Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.
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Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-academic researcher who lives with the label of intellectual disabilities and visual impairment, and one academic researcher. Both researchers kept personal diaries about their collaboration process. Inductive thematic analysis, individually and as a group of authors, was employed. Our findings reveal six necessary conditions for diversity-sensitive work in inclusive research: (a) experiencing belonging within the research group, (b) empowering people in a team through growing self-awareness and competence-building, (c) having room for reflection and searching for various ways of communication, (d) sharing power and ownership of research processes, (e) having enough time to foster the above conditions, and (f) joining in a mutual engagement in accommodating vulnerability in dialogue and collaborative work. Awareness of stigma-related issues and the risk of tokenism is also required.
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