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Published on: June 6, 2020
Co-producing research with people impacted by dementia and service providers: issues and challenges
Ellen Gaffy1, Bianca Brijnath2, Briony Dow3
1National Ageing Research Institute, Melbourne, VIC, Australia; School of Nursing and Midwifery, La Trobe University, Melbourne, VIC, Australia; e.gaffy@nari.edu.au.
Background/Objective:
Co-production is a collaborative method that can make the research process more egalitarian by ensuring researchers work in partnership with key stakeholders in both the design and delivery of research projects and outcomes. A departure from more traditional ways of conducting research, co-production requires the researcher to reflect on their role in the co-production partnership. However, academic research projects are often constrained by parameters set by funding bodies, ethics committees and the researchers themselves. This raises questions about whether some of the key tenets of co-production, including equally shared power, control and responsibility, can be achieved in a meaningful way. This paper presents some of the issues and challenges faced by researchers in achieving shared power when utilising co-production methodology in academic settings. Type of program or service: The application of co-production within an academic research project is illustrated by a case study involving co-production with family carers, people living with dementia and service providers to develop dementia-specific training for home care workers.
Results:
There were unavoidable external constraints on sharing power and decision making within some elements of this project. Project parameters, including the research topic, timelines and funds available, were set by the funding body. Similarly, the study objectives and methods involving participants were required to be predetermined for ethical review. Power was redistributed by shifting the power dynamic in various ways within the internal project environment. Researchers developed strong relationships and built trust with key stakeholders, maintained consistent communication, negotiated conflict, ensured each stakeholder voice was heard and supported people living with dementia to be involved safely and comfortably.
Lessons Learnt:
Funding body requirements, ethical governance and researcher responsibilities can limit power sharing and decision making when using co-production in academic contexts. Although the researcher or research organisation may hold ultimate responsibility for the overall management and delivery of the project, power can still be ceded and redistributed at many points within the project.
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