Background: Participatory research approaches systematically integrate the perspectives of individuals, organizations, or communities that have a direct interest in a study's processes and outcomes (i.e., stakeholders) in research design and implementation. This supports interventions that are developed "by, not for" end-users, thereby increasing acceptability, uptake, and adherence. However, participatory approaches are relatively under-utilized in intervention development and behavioral change intervention research, in part, due to inadequate reporting of methodology. Therefore, to improve transparency in planning and reporting, we (a) describe how we engaged patients and community organizations (i.e., patient and community partners) in grant development for a self-compassion and physical activity behaviour change intervention for women with cardiovascular risk factors and (b) present a protocol for engaging patient and community partners in the optimization and implementation of the intervention moving forward.
Methods: Our participatory research approach was guided by the Strategy for Patient-Oriented Research patient engagement framework and our prior stakeholder engagement work. Four patients and three community partners were engaged at the level of Involve, meaning their perspectives informed directions, processes, and decisions at major project milestones. Specifically, patient and community partners engaged in three separate meetings during grant development wherein they: (a) established a Terms of Reference to guide engagement activities and expectations; (b) shaped the grant through guided conversations about research priorities, outcomes, and intervention delivery components that could be targeted for optimization and (c) co-developed a protocol that specifies how relationships will be initiated with future patient partners, proposes engagement activities across the research cycle, and includes plans for formal evaluation of engagement processes.
Conclusions: Participatory research approaches provide valuable insights into the development of behavioural interventions, especially when stakeholders can partner early and have a meaningful impact. By detailing our engagement activities to date, we hope to model an approach to engaging stakeholders in behavioral intervention development and demonstrate the impacts of doing so.
Keywords: Behaviour change; Intervention development; Optimization; Participatory design; Patient and public involvement; Patient engagement in research; Protocol; Self-compassion; Stakeholder engagement.
Background: Participatory research engages individuals, organizations, or communities affected by a study’s outcomes (“stakeholders”), in its design and conduct. Participatory research approaches are not commonly used in intervention development and behavioral intervention research, in part due to a lack of studies describing ways to engage stakeholders in this work. Therefore, our study aimed to (a) describe how we engaged patients and community organizations (“patient and community partners”) in developing a grant application for a behaviour intervention for women with cardiovascular risk factors and (b) present a protocol for engaging patient and community partners in the future intervention.
Methods: Our approach was guided by the Strategy for Patient-Oriented Research patient engagement framework and our prior engagement work. Four patient and three community partners were engaged at the level of Involve, meaning their perspectives informed directions, processes, and decisions at project milestones. Across three sets of meetings, patient and community partners: (a) established a Terms of Reference to guide engagement activities and expectations; (b) shaped the grant through guided conversations about research priorities, outcomes, and intervention design; and (c) co-developed a protocol that described how relationships will be initiated with future patient partners, potential engagement activities across the research cycle, and evaluation plans.
Conclusions: Participatory research approaches provide valuable insights into the development of behavioural interventions, especially when stakeholders can partner early and have a meaningful impact. By detailing our engagement activities, we hope to model an approach to engaging stakeholders in behavioral intervention development and demonstrate the impacts of doing so.
© 2024. The Author(s).