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Publication date: 24 November 2023

Aideen Sheehan and Roger O'Sullivan

Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical…

Abstract

Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical challenges involved in encouraging participation from groups with a wide range of intellectual, cognitive and physical capacities while ensuring that the rights and well-being of participants are protected. Rather than exploring ethical theories, this chapter is a case study describing the practical ethical considerations that were involved in designing and holding a series of focus groups with adult health and social care service users from vulnerable cohorts. It is based on a series of focus groups which the Institute of Public Health (IPH) held with specified cohorts as part of a policy development process on adult safeguarding for the Department of Health (DOH) in Ireland. The four cohorts were people with intellectual disability, cognitive impairments, significant mental health challenges and nursing home residents. This chapter does not describe the findings of the focus groups but outlines the ethical and methodological considerations that arose in designing and conducting this research, and the practical ethical safeguards employed to mitigate risk and comply with Irish and EU General Data Protection Regulation (GDPR) legislation governing health research. It outlines the ethical issues around protecting confidentiality and using incentives to encourage participation, how individuals' capacity to give informed consent was maximized, the risk-assessment and mitigation procedures used to prevent harms arising and the measures put in place to provide follow-up emotional support to participants.

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Ethics and Integrity in Research with Older People and Service Users
Type: Book
ISBN: 978-1-80455-422-7

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