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BACKGROUND: 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. METHODS: 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 February 2023. 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. RESULTS: 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. CONCLUSIONS: 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. PATIENT OR PUBLIC CONTRIBUTION: 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.
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Modelos Teóricos , Humanos , AdolescenteRESUMO
BACKGROUND: Marketing has a significant impact on the normalisation of gambling for youth across the globe. This has included shaping positive attitudes towards gambling, as well as increasing the social and cultural acceptance of gambling - particularly aligned with valued activities such as sport. Because of this, public health experts argue that gambling marketing poses a significant risk to the health and wellbeing of youth. While young people are increasingly exposed to, and impacted by marketing for gambling products, they are rarely consulted about policy issues and options. This study aimed to explore young Australians' perceptions of current policy responses to gambling advertising, whether they thought young people should be involved in discussions and decisions about gambling marketing regulations, and their perceptions of the duty of governments to protect young people from gambling industry marketing strategies. METHODS: Qualitative focus groups (n = 22) were held with n = 64, 12-17 year olds in the Australian states of Victoria and New South Wales. Participants were asked to reflect on current gambling policies, particularly relating to marketing, what they thought should be done about gambling marketing, and if and how young people should be included in public health responses to gambling. An interpretivist 'Big Q' approach to reflexive thematic analysis was used. RESULTS: Young people highlighted the need for more effective regulations around the content and frequency of gambling marketing. They also wanted to see more realistic representations of the negative impacts of gambling to counter persistent positive commercial marketing messages. Most thought that young people should be given an opportunity to have a say about responses to gambling due to their unique experiences. Participants identified mechanisms to increase young people's engagement in decision making, such as direct lines of communication to different levels of government, involvement in research, and diversifying ways of engagement. Specific recommendations included more regulatory action such as bans on gambling advertising. CONCLUSIONS: Creating formal structures that facilitate the inclusion of young people's perspectives in decisions made about gambling can result in more innovative and effective strategies to prevent the harms from gambling industry products, promotions, and practices.
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Grupos Focais , Jogo de Azar , Marketing , Saúde Pública , Humanos , Jogo de Azar/psicologia , Adolescente , Masculino , Feminino , Marketing/legislação & jurisprudência , Marketing/métodos , Criança , Pesquisa Qualitativa , New South Wales , Vitória , Política Pública , Publicidade/legislação & jurisprudência , Publicidade/métodos , AustráliaRESUMO
PURPOSE: There are various ways to integrate the lived experiences and perspectives of youth and young adults into Maternal Child Health (MCH) goals, initiatives, and programs. This article describes the history, evolution, and current strategy of a program that engages youth from across the state of Wisconsin. It serves as an example for others who may be interested in building capacity for youth leadership and engagement. DESCRIPTION: The Providers and Teens Communicating for Health (PATCH) Program started as a community-based pilot project and evolved into a robust statewide youth engagement infrastructure. CONCLUSION: Meaningful youth engagement requires capacity, adaptability, and expertise. Thus, in this case, it has proven advantageous to develop complementary and mutually beneficial partnerships to support adolescent health more effectively and efficiently in Wisconsin.
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Liderança , Criança , Adulto Jovem , Humanos , Adolescente , Wisconsin , Projetos PilotoRESUMO
India is a global hotspot for irrigation-induced groundwater withdrawal, leading to widespread lowering of water levels, in turn resulting in disproportionate access to irrigation supplies among farming communities. Efforts to mitigate the situation, however, have fallen short, largely due to technocentric vision (e.g. microirrigation adoption) of the regulatory authorities (RAs), which does little to integrate the vast groundwater-dependent socioecologies with the decision making system. In view of that, we invite the RAs to deliberate upon a cap-and-trade mechanism that proposes to mobilize the farmers at every aspect of planning and execution, while to tackling multiple challenges simultaneously: (a) restrict groundwater pumping to a pre-defined safe level (cap), (b) creating a shared space/quotas for all to pump (allocation); and (c) making provisions for trade of allocations. The latter further augments farmers' access to groundwater (and irrigation). Using a systematic bibliometric analysis of relevant world literature and contextual appraisal of groundwater-irrigation landscape in India, we develop a conceptual framework of cap-and-trade in three parts. In the first Pre-implementation stage, we emphasize a reality check study to assess ground conditions, if favorable for a cap-and-trade approach (existing social, economic, institutional circumstances). Next, in the Implementation stage, (1) we recommend an integrated hydrogeological-hydrometeorological modeling to determine flexible capping arrangements, with the possibility of delineating certain priority regions (coastal ecosystems); (2) for allocations, a reasonable fraction of the cap over a defined period; we envision a thoroughly participatory arrangement, centering on four action areas: identifying, informing, consulting, and involving the farmers, alongside all stakeholders engaged in the groundwater-irrigation decision making; (3) for trade, we urge the RAs to create win-win situations for both the sellers and buyers; develop the transaction protocols on certain foundational principles (e.g. simplicity, transparency and consistency); strengthening of local institutions, and development of targeted financial support schemes. We consider the third part of the narrative, Post-implementation stage, as a real game changer, comprising of a monitoring, auditing (performance benchmarking) component coupled with multitiered outreach-mentoring drives that demonstrate to the farmers the benefits of becoming part of the cap-and-trade program. Overall, a main motivation to present this research is to shatter the age-old socio-cognitive beliefs/taboos around groundwater pumping (My land, My Water), breaking the hegemony of the water sellers (rich/wealthy large landholder clans), to potentially, create a social norm whereby the farmers realize the value of restricting groundwater pumping and sharing for mutual prosperity.
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Ecossistema , Água Subterrânea , Água Subterrânea/análise , Abastecimento de Água , Agricultura , Água/análise , ÍndiaRESUMO
INTRODUCTION: Recognition of the importance of youth engagement in youth mental health and/or addiction (MHA) service design and delivery is increasing. Youth Advisory Councils embedded in MHA organizations represent one strategy that allows youth to be involved in MHA at the individual, organization and systemic levels. This level of involvement can facilitate positive outcomes for both the youth and the organization. As these councils become more common, it is important that organizations are prepared to partner with the participating youth. This study uses a descriptive qualitative approach to understand the motivations and expectations of youth with lived experience with MHA concerns who were beginning to work on a Youth Advisory Council in an MHA setting in the Greater Toronto Area. METHODS: Semistructured interviews were conducted with each youth, ages 16-26, on the advisory council (N = 8) to understand their motivations, expectations and goals coming into the work. Interviews were transcribed verbatim and analysed using a reflexive thematic analysis. RESULTS: Analysis resulted in five overarching themes: providing opportunities for youth learning and growth, platforming youth, empowering youth, embracing youth leadership and promoting youth-driven change. The findings illustrate that these youth came into the Youth Advisory Council motivated to create positive change in the mental health system, take on leadership roles and had high expectations for organizational support. Our analyses provide insight for organizations planning and implementing Youth Advisory Councils in the MHA sector with the goal of best supporting youth in driving positive change across the system. CONCLUSION: Youth want to be provided authentic opportunities for their engagement to make a difference. MHA organizations must embrace youth leadership and move towards listening to youth experience and acting on youth recommendations to enhance service design and implementation to improve access and to better meet the needs of youth utilizing these services. PATIENT OR PUBLIC CONTRIBUTIONS: This study incorporated service users, including youth ages 16-26 with lived experience of MHA concerns who served on the Youth Advisory Council at the Family Navigation Project, Sunnybrook. Youth Advisory Council members contributed to two relevant research activities: (1) youth reviewed the draft interview guide before data collection, and their feedback was prioritized in the final version and (2) youth contributed to knowledge translation through contributing to academic conference presentations.
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Serviços de Saúde Mental , Humanos , Adolescente , Saúde Mental , Atitude , Aprendizagem , Pesquisa QualitativaRESUMO
INTRODUCTION: Patient engagement in youth mental health research has the potential to inform research on the interventions, services and policies that will benefit youth. At present, there is little evidence to guide mental health researchers on youth engagement. This systematic review aims to describe the impacts of youth engagement on mental health research and to summarize youth engagement in mental health research. METHODS: We searched the following databases: MEDLINE, EMBASE and PsycINFO, using a combination of subject headings, keywords and synonyms for the concepts 'patient engagement', 'youth' and 'mental health'. Articles that described engaging youth in mental health research were included. Two reviewers performed the study selection. Study characteristics, research activities performed by youth, impacts of youth engagement, challenges, and facilitators to engagement and recommendations for youth engagement described by authors were extracted. Quality appraisal involved determining the level of engagement of youth and the stage(s) of research where youth were involved. RESULTS: The database search returned 2836 citations, 151 full-text articles were screened and 16 articles, representing 14 studies, were selected for inclusion. Youth were involved at nearly all stages of the research cycle, in either advisory or co-production roles. Youth engagement impacts included enhancing relevant research findings, data collection and analysis and dissemination to academic and stakeholder audiences. Both youth and academic researchers reported personal development across many domains. One negative impact reported was the increase in funding and resources needed for engagement. We produced a list of 35 recommendations under the headings of training, youth researcher composition, strategy, expectations, relationships, meeting approaches and engagement conditions. CONCLUSIONS: This study provides an understanding of the impacts and recommendations of youth engagement in mental health research. The findings from this study may encourage researchers to engage youth in their mental health research and support youth engagement in funding applications. PATIENT AND PUBLIC CONTRIBUTION: We consulted three youths with experience being engaged in mental health research about the review findings and the discussion. One youth designed a visual representation of the results and provided feedback on the manuscript. All youth's input informed the way the findings were presented and the focus of the discussion.
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Saúde Mental , Participação do Paciente , Adolescente , HumanosRESUMO
Youth engagement is often purported as a critical dimension of health promotion for young people, but the strategies used to facilitate this engagement are seldom evaluated or studied. This study explored the strategies used to engage youth in a strategic planning process to develop comprehensive health and wellness plans in 28 US school districts. Participating school districts conducted listening sessions, administered anonymous surveys, included youth on a district task force, and employed other strategies to engage youth. Following this initiative, semi-structured interviews were conducted with representatives from all school districts (n = 34) to enumerate the use of these strategies across districts and understand their perspectives related to the effectiveness and importance of these strategies for engaging youth in health promotion. The most prevalent strategy used by districts was listening sessions (27 districts; 564 youth), followed by including youth on the task force (19 districts; 39 youth), anonymous surveys (18 districts; 1988 youth) and other methods (5 districts). Interviewees clarified the benefits and challenges of each strategy and provided commentary on youth engagement for health promotion. The results stress the importance of building trusting relationships with youth, using multiple strategies to engage youth, and embodying an equity mindset throughout the development and implementation of youth engagement efforts.
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Promoção da Saúde , Instituições Acadêmicas , Humanos , Adolescente , Promoção da Saúde/métodos , Inquéritos e QuestionáriosRESUMO
Engagement in youth programs is a potential means to promote health and well-being across populations of young people. Safer spaces in these youth programs are likely critical in fostering positive health outcomes, but current research on the links between safer spaces and health is limited. In this exploratory study, we examined links between program safety in youth development programs and minoritized status, and health-related quality of life (HRQoL) and psychosomatic health complaints. Participants (Nâ =â 282; Mean ageâ =â 16.97 years; SDâ =â 2.97) self-identified across various minority status groups, including LGBTQ (30%) and a range of perceived income levels. We tested a statistical model in which safer spaces, LGBTQ status and perceived income predicted HRQoL and health complaints in youth development program participants. LGBTQ status and lower perceived income were related to lower HRQoL and more health complaints, and safer space in youth development programs was related to better HRQoL. We also found an interaction effect, such that safer spaces in youth programs appeared to be especially beneficial for HRQoL for youth with higher incomes. Findings reinforce past research on LGBTQ status and income as factors for youth wellness and mental health. Findings also suggest that perceived safer spaces in youth development programs support better HRQoL and lower health complaints, across populations of participating youth.
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Promoção da Saúde , Minorias Sexuais e de Gênero , Humanos , Adolescente , Canadá , Qualidade de VidaRESUMO
Little is known about the experience and impact of intersectional stigma experienced by rural young people (15-25 years) who have a parent with mental health challenges. The StigmaBeat project employed a co-design approach to create short films to identify and challenge mental health stigma from the perspective of young people who have experienced this phenomenon. The aim of this paper is to describe the co-design methodological approach used in StigmaBeat, as an example of a novel participatory project. We describe one way that co-design can be employed by researchers in collaboration with marginalised young people to produce films aimed at reducing mental health stigma in the community. Through describing the processes undertaken in this project, the opportunities, challenges, and tensions of combining community development methods with research methods will be explored. Co-design with young people is a dynamic and engaging method of collaborative research practice capable of harnessing lived experience expertise to intervene in social issues and redesign or redevelop health services and policies. The participatory approach involved trusting and implementing the suggestions of young people in designing and developing the films and involved creating the physical and social environment to enable this, including embedding creativity, a critical element to the project's methodological success. Intensive time and resource investment are needed to engage a population that is often marginalised in relation to stigma discourse.
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Kentucky has the highest cancer incidence and mortality rates in the nation with the Appalachian region of the state being most affected. These rates are driven by health behaviors and inequities in social determinants of health. Herein, Appalachian Kentucky students with the University of Kentucky's Appalachian Career Training in Oncology (ACTION) program were engaged in a storytelling exercise by writing culturally framed essays. Students discussed their personal experiences with cancer and their thoughts on the causes of and potential solutions to Appalachian Kentucky's cancer disparities. Content analysis was used to identify common themes, subthemes, and subtopics in the essays regarding cancer types, causes of cancer in Appalachia, and solutions to the high cancer rates. Common cancer types experienced by the students included breast, lung, and prostate. The most frequently identified themes that drive cancer rates in Appalachian Kentucky were identified as geography, environmental factors, tobacco use, education, poverty, prevention, and mistrust. Common proposed solutions to decrease cancer rates were to increase education and awareness, screening, and tobacco cessation. Overall, through storytelling, youth gained a better understanding of cancer in their communities and envisioned culturally tailored, community-based intervention strategies that can aid in reducing the cancer burden in Appalachian Kentucky.
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Neoplasias , Masculino , Humanos , Adolescente , Kentucky/epidemiologia , Região dos Apalaches/epidemiologia , Neoplasias/epidemiologia , Neoplasias/prevenção & controle , Neoplasias/diagnóstico , Pobreza , EstudantesRESUMO
Youth living in areas with high concentrations of vacant properties may be at particular risk for poor health outcomes given the associations between deteriorated vacant properties, poor mental health, and community violence. Vacant lot greening has emerged as a key strategy to mitigate the harms of deteriorated properties. Youth engagement in greening has documented benefits for youth, yet few organizations responsible for managing vacant properties currently engage youth. Further, few researchers have examined the best practices that organizations can employ to effectively engage youth in greening programs. The purpose of this study was to understand how high functioning vacant land management organizations with robust youth engagement capabilities engage youth in their greening work. Based on in-depth interviews with staff from vacant land management organizations, we explored three research questions: (1) what are their identified best practices for youth engagement?; (2) what are the major challenges that impede their youth engagement work?; (3) what solutions are these organizations employing to address these challenges? Findings from this study emphasize the important themes of engaging youth in vacant lot greening in areas of planning, leadership, and decision-making. Youth engagement in vacant lot greening may be a key mechanism for preventing violence through cultivating youth empowerment and development.
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Conservação dos Recursos Naturais , Características de Residência , Humanos , Adolescente , Violência/prevenção & controle , Saúde Mental , LiderançaRESUMO
Youth engagement in institutional decision-making is necessary to ensure policy and practice is responsive and relevant to youth and community needs. In particular, it is critical to engage the voices and experiences of youth of Color who have historically been marginalized by healthcare organizations. The present study used multiple methods to examine youth and adult perspectives on the facilitators and barriers to implementing a citywide youth advisory board of youths of Color for a safety net hospital. Data were analyzed using thematic analysis. The findings illustrate the need to employ an antiracist framework to ensure organizational and adult readiness to engage youth of Color in an advisory board. Organizational readiness included assessing organizational culture, clear expectation setting, and creating safe spaces for youth. Adult readiness included adult facilitators who are trained in antiracist and equity-focused practice and the youth-adult partnership model, and a recognition of the bidirectional benefits of youth engagement in decision-making. The implications and recommendations of this study are timely given the historical mistrust between healthcare organizations and communities of Color, as well as the racial health inequities that have been further exposed during the COVID-19 pandemic.
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COVID-19 , Equidade em Saúde , Adulto , Humanos , Adolescente , Pandemias , COVID-19/prevenção & controle , PolíticasRESUMO
"Bring Change 2 Mind" (BC2M) high school clubs may destigmatize mental illness among club members, but clubs' (1) reach and impact on non-club members at the same school, (2) connection to student help-seeking attitudes, and (3) mechanisms by which they destigmatize mental illness, are unknown. This community-partnered evaluation involved pre/post surveys of predominantly Latino (72%) students at three urban public schools and focus groups and interviews with a sample of club members (n = 26/65, 40%) and all club staff (n = 7, 100%). Multivariate regressions tested relationships between variables. In 84% of the student body responded in the Fall (n = 1,040) and Spring (n = 1,031). Non-club member engagement in BC2M (reach) increased from 25% (Fall) to 44% (Spring) (p < .01). Engagement with BC2M clubs was associated with decreased stigma among members (p < .05) but not non-members (p = .19). Decreased stigma was associated with help-seeking attitudes (p < .01). Possible BC2M mechanisms identified by students and staff include the following: (1) fostering a positive campus climate, (2) normalizing mental health discussions, (3) increasing peer support and help-seeking, and (4) increasing awareness of positive coping behaviors. While BC2M clubs likely reduce stigma for members, effects did not reach non-members, challenging the potential of BC2M clubs as a schoolwide strategy to destigmatize mental health services. Future projects could investigate how to reach non-BC2M members, complement BC2M with other school climate interventions to increase impact, and measure BC2M impact alongside other outcomes relevant to schools, such as academic achievement.
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Transtornos Mentais , Serviços de Saúde Mental , Humanos , Adolescente , Transtornos Mentais/psicologia , Instituições Acadêmicas , Saúde Mental , Adaptação PsicológicaRESUMO
There is growing awareness that the built environment and transportation affect many aspects of individual and community well-being and health. Built environment and transportation planning and decision-making, however, rarely integrate robust engagement and input from youth, particularly racially/ethnically and economically diverse youth, despite the likelihood that such planning and decisions will affect their futures. Strategies are needed that prepare, engage, and ultimately empower youth in changing systems, processes, and programs that promote equitable mobility access and opportunity for youth now and in these futures. This article describes the development, implementation, actions, and impact of the Youth for Equitable Streets (YES) Fellowship program, through the perspective of the program participants, including the youth (the Fellows), program manager, and program evaluator, focusing on key factors for making this work youth-centered and oriented to successfully influence social change in transportation for mobility justice.
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Equidade em Saúde , Humanos , Adolescente , Meios de Transporte , Mudança Social , Ambiente ConstruídoRESUMO
A commentary on the Mental Health Research Goals paper, emphasising the importance of the involvement of young people at all stages of mental health research pertaining to their demographic. Examples are highlighted from the UKRI Emerging Minds Network's research challenge on the impact of racism on young people's mental health in the UK, which has implications for research on racism and youth mental health specifically but also mental health research generally.
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Saúde Mental , Grupos Minoritários , Adolescente , Humanos , Povo Asiático , Etnicidade , População Negra , Reino UnidoRESUMO
BACKGROUND: Youth and children's lived experiences are rarely considered in studies seeking to improve or evaluate their mental health care. We conducted a scoping review to identify approaches to child, adolescent, and youth engagement in mental health studies as well as study-reported barriers, constraints, and facilitators to engagement. METHOD: We systematically searched six electronic databases for literature. We included studies of mental health care service design, development, or evaluation that involved engagement of children, adolescents, and/or youth with mental disorders or who intentionally self-harm. Studies could be of any design as long as patient engagement was used at any point during its design and/or conduct. Engagement could include co-designing health services/interventions and/or participating as a co-researcher. We assessed the reporting of patient engagement using the Guidance for Reporting Involvement of Patients and the Public 2 Long-Form (GRIPP2-LF) checklist and used the Experience Based Co-design (EBCD) framework to guide data extraction and analysis. RESULTS: Sixteen articles were included in the review. Most studies used engagement to develop or adapt a mental health service (75%) and utilized a participatory or co-design approach (69%). Participants were namely adolescents and youth (aged 10-24 years) with some studies including young adults (up to 29 years old). Most studies followed less than 50% of the EBCD framework, and the commonly reported study barriers were related to aspects addressed in EBCD: time restrictions, recruitment, and generalizability. Frequently reported study facilitators included study methodology, youth engagement, and having a diverse participant sample. CONCLUSIONS: Findings from this review suggest that the EBCD framework is not commonly used to guide patient engagement in studies of mental health care services. Future initiatives should consider following the framework to ensure meaningful evaluation and improvements to youth and children's mental health care services.
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Transtornos Mentais , Serviços de Saúde Mental , Adulto Jovem , Humanos , Adolescente , Criança , Participação do Paciente , Transtornos Mentais/terapia , Transtornos Mentais/psicologia , Saúde Mental , Pesquisa sobre Serviços de SaúdeRESUMO
OBJECTIVES: Existing health services for young people (YP)(10-24 years), which are predominantly designed for but not with young people, often do not meet YP's needs. The 2018 Global Consensus Statement on meaningful adolescent and youth engagement affirms that YP have a fundamental right to actively and meaningfully engage in all matters that affect their lives. We present four case studies from three countries in sub-Saharan Africa as practical examples of the engagement of young people as partners in health research. We critically reflect on best practices to inform and guide the increasing adoption of collaborative approaches. METHODS: We developed a narrative summary of each case study through review of study documentation and discussions with research staff and young people. A youth engagement framework was used to describe partnership activities according to the following dimensions: purpose, process, positioning, perspective, power relations, place and protection. We reflected on innovative practices used, overall level of participation achieved and strategies to address ethical, logistical and/or financial barriers. RESULTS: In all case studies, we found evidence of engagement activities that aligned with the Global Consensus Statement on Meaningful Youth Engagement. However, access to participation was often uneven and despite efforts, marginalised young people continue to have insufficient opportunities to engage. Furthermore, although young people had some opportunity to influence the research methods, many of the key design decisions had been determined prior to their involvement. In our case studies, researchers had built in insufficient opportunities to evaluate the level and impact of youth engagement. CONCLUSIONS: We therefore recommend early involvement of young people in the research process so that they can contribute to setting the research agenda, the design of planned studies and thus increase the scope of their engagement from the beginning. Youth engagement activities need to be evaluated from the perspective of all stakeholders including young people themselves with a focus on opportunities to engage, the level of engagement achieved and impact of engagement. From the beginning, researchers should provide space for learning, and involve young people in encouraging critical reflection of what does not yet work, as well as what does, to enable improvements.
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Serviços de Saúde do Adolescente , Pesquisa Participativa Baseada na Comunidade , Participação do Paciente , Adolescente , África Subsaariana , Criança , Feminino , Humanos , Masculino , Adulto JovemRESUMO
BACKGROUND: Mixed methods research studies continue to pervade the field of health care, where pragmatism as a research paradigm and patient-oriented research (POR) as an engagement strategy are combined to strengthen the process and outcomes of the research. Pragmatists use the most appropriate research methods to address issues at hand, where complex social problems need multipronged approaches. As an emerging healthcare research strategy, POR actively engages individuals with lived experience across all stages of the research process. While POR continues to garner attention within mixed-methods research designs, there is a paucity of literature that considers POR in relation to pragmatism. OBJECTIVE: As POR grows in popularity within the field of health care, there is a need to explore the theoretical and epistemological alignment with pragmatism and the implications to research. METHODS: To address this need, we provide a critical review of the literature to examine the synergies between POR and pragmatism, and argue for the adoption of pragmatism as a paradigm for conducting POR. MAIN RESULTS: This article begins with a discussion of the philosophical underpinnings informing the pragmatic paradigm. It then identifies key alignments between POR and pragmatism across three intersecting concepts: democratic values, collaborative approaches to problem-solving and the pursuit of social justice. DISCUSSION AND CONCLUSIONS: Reflecting on our experiences engaging with patient partners in a mixed-methods POR study titled READY2Exit, we illustrate the relevance of pragmatism to POR by applying these concepts to practice. Implications and considerations for conducting POR within the pragmatic paradigm are also described. PATIENT OR PUBLIC CONTRIBUTION: This paper provides a critical review of the literature and did not directly involve patients or the public. The authors reflected on their experiences collaborating with five young adult patient partners in the READY2Exit study (case exemplar described in this article) to demonstrate the relevance of the pragmatic paradigm to POR. We acknowledge and thank the young adult patient partners for their contributions to the research, for encouraging us to think critically about patient engagement in research, and for sharing their experiences.
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Pesquisa sobre Serviços de Saúde , Participação do Paciente , Pesquisa sobre Serviços de Saúde/métodos , HumanosRESUMO
BACKGROUND: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co-producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. METHODS: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot-testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. RESULTS: The co-production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. CONCLUSIONS: This study investigated the process of co-producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot-test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co-production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. PUBLIC CONTRIBUTION: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co-author.
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Saúde do Adolescente , Conhecimento , Adolescente , Adulto , Humanos , AustráliaRESUMO
This study explores the academic, professional, and personal career benefits of leading science, technology, engineering, and mathematics (STEM) outreach, from the perspective of undergraduate student leaders. We consider traditional and nontraditional STEM university students, gender, and type of position (paid or volunteer) in this evaluation. Data were collected through an online survey completed by 30 former student STEM outreach leaders from the University of British Columbia. Self-reported survey data indicated that STEM outreach had a moderately strong average impact of 6.89 ± 1.55 out of 10 on participants' personal, academic, and professional development, with no significant differences between these areas. Outcomes did not differ between genders, and paid work was found to contribute to greater personal and professional impact. The positive influence of outreach on academic and professional decision making was higher in traditional STEM fields than STEM-based health-science studies. The outcomes of this research adds insight into positive impacts of STEM outreach on university student instructors.