Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs)

Abstract

Introduction Increasing demands from public and private healthcare coupled with national initiatives in patient-oriented research has led to an increase in avenues to allow patients to be directly involved in research. In particular, the push towards participation of children and youth has resulted in the formation of pediatric patient advisory groups with broad partnerships and consultation requests across the globe. However, there is a lack of evidence to examine the challenges in formation and training of young persons’ advisory groups (YPAGs) and management processes required thereafter. Purpose and objectives This study’s purpose is to document YPAG formation and training protocols around the world, highlight common strengths, and evaluate pitfalls and challenges. The results from this study will subsequently inform the development of standardized training protocols for children and youth to be piloted globally. Methods In this study, 17 select YPAG team leaders from 7 countries were surveyed to determine current training techniques used within existing groups. 17 youth representatives and 16 team leaders were then interviewed to gather further qualitative data on facilitators and barriers that aid or prevent successful initiation and maintenance of these groups. Qualitative interview data was coded and analyzed using NVivo by two independent reviewers (SYC, VWLT). Any inconsistencies in thematic analysis was confirmed by a third reviewer (JB). Results The most common training topics include consent and assent (64.71%), clinical trials (64.71%), and patient safety (70.59%). There are significant discrepancies to the amount of training received by each team. Most YPAGs out of the 17 groups receive no formal training (58.82%) while training sessions in the remaining 7 groups vary in both duration and frequency. Collectively, meetings ranged from 15 minutes to 6 hours long, with the majority of team meetings being 2–3 hours long (58.82%). The most common training facilitators are a positive relationship with a local hospital (82.35%) and access to a dedicated team coordinator (64.71%). 70.59% of team leaders identified a lack of access to appropriate educational materials available as a drawback to the impact of their YPAG, making this the greatest common barrier. Conclusion Bringing children and youth to the forefront of paediatric trials and clinical research facilitates appropriate patient representation in subsequent research decision-making. There is an urgency to create and implement standardized protocols for the training of children and youth, especially in preparation for national and international research consultations. This low barrier framework may be of special interest to lower-middle-income countries who wish to encourage community participation in healthcare.

Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews

“…From the ES, we identified 40 groups across Canada that engage youth in research‐related activities or various aspects of health service planning/policy development/health promotion across a spectrum of health topics. Many of the groups were recently established (between 2010 and 2020), reflecting an increase in the awareness of youth engagement as an important part of research‐ and health‐related improvement processes 3 , 27 This aligns with the growing body of literature in the last decade that has noted a shift in youth engagement in research, planning and policy development. 4 , 5 , 27 , 28 …”

“…Young people are now more than ever actively participating in setting research agendas, codesigning research studies, informing knowledge translation activities 1 and acting in an advisory capacity to researchers and policy makers. 2 , 3 , 4 , 5 Empowering young people to share their unique and valuable experiences can improve research quality and relevance by ensuring that research projects and outputs (e.g., knowledge translation tools) align with the needs and perspectives of youth. 6 , 7 , 8 …”

Management and Governance Accountability to Children: Participation and Representation in Organisational Decision Making

“…Children tend to be most motivated to participate in programming, strategy development, and advocacy when the process and activities are interesting, and when they are able to discuss and influence concrete matters and decisions (Charles & Haines, 2019;Collins et al, 2020;GenerationOn, 2010;O'Kane & Barros, 2019;Tsang et al, 2020). Use of creative methods and tools, such as participatory appraisal tools (body mapping, ranking, problem trees), drama, and digital media can motivate and sustain children's engagement and can enhance children's analysis and communication skills (Charles & Haines, 2019;Collins et al, 2020;O'Kane & Barros, 2019;World Vision, 2019a).…”

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat"

“…P2C2 engagement initiatives sometimes fall short in providing empowering representatives, leaving them ill-equipped to be effective representatives of the their communities or advisors to the institutions with which they are engaged. 18 In these instances, failure to professionalize engaged laypersons amounts to tokenism and renders the promise of effective P2C2 engagement out of reach.…”