Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

Autor: Nguyen, Linda, Pozniak, Kinga, Strohm, Sonya, Havens, Jessica, Dawe-McCord, Claire, Thomson, Donna, Putterman, Connie, Arafeh, Dana, Galuppi, Barb, Ley, Alicia Via-Dufresne, Doucet, Shelley, Amaria, Khush, Kovacs, Adrienne H., Marelli, Ariane, Rozenblum, Ronen, Gorter, Jan Willem
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Zdroj: Research Involvement & Engagement; 2/5/2024, Vol. 10, p1-13, 13p
Abstrakt: Background: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15–17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. Main body: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. Conclusions: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research. Plain English Summary: In the READYorNot™ Brain-Based Disabilities Study, our research team knew that for youth with disabilities, transitioning from children's services to adult health services was difficult. So, we created an application to help disabled youth between 15 and 17 years old learn how to navigate the adult healthcare system. From the beginning of the study, researchers worked closely with youth and families in a Patient and Family Advisory Council (PFAC). This paper is initiated and co-authored by members of the PFAC and researchers. We wanted to think about and learn from a "critical turning point" when a young adult partner sent an email describing some real worries about working on this project. The young adult partner reported feeling "invisible", "not heard" and felt that roles of members of the PFAC were not clear. This led to frustration and confusion—feelings shared by other members of the PFAC. This email led everyone on the project to think about working together differently. Researchers and PFAC members came together and agreed on new ways to partner: to offer clarity and flexibility around the roles of PFAC members, to value and appreciate partner contributions and to provide opportunities for all partners to contribute according to their interests and strengths. It was hard to realize that our team made mistakes, but we came together to learn and be an example for other research teams who face similar challenges. [ABSTRACT FROM AUTHOR]
Databáze: Complementary Index
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