Incorporating the Culture-Centered Approach to Support Engagement of Minoritized Youth in Mental Health Communication Research

Youth and families play an indispensable role in health research, given their unique lived experiences and expertise. Aligning research with patients' needs, values, and preferences can significantly enhance its relevance and impact; however, recent research has highlighted various challenges and risks associated with youth and family engagement in health research. These challenges encompass the perils of tokenism, power imbalances and dynamics, questioning the motives behind engagement, and limited accessibility to patient-friendly training for patient partners, as well as inadequate training on patient engagement for researchers and the absence of equitable engagement tools. To address these risks and challenges, different patient engagement models, theories, frameworks, and guiding principles have been developed and adopted; to date, however, their transferability to youth- and family-specific engagement in research has been limited. The objectives of this project are (1) to determine the extent of the literature on the application of patient engagement models, theories, frameworks, and guiding principles in the context of youth-specific research; and (2) to determine how meaningful the key components and constructs of these models, theories, frameworks, and guiding principles are to youth and their family members. This project will use an integrated knowledge translation approach and consists of 2 phases: (1) a scoping review to identify patient engagement models, theories, frameworks and guiding principles in youth research; and (2) a qualitative descriptive study using one-on-one semistructured interviews with youth and family members to understand their conceptualization of meaningful engagement in health research. For phase 1, the following databases were searched: Medline, CINAHL, EMBASE, PsycINFO, and the Cochrane Central Register of Controlled Trials. Literature from 2013 to August 28, 2024, was captured. Primary studies using a patient engagement in research model, theory, or framework, or guiding principles, in youth will be included. The risk of bias of included studies will not be assessed. Extracted data will be quantitatively summarized using numerical counts and qualitatively using content analysis. For phase 2, we will recruit 9 to 17 youth and 9 to 17 family members. Transcripts will be analyzed using an inductive approach outlined by Braun and Clarke. The project has received funding from the Canadian Institutes of Health Research. A 9-member integrated knowledge translation panel consisting of 6 youth and 3 family members has been established. The findings from this study will identify what is currently known about the application of patient engagement models, theories, frameworks, and guiding principles in youth-specific research and the important components of these models, theories, frameworks, and guiding principles from the perspective of youth and their families. These findings will be instrumental to developing a youth- and family-specific engagement in research framework called the UNITE framework and subsequently, a validated measure. PRR1-10.2196/65733.

The youth mental health crisis in the United States has garnered increasing attention, stimulating calls for urgent, evidence-based action. To inform the development of effective solutions, this literature review synthesized current data on youth mental health challenges, youth perspectives on needs and priorities, and existing resources and gaps. Findings reveal significant increases in mental health concerns among youth; disparities in outcomes and access to care, particularly among marginalized populations; and the critical importance of youth engagement and leadership in co-developing solutions. Youth perspectives emphasized the need for mental health education, school- and community-based resources, and arts-based activities as key avenues for fostering social connection and engagement. The review describes three categories of existing resources (community-based services, national nonprofits, and government initiatives), notes the potential value of creative engagement, and identifies gaps and challenges—such as inadequate funding and barriers to access. Findings underscore the urgent need for equity-oriented, culturally responsive approaches, including modalities informed by the arts, to address the youth mental health crisis. Importantly, they indicate the value of co-learning and co-strategizing with youth to promote mental health and flourishing. Despite some limitations, this review offers a timely synthesis of key themes and priorities, providing actionable insights for intervention and research efforts that support the mental health and well-being of youth in the United States.

Patient Engagement in Research and Innovation: A New Framework

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

Youth engagement in child maltreatment research: Gaps, barriers, and approaches

Knowledge about services addressing mental health provided in a rehabilitation setting to youth with physical disabilities is limited. This study aimed to better understand the needs, supports, challenges and potential solutions to optimize rehabilitation services for co-occurring physical and mental health needs, from the perspectives of youth, family members and clinicians. A qualitative descriptive approach using 22 individual interviews with youth, parents and clinicians from five rehabilitation centres in a large Canadian city was employed. Inductive thematic analysis was conducted. Three themes were identified across the three stakeholder groups: (1) available clinical resources for mental health (access to mental health professionals, impact of organizational structures and mandates and continuity of services during transition to adult care); (2) clinician workforce capacity (mental health knowledge, skills and professional development, and therapeutic rapport between clinician and youth); and (3) links and partnerships with key players (improved pathways to access mental health services across programmes and organizations, and family involvement and advocacy). This study provides insights to barriers for mental health care (such as limited mental health knowledge, tools and professional development and access to specialists within the team, restrictive organizational mandates and disruption of services during the transition to adult care), illustrating important aspects to address. Clinicians can be better equipped to address mental health in rehabilitation settings via training opportunities and peer and organizational support in addition to establishing links with external partners. Organizations can also ensure adequate staffing and create pathways within and beyond their institutions to deliver well-coordinated mental health services in a more accessible way.

BackgroundSince 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course.Main textFrom its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential.ConclusionsTo meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.

The need to ensure that research evidence is adopted by health systems and is informed by lived experience expertise has been increasingly recognised in mental health research. In the field of global mental health (GMH), though some progress has been made, the meaningful engagement of key stakeholders in research remains low. This editorial outlines recommendations to support the meaningful engagement of policy makers and people with lived or living experience of mental illness in GMH research. Recommendations include: increasing funding structures that are designed to support meaningful engagement; urging institutions to consider administrative structures that support engagement with lower resourced partners; promoting capacity development opportunities and resources to support researchers to promote meaningful engagement; developing research governance structures that include key stakeholders; and, taking steps to ensure the needs of diverse stakeholders are met through their engagement in research. Examples of good practice from these areas are provided. Though not an exhaustive list of recommendations, this editorial represents a call to the GMH research community to take a deliberate and proactive approach to prioritising meaningful stakeholder engagement in GMH research with the ultimate goal of improving accessible and appropriate mental health care.

Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory-building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) 2020 Statement. Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power-focused (n = 8), process-focused (n = 7), impact-focused (n = 3) and equity-focused (n = 2). Few frameworks (n = 5) were empirically tested in health-related research. The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid-20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth-led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research.

BackgroundInternational reports highlight important impacts of the COVID-19 pandemic on the wellbeing of youth. There is limited knowledge of the experiences and perspectives of youth, and their parents during the COVID-19 pandemic. Examining these experiences can help us identify existing gaps in support and which policy adjustments, resources, and programs are needed to enhance the wellbeing of youth and families in the aftermath of the pandemic.MethodsIn this qualitative descriptive study Canadian youth (11-18year) and their parents (≥ 18year) who participated in a previous national survey looking at public perceptions of the COVID-19 pandemic, were invited to participate. Youth and their parents across all ten Canadian provinces were interviewed separately between June and September 2022. Interview guides were developed and refined iteratively with experts on child development along with youth and parent partners. Responses we coded inductively and a qualitative descriptive analysis was performed. We conducted and reported this study according to the Consolidated Criteria for Reporting Qualitative Research checklist.ResultsWe interviewed 14 youth-parent dyads (28 interviews). Most participants identified as Black, Indigenous, or persons of colour (18/ 28, 64%) and as cis-gender women/girls (15/28, 54%); the median ages were 14 (interquartile range (IQR) 12–16) and 46 (IQR 40–50), for youth and parents respectively. All parents (14/14, 100%) were married. We generated four topic summaries in the data, relevant to youth and family wellbeing throughout the COVID-19 pandemic and in the post-pandemic period: (1) connectedness (a sense of being cared for and supported), (2) motivation and drive (activating and sustaining behaviour toward a goal despite difficulties), (3) mental health (including emotional, psychological, and social wellbeing, develop fulfilling relationships, and adapting to change) and (4) coping mechanisms (strategies used to adjust to stressful events to help maintain overall wellbeing). Findings highlight negative impacts of increased isolation associated with COVID-19 pandemic and their interconnectedness. Results underscore the importance of employing integrated policies that address these complex challenges while informing the tailoring of existing policies, resources, and programs to better support and improve the well-being of youth and families as they navigate the ongoing impacts of the pandemic.ConclusionsCanadian youth and parents in our sample provided detailed descriptions on how the COVID-19 pandemic impacted their wellbeing and the strategies they used to reduce these impacts as much as possible. There is a need for support both at-home and in-school, emphasizing the importance of having a range of programs that address challenges across all facets of youths’ lives.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12889-025-24244-4.

Healthcare research is an essential driver of evidence-based practice, leading to improved service delivery and outcomes. Despite being integral to pharmacy (e.g., in driving safe and effective use of medicines), research engagement is relatively low. This service evaluation study aimed to assess pharmacy professionals' research engagement inclusive of capacity (opportunity and time) and ability (skills and knowledge), and to explore potential barriers and facilitators to research engagement. The study was conducted at a single Mental Health and Community Trust in the UK between February and June in 2024. Data were collected in two phases: phase 1: an online survey assessed current research engagement, and phase 2: virtual individual interviews and a focus group explored in-depth views on research engagement. All practising pharmacists and pharmacy technicians were eligible to participate and were invited via email through a senior pharmacist. Quantitative data were descriptively analysed, and qualitative data were audio-recorded, transcribed and thematically analysed. As a service evaluation, no ethical approval was required. Of the 62 invited pharmacy professionals, 32 responded (52%, n = 20 pharmacists). Around 47% (n = 15) reported prior involvement in research activity/training. Most viewed research as relevant (63%, n = 20) and extremely valuable (72%, n = 23) to practice, and 47% (n = 15) expressed interest in engaging in future research. However, few expressed having confidence across a range of research skills. Seven interviews and one focus group were conducted. Three main themes were identified: research-related views and experience, barriers to research engagement, and strategies to improve research engagement. Overall, positive views on research were reflected. Current research involvement rate is low, as is the confidence in applying research to practice. Several barriers were identified, which require addressing to enhance research activity. Organisations therefore should assess research capacity and ability of their staff to identify encountered barriers to enhance research engagement.

Are adolescents and young adults in substance use disorder treatment as engaged in the research recruitment process as those in general behavioral health treatment?

There is increasing recognition of the value of engaging people with lived and living experience and caregivers in mental health and substance use health research, in roles such as advisors, collaborators, and co-researchers. While tools and resources are required to support teams in conducting authentic engagement, it is unclear what is most needed by academic researchers and those with lived/living experience. This study aimed to identify the tools and resources most needed by academic researchers, people with lived/living experience, and caregivers to support engagement and to co-design a sample of tools. We conducted an online survey with 46 people with lived/living experience and caregivers and 46 academic researchers with engagement experience to identify what tools and resources were available and still needed to support engagement in research. We then held two consultations with 55 of the survey participants (38 lived/living experience and caregiver participants, 17 researcher participants). At the consultations, participants discussed the most highly needed tools to be co-developed. We then conducted a co-design phase of the project. While a wide variety of tools and resources are available to people with lived and living experience and academic researchers, many people do not have access to tools and resources that they would consider useful. Participants gave shape to five potential tools and resources. A Lived/Living Experience and Caregiver Working Group then co-developed three tools-two meeting checklists and a career development tip sheet, which are provided in the Appendices. A wide variety of tools and resources may be helpful to support engagement. Research teams might consider reviewing the tools and resources that they have, sharing them with the broader engagement community, and seeking those potentially useful items that they would like to have but have not yet accessed. Future work is required to collect the tools available and offer them systematically to the engagement community for more effective lived/living experience and caregiver engagement in mental health and substance use health research. All stages of this study were guided by a Lived/Living Experience and Caregiver Working Group, from grant development to manuscript co-authorship.

Policy Recommendations to Promote Integrated Mental Health Care for Children and Youth.

Notes of a traveller