Primus Inter PARES: First among equals-practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES.

BACKGROUND: This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures. MAIN BODY: The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them. CONCLUSION: This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.

Together with a graduate student, co-supervisors, and 15 young people from across Canada who have experience with mental health challenges, this paper looks at how research involving young adults as patient research partners can be better. We feel that the types of research that are supposed to include us are often not clear enough and make it hard to join, especially those with unique life situations and health issues. So, in this paper, we suggest a few new ways of doing things where everyone is treated equally. We call it Primus Inter PARES: First Among Equals. This means young people are just as important as anyone else in research.We want to change the old ways that do not consider our unique experiences as young people with mental health issues. We came up with new ideas like 'Equitable Dialogue' and 'Trust Architecture' to ensure everyone understands the research and feels that they can trust the process. We also suggest ways to make sure different voices are heard and that everyone has a fair chance to contribute.We do not just offer a one-size-fits-all solution; instead, we share many ways to improve research to help young adults who want to be part of research and for the researchers who want to work with us. Our paper is about making research fair and including everyone's point of view. We hope this will make the research better for everyone, especially for young adults.

Neighborhood material versus social deprivation in Canada: different patterns of associations with child and adolescent mental health problems.

PURPOSE: In a nationwide study, we aimed to study the association of neighborhood deprivation with child and adolescent mental health problems. METHODS: We used data from the Canadian Health Survey on Children and Youth (N = 47,871; age range: 1-17 years) and linked these to Neighborhood Material and Social Deprivation data calculated using Canada's Census of Population. Using a series of logistic regressions, we studied the association between living in deprived areas and mental health problems among children and youth. We used bootstrap replicate weights for all analyses and adjusted them for individual sociodemographic characteristics. RESULTS: In the adjusted model, the parent-reported developmental disorder was associated with more socially deprived neighborhoods (OR 1.29; 95% CI 1.07, 1.57 for most vs. least deprived quintiles). However, mental health service need or use was associated with living in less materially deprived areas (OR 0.78; 95% CI 0.63, 0.96 for most vs. least deprived quintiles). Among mental health problems reported by the youth (12-17 years old), poor/fair general mental health, alcohol drinking, and cannabis use were associated with neighborhood social deprivation in the adjusted models. In contrast, poor/fair general mental health, suicide ideas, alcohol drinking, and cannabis use were all negatively associated with higher materially deprived quintiles. CONCLUSION: Our study provides further support for the existing evidence on the association between neighborhood deprivation, particularly social deprivation, and the mental health of children and adolescents. The findings can help public health policymakers and service providers better understand and address children's mental health needs in their neighborhoods.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Prevalence of Mental Health Disorders Among Individuals Experiencing Homelessness: A Systematic Review and Meta-Analysis.

Importance: Several factors may place people with mental health disorders, including substance use disorders, at increased risk of experiencing homelessness and experiencing homelessness may also increase the risk of developing mental health disorders. Meta-analyses examining the prevalence of mental health disorders among people experiencing homelessness globally are lacking. Objective: To determine the current and lifetime prevalence of mental health disorders among people experiencing homelessness and identify associated factors. Data Sources: A systematic search of electronic databases (PubMed, MEDLINE, PsycInfo, Embase, Cochrane, CINAHL, and AMED) was conducted from inception to May 1, 2021. Study Selection: Studies investigating the prevalence of mental health disorders among people experiencing homelessness aged 18 years and older were included. Data Extraction and Synthesis: Data extraction was completed using standardized forms in Covidence. All extracted data were reviewed for accuracy by consensus between 2 independent reviewers. Random-effects meta-analysis was used to estimate the prevalence (with 95% CIs) of mental health disorders in people experiencing homelessness. Subgroup analyses were performed by sex, study year, age group, region, risk of bias, and measurement method. Meta-regression was conducted to examine the association between mental health disorders and age, risk of bias, and study year. Main Outcomes and Measures: Current and lifetime prevalence of mental health disorders among people experiencing homelessness. Results: A total of 7729 citations were retrieved, with 291 undergoing full-text review and 85 included in the final review (N = 48 414 participants, 11 154 [23%] female and 37 260 [77%] male). The current prevalence of mental health disorders among people experiencing homelessness was 67% (95% CI, 55-77), and the lifetime prevalence was 77% (95% CI, 61-88). Male individuals exhibited a significantly higher lifetime prevalence of mental health disorders (86%; 95% CI, 74-92) compared to female individuals (69%; 95% CI, 48-84). The prevalence of several specific disorders were estimated, including any substance use disorder (44%), antisocial personality disorder (26%), major depression (19%), schizophrenia (7%), and bipolar disorder (8%). Conclusions and Relevance: The findings demonstrate that most people experiencing homelessness have mental health disorders, with higher prevalences than those observed in general community samples. Specific interventions are needed to support the mental health needs of this population, including close coordination of mental health, social, and housing services and policies to support people experiencing homelessness with mental disorders.

Estimating additional health and social costs in eating disorder care for young people during the COVID-19 pandemic: implications for surveillance and system transformation.

BACKGROUND: The impact of the COVID-19 pandemic on young people with eating disorders (EDs) and their families was profound, with surging rates of hospitalizations and referrals reported internationally. This paper provides an account of the additional health and social costs of ED care for young people living in Canada incurred during the COVID-19 pandemic, drawing attention to the available data to inform these estimates while noting gaps in data capacities to account for a full view of the ED system of care. METHODS: Three methodologies were used to capture costs: (1) provincial administrative data holdings available at the Canadian Institute of Health Information (CIHI) were used by Deloitte Access Economics to conduct analyses on costs related to hospitalizations, emergency room visits, outpatient visits with physicians and loss of well-being from being on a waitlist. These were examined across three fiscal years (April 1 to March 31, 2019-2022) to compare costs from one year before to two years after the onset of the pandemic, (2) data collected on support-based community ED organizations and, (3) costs identified by young people, caregivers and health care professionals. RESULTS: Estimates of additional health care costs and social costs arising from ED care waitlists were estimated to have increased by 21% across the two years after the onset of the pandemic and is likely to represent an underestimate of costs. Costs related to some standard ED care services (e.g. day treatment programs) and support-based community ED organizations that saw a 118% increase in services during this time, are some examples of costs not captured in the current cost estimate. CONCLUSIONS: This paper provides a first account of the additional health and social ED care costs associated with the pandemic, which indicate at minimum, a 21% increase. The results invite discussion for more investments in ED services for young people in Canada, as it is unclear if needs are expected to remain elevated. We suggest a call for a national surveillance strategy to improve data holdings to aid in managing services and informing policy. A robust strategy could open the door for much-needed, data-informed, system transformation efforts that can improve ED care for youth, families and clinicians.

The impact of the COVID-19 pandemic on young people with eating disorders and their families was profound, incurring substantial costs to youth, families, health professionals, eating disorder systems of care, and society. This study looks to draw on available data in Canada to estimate the additional health and social costs experienced during the pandemic. Using available national data holdings on eating disorder health system use, survey and discussion groups with individuals who provided or received eating disorder care during the pandemic, and data from support-based community eating disorder organizations, we attempted to capture the fulsomeness of these costs and demonstrate gaps that are likely leading to an incomplete picture. Available data across Canada on hospitalizations, emergency room visits, outpatient visits and loss of wellbeing while on a waitlist were looked at across three fiscal years (April 2019 to March 2022). Overall, an average increase of 21% of additional health care and social costs was seen across the two years after the onset of the pandemic, although this is considered an underestimation. Additional costs such as those for other standard eating disorder treatment options (e.g. day treatment programs) were not captured in these estimates. Additionally, costs related to services received through support-based community eating disorder organizations that saw a 118% increase in services during the pandemic, and private services (e.g. psychologist, dietitian) are some further examples of costs not captured in the current cost estimate. The results of this study highlight that needs and costs related to ED care rose during the pandemic and provides the first account of by how much. Given data limitations, there is a need to revisit national surveillance strategies for eating disorders to help increase accuracy of these estimates and aid in managing services and informing policies related to eating disorder care.

A Systematic Review and Meta-Analysis: Child and Adolescent Healthcare Utilization for Eating Disorders During the COVID-19 Pandemic.

OBJECTIVE: To conduct a meta-analysis documenting healthcare service utilization rates for pediatric (age <19 years) eating disorders during compared to before the COVID-19 pandemic. METHOD: PsycINFO, MEDLINE, Embase, and Web of Science Core Collection were searched for studies published up to May 19, 2023. Studies with pediatric visits to primary care, inpatient, outpatient, and emergency department for eating disorders before and during the pandemic were included. This preregistered review (PROSPERO CRD42023413392) was reported using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data were analyzed with random-effects meta-analyses. RESULTS: A total of 52 studies reporting >148,000 child and adolescent eating disorder-related visits to >300 health settings across 15 countries were included (mean age, 12.7 years; SD = 4.1 years; 87% girls). There was strong evidence of an increase in healthcare use for eating disorders during the pandemic (rate ratio [RR] = 1.54, 95% CI = 1.38-1.71). Moderator analysis revealed larger rate increases among girls (RR = 1.48, 95% CI = 1.28-1.71) compared to boys (RR = 1.24, 95% CI = 1.06-1.45) and for adolescents (age ≥12 to 19 years) (RR = 1.53, 95% CI = 1.29-1.81) compared to children (RR = 0.87, 95% CI = 0.53-1.43). Moderator analysis demonstrated strong evidence of increased use of emergency department (RR = 1.70, 95% CI = 1.48-1.97), inpatient (RR = 1.56, 95% CI = 1.33-1.84), and outpatient (RR = 1.62, 95% CI = 1.35-1.95) services, as well as strong evidence of increased rates of anorexia nervosa (RR = 1.48, 95% CI = 1.24-1.75). CONCLUSION: Healthcare use for pediatric eating disorders increased substantially during the COVID-19 pandemic, particularly among girls and adolescents. It is important to continue to monitor whether changes in healthcare use associated with acute pediatric mental distress are sustained beyond the COVID-19 pandemic. STUDY PREREGISTRATION INFORMATION: Risk factors for eating disorders for youth during the COVID-19 pandemic; https://www.crd.york.ac.uk/; CRD42023413392. DIVERSITY & INCLUSION STATEMENT: One or more of the authors of this paper self-identifies as a member of one or more historically underrepresented racial and/or ethnic groups in science. One or more of the authors of this paper self-identifies as living with a disability. We actively worked to promote sex and gender balance in our author group. We actively worked to promote inclusion of historically underrepresented racial and/or ethnic groups in science in our author group. While citing references scientifically relevant for this work, we also actively worked to promote sex and gender balance in our reference list. While citing references scientifically relevant for this work, we also actively worked to promote inclusion of historically underrepresented racial and/or ethnic groups in science in our reference list. The author list of this paper includes contributors from the location and/or community where the research was conducted who participated in the data collection, design, analysis, and/or interpretation of the work. One or more of the authors of this paper self-identifies as a member of one or more historically underrepresented sexual and/or gender groups in science.

The financial and social impacts of the COVID-19 pandemic on youth with eating disorders, their families, clinicians and the mental health system: a mixed methods cost analysis.

BACKGROUND: The onset of the COVID-19 pandemic has had an adverse impact on children, youth, and families with eating disorders (EDs). The COVID-19 pandemic exacerbated pre-existing personal and financial costs to youth, caregivers, and health professionals accessing or delivering ED services. The objectives of this mixed methods study were to (1) understand the indirect, direct medical and non-medical costs reported by youth, caregivers, and clinicians; (2) understand how the COVID-19 pandemic may have impacted these costs, and (3) explore implications of these costs with regards to barriers and resources to inform future decisions for the ED system of care. METHODS: Youth (aged 16-25 years) with lived/living experience, primary caregivers, clinicians, and decision-makers were recruited with support from various partners across Canada to complete group specific surveys. A total of 117 participants responded to the survey. From those respondents, 21 individuals volunteered to further participate in either a discussion group or individual interview to provide additional insights on costs. RESULTS: Youth and primary caregivers reported costs relating to private services, transportation and impacts of not attending school or work. Additionally, primary caregivers reported the top direct medical cost being special food or nutritional supplements (82.8%). In discussion groups, youth and caregivers elaborated further on the challenges with long waitlists and cancelled services, impact on siblings and effect on family dynamics. Clinicians and decision-makers reported increased work expectations (64.3%) and fear/isolation due to COVID-19 in the workplace (58.9%). Through discussion groups, clinicians expanded further on the toll these expectations took on their personal life. Approximately 1 in 3 health professionals reported contemplating leaving their position in 1-2 years, with greater than 60% of this group stating this is directly related to working during the pandemic. CONCLUSIONS: Findings demonstrate the need for increased support for youth and caregivers when accessing ED services both during crisis and non-crisis times. Additionally, attention must be given to acknowledging the experience of health professionals to support better retention and resource management as they continue to navigate challenges in the health care system.

The COVID-19 pandemic has had significant impacts for children, youth and families with eating disorders (EDs) and those who care for them. The objective of this study was to understand the impacts on financial and personal costs to youth, caregivers and clinicians when either accessing or delivering ED services during the pandemic. This study consisted of an online survey and discussion groups with youth (16-25 years old) with lived experience of an ED, primary caregivers, clinicians and decision-makers delivering ED services to understand the costs they experienced. Although many reported costs were financial, including direct medical costs (i.e. private therapy) and direct non-medical costs (i.e. transportation, accommodation costs), there were also significant personal costs to individuals and their families. Healthcare professionals also reported extensive challenges with resources and increased work expectations due to the pandemic context. Acknowledging the costs experienced by young people, families and healthcare professionals during the pandemic allows for the discussion of how we can better support those accessing or delivering ED services in times of crisis and non-crisis.

Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures.

BACKGROUND: Mental illness among emerging adults is often difficult to ameliorate due to fluctuating symptoms and heterogeneity. Recently, innovative approaches have been developed to improve mental health care for emerging adults, including (1) implementing patient-reported outcome measures (PROMs) to assess illness severity and inform stratified care to assign emerging adults to a treatment modality commensurate with their level of impairment and (2) implementing a rapid learning health system in which data are continuously collected and analyzed to generate new insights, which are then translated to clinical practice, including collaboration among clients, health care providers, and researchers to co-design and coevaluate assessment and treatment strategies. OBJECTIVE: The aim of the study is to determine the feasibility and acceptability of implementing a rapid learning health system to enable a measurement-based, stratified care treatment strategy for emerging adults. METHODS: This study takes place at a specialty clinic serving emerging adults (age 16-24 years) in Calgary, Canada, and involves extensive collaboration among researchers, providers, and youth. The study design includes six phases: (1) developing a transdiagnostic platform for PROMs, (2) designing an initial stratified care model, (3) combining the implementation of PROMs with stratified care, (4) evaluating outcomes and disseminating results, (5) modification of stratified care based on data derived from PROMs, and (6) spread and scale to new sites. Qualitative and quantitative feedback will be collected from health care providers and youth throughout the implementation process. These data will be analyzed at regular intervals and used to modify the way future services are delivered. The RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework is used to organize and evaluate implementation according to 3 key objectives: improving treatment selection, reducing average wait time and treatment duration, and increasing the value of services. RESULTS: This project was funded through a program grant running from 2021 to 2026. Ethics approval for this study was received in February 2023. Presently, we have developed a system of PROMs and organized clinical services into strata of care. We will soon begin using PROMs to assign clients to a stratum of care and using feedback from youth and clinicians to understand how to improve experiences and outcomes. CONCLUSIONS: This study has key implications for researchers and clinicians looking to understand how to customize emerging adult mental health services to improve the quality of care and satisfaction with care. This study has significant implications for mental health care systems as part of a movement toward value-based health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/51667.

Developing recommendations to improve identification, prevention, and response to suicide thoughts and behaviours among post-secondary students: A mixed methods study.

Objective: This study aimed to generate recommendations regarding how to identify, prevent and respond to suicide thoughts and behaviors among post-secondary students. Methods: A convergent mixed-methods design with Nominal Groups Technique (NGT) was used. Post-secondary and high-school students and their caregivers generated and ranked recommendations. A Codebook Thematic Analysis approach guided analysis of the NGT-discussions and extended understanding of recommendations. Results: 88 individuals participated in 21 panels. Five key recommendations were identified: (1) increase student and staff education regarding suicide identification, prevention, and awareness of existing supports; (2) enhance rapid access to supports for those experiencing a crisis; (3) improve institutional academic supports for students following crisis; (4) reduce stigma; (5) improve communication regarding on-campus suicide. Common themes included perceived impact of attitudes, institutional barriers, and peer-support on suicide thoughts and behaviors. Conclusions: These recommendations can inform the development of student-centred interventions for improving mental health supports.

Associations between negative COVID-19 experiences and symptoms of anxiety and depression: a study based on a representative Canadian national sample. / Associations entre les expériences négatives liées à la COVID-19 et les symptômes d'anxiété et de dépression : étude fondée sur un échantillon national canadien représentatif.

INTRODUCTION: Amid the widespread impact of the COVID-19 pandemic, a notable increase in symptoms of anxiety and depression has become a pressing concern. This study examined the prevalence of anxiety and depression symptoms in Canada from September to December 2020, assessing demographic and socioeconomic influences, as well as the potential role of COVID-19 diagnoses and related negative experiences. METHODS: Data were drawn from the Survey on COVID-19 and Mental Health by Statistics Canada, which used a two-stage sample design to gather responses from 14 689 adults across ten provinces and three territorial capitals, excluding less than 2% of the population. Data were collected through self-administered electronic questionnaires or phone interviews. Analytical techniques, such as frequencies, cross-tabulation and logistic regression, were used to assess the prevalence of anxiety and depression symptoms, the demographic characteristics of Canadians with increased anxiety and depression symptoms and the association of these symptoms with COVID-19 diagnoses and negative experiences during the pandemic. RESULTS: The study found that 14.62% (95% CI: 13.72%-15.51%) of respondents exhibited symptoms of depression, while 12.89% (95% CI: 12.04%-13.74%) reported anxiety symptoms. No clear differences in symptom prevalence were observed between those infected by COVID-19, or those close to someone infected, compared to those without these experiences. However, there were strong associations between traditional risk factors for depressive and anxiety symptoms and negative experiences during the pandemic, such as physical health problems, loneliness and personal relationship challenges in the household. CONCLUSION: This study provides insight into the relationship between COVID-19 and Canadians' mental health, demonstrating an increased prevalence of anxiety and depression symptoms associated with COVID-19-related adversities and common prepandemic determinants of these symptoms. The findings suggest that mental health during the pandemic was primarily shaped by traditional determinants of depression and anxiety symptoms and also by negative experiences during the pandemic.

Patient Perceptions of Microbiome-Based Therapies as Novel Treatments for Mood Disorders: A Mixed Methods Study: Perceptions des patients sur les thérapies basées sur le microbiome pour les troubles de l'humeur : une étude à méthodes mixtes.

OBJECTIVE: Medications are critical for treating major depressive disorder (MDD) and bipolar disorder (BD). Unfortunately, 30% to 40% of individuals do not respond well to current pharmacotherapy. Given the compelling growing body of research on the gut-brain axis, this study aims to assess patient perspectives regarding microbiome-based therapies (MBT) such as probiotics, prebiotics, dietary changes, or fecal microbiota transplantation (FMT) in the management of MDD and BD. METHODS: This single-centred observational study used quantitative and qualitative assessments to examine patient perceptions of MBT. Participants diagnosed with MDD or BD completed an anonymous questionnaire obtaining demographics, prior medication history, and symptom burden. Self-assessment questionnaires specific to each diagnosis were also used: Quick Inventory of Depressive Symptomatology Self-Report (QIDS-SR), Altman Self-Rating Mania Scale (ASRM), and General Anxiety Disorder Questionnaire (GAD-7). A logistic regression model analysed the association of MBT acceptance with disorder type, QIDS-SR, and GAD-7 scores. A bootstrap method assessed the proportion of MBT acceptance. The qualitative assessment consisted of 30-minute interviews to elicit perceptions and attitudes towards MBT. RESULTS: The qualitative assessment achieved information power with n = 20. Results from the 63-item MBT questionnaire (n = 43) showed probiotics (37.2%) as the top choice, followed by FMT (32.6%), dietary change (25.6%), and prebiotics (4.6%). A majority of participants (72.1%) expressed willingness to try MBT for their mood disorder, however, logistic regression analysis did not identify statistically significant predictors for MBT acceptance among disorder type, QIDS-SR, and GAD-7. CONCLUSION: There is an increased focus on the gut microbiota's role in mood disorders' etiology and treatment. Promising research and patient interest underscore the necessity for exploring and educating on patient perspectives and the factors influencing attitudes towards MBT.

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study.

BACKGROUND: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. OBJECTIVE: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). METHODS: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). RESULTS: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. CONCLUSIONS: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

Examining clinicians' perceptions and experiences working with diverse families in family-based treatment: Common adaptations and considerations for treatment engagement.

OBJECTIVE: Family-Based Treatment (FBT) is the leading manualized treatment for adolescent eating disorders; however, there is limited research on the adaptation of FBT for diverse families (i.e., families belonging to identity groups subject to systemic barriers and prejudices). The purpose of this qualitative study was to address: (1) adaptations made to the FBT model (if any) by clinicians working with diverse youth and families; (2) the barriers/facilitators of maintaining adherence (fidelity) to the model for these families; and, (3) the barriers/facilitators to access and engagement in FBT for diverse families. METHOD: Forty-one FBT clinicians were recruited globally using purposive and snowball sampling, and listservs from eating disorder networks. Clinicians participated in individual interviews or focus groups, discussing their experiences delivering and adapting FBT for diverse families. Qualitative data was transcribed verbatim and analyzed using directed content analysis. RESULTS: Some participants reported making adaptations to every phase of the FBT model, while others did not, when working with diverse families. In Phase 1, participants cited adapting the family meal, length/number of sessions provided, and addressed systemic barriers. In Phase 2, participants adapted the length of the phase and rate/level of independence given back to the adolescent. In Phase 3, participants increased or decreased the number of sessions, or eliminated this phase to address barriers to engagement in FBT. DISCUSSION: This is the first study to qualitatively examine clinicians' experiences of implementing FBT with diverse families. Results may inform future FBT planning, clinician training, clinical decision-making tools, and opportunities for modifications to the foundational model. PUBLIC SIGNIFICANCE: This qualitative study examined clinicians' perceptions and experiences implementing FBT with diverse families, specifically what adaptations (if any) were made to the foundational model, and the barriers and facilitators to adhering to and engaging in the model. Results show that some participants reported making adaptations to every phase of FBT, while others did not, with diverse families. Findings may inform future treatment planning, clinician training, clinical decision-making tools, and potential modifications to FBT.

A randomized waitlist control trial of the Make the Connection® online program for caregivers of infants and young children: Study protocol.

Background: A positive child-caregiver relationship is one of the strongest determinants of child health and development, yet many caregivers report challenges in establishing a positive relationship with their child. For over 20 years, Make the Connection® (MTC), an evidence-based parenting program, has been delivered in-person by child-caring professionals to over 120,000 parents to improve positive parenting behaviours and attitudes. Recently, MTC has been adapted into a 'direct to caregiver' online platform to increase scalability and accessibility. The purpose of this study is to evaluate the effectiveness of the online modality of MTC in increasing parenting knowledge, attitudes, and the perceived relationship with their child, and to understand barriers and facilitators to its access. Methods: Two hundred caregivers with children aged 0-3 years old will be recruited through Public Health agencies in Ontario, Canada. Participants will be randomly placed in the intervention or waitlist control group. Both groups will complete a battery of questionnaires at study enrolment and 8 weeks later. The intervention group will receive the MTC online program during the 8-week period, while the waitlist group will receive the program after an 8-week wait. The study questionnaires will address demographic information, caregivers' relational attitudes towards their infant, self-competence in their caregiver role, depression, and caregiver stress, as well as caregivers' and infants' emotion regulation. Discussion: Results from this study will add critical knowledge to the development, scaling, and roll out of the MTC online program, thus increasing its capacity to reach a greater number of families. Trial registration: The study was registered with ClinicalTrials.gov on 15 March 2023 (NCT05770414).

A study protocol for implementing Canadian Practice Guidelines for Treating Children and Adolescents with Eating Disorders.

BACKGROUND: Eating disorders have one of the highest mortality rates among psychiatric illnesses. Timely intervention is crucial for effective treatment, as eating disorders tend to be chronic and difficult to manage if left untreated. Clinical practice guidelines play a vital role in improving healthcare delivery, aiming to minimize variations in care and bridge the gap between research and practice. However, research indicates an active guideline implementation approach is crucial to effective uptake. METHODS: Mixed methods will be used to inform and evaluate our guideline implementation approach. Semi-structured focus groups will be conducted in each of the eight provinces in Canada. Each focus group will comprise 8-10 key stakeholders, including clinicians, program administrators, and individuals with lived experience or caregivers. Qualitative data will be analyzed using conventional content analysis and the constant comparison technique and the results will be used to inform our implementation strategy. The study will then evaluate the effectiveness of our implementation approach through pre- and post-surveys, comparing changes in awareness, use, and impact of the guidelines in various stakeholder groups. DISCUSSION: Through a multifaceted implementation strategy, involving the co-creation of educational materials, tailored training, and context-specific strategies, this study intends to enhance guideline uptake and promote adherence to evidence-based practices. Our study will also contribute valuable information on the impact of our implementation strategies.

Implementation of an Electronic Mental Health Platform for Youth and Young Adults in a School Context Across Alberta, Canada: Thematic Analysis of the Perspectives of Stakeholders.

BACKGROUND: Youth, aged 15 to 24 years, are more likely to experience mental health (MH) or substance use issues than other age groups. This is a critical period for intervention because MH disorders, if left unattended, may become chronic and serious and negatively affect many aspects of a young person's life. Even among those who are treated, poor outcomes will still occur for a percentage of youth. Electronic MH (eMH) tools have been implemented in traditional MH settings to reach youth requiring assistance with MH and substance use issues. However, the utility of eMH tools in school settings has yet to be investigated. OBJECTIVE: The objective of this study was to gain an understanding of the perspectives of key school staff stakeholders regarding barriers and facilitators to the implementation of the Innowell eMH platform in secondary schools across the province of Alberta, Canada. METHODS: Guided by a qualitative descriptive approach, focus groups were conducted to elicit stakeholder perspectives on the perceived implementation challenges and opportunities of embedding the Innowell eMH platform in secondary school MH services. In total, 8 focus groups were conducted with 52 key school staff stakeholders. RESULTS: Themes related to barriers and facilitators to youth and school MH care professional (MHCP) capacity in implementing and using eMH tools were identified. With respect to youth capacity barriers, the following themes were inductively generated: (1) concerns about some students not being suitable for eMH services, (2) minors requiring consent from parents or caregivers to use eMH services as well as confidentiality and privacy concerns, and (3) limited access to technology and internet service among youth. A second theme related to school MHCP barriers to implementation, which included (1) feeling stretched with high caseloads and change fatigue, (2) concerns with risk and liability, and (3) unmasking MH issues in the face of limited resources. In contrast to the barriers to youth and MHCP capacity, many facilitators to implementation were discussed. Youth capacity facilitators included (1) the potential for youth to be empowered using eMH tools, (2) the platform fostering therapeutic relationships with school personnel, and (3) enhancing access to needed services and resources. MHCP capacity facilitators to implementation were (1) system transformation through flexibility and problem-solving, (2) opportunities for collaboration with youth and MHCPs and across different systems, and (3) an opportunity for the continuity of services. CONCLUSIONS: Our findings highlight nuanced school MHCP perspectives that demonstrate critical youth and MHCP capacity concerns, with consideration for organizational factors that may impede or enhance the implementation processes for embedding eMH in a school context. The barriers and facilitators to implementation provide future researchers and decision makers with challenges and opportunities that could be addressed in the preimplementation phase.

Acceptability and utility of digital well-being and mental health support for university students: A pilot study.

AIM: To assess the acceptability and explore the utility of a novel digital platform designed as a student-facing well-being and mental health support. METHODS: An adapted version of i-spero® was piloted as a student-facing well-being support and as part of routine university-based mental health care. In both pathways, student participants completed baseline demographics and brief validated measures of well-being and mental health. Weekly measures of anxiety (GAD-7) and depression (PHQ-9) and a Week 8 Experience Survey were also scheduled. Integrated mixed methods analysis was used to assess acceptability and explore the utility of these platforms. RESULTS: Students in the well-being (n = 120) and care pathways (n = 121) were mostly female and between 19 and 22 years of age. Baseline screen positive rates for anxiety and depression were high in both the well-being (68%) and care pathways (80%). There was a substantial drop in adherence over Week 1 (50% well-being; 40% care) followed by minor attrition up to Week 8. Anxiety and depressive symptom levels improved from baseline in students who dropped out after Week 1 (p ≤ .06). The student experience was that i-spero® improved their emotional self-awareness, understanding of progress in care, and knowledge about when to seek help. Most students agreed (>75%) that i-spero® should form part of regular university student wellness support. CONCLUSIONS: Digital well-being and mental health support seems acceptable to university students; however, engagement and persistence are areas for further development. Such digital tools could make a positive contribution to an evidence-based stepped approach to student well-being and mental health support.

A qualitative study on the implementation of a transdiagnostic cognitive behavioral therapy for children in a child welfare residential treatment program.

BACKGROUND: Youth with severe emotional or behavioral issues who are involved with child welfare authorities are sometimes placed in intensive care services in a residential treatment program. Evidence-based psychotherapies are often used in residential treatments, but there is very little research on how to adapt psychotherapy for residential treatment. OBJECTIVE: To describe the implementation of a transdiagnostic cognitive behavioral therapy (the Unified Protocol for Transdiagnostic Treatment of Emotional Disorders in Children) in a residential treatment program for children. PARTICIPANTS AND SETTING: Staff (n = 20) at a residential facility in Calgary, Canada. METHODS: A combination of qualitative interviews and focus groups were conducted before and after therapy to identify barriers and facilitators to implementation. Data were analyzed and reported using the Consolidated Framework for Implementation Research and the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies. RESULTS: Modifications were made to the program including creating inclusive language, integrating relevant content targeting pediatric irritability, delivering sessions online for caregivers, and using additional staff to support youth to learn and practice the application of the content and behavioral interventions. Key barriers to implementation of the Unified Protocol included staff turnover and the difficulty of sustaining a critical mass of knowledge surrounding the Unified Protocol. The major facilitators to implementation were the perceived quality of the program and advantages of the program to children and their caregivers. CONCLUSIONS: This study supports the feasibility and acceptability of providing transdiagnostic cognitive behavioral therapies for children in residential treatment and provides a template for how to implement evidence-based practice in residential treatment.

Association between childhood adversities and premature and potentially avoidable mortality in adulthood: a population-based study.

BACKGROUND: The association of childhood adversities with mortality has rarely been explored, and even less studied is the question of whether any excess mortality may be potentially preventable. This study examined the association between specific childhood adversities and premature and potentially avoidable mortality (PPAM) in adulthood in a representative sample of the general population. Also, we examined whether the associations were potentially mediated by various adult socioeconomic, psychosocial, and behavioral factors. METHODS: The study used data from the National Population Health Survey (NPHS-1994) linked to the Canadian Vital Statistics Database (CVSD 1994-2014) available from Statistics Canada. The NPHS interview retrospectively assessed childhood exposure to prolonged hospitalization, parental divorce, prolonged parental unemployment, prolonged trauma, parental problematic substance use, physical abuse, and being sent away from home for doing something wrong. An existing definition of PPAM, consisting of causes of death considered preventable or treatable before age 75, was used. Competing cause survival models were used to examine the associations of specific childhood adversities with PPAM in adulthood among respondents aged 18 to 74 years (rounded n = 11,035). RESULTS: During the 20-year follow-up, 5.4% of the sample died prematurely of a cause that was considered potentially avoidable. Childhood adversities had a differential effect on mortality. Physical abuse (age-adjusted sub-hazard ratio; SHR 1.44; 95% CI 1.03, 2.00) and being sent away from home (age-adjusted SHR 2.26; 95% CI 1.43,3.57) were significantly associated with PPAM. The associations were attenuated when adjusted for adulthood factors, namely smoking, poor perceived health, depression, low perceived social support, and low income, consistent with possible mediating effects. Other adversities under study were not associated with PPAM. CONCLUSION: The findings imply that the psychological sequelae of childhood physical abuse and being sent away from home and subsequent uptake of adverse health behavior may lead to increased risk of potentially avoidable mortality. The potential mediators identified offer directions for future research to perform causal mediation analyses with suitable data and identify interventions aimed at preventing premature mortality due to potentially avoidable causes. Other forms of adversities, mostly related to household dysfunction, may not be determinants of the distal health outcome of mortality.