‘Nothing about us without us’: Co-production of knowledge in the context of cognitive impairment
Fifteen years ago, in a paper about consent to research for older adults living with dementia, researcher Jan Dewing asked the research community at large to consider the perspectives of people living with dementia in their research. Dewing wanted to widen our view of people living with dementia, and encourage a shift away from viewing people with dementia as subjects, toward a research culture where they become important participants in research. While we have come some way in meeting this call, there is much work left to be done, according to the World Alzheimer Report 2019. People living with dementia have been clear: ‘Let us weigh in on public policy.’
Our knowledge of the lives and experiences of people living with dementia (especially advanced dementia) continue to be filtered through caregivers and loved ones. We are still a world away from ground-breaking research like Janice Tufte described last year in her World Evidence-Based Healthcare Day blog, in which she describes her incredible experience as a patient co-investigator on a research project.
As we consider our work on self-determination in dementia care, we are left with complex questions about evidence co-production in our own work. In 2021 we completed a scoping review mapping the literature about nurses’ provisions for self-determination in residential dementia care. Using JBI methodology for scoping reviews, we identified 17 articles that spoke to nurses’ desires to actualise the principle of self-determination in their day-to-day care with people living with dementia.
Challenges to actualising residents’ self-determination in the context of dementia were also identified and ranged from individual challenges (such as nurses’ desires to protect residents from harm) to policies and procedures that limited residents’ choices in significant ways. Now, we turn to our desire to actualise the principle of co-production in our research using JBI methodologies. We want to meet the demand of helping people with dementia weigh in on public policy and their care via timely and rigorous evidence production, but several questions arise as we contemplate this possibility. It’s these questions that guide our blog entry today.
Is there room for meaningful engagement of patients living with dementia in the co-production of synthesised knowledge?
In her paper about dementia care mentioned previously, Jan Dewing calls attention to what she and other researchers call our ‘hyper-cognitive culture’; that is, our tendency as researchers to value deep thinking, scientific rigour and evidence from the peak of the evidence hierarchy. As we consider the World EBHC Day theme of equity in global evidence ecosystems, and particularly their important call to challenge evidence hierarchies, we are left wondering how we can ensure that firsthand knowledge of people living with dementia counts in the production of evidence about their care. As of yet, there isn’t a lot of room in our hyper-cognitive research culture for people living with dementia (especially advanced dementia) to contribute to the production of evidence in meaningful ways. While they are surely the recipients of the care that stems from evidence production and attendant recommendations, people living with cognitive differences have had little say in the production of that evidence.
The rigour and continual refinement of JBI’s methodologies, underpinned by their Model of Evidence-based Healthcare, ensure that the evidence produced is of exceptional quality. We believe that next on the horizon is careful consideration of co-production of evidence and, in our case, marrying the training and skills of researchers with the insights and considerations of people living with dementia. As researchers engaged in reflective inquiry about equity, we believe we must begin to take Jan Dewing’s call further and consider how people living with dementia might be meaningfully engaged in the evidence production that guides decisions about their care. If we are to realise the vision of co-produced, evidence-informed health services as the World Health Organization sets out, we need to begin asking hard questions about how people living with dementia (especially advanced dementia) are engaged in the knowledge synthesis process that undergirds the services they receive.
Is there an opportunity for people living with advanced dementia to serve as authors on a knowledge synthesis project?
When reflecting on JBI’s prompt to consider citizen voice and advocacy groups (the question of whose voice matters), we are also called to contemplate how contributions from people living with dementia (especially advanced dementia) might be counted and recognised. According to the International Committee of Medical Journal Editors (ICMJE) definition of authorship, which has been adopted by JBI Evidence Synthesis, people living with dementia would be required to:
- make substantial contributions to the conception, design, data collection, or analysis;
- play a role in drafting or critically revising the article;
- provide final approval of the version to the published;
- agree to be accountable for all aspects of the work.
While these are important and meaningful qualifications for researchers claiming authorship of a paper, the definition may benefit from re-imagination for community-based authors living with cognitive differences. The process for meeting even one of these requirements for a person living with advanced dementia would be complex, let alone all four. The logistics of asking a person with advancing dementia to agree to accountability, for example, presents some ethical quandaries. The requirement that someone who is living with language challenges must play a role in drafting an article, too, presents challenges. Current authorship guidelines may preclude the voices of people living with dementia from counting in recognised and socially important ways.
Is this discussion a contribution to hyper-cognitive research culture?
While we find it generative and challenging to consider the ways that research communities, evidence synthesis guidelines, and authorship acknowledgement structures are set up, we also acknowledge that this discussion is highly cognitive. It occurs without knowledge of whether or not people living with dementia even want to be involved in knowledge synthesis projects. Our questions could be easily dismissed as missing the point. If people living with dementia do not want to participate in knowledge synthesis, then perhaps there is little point in considering these questions at all. We are remiss, though, in excluding them without considering the possibility of a partnership. We wonder, too, if people living with dementia do not want to participate in knowledge synthesis, how might we continue to ensure that it is the most appropriate method for generating evidence about their care. How might we refine and adapt the approaches so that we continue to produce high-quality evidence that supports self-determination?
Lessons learned
In the end, we ask these questions because tough questions have the potential to make methodologies stronger. They can help us, as researchers, ensure that what we do promotes equity-centred, evidence-informed decision-making. Tufte describes the power of ‘swimming in her own lane’ as a patient partner in research, and we see so much potential in her metaphor for the involvement of people living with dementia. The length and shape of those lanes for people living with dementia are probably going to be a little odd at first, but we firmly believe there is room for its construction.
Key messages
‘Nothing about us without us’ is an important motto—a rallying cry for researchers and advocates who wish to conduct research that impacts positively on the care and lives of people living with advancing dementias. If there is to be nothing about people living with dementia without their input, then research using knowledge synthesis methodologies ought not to be exempt. We recommend, as preliminary steps:
- working alongside organisations such as Dementia Alliance International to intentionally modify and refine methodological approaches in projects of concern to people living with dementia;
- being inclusive of people living with dementia, not only in designing and carrying out projects about their lives, but also partnering to initiate projects that are of interest to people living with dementia;
- recognising through authorship the different, but equally important, contributions of people living with cognitive differences.
JBI Evidence Synthesis 19(7):p 1583-1621, July 2021. | DOI: 10.11124/JBIES-20-00291
Authors
Morris, Patricia1,2
McCloskey, Rose1,3
Keeping-Burke, Lisa1,3
1. The University of New Brunswick (UNB) Saint John Collaboration for Evidence-Informed Healthcare: A JBI Centre for Excellence, Saint John, NB, Canada
2. Faculty of Nursing, University of New Brunswick, Fredericton, NB, Canada
3. Department of Nursing and Health Sciences, University of New Brunswick, Saint John, NB, Canada
Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.
