Claude Julie Bourque1, Marco Bonanno2, Émilie Dumont3, Nathalie Gaucher4, Ariane Lacoste-Julien5, Mathias Gomez-Tyo6, Marie-France Langlet7, Serge Sultan5. 1. Sainte-Justine University Hospital (CHUSJ) Research Center, Department of Pediatrics, University of Montréal, Montréal, Canada. Electronic address: claude-julie.bourque@recherche-ste-justine.qc.ca. 2. Division of Hematology-Oncology, Sainte-Justine University Hospital, Montréal, Canada. 3. Department of Psychology, University of Montréal, Montréal, Canada. 4. Department of Pediatrics, University of Montréal, Division of Emergency Medicine, Sainte-Justine University Hospital, Montréal, Canada. 5. Psycho-Oncology Center, Sainte-Justine University Hospital, Montréal, Canada. 6. Leucan (Québec association for parents of children with cancer), Montréal, Canada. 7. Patients-Families-Providers Partnership Office, Sainte-Justine University Hospital, Montréal, Canada.
Abstract
OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.
OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.
Authors: Jennifer A Stoll; Molly Ranahan; Michael T Richbart; Mary K Brennan-Taylor; John S Taylor; Laura Brady; Joseph Cal; Andrew Baumgartner; Robert G Wahler; Ranjit Singh Journal: Patient Educ Couns Date: 2021-05-11