Laura Miller
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Articles (6)
Year:
2024
Year:
2023
Introduction In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)‐Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths‐based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co‐authored by the ENVISAGE health service researchers ( N = 9) and parent partners ( N = 3) to describe the process through which we co‐developed and implemented the workshops. Methods Collaborative auto‐ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public‐2 tool, were used to describe the co‐design process, the benefits gained, and lessons learned. Findings Parents ( n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent–researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self‐reflection; and (vii) funding. Conclusion Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.
Year:
2022
Year:
2022
Year:
2022
Year:
2020
Collaborators (8)
Peter Rosenbaum
Professor
McMaster University
Peter Wilson
Professor of Developmental Psychology, Healthy Brain & Mind Research Centre (HBMRC)
Australian Catholic University
Debra Hughes
McMaster University
Jess Reynolds
Children's Cancer Institute Australia
Andrea Cross
Assistant Professor
McMaster University
Eduardo Duarte Machado
Professional Practice Educator
Australian Catholic University
Michael Cole
Associate Dean (Research)
Australian Catholic University
Thomas McGuckian
Lecturer
Australian Catholic University
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