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Ethical considerations for participatory action research involving people with potential cognitive impairment
Abstract   Open access

Ethical considerations for participatory action research involving people with potential cognitive impairment

Danelle Kenny
Alzheimer's & Dementia, Vol.19(S20), pp.1-1
AAIC 23 (Amsterdam, Netherlands and Online, 16/07/2023–20/07/2023)
12/2023
DOI: https://doi.org/10.1002/alz.073876
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Abstract

Background: This case study aims to stimulate discussion around ethics approvals for research involving humans that is classified as high-risk. Emerging research paradigms like participatory action research (PAR) advocate for the inclusion of stakeholders in research design, conduct, and analysis, but ethics approval requires development of the research and analysis plan prior to submission of the application, and approval is needed for all research materials, including consent forms, participant information sheets, and recruiting and marketing materials. How is it then possible to involve consumers in the research design and development phase prior to ethical approval of consent documentation? Method: This investigation is part of the overall analysis of the COM-IC SRG (Core Outcome Measures for Improving Care in Dementia Stakeholder Reference Group), the consumer arm of the COM-IC study. It is a case study investigating the ethical approval process for participatory action research involving people with potential cognitive impairment. Data is sourced through the activities of the COM-IC investigation team and the subsidiary interim SRG, as well as their communication and interaction with HREC teams from supporting institutions. Documentation pertaining to and reflections on the ethics approval process for the stakeholder reference group are critically analysed within the context and purpose of ethical review. Result: Analysis of the ethics approval process suggests a paradigm shift is needed if true participatory action research is the goal. Lengthy delays, inconsistencies in panel decisions, poor communication, and different perceptions of rights and capabilities of people labelled high-risk complicates an already highly emotive process. That said, it remains critical to the integrity of the overall system to have checks and balances against unethical research and ensure the rights of participants are truly protected. Conclusion: It is important for people with cognitive impairment to have the opportunity to contribute to research that is about them. Current ethical approval processes, while advocating for protection of vulnerable groups, are inadvertently impeding and complicating their capacity to be involved. Moving forward requires a collaborative rethink around ways of working that both protect and enhance opportunities for people with cognitive impairment.

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