through MHA care. METHODS: This scoping review commenced with a search of five relevant databases. Three research team members were involved in title, abstract, and full-text scanning and data extraction. Sources focusing on TAY anywhere between the ages of 12-29 years and meeting the study objectives were included. Extractions compiled background and narrative information about the nature and extent of the data. Analysis and synthesis of findings involved numerical description of the general information extracted (e.g., numbers of sources by country) and thematic analysis of narrative information extracted (e.g., family involvement in TAY help-seeking). RESULTS: A total of 5894 sources were identified. Following title and abstract scanning, 1037 sources remained for full-text review. A total of 66 sources were extracted. Findings include background information about extracted sources, in addition to five themes that emerged pertaining to barriers and facilitators to access and transitions through care and the needs and roles of TAY and families in supporting help-seeking and care transitions: holistic supports, proactive preparation, empowering TAY and families, collaborative relationships, and systemic considerations. These five themes demonstrate approaches to care that can ensure TAY and families' needs are met, barriers are mitigated, and facilitators are enhanced. CONCLUSION: This review provides essential contextual information regarding TAY with MHA concerns and their families' needs when seeking care. Such findings lend to an enhanced understanding of how MHA programs can support this population's needs, involve family members as appropriate, reduce the barriers experienced, and work to build upon existing facilitators.

The prevalence of mental health and addiction concerns and factors associated with depression and anxiety during the COVID-19 pandemic in Ontario, Canada: A cross-sectional study.

OBJECTIVE: Higher than expected rates of mental health and/or addiction (MHA) concerns have been documented since the onset of the COVID-19 pandemic. A more up-to-date prevalence of MHA outcomes and the factors associated with the occurrence of MHA concerns remains unclear. This study examined the prevalence of MHA outcomes and factors associated with screening positive for symptoms of depression only, anxiety only, and both depression and anxiety two years into the COVID-19 pandemic in Ontario, Canada. METHOD: Ontario adults ≥18 years of age (n = 5000) reported on the presence of symptoms associated with depression, anxiety, and substance use between January and March 2022. Data were also collected on pandemic-related health variables, including COVID-19 infection fear, changes in socioeconomic status and mental health since pandemic onset, satisfaction with social supports, and MHA service needs. RESULTS: The prevalence of positive screening for depressive or anxiety symptoms only was 8% and 11%, respectively, while 36% screened positive for both. Moderate/high risk levels of substance use were found in 20% of participants for tobacco and 17% for both alcohol and cannabis. Moderate/high risk levels of alcohol use and certain pandemic-related factors (negative change in mental health, unmet MHA service needs) were associated with positive screening for symptoms of depression only, anxiety only, and both depression and anxiety. Satisfaction with social supports was associated with lower likelihoods of being in the depression only and both depression and anxiety groups, and non-White ethnicity was associated with depression only. CONCLUSIONS: There was a continued burden of MHA issues two years into the pandemic. These results underscore the ongoing need for timely and accessible MHA services.

A Qualitative Exploration of Ontario Caregivers' Perspectives of Their Role in Navigating Mental Health and/or Addiction Services for Their Youth.

Many youth experiencing mental health and/or addiction (MHA) concerns rely on their caregivers to find and access services. Considering that caregivers often play a significant role in their youth's treatment trajectory, a descriptive qualitative study was used to explore how caregivers (n = 26) in the Greater Toronto Area perceive their role in navigating MHA care for their youth (ages 13 to 26). The Person-Environment-Occupation model was used to guide the thematic analysis. The findings reveal three main themes (1) the internal experience of caregiving, which describes caregivers' emotions and thought processes; (2) the external factors impacting the caregiver's ability to find and access youth MHA services, which explores systemic and social factors that impact navigation; and (3) the demands of the caregiving role. The discussion highlights the importance of supporting the wellbeing of caregivers as they navigate youth MHA services and can provide useful information for healthcare professionals and policy-makers to increase equitable access to youth MHA services.

Access to mental health and addiction services for youth and their families in Ontario: perspectives of parents, youth, and service providers.

BACKGROUND: Canadian youth (aged 16-24) have the highest rates of mental health and addiction concerns across all age groups and the most unmet health care needs. There are many structural barriers that contribute to the unmet mental health care needs of youth including lack of available and appropriate services, high costs, long wait times, fragmented and siloed services, lack of smooth transition between child and adult services, stigma, racism, and discrimination, as well as lack of culturally appropriate treatments. Levesque et al. (2013) developed a framework to better understand health care access and this framework conceptualizes accessibility across five dimensions: (1) approachability, (2) availability, (3) affordability, (4) appropriateness, and (5) acceptability. The purpose of this study was to explore access to addiction and mental health services for youth in Ontario, Canada from the perspectives of youth, parents, and service providers. METHODS: This qualitative study was a university-community partnership exploring the experiences of youth with mental health concerns and their families from the perspectives of youth, caregivers, and service providers. We conducted semi-structured interviews and used thematic analysis to analyze data. RESULTS: The study involved 25 participants (n = 11 parents, n = 4 youth, n = 10 service providers). We identified six themes related to structural barriers impacting access to youth mental health and services: (1) "The biggest barrier in accessing mental health support is where to look," (2) "There's always going to be a waitlist," (3) "I have to have money to be healthy," (4) "They weren't really listening to my issues," (5) "Having more of a welcoming and inclusive system," and (6) "Health laws aren't doing what they need to do." CONCLUSION: Our study identified five structural barriers that map onto the Levesque et al. healthcare access conceptual framework and a sixth structural barrier that is not adequately captured by this model which focuses on policies, procedures, and laws. The findings have implications for policies and service provisions, and underline the urgent need for a mental health strategy that will increase access to care, improve mental health in youth, decrease burden on parents, and reduce inequities in mental health policies and services.

Youth mental health and/or addiction concerns and service needs during the COVID-19 pandemic: a qualitative exploration of caregiver experiences and perspectives.

The COVID-19 pandemic has undoubtedly had a significant impact on youth mental health and/or addiction concerns and exacerbated pre-existing gaps in access to mental health and/or addiction care. Caregivers can support their youth in seeking and participating in care, however, their experiences in doing so in the pandemic and their perspectives of their youth's care needs are not well-understood. A descriptive qualitative study was conducted to better understand youth's and caregivers' experiences accessing care during the pandemic, from the caregivers' standpoint. Participants completed semi-structured qualitative interviews that focused on experiences seeking and accessing mental health and/or addiction services, with specific questions regarding their experiences accessing services during the pandemic. A total of 46 interviews were included in the thematic analysis of the data. Study findings highlight the impacts of the pandemic on everyday life, on youth mental health and/or addiction needs, on caregiver's experiences seeking and accessing services for their youth, and on service access, including perceptions of virtual care modalities. The discussion highlights the importance of focusing on factors that enable youth's participation in care, to ensure accessibility of appropriate and timely care that meets youth's and families' needs. Also highlighted is the frustration and despair experienced by caregivers seeking critical mental health and addictions supports for their youth during the pandemic, as well as the sense of isolation and of being left behind by the system. Identifying caregiver perspectives of youth mental health and addiction needs and service access during the COVID-19 pandemic provided important insights that can help inform approaches to youth mental health and addictions care during the pandemic and beyond.

Navigating inequities in the delivery of youth mental health care during the COVID-19 pandemic: perspectives of youth, families, and service providers.

OBJECTIVES: There have been concerns about the adverse effects of the COVID-19 pandemic on Canadian youth (aged 16-24) as they have the highest rates of mental health concerns. The objectives of the present study were to explore the experiences of youth with mental health and/or addiction concerns and their families during the pandemic, and to examine how adequate and equitable mental health services have been for youth and families from the perspectives of youth, parents, and service providers. METHODS: Using a descriptive qualitative research design and a university-community partnership, we conducted individual interviews with youth, parents, and service providers. The study involved a total of 25 participants (n=15 service users, n=10 service providers). Among the service users, 11 participants were parents and four were youth. We used thematic analysis to analyze interview data. RESULTS: The thematic analysis identified three themes in the data: (1) youth mental health concerns have increased, whereas supports have decreased, (2) families end up being the treatment team with increased burden, little support, and lack of recognition, and (3) inadequate and inequitable mental health services for youth and families are amplified during the pandemic. CONCLUSION: At a time when mental health needs were higher, the mental health care system offered less support to youth and their families. For a more equitable response to the pandemic, we need an accessible and integrated mental health care system that shows a commitment to addressing social determinants and reducing health disparities and inequities in access to mental health services.

RéSUMé: OBJECTIFS: Les effets indésirables de la pandémie de COVID-19 sur les jeunes (16 à 24 ans) du Canada suscitent des inquiétudes, car ce sont les jeunes qui présentent les taux les plus élevés de problèmes de santé mentale. Nous avons voulu explorer les expériences de jeunes aux prises avec des problèmes de santé mentale et/ou de toxicomanie et de leurs familles durant la pandémie, et à déterminer si les services de santé mentale sont suffisants et équitables pour les jeunes et leurs familles du point de vue de jeunes, de parents et de prestataires de services. MéTHODE: À l'aide d'un plan de recherche qualitative descriptive et d'un partenariat entre les milieux universitaire et associatif, nous avons mené des entretiens individuels avec des jeunes, des parents et des prestataires de services. Vingt-cinq personnes ont participé à l'étude (n = 15 utilisateurs et utilisatrices de services, n = 10 prestataires de services). Parmi les utilisateurs et utilisatrices de services, 11 étaient des parents et 4 étaient des jeunes. Nous avons eu recours à l'analyse thématique pour analyser les données des entretiens. RéSULTATS: Trois thèmes se sont dégagés de l'analyse thématique des données : 1) les problèmes de santé mentale des jeunes augmentent, tandis que les mesures d'aide diminuent, 2) ce sont les familles qui finissent par constituer l'équipe de traitement, ce qui représente un fardeau accru, peu de soutien et un manque de reconnaissance, et 3) l'insuffisance et l'iniquité des services de santé mentale offerts aux jeunes et à leurs familles ont été amplifiées durant la pandémie. CONCLUSION: Alors que les besoins en santé mentale étaient plus élevés, le système de soins de santé mentale a offert moins de soutien aux jeunes et à leurs familles. Pour une intervention plus équitable face à la pandémie, nous avons besoin d'un système de soins de santé mentale accessible et intégré, manifestement engagé à aborder les déterminants sociaux et à réduire les disparités d'état de santé et les iniquités d'accès aux services de santé mentale.

Navigation for youth mental health and addictions: protocol for a realist review and synthesis of approaches and practices (The NavMAP standards project).

INTRODUCTION: Mental health and/or addiction (MHA) concerns affect approximately 1.2 million children and youth in Canada, yet less than 20% receive appropriate treatment for these concerns. Youth who do not receive appropriate support may disengage from care and may experience lasting MHA issues. Families of these youth also support them in finding and accessing care. Thus, system supports are needed to help youth and their families find and equitably access appropriate care. Navigation is an innovation in MHA care, providing patient-centred support and care planning that helps individuals and families overcome barriers to care. Despite the increasing availability of navigation services for youth with MHA concerns, practices and models vary, and no single source has synthesised evidence regarding approaches and outcomes for this population into comprehensive standards. METHODS AND ANALYSIS: The proposed research will bring together evidence in youth MHA navigation, to establish this important system support as a factor that can enhance the integration and continuity of care for these youth. Our team, which includes researchers, administrators, clinical leads, an MHA navigator and youth and caregivers with lived experience, will be involved in all project stages. Realist Review and Synthesis methodology will be used, the stages of which include: defining scope, searching for evidence, appraising studies and extracting data, synthesising evidence and developing conclusions, and disseminating findings. ETHICS AND DISSEMINATION: Ethics approval is not required, as the study involves review of existing data. Dissemination plans include scientific publications and conferences and online products for stakeholders and the general public.

Cross-sectional survey of the Mental health and Addictions effects, Service impacts and Care needs of children, youth and families during the COVID-19 pandemic: the COVID-19 MASC study protocol.

INTRODUCTION: The COVID-19 pandemic has had a tremendous negative effect on the mental health and well-being of Canadians. These mental health challenges are especially acute among vulnerable Canadian populations. People living in Canada's most populous province, Ontario, have spent prolonged time in lockdown and under public health measures and there is a gap in our understanding of how this has impacted the mental health system. This protocol describes the Mental health and Addictions Service and Care Study that will use a repeated cross-sectional design to examine the effects, impacts, and needs of Ontario adults during the COVID-19 pandemic. METHODS AND ANALYSIS: A cross-sectional survey of Ontario adults 18 years or older, representative of the provincial population based on age, gender and location was conducted using Delvinia's AskingCanadians panel from January to March 2022. Study sample was 2500 in phases 1 and 2, and 5000 in phase 3. The Alcohol, Smoking and Substance Involvement Screening Test and Diagnostic Statistical Manual-5 Self-Rated Level 1 Cross-Cutting Symptom Measure-Adult were used to assess for substance and mental health concerns. Participants were asked about mental health and addiction service-seeking and/or accessing prior to and during the pandemic. Analyses to be conducted include: predictors of service access (ie, sociodemographics, mental illness and/or addiction, and social supports) before and during the pandemic, and χ2 tests and logistic regressions to analyse for significant associations between variables and within subgroups. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Sunnybrook Research Ethics Board. Dissemination plans include scientific publications and conferences, and online products for stakeholders and the general public.

Funding sources for Canadian biorepositories: the role of user fees and strategies to help fill the gap.

Biorepositories, the coordinating hubs for the collection and annotation of biospecimens, are under increasing financial pressure and are challenged to remain sustainable. To gain a better understanding of the current funding situation for Canadian biorepositories and the relative contributions they receive from different funding sources, the Canadian Tumour Repository Network (CTRNet) conducted two surveys. The first survey targeted CTRNet's six main nodes to ascertain the relative funding sources and levels of user fees. The second survey was targeted to a broader range of biorepositories (n=45) to ascertain business practices in application of user fees. The results show that >70% of Canadian biorepositories apply user fees and that the majority apply differential fees to different user groups (academic vs. industry, local vs. international). However, user fees typically comprise only 6% of overall operational budgets. We conclude that while strategies to drive up user fee levels need to be implemented, it is essential for the many stakeholders in the biomedical health research sector to consider this issue in order to ensure the ongoing availability of research biospecimens and data that are standardized, high-quality, and that are therefore capable of meeting research needs.

Generating a comprehensive set of standard operating procedures for a biorepository network-The CTRNet experience.

Despite the integral role of biorepositories in fueling translational research and the advancement of medicine, there are significant gaps in harmonization of biobanking practices, resulting in variable biospecimen collection, storage, and processing. This significantly impacts accurate downstream analysis and, in particular, creates a problem for biorepository networks or consortia. The Canadian Tumour Repository Network (CTRNet; www.ctrnet.ca ) is a consortium of Canadian tumor biorepositories that aims to enhance biobanking capacity and quality through standardization. To minimize the issue of variable biobanking practices throughout its network, CTRNet has developed and maintained a comprehensive set of 45 standard operating procedures (SOPs). There were four key elements to the CTRNet SOP development process: 1) an SOP development team was formed from members across CTRNet to co-produce each SOP; 2) a principal author was appointed with responsibility for overall coordination of the SOP development process; 3) the CTRNet Management Committee (composed of principal investigators for each member biorepository) reviewed/revised each SOP completed by the development team; and 4) external expert reviewers provided feedback and recommendations on each SOP. Once final Management Committee approval was obtained, the ratified SOP was published on the CTRNet website for public access. Since the SOPs were first published on the CTRNet website (June 2008), there have been approximately 15,000 downloads of one or more CTRNet SOPs/Policies by users from over 60 countries. In accordance with biobanking best practices, CTRNet performs an exhaustive review of its SOPs at set intervals, to coincide with each granting cycle. The last revision was completed in May 2012.