The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research

Abstract

Introduction: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research.Methods: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. Findings: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. Conclusion:The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.

‘Learning and growing together’: exploring consumer partnerships in a PhD, an ethnographic study

“…Consistent with the literature, whilst considerable time and effort was required from all partners, there were many benefits to research outcomes including improved research accountability, quality, and relevance across the research cycle [9,17,32]. Additionally, the emphasis on authentic co-production, rather than consultation, avoided the risks of tokenism and instrumentalization of CCI [8,13,34]. Dissemination and translation of PhD findings was a large focus and provided substantial reward and recognition for the consumers.…”

“…Dissemination and translation of PhD findings was a large focus and provided substantial reward and recognition for the consumers. Co-production of knowledge translation ensured inclusion of consumer perspectives beyond traditional academic publications as recommended for enhanced implementation of research findings [15,34]. Given journals are increasingly requiring a CCI statement [35], partnerships in a PhD may also be advantageous for publication success.…”

Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation

“…Involving people with disability in designing and distributing information about research is increasingly important. More recent approaches to developing sustained research relationships centre on dignified partnering with people with disability in research (see for example, Chapman et al, 2022).…”

Partnering with consumers: Do occupational therapists genuinely partner? Can we do more?

“…Four papers focus on occupational therapy education, with three discussing the involvement of lived experience experts in mental health (Happel et al, 2022; Logan et al, 2022; Scanlan et al, 2022) and one discussing consumers providing feedback to students during practice placements (Bevitt et al, 2022). Two focus on the involvement of consumers in developing services (Harris et al, 2022; Pozniak et al, 2022), and three focus on consumer partnerships in research (Chapman et al, 2022; Cox et al, 2022; Liddle et al, 2022).…”

“…The overarching main theme of the rapid ethnography ‘different in so many ways’ highlighted that involvement in the advisory group was empowering and a highly valued experience, but different to consumers' previous involvement in consumer involvement activities, highlighting that authentic consumer engagement is rare. Chapman et al's (2022) paper described the process and outcomes of developing a collaboratively designed framework (The Dignity Framework) for conducting rehabilitation research in partnership with citizens with disability. The nominal groups' technique‐based process led to an inclusive framework grounded in human rights.…”