Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom

Nguyen, Linda; van Oort, Bente; Davis, Hanae; van der Meulen, Eline; Dawe-McCord, Claire; Franklin, Anita; Gorter, Jan Willem; Morris, Christopher; Ketelaar, Marjolijn

doi:https://doi.org/10.1186/s40900-022-00400-7

Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom

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Exploring the "how" in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom

Nguyen, Linda; van Oort, Bente; Davis, Hanae; van der Meulen, Eline; Dawe-McCord, Claire; Franklin, Anita; Gorter, Jan Willem; Morris, Christopher; Ketelaar, Marjolijn

(2022) Research involvement and engagement, volume 8, issue 1

(Article)

Abstract

BACKGROUND: Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners ... read more by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom. METHODS: From six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes. RESULTS: All projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training. CONCLUSION: With this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research.

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Keywords: Adolescents and young adults, Decision-making, Disability research, Involvement, Lived experience, Participatory research, Partnership, Young people, Health(social science), General Health Professions

DOI: https://doi.org/10.1186/s40900-022-00400-7

ISSN: 2056-7529

Publisher: BioMed Central Ltd.

Note: Funding Information: We thank all young partners involved in each case study project team: CFP Panel, PiP Project, BEST SIBS Study, READYorNot™ BBD Project, VIPERS Project, and RIP:STARS Project, who were involved in different roles in this paper. We acknowledge and give special thanks to our young partners, Lauren Sluiter and Jordan Matthews, who provided solicited and unsolicited advice throughout the process of writing this paper. LN graduated from the Bachelor of Health Sciences (Honours) Program, Child Health Specialization, at McMaster University (Hamilton, Ontario, Canada) in 2015. She completed her PhD in Rehabilitation Science at CanChild and McMaster University in 2022. Her PhD studies, supervised by JWG, were focused on the role of siblings of a brother or sister with a disability during transition from pediatric to adult healthcare. In 2018, she established the Sibling Youth Advisory Council (SibYAC) that is currently comprised of six young adult siblings who have a sibling with a disability. LN will continue her partnership with the SibYAC during her postdoctoral fellowship. BvO has a Bachelor’s in Political Sciences and a research Master’s in Global Health at the Athena Institute of the Vrije Universiteit Amsterdam. Aside from her studies, she worked and did research at The Netherlands Organisation for Health Research and Development on the topics of (pediatric) rehabilitation research and youth involvement in research. Between 2015 and 2019, Bente was active in the Youth Panel Care and Future Prospect (CFP), first as a member and later as chair. The Youth Panel CFP was founded to advise the CFP program in the Netherlands on which projects to subsidise to help young people with a chronic health condition. The panel continued to expand its work and influence to improve the social position of young people in care, education, employment, sport, and empowerment. Today, the panel merged into a foundation, JongPIT, and BvO is part of the Supervisory Board. EvdM has a Bachelors in Health & Life Sciences as well as in Biomedical Sciences. She is an active member for JongPIT, which is a foundation by and for young people with chronic disabilities and stands for equal rights for all young people with health issues in the Netherlands. JongPIT aims to limit the gap between young people with disabilities and their healthy peers, and promote youth participation in healthcare, policy and politics, school, and work environments. Aside from JongPIT, she is part of the Dutch patient federation, Prinses Máxima Center for Childhood Cancer and of Childhood Cancer International. EvdM hopes that she can make a change by participating in and doing research to improve healthcare. HD has been a member the Sibling Youth Advisory Council with the BEST SIBS Study since 2019. She has a younger sibling with cerebral palsy, and uses her lived experience to contribute to research and community outreach initiatives and connecting with other siblings. She completed her BSc in Psychology, Neuroscience & Behaviour in 2015, and her PhD in Cognitive Psychology in 2020 at McMaster University. During her postdoctoral fellowship at CanChild, she worked with JWG and her research focus was on cognitive functioning in youth with cerebral palsy, to better understand how cognitive control impacts learning and emotion regulation in this population. CDM has been a youth patient partner for eight years, most recently with the READYorNot™ BBD Project and the CHILD-BRIGHT National Youth Advisory Panel. She is a first year student in the Cumming School of Medicine at the University of Calgary. When she was an undergraduate student in the Bachelor of Health Sciences (Honours) Program at McMaster University, she completed her thesis project on the topic of paediatric to adult healthcare transition policies and practices. Through her lived experience as a young patient with a number of complex medical conditions, CDM brings a unique perspective to the world of patient-oriented research. Her interests include transitions in care, rare diseases, and healthcare policy. CM is a Professor of Child Health Research at the University of Exeter Medical School. He leads PenCRU: the Peninsula Childhood Disability Research Unit, which undertakes a programme of applied health research aimed at identifying ways to improve the health and wellbeing of disabled children and their families. PenCRU involves families of disabled children as partners in all the activities of the unit through our Family Faculty. PenCRU works in close partnership with families, health and social care professionals and commissioners as the users of our research findings. JWG is a Pediatric Physiatrist, Professor and Head of Pediatric Rehabilitation, University Medical Center Utrecht (The Netherlands), and Professor of Pediatrics (Part-Time) and an associate member in the School of Rehabilitation Science at McMaster University. He has been an investigator at CanChild since 2008. Jan Willem has training in rehabilitation medicine (physiatry) with a special clinical and research interest in transition services for youth with developmental disabilities. Jan Willem is currently co-leading one of the CHILD-BRIGHT projects (funded by CIHR-SPOR), READYorNot™ BBD Project which is a randomized controlled trial study to test an e-health intervention to improve the transition of care journey for youth with BBD. This project collaborates with multiple stakeholders, including the Patient and Family Advisory Council. AF is a Professor of Childhood Studies at the University of Portsmouth, UK. Her background is in children’s social work and policy, and her research has mainly focused on disabled children and young people’s voice, rights, participation and protection. Specifically, she has contributed unique insight into the participation of disabled children and young people in decision-making. Studies have also focused on the abuse and protection of disabled children and young people ensuring that their voices and experiences inform the development of policy and practice in this area. AF developed a research methodology for co-leadership with disabled young people, and over the past decade has worked in partnership with groups of disabled young people (the VIPERS and RIP:STARS) to support disabled young people-led evidence generation to facilitate policy and practice change across disabled children’s lives. MK is an Associate Professor at the Center of Excellence for Rehabilitation Medicine Utrecht, the research institute of the UMC Utrecht Brain Center, and De Hoogstraat Rehabilitation (Utrecht, Netherlands). She was the project leader of the PiP-project described in this paper. Funding Information: LN holds the Canadian Institutes of Health Research Patient-Oriented Research Award – Transition to Leadership Stream (TLS 170679) and the Graduate Student Fellowship in Patient-Oriented Research through the CHILD-BRIGHT Network. JWG held the Scotiabank Chair in Child Health Research during the work presented in this article. MK received funding by FNO (project number 100 − 038), Amsterdam, the Netherlands during the work presented in this article. The CFP Youth Panel is funded by FNO, and BvO completed an internship on the involvement of youth in research funded by ZonMW. The VIPERS and RIP:STARS were funded by the Big Lottery in the United Kingdom, and the RIP:STARS was funded by The British Academy during the writing of this article. The READYorNot™ BBD Project is funded under the Canadian Institutes of Health Research (CIHR-SCA-145104) Strategy for Patient-Oriented Research initiative, with funding partner support from Montreal Children’s Hospital Foundation, Faculty of Health Sciences of McMaster University, New Brunswick Health Research Foundation, McMaster Children’s Hospital Foundation and Hamilton Health Sciences. Publisher Copyright: © 2022, The Author(s).

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