The Integration of Resource Patients in Collaborative Research: A Mixed Method Assessment of the Nesting Dolls Design. Issue 9 (September 2020)

• Record Type: Journal Article
• Authors: Bourque, Claude Julie; Bonanno, Marco; Dumont, Émilie; Gaucher, Nathalie; Lacoste-Julien, Ariane; Gomez-Tyo, Mathias; Langlet, Marie-France; Sultan, Serge
• Is Part Of: Patient education and counseling. Volume 103:Issue 9(2020)
• Page Start: 1830
• Page End: 1838
• Publication Date: 2020-09
• Subjects: patient partnership -- research design -- interviews as topic -- collaborative research -- cancer survivors; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2020.04.011
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: Original design to optimize the integration of stakeholders in health research. Adaptation of quality evaluation tools to assess research design and procedures. New tools and terminology to facilitate collaboration between experts and novices. Concrete example of how the participation of patients/parents impacts a study. 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.