Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research
Abstract 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, em...
| Main Authors: | , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMC
2024-02-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-024-00543-9 |
| _version_ | 1827325853484187648 |
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| author | Linda Nguyen Kinga Pozniak Sonya Strohm Jessica Havens Claire Dawe-McCord Donna Thomson Connie Putterman Dana Arafeh Barb Galuppi Alicia Via-Dufresne Ley Shelley Doucet Khush Amaria Adrienne H. Kovacs Ariane Marelli Ronen Rozenblum Jan Willem Gorter CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study Group |
| author_facet | Linda Nguyen Kinga Pozniak Sonya Strohm Jessica Havens Claire Dawe-McCord Donna Thomson Connie Putterman Dana Arafeh Barb Galuppi Alicia Via-Dufresne Ley Shelley Doucet Khush Amaria Adrienne H. Kovacs Ariane Marelli Ronen Rozenblum Jan Willem Gorter CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study Group |
| author_sort | Linda Nguyen |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-03-07T14:35:22Z |
| format | Article |
| id | doaj.art-db96c7c5cd7f43c78cabb1306870b25d |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-07T14:35:22Z |
| publishDate | 2024-02-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-db96c7c5cd7f43c78cabb1306870b25d2024-03-05T20:40:59ZengBMCResearch Involvement and Engagement2056-75292024-02-0110111310.1186/s40900-024-00543-9Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability researchLinda Nguyen0Kinga Pozniak1Sonya Strohm2Jessica Havens3Claire Dawe-McCord4Donna Thomson5Connie Putterman6Dana Arafeh7Barb Galuppi8Alicia Via-Dufresne Ley9Shelley Doucet10Khush Amaria11Adrienne H. Kovacs12Ariane Marelli13Ronen Rozenblum14Jan Willem Gorter15CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study GroupSchool of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill UniversityCanChild Centre for Childhood Disability Research, McMaster UniversityCanChild Centre for Childhood Disability Research, McMaster UniversityPatient and Family Advisory Council, CanChild Centre for Childhood Disability Research, McMaster UniversityPatient and Family Advisory Council, CanChild Centre for Childhood Disability Research, McMaster UniversityPatient and Family Advisory Council, CanChild Centre for Childhood Disability Research, McMaster UniversityPatient and Family Advisory Council, CanChild Centre for Childhood Disability Research, McMaster UniversityPatient and Family Advisory Council, CanChild Centre for Childhood Disability Research, McMaster UniversityCanChild Centre for Childhood Disability Research, McMaster UniversityThe Research Institute of the McGill University Health Centre (RI-MUHC)Nursing and Health Sciences, University of New BrunswickCBT Associates (A CloudMD Company)Equilibria Psychological HealthDepartment of Medicine, Faculty of Medicine, McGill UniversityDivision of General Internal Medicine and Primary Care, Department of Medicine, Brigham and Women’s HospitalCanChild Centre for Childhood Disability Research, McMaster UniversityAbstract 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.https://doi.org/10.1186/s40900-024-00543-9Patient engagementPatient-oriented researchPatient-centered careAuthentic engagementAdolescent and young adultFamilies or caregivers |
| spellingShingle | Linda Nguyen Kinga Pozniak Sonya Strohm Jessica Havens Claire Dawe-McCord Donna Thomson Connie Putterman Dana Arafeh Barb Galuppi Alicia Via-Dufresne Ley Shelley Doucet Khush Amaria Adrienne H. Kovacs Ariane Marelli Ronen Rozenblum Jan Willem Gorter CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study Group Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research Research Involvement and Engagement Patient engagement Patient-oriented research Patient-centered care Authentic engagement Adolescent and young adult Families or caregivers |
| title | Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research |
| title_full | Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research |
| title_fullStr | Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research |
| title_full_unstemmed | Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research |
| title_short | Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research |
| title_sort | navigating meaningful engagement lessons from partnering with youth and families in brain based disability research |
| topic | Patient engagement Patient-oriented research Patient-centered care Authentic engagement Adolescent and young adult Families or caregivers |
| url | https://doi.org/10.1186/s40900-024-00543-9 |
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