Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

Abstract

Background Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18–25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. Methods Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. Results Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. Conclusion This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth.

An umbrella review of reviews on challenges to meaningful adolescent involvement in health research

“…For instance, both mental health 87 and overall health studies 10 report similar issues, as do different methodologies like Participatory Action Research 37 and Youth Advisory Groups 10 . The same holds true across diverse adolescent populations, including neurodivergent adolescents 88 . This highlights the need for cross‐disciplinary action and efforts among researchers and organisations to address these barriers by engaging in initiatives like establishing common platforms for learning and organising joint training programmes for researchers from different disciplines.…”

“…10 The same holds true across diverse adolescent populations, including neurodivergent adolescents. 88 This highlights the need for cross-disciplinary action and efforts among researchers and organisations to address these barriers by engaging in initiatives like establishing common platforms for learning and organising joint training programmes for researchers from different disciplines.…”

Understanding the factors related to how East and Southeast Asian immigrant youth and families access mental health and substance use services: A scoping review

“…Tailoring MHSU service delivery to specific populations while acknowledging their unique needs promotes effective and culturally safe care that leads to positive experiences [ 33 – 35 ]. Furthermore, engaging youth in MHSU research is particularly critical in the youth mental health sector [ 32 , 36 ]. Involving youth in research can be therapeutic in itself by increasing confidence and developing new skills [ 32 , 36 ].…”

“…Furthermore, engaging youth in MHSU research is particularly critical in the youth mental health sector [ 32 , 36 ]. Involving youth in research can be therapeutic in itself by increasing confidence and developing new skills [ 32 , 36 ]. In addition, youth engagement in MHSU research provides opportunities to connect with peers and draw on peer support networks while also developing skills that they can also apply to provide input into services [ 37 ].…”