Ethical issues when involving people newly diagnosed with dementia in research

Holland, Suzanne; Kydd, Angela

Abstract

Aim To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research.

Background There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs.

Data sources The lead author’s experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants.

Review methods An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia.

Discussion This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm.

Conclusion Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential.

Implications for research/practice Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.

Citation

Holland, S., & Kydd, A. (2015). Ethical issues when involving people newly diagnosed with dementia in research. Nurse Researcher, 22(4), 25-29. https://doi.org/10.7748/nr.22.4.25.e1308

• Journal Article Type: Article
• Acceptance Date: May 13, 2014
• Online Publication Date: Mar 18, 2015
• Publication Date: Mar 18, 2015
• Deposit Date: Aug 5, 2016
• Journal: Nurse Researcher
• Print ISSN: 1351-5578
• Electronic ISSN: 2047-8992
• Publisher: RCN Publishing
• Peer Reviewed: Peer Reviewed
• Volume: 22
• Issue: 4
• Pages: 25-29
• DOI: https://doi.org/10.7748/nr.22.4.25.e1308
• Keywords: Dementia, research ethics, involving people with dementia in research, post-diagnostic counselling
• Public URL: http://researchrepository.napier.ac.uk/Output/328907