Lived experience and family engagement in psychiatry research: A scoping review of reviews.

BACKGROUND: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. OBJECTIVE: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. METHOD: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full-text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. RESULTS: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. DISCUSSION: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. PATIENT OR PUBLIC CONTRIBUTION: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review.

"I Think Peer Support Helps to Demystify People Who Have Mental Health Issues and Helps to Remove That Stigma": Exploring the Defining Characteristics and Related Challenges of Youth Peer Support Through Participatory Research.

Despite the emerging body of literature on the benefits of youth peer support, there is also evidence that peer support can have unintended negative impacts on peers themselves. It is important to explore what aspects of the peer role contribute to these difficulties in order to mitigate risks. This paper uses a participatory approach to examine the unique attributes of youth peer practice and the related challenges. We conducted semi-structured interviews and focus groups with both peer and non-peer staff from a community-based youth mental health program that provides peer support services (N = 29). Thematic analyses were completed using QSR NVivo. Analyses capture the defining features and related challenges of the peer support role (self-disclosure, boundaries, role confusion and dynamic recovery), and risk factors that affect peers (stigma, exposure to harm and burnout). This paper contributes to the literature on peer support as well as youth participatory evaluation. The findings will be useful to support the development of improved organizational contexts for peer practice and more effective peer support programming.

What do justice-involved youth want from integrated youth services? A conjoint analysis.

Background: Many youth in the criminal justice system are affected by mental health and/or substance use (MHS) challenges, yet only a minority receive treatment. One way to increase access to MHS care is integrated youth services (IYS), a community-based model of service delivery where youth can access evidence-based treatment for their MHS problems and other wellbeing needs, in one location. However, it is unknown what IYS services justice-involved youth prioritize. Objective: This study explored what components of IYS justice-involved youth deem to be the most important in meeting their MHS service needs, in comparison with non-justice-involved youth, by conducting a secondary analysis of data gathered from a larger Ontario-wide study. Method: Using a conjoint analysis, n = 55 justice-involved youth, and n = 188 non-justice-involved youth, completed thirteen choice tasks representing different combinations of IYS. Results: Both justice-involved and non-justice-involved youth exhibited preferences for a broad range of core health services, including mental health services, substance misuse counseling, medication management, and physical or sexual health services. They also preferred a broad range of additional support services, in addition to fast access to care in a community setting that specializes in mental health services, with the incorporation of e-health services. Justice-involved youth prioritized working with a trained peer support worker to learn life skills and help them with the services they need. The importance of youth playing a leadership role in making decisions within IYS organizations was also a distinguishing preference among justice-involved youth. Conclusions: Tailoring IYS to meet the service preferences of justice-involved youth may enhance service utilization, potentially leading to better outcomes for justice-involved youth and their communities.

Contexte: Nombre de jeunes dans le système de justice pénale sont affectés de problèmes de santé mentale et/ou d'utilisation de substances (SMS), pourtant seule une minorité reçoit un traitement. Une façon d'élargir l'accès aux soins SMS consiste dans les services intégrés à la jeunesse (SIJ), un modèle communautaire de prestation de service dans lequel les jeunes peuvent avoir accès à un traitement fondé sur les données probantes pour leurs problèmes de SMS et autres besoins de bien-être en un seul lieu. Cependant, on ne sait pas à quels SIJ les jeunes impliqués dans la justice accordent la priorité. Objectif: La présente étude a exploré quelles composantes des SIJ sont jugées les plus importantes par les jeunes impliqués dans la justice pour répondre à leurs besoins de service de SMS, en comparaison avec les jeunes non impliqués dans la justice, au moyen d'une analyse secondaire des données recueillies d'une étude plus vaste à l'échelle de l'Ontario. Méthode: À l'aide d'une analyse conjointe, n = 55 jeunes impliqués dans la justice, et n = 188 jeunes non impliqués dans la justice ont répondu à treize tâches à choix représentant différentes combinaisons de SIJ. Résultats: Tant les jeunes impliqués dans la justice que les jeunes non impliqués ont affiché des préférences pour une large gamme de services de santé de base, notamment les services de santé mentale, la consultation pour abus de substances, la gestion des médicaments, et les services de santé physique ou sexuelle. Ils préféraient également une large gamme de services de soutien additionnels, en plus d'un accès rapide aux soins dans un milieu communautaire qui se spécialise en services de santé mentale, avec l'incorporation de services de santé en ligne. Les jeunes impliqués dans la justice accordaient la priorité au travail avec un pair aidant formé pour apprendre les compétences de la vie et les aider dans les services dont ils ont besoin. L'importance pour les jeunes de jouer un rôle de leadership dans la prise de décisions au sein des organisations de SIJ était également une préférence distincte chez les jeunes impliqués dans la justice. Conclusions: Adapter les SIJ pour répondre aux préférences de services des jeunes impliqués dans la justice peut améliorer l'utilisation des services, et mener potentiellement à de meilleurs résultats pour les jeunes impliqués dans la justice et leurs communautés.

Medical assistance in dying for mental illness: a complex intervention requiring a correspondingly complex evaluation approach.

Medical assistance in dying for mental illness as a sole underlying medical condition (MAiD MI-SUMC) is a controversial and complex policy in terms of psychosocial and ethical medical practice implications. We discuss the status of MAiD MI-SUMC in Canada and argue for the use of the UK Medical Research Council's framework on complex interventions in programme evaluations of MAiD MI-SUMC. It is imperative to carefully and rigorously evaluate the implementation of MAiD MI-SUMC to ensure an understanding of the multiple facets of implementation in contexts permeated by unique social, economic, cultural and historical influences, with a correspondingly diverse array of outcomes. This requires a complexity-informed programme evaluation focused on context-dependent mechanisms and stakeholder experiences, including patients, service providers and other people affected by the policy. It is also important to consider the economic impact on health and social welfare systems. Such evaluations can provide the data needed to guide evidence-informed decision-making that can contribute to safer implementation and refinement of MAiD MI-SUMC.

An Integrated Care Pathway for depression in adolescents: protocol for a Type 1 Hybrid Effectiveness-implementation, Non-randomized, Cluster Controlled Trial.

INTRODUCTION: Our group developed an Integrated Care Pathway to facilitate the delivery of evidence-based care for adolescents experiencing depression called CARIBOU-2 (Care for Adolescents who Receive Information 'Bout OUtcomes, 2nd iteration). The core pathway components are assessment, psychoeducation, psychotherapy options, medication options, caregiver support, measurement-based care team reviews and graduation. We aim to test the clinical and implementation effectiveness of the CARIBOU-2 pathway relative to treatment-as-usual (TAU) in community mental health settings. METHODS AND ANALYSIS: We will use a Type 1 Hybrid Effectiveness-Implementation, Non-randomized Cluster Controlled Trial Design. Primary participants will be adolescents (planned n = 300, aged 13-18 years) with depressive symptoms, presenting to one of six community mental health agencies. All sites will begin in the TAU condition and transition to the CARIBOU-2 intervention after enrolling 25 adolescents. The primary clinical outcome is the rate of change of depressive symptoms from baseline to the 24-week endpoint using the Childhood Depression Rating Scale-Revised (CDRS-R). Generalized mixed effects modelling will be conducted to compare this outcome between intervention types. Our primary hypothesis is that there will be a greater rate of reduction in depressive symptoms in the group receiving the CARIBOU-2 intervention relative to TAU over 24 weeks as per the CDRS-R. Implementation outcomes will also be examined, including clinician fidelity to the pathway and its components, and cost-effectiveness. ETHICS AND DISSEMINATION: Research ethics board approvals have been obtained. Should our results support our hypotheses, systematic implementation of the CARIBOU-2 intervention in other community mental health agencies would be indicated.

Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities.

BACKGROUND: Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. KNOWLEDGE MOBILIZATION EVENTS: After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles. We presented the scoping review findings, then held discussions to solicit feedback and encourage the sharing of perspectives. ATTENDEE PERSPECTIVES: Through small and large group discussion activities, we found that our scoping review findings resonated with the attendees' personal experiences with engagement in mental health and substance use research. Among the gaps highlighted in the discussions, the two that were most emphasized were the critical importance of improving diversity in engagement work in mental health and substance use, and the importance of addressing gaps around communication, relationships, rapport, and power dynamics in engagement spaces. CONCLUSIONS: Diversity, communication, relationships, and power dynamics emerge as key areas of work needed in the near future to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need by a range of partners this research engagement sphere. We call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees.

Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves research, but it can be challenging to do it right. We reviewed the scientific research on engaging people with lived experience in this area of research. Next, we held two community events to share our findings and brainstorm on next steps. A total of 55 people attended. They were people with lived experience, family members, research staff, research trainees, and scientists, as well as people coming from multiple perspectives. Through small and large group discussions, attendees talked about the findings and the next steps. As a whole, attendees recognized the importance of this area of work and largely agreed with the findings we presented. Among all of the material discussed, attendees emphasized 1) the importance of improving diversity in PWLE engagement, and 2) the importance of improving communication, relationships, rapport, and power dynamics. These two key issues are considered among the most important areas of work going forward to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need and call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees.

Integrated Youth Service Preferences of Caregivers of Justice-Involved Youth: A Discrete Choice Conjoint Experiment.

Introduction: Mental health and/or substance use (MHS) challenges affect approximately 95% of youth in the criminal justice system, with only three in ten justice-involved youth receiving treatment. Caregivers of justice-involved youth have identified fragmented care as a barrier to youth accessing MHS services. One suggested solution to this problem is the implementation of integrated youth services (IYS). However, it is unknown which IYS components caregivers of justice-involved youth prioritize. Methods: Using a discrete choice conjoint experiment (DCE), n = 46 caregivers of justice-involved youth, and n = 204 caregivers of non-justice-involved, completed thirteen choice tasks representing different combinations of IYS. Results: Both caregiver groups exhibited preferences for involvement and access to information regarding their youth's treatment, and fast access to broad range of core health and additional services, in a community setting, with the incorporation of e-health services. Caregivers of justice-involved youth showed a unique preference for involvement in family counseling with their youth. The incorporation of this service feature may help to engage caregivers of justice-involved youth in their youths' MHS treatment 3-fold. Conclusion: Data gleaned from this analysis provides an understanding of what components of IYS models may help to engage caregivers of justice-involved youth.

Medical Assistance in Dying for Mental Illness as a Sole Underlying Medical Condition and Its Relationship to Suicide: A Qualitative Lived Experience-Engaged Study: Aide Médicale à Mourir Pour Maladie Mentale Comme Seule Condition Médicale Sous-Jacente et Son Lien Avec le Suicide: Une Etude Qualitative Engagée Dans l'Expérience Vécue.

OBJECTIVE: This lived experience-engaged study aims to understand patient and family perspectives on the relationship between suicidality and medical assistance in dying when the sole underlying medical condition is mental illness (MAiD MI-SUMC). METHOD: Thirty individuals with mental illness (age M = 41.8 years, SD = 14.2) and 25 family members (age M = 47.5 years, SD = 16.0) participated in qualitative interviews examining perspectives on MAiD MI-SUMC and its relationship with suicide. Audio recordings were transcribed and analysed using reflexive thematic analysis. People with lived experience were engaged in the research process as team members. RESULTS: Four main themes were developed, which were consistent across individuals with mental illness and family members: (a) deciding to die is an individual choice to end the ongoing intolerable suffering of people with mental illness; (b) MAiD MI-SUMC is the same as suicide because the end result is death, although suicide can be more impulsive; (c) MAiD MI-SUMC is a humane, dignified, safe, nonstigmatized alternative to suicide; and (4) suicidality should be considered when MAiD MI-SUMC is requested, but suicidality's role is multifaceted given its diverse manifestations. CONCLUSION: For patient-oriented mental health policy and treatment, it is critical that the voices of people with lived experience be heard on the issue of MAiD MI-SUMC. Given the important intersections between MAiD MI-SUMC and suicidality and the context of suicide prevention, the role that suicidality should play in MAiD MI-SUMC is multifaceted. Future research and policy development are required to ensure that patient and family perspectives guide the development and implementation of MAiD MI-SUMC policy and practice.

The Toronto Adolescent and Youth Cohort Study: Study Design and Early Data Related to Psychosis Spectrum Symptoms, Functioning, and Suicidality.

BACKGROUND: Psychosis spectrum symptoms (PSSs) occur in a sizable percentage of youth and are associated with poorer cognitive performance, poorer functioning, and suicidality (i.e., suicidal thoughts and behaviors). PSSs may occur more frequently in youths already experiencing another mental illness, but the antecedents are not well known. The Toronto Adolescent and Youth (TAY) Cohort Study aims to characterize developmental trajectories in youths with mental illness and understand associations with PSSs, functioning, and suicidality. METHODS: The TAY Cohort Study is a longitudinal cohort study that aims to assess 1500 youths (age 11-24 years) presenting to tertiary care. In this article, we describe the extensive diagnostic and clinical characterization of psychopathology, substance use, functioning, suicidality, and health service utilization in these youths, with follow-up every 6 months over 5 years, including early baseline data. RESULTS: A total of 417 participants were enrolled between May 4, 2021, and February 2, 2023. Participants met diagnostic criteria for an average of 3.5 psychiatric diagnoses, most frequently anxiety and depressive disorders. Forty-nine percent of participants met a pre-established threshold for PSSs and exhibited higher rates of functional impairment, internalizing and externalizing symptoms, and suicidality than participants without PSSs. CONCLUSIONS: Initial findings from the TAY Cohort Study demonstrate the feasibility of extensive clinical phenotyping in youths who are seeking help for mental health problems. PSS prevalence is much higher than in community-based studies. Our early data support the critical need to better understand longitudinal trajectories of clinical youth cohorts in relation to psychosis risk, functioning, and suicidality.

Neuroimaging and Biosample Collection in the Toronto Adolescent and Youth Cohort Study: Rationale, Methods, and Early Data.

BACKGROUND: The Toronto Adolescent and Youth (TAY) Cohort Study will characterize the neurobiological trajectories of psychosis spectrum symptoms, functioning, and suicidality (i.e., suicidal thoughts and behaviors) in youth seeking mental health care. Here, we present the neuroimaging and biosample component of the protocol. We also present feasibility and quality control metrics for the baseline sample collected thus far. METHODS: The current study includes youths (ages 11-24 years) who were referred to child and youth mental health services within a large tertiary care center in Toronto, Ontario, Canada, with target recruitment of 1500 participants. Participants were offered the opportunity to provide any or all of the following: 1) 1-hour magnetic resonance imaging (MRI) scan (electroencephalography if ineligible for or declined MRI), 2) blood sample for genomic and proteomic data (or saliva if blood collection was declined or not feasible) and urine sample, and 3) heart rate recording to assess respiratory sinus arrhythmia. RESULTS: Of the first 417 participants who consented to participate between May 4, 2021, and February 2, 2023, 412 agreed to participate in the imaging and biosample protocol. Of these, 334 completed imaging, 341 provided a biosample, 338 completed respiratory sinus arrhythmia, and 316 completed all 3. Following quality control, data usability was high (MRI: T1-weighted 99%, diffusion-weighted imaging 99%, arterial spin labeling 90%, resting-state functional MRI 95%, task functional MRI 90%; electroencephalography: 83%; respiratory sinus arrhythmia: 99%). CONCLUSIONS: The high consent rates, good completion rates, and high data usability reported here demonstrate the feasibility of collecting and using brain imaging and biosamples in a large clinical cohort of youths seeking mental health care.

Cognition and Educational Achievement in the Toronto Adolescent and Youth Cohort Study: Rationale, Methods, and Early Data.

BACKGROUND: Both cognition and educational achievement in youths are linked to psychosis risk. One major aim of the Toronto Adolescent and Youth (TAY) Cohort Study is to characterize how cognitive and educational achievement trajectories inform the course of psychosis spectrum symptoms (PSSs), functioning, and suicidality. Here, we describe the protocol for the cognitive and educational data and early baseline data. METHODS: The cognitive assessment design is consistent with youth population cohort studies, including the NIH Toolbox, Rey Auditory Verbal Learning Test, Wechsler Matrix Reasoning Task, and Little Man Task. Participants complete an educational achievement questionnaire, and report cards are requested. Completion rates, descriptive data, and differences across PSS status are reported for the first participants (N = 417) ages 11 to 24 years, who were recruited between May 4, 2021, and February 2, 2023. RESULTS: Nearly 84% of the sample completed cognitive testing, and 88.2% completed the educational questionnaire, whereas report cards were collected for only 40.3%. Modifications to workflows were implemented to improve data collection. Participants who met criteria for PSSs demonstrated lower performance than those who did not on numerous key cognitive indices (p < .05) and also had more academic/educational problems. CONCLUSIONS: Following youths longitudinally enabled trajectory mapping and prediction based on cognitive and educational performance in relation to PSSs in treatment-seeking youths. Youths with PSSs had lower cognitive performance and worse educational outcomes than youths without PSSs. Results show the feasibility of collecting data on cognitive and educational outcomes in a cohort of youths seeking treatment related to mental illness and substance use.

Experiences of gender-diverse youth during the COVID-19 pandemic in Canada: A longitudinal qualitative study.

BACKGROUND: Recent studies have suggested that the COVID-19 pandemic has increased existing health challenges experienced by transgender (trans) and non-binary people. Additionally, COVID-19 has also negatively impacted youth mental health. However, the impact of the COVID-19 pandemic with respect to the intersection of youth and trans and non-binary populations is currently not well established. The present longitudinal qualitative study aimed to examine the evolving challenges experienced by trans and non-binary youth during the COVID-19 pandemic. METHODS: Gender-diverse youth, defined as participants who did not identify as cisgender in April 2020, were invited to participate from among the participant pool of a COVID-19 cohort study in Canada. Qualitative interviews were conducted in August 2020, January 2021, and August 2021, during the first year and a half of the COVID-19 pandemic. Qualitative themes were identified based on reflexive thematic analysis and plot-line narrative inquiry. RESULTS: Ten participants aged 18 to 28 were included in the present analysis, yielding 29 transcripts. We identified themes of (1) losses of connection to gender-diverse communities, (2) changes in gender identity, affirmation, and self-reflection, (3) a dual burden of trans and non-binary specific health and service access challenges as well as COVID-19 pandemic related health challenges, and (4) virtually rebuilding gender-diverse communities during the COVID-19 pandemic. CONCLUSIONS: Gender-diverse youth may experience unique challenges during the COVID-19 pandemic. The losses with gender-diverse communities may further isolate queer people from access to healthcare, housing, and employment. Public health policy targeted at gender-diverse youth may consider addressing "upstream" disparities in healthcare and housing in order to support the rebuilding of queer and gender-diverse communities by gender-diverse people.

Swept under the carpet: a qualitative study of patient perspectives on Long COVID, treatments, services, and mental health.

BACKGROUND: A constellation of often disabling long-term physical symptoms enduring after an acute SARS-COV-2 infection is commonly referred to as Long COVID. Since Long COVID is a new clinical entity, research is required to clarify treatment needs and experiences of individuals affected. This qualitative descriptive study aimed to provide insight into Long COVID treatment and service experiences and preferences of individuals experiencing Long COVID and the intersections with mental health. METHODS: The study was conducted out of a tertiary care mental health hospital, with online recruitment from the community across Canada. A total of 47 individuals (average age = 44.9) participated in one of 11 focus groups between June and December 2022. Five focus groups were conducted with participants who had pre-existing mental health concerns prior to contracting SARS-CoV-2, and six were with people with Long COVID but without pre-existing mental health concerns. A semi-structured interview guide asked about service experiences and service preferences, including mental health and well-being services. Discussions were recorded, transcribed, and analyzed using codebook thematic analysis. RESULTS: When accessing services for Long COVID, patients experienced: (1) systemic barriers to accessing care, and (2) challenges navigating the unknowns of Long COVID, leading to (3) negative impacts on patient emotional well-being and recovery. Participants called for improvements in Long COVID care, with a focus on: (1) developing Long COVID-specific knowledge and services, (2) enhancing support for financial well-being, daily living, and building a Long COVID community, and (3) improving awareness and the public representation of Long COVID. CONCLUSIONS: Substantial treatment barriers generate considerable burden for individuals living with Long COVID. There is a pressing need to improve treatment, social supports, and the social representation of Long COVID to create integrated, accessible, responsive, and ongoing support systems.

"You can create a little bit more closure in your own story when someone really connects with it": exploring how involvement in youth peer support work can promote peer development.

BACKGROUND: Peer support relates to the provision of social/emotional support that is delivered by individuals with lived experience of a key characteristic that is shared with clients. Although the main objective of peer support is to enhance client outcomes, through their involvement, peers derive a secondary benefit to their own personal development. This study applied a hybrid participatory-realist approach to identify what works, for whom, why and in what circumstances within the LOFT Transitional Age Youth (TAY) peer services. This paper presents findings related to the processes and possible benefits of being involved in peer work for the peer supporters themselves. METHODS: Semi-structured interviews and focus groups were completed with peer and non-peer staff from the TAY program. A qualitative analysis applied a retroductive approach that involved both inductive and deductive processes to identify relevant themes. RESULTS: Four program theories and one over-arching context were identified through the analyses. Program theories were related to: (1) enhancing self-efficacy and self-determination through peer involvement in program design, (2) increasing peer resiliency and self-care through effective supervision, (3) developing professional skills and opportunities for career advancement through peer practice and (4) overcoming stigma through the recognition of the value of peer lived experience. CONCLUSIONS: Peer practice holds significant potential for the enhancement of the mental health system as well as to increase our understanding of stigma. The findings from this study offer critical new insights into the dynamics of how professional peer practice can support the personal development of youth peers and how programming can be intentionally designed to enhance these benefits.

The lived experience of long COVID: A qualitative study of mental health, quality of life, and coping.

The majority of people who contract COVID-19 experience a short period of symptomatic infection. However, symptoms persist for months or years following initial exposure to the virus in some cases. This has been described as long COVID. Little is known about the lived experience of this condition, as it has only recently emerged. This study aimed to explore the experiences of mental health, quality of life, and coping among people living with long COVID. A sample of 47 adults with lived experience participated in web-based focus groups. Separate focus groups were held for 24 individuals with pre-existing mental health conditions and 23 individuals without pre-existing mental health conditions. Data were analyzed using a codebook thematic analysis approach. Five themes were identified as integral to the long COVID experience: The Emotional Landscape of Long COVID, New Limits to Daily Functioning, Grief and Loss of Former Identity, Long COVID-related Stigmatization, and Learning to Cope with Persisting Symptoms. These findings illustrate the immense impact of long COVID on mental health and quality of life. Minimal differences were found between those with and those without pre-existing mental health conditions, as both groups were substantially impacted by the condition. Attention to the perspectives of people with lived experience of long COVID is necessary to inform future directions for research and clinical practice.

Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition.

Medical assistance in dying (MAiD) was introduced into Canadian federal legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is currently excluded from eligibility; such exclusion is scheduled to expire on March 17, 2024. Irremediability, capacity, quality of life, autonomy, family involvement, and healthcare system constraints have been debated intensively. Recent studies have not explored the views of family members of persons with mental illness on MAiD MI-SUMC. This study aimed to fill this knowledge gap. Twenty-five Ontario residents who had a loved one with mental illness participated. A persona-scenario exercise was designed to explore participants' views on MAiD MI-SUMC in hypothetical situations. Reflexive thematic analysis was used to analyze the data. A lived experience-advisory panel was engaged throughout the study. Seven themes were developed: Witnessing suffering; A road with barriers and limitations; Societal barriers; The unknowns of mental illness; Individual choices: the life or death that a person wants; MAiD MI-SUMC as an acceptable choice when suffering cannot be relieved with available treatments and supports; and The emotional outcome. Participants constructed their views based on their experience of supporting a loved one with mental illness. MAiD MI-SUMC was perceived as a multifaceted issue, whose acceptability and potential introduction required a concurrent exploration and discussion of the challenges arising due to limitations of the healthcare system, the opportunities and limits to family involvement, and the value of patient autonomy.

Associations over the COVID-19 pandemic period and the mental health and substance use of youth not in employment, education or training in Ontario, Canada: a longitudinal, cohort study.

BACKGROUND: The economic shutdown and school closures associated with the COVID-19 pandemic have negatively influenced many young people's educational and training opportunities, leading to an increase in youth not in education, employment, or training (NEET) globally and in Canada. NEET youth have a greater vulnerability to mental health and substance use problems, compared to their counterparts who are in school and/or employed. There is limited evidence on the association between COVID-19 and NEET youth. The objectives of this exploratory study included investigating: longitudinal associations between the COVID-19 pandemic and the mental health and substance use (MHSU) of NEET youth; and MHSU among subgroups of NEET and non-NEET youth. METHODS: 618 youth (14-28 years old) participated in this longitudinal, cohort study. Youth were recruited from four pre-existing studies at the Centre for Addiction and Mental Health. Data on MHSU were collected across 11 time points during the COVID-19 pandemic (April 2020-August 2022). MHSU were measured using the CoRonavIruS Health Impact Survey Youth Self-Report, the Global Appraisal of Individual Needs Short Screener, and the PTSD Checklist for DSM-5. Linear Mixed Models and Generalized Estimating Equations were used to analyze associations of NEET status and time on mental health and substance use. Exploratory analyses were conducted to investigate interactions between sociodemographic characteristics and NEET status and time. RESULTS: At baseline, NEET youth were significantly more likely to screen positive for an internalizing disorder compared to non-NEET youth (OR = 1.92; 95%CI=[1.26-2.91] p = 0.002). No significant differences were found between youth with, and without, NEET in MHSU symptoms across the study time frame. Youth who had significantly higher odds of screening positive for an internalizing disorder included younger youth (OR = 1.06, 95%CI=[1.00-1.11]); youth who identify as Trans, non-binary or gender diverse (OR = 8.33, 95%CI=[4.17-16.17]); and those living in urban areas (OR = 1.35, 95%CI=[1.03-1.76]), compared to their counterparts. Youth who identify as White had significantly higher odds of screening positive for substance use problems (OR = 2.38, 95%CI=[1.72-3.23]) compared to racialized youth. CONCLUSIONS: Our findings indicate that sociodemographic factors such as age, gender identity, ethnicity and area of residence impacted youth MHSU symptoms over the course of the study and during the pandemic. Overall, NEET status was not consistently associated with MHSU symptoms over and above these factors. The study contributes to evidence on MHSU symptoms of NEET youth.

Early alcohol onset: clinical and demographic characteristics of service-seeking youth.

Background: Alcohol use in early adolescence is associated with increased health concerns and other negative consequences. Given the needs of this vulnerable population, it is critical to understand their risk factors and clinical characteristics. Objective: This cross-sectional study explores the clinical and demographic characteristics of service-seeking youth with and without early alcohol use onset. Method: 655 youth seeking services at a Canadian substance use and concurrent disorder service participated. Evaluations of mental health, substance use, demographic characteristics, and other risk factors were collected and compared among youth who reported an age of onset for alcohol use of under 14 years of age versus 14 years or older. Results: Youth who started using alcohol before age 14 were significantly more likely to report mental health difficulties, indicate use of a greater number of substances, and report experiencing more crime and violence problems. They also reported exposure to more types of trauma. Notably, more problems with crime and violence were significantly, and uniquely associated with an earlier age of alcohol use onset in a multivariate model. Conclusion: The present study identifies unique and clinically significant differences among youth who initiated alcohol use in early adolescence compared to later in adolescence. Stronger integrations between mental health and substance use services for youth with early alcohol use should be considered, given the vulnerability and concurrent difficulties they tend to face.

Contexte: La consommation d'alcool au début de l'adolescence est associée à des problèmes de santé accrus et à d'autres conséquences négatives. Étant donné les besoins de cette population vulnérable, il est essentiel de comprendre leurs facteurs de risque et leurs caractéristiques cliniques. Objectif: La présente étude transversale explore ces caractéristiques cliniques et démographiques des jeunes à la recherche de services avec et sans consommation précoce d'alcool. Méthode: Six cent cinquante-cinq jeunes à la recherche de services ont participé à un service canadien d'utilisation de substances et de trouble concurrent. Des évaluations de la santé mentale, de l'utilisation de substances, de caractéristiques démographiques et d'autres facteurs de risque ont été recueillies et comparées parmi les jeunes qui déclaraient un âge de début de consommation d'alcool de moins de 14 ans contre 14 ans et plus. Résultats: Les jeunes qui commençaient à consommer de l'alcool avant l'âge de 14 ans étaient significativement plus susceptibles de déclarer des difficultés de santé mentale, d'indiquer l'utilisation d'un plus grand nombre de substances et de déclarer éprouver plus de problèmes de crime et de violence. Ils ont aussi déclaré une exposition à plus de types de trauma. Notamment, plus de problèmes de crime et de violence étaient significativement et uniquement associés à un âge précoce du début de consommation d'alcool dans un modèle multivarié. Conclusion: La présente étude identifie des différences uniques et cliniquement significatives chez les jeunes qui ont commencé la consommation d'alcool au début de l'adolescence comparé à plus tard dans l'adolescence. Des intégrations plus fortes entre les services de santé mentale et d'utilisation de substances pour les jeunes ayant une consommation d'alcool précoce devraient être envisagées étant donné la vulnérabilité et les difficultés concurrentes qu'ils ont tendance à éprouver.