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Table 1 Recommendations for achieving authentic and meaningful engagement in research

From: Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research

Recommendations

Description and examples

Set mutual expectations

Collaboratively outline and negotiate expectations about the project as a team (e.g., not the researcher alone) and discuss how researchers and families would like to work together from the beginning of a project. Revisit and reassess the expectations throughout the course of the project

Do not assume motivations or experience. At the outset of a project explicitly discuss the patient or family partner’s skills, interests, and how they would like to meaningfully contribute to the project

Research conducted with patient and family partners should be conducted in a way that is respectful and values all contributions

Build rapport

Build trust and continue to build and maintain social connections throughout the partnership

Offer tangible supports

Provide the research team with tangible supports (e.g., engagement tip sheet designed by patients and families themselves) and utilize pre-existing frameworks (e.g., around compensation or honoraria) to support authentic and meaningful engagement

Intentional communication

Thoughtful, open, and ongoing communication, as well as curiosity, can facilitate and support meaningful conversations between team members (e.g., checking in or providing updates about the project, even if there is not anything for the partner to do at that time)

Build in time and share space

Time is needed to build partnerships (e.g., building in opportunities such as additional time for teams to get to know each other and have informal discussions), while space (e.g., during discussions) is needed to give partners the opportunity to collaborate