Evaluating the ethics of a naturalistic observation study involving people with advanced dementia: A class discussion

[sue_frantz]

Any time researchers are gathering data from people or non-human animals, they must be cognizant of and address a number of ethical considerations. Here’s a naturalistic observation study whose ethics could be discussed in the research methods chapter or as a research methods booster in the development chapter or in the social psych chapter (helping). It addresses two of Intro Psych’s integrative themes: “Ethical principles guide psychology research and practice” and “Applying psychological principles can change our lives, organizations, and communities in positive ways” (APA, 2022).

Researchers wanted to observe how caregivers—both family members and paid providers—interacted with people with advanced dementia “to understand how care may be improved and inform the development of caregiver educational resources” (Backhouse et al., 2024, p. 2). The article is freely available.

To do their study, the researchers needed to observe (and video record) caregivers providing care to people with advanced dementia. While caregivers could be presumed to be able to give consent to participate in the study, ask students if a person with advanced dementia would be able to understand enough to be able to give consent. If not, could someone give consent on their behalf much like parents and guardians are able to give consent for children? After discussion, direct students to page 3 of the research article, in the section titled “Ethical Considerations and Consenting Processes.”

Next, ask students to consider the kinds of personal care a caregiver may give to a person with advanced dementia. After listing several, such as teeth cleaning, eating, shaving, and bathing, ask students if some kinds of personal care should be excluded from observation. (Would observing some types of behaviors be potentially harmful?) The researchers determined what behaviors were okay to video record by asking the caregivers which “ones they thought the person, and themselves, would not mind having observed and recorded” (Backhouse et al., 2024, p. 3). By that standard, ask students which behaviors they identified they think would be safe to include. After discussion, direct students to the “Data Collection” section on page 3, and ask them to read the first paragraph under “Video recordings.”

Next, ask students how they would record the interactions between caregiver and person with advanced dementia. Would they hide the camera (deception), or would they have a person in the room video recording openly? Which is more ethically problematic? After discussion, direct students to page 3 to read the second paragraph under “Video recordings” for the decision the researchers made.  

It is expected that the researchers would maintain participant confidentiality. Direct students to the “Data Availability” section on page 11 to read how confidentiality is maintained.

Lastly, institutional review. This study was conducted in the UK, so researchers were ethically bound by the UK Policy Framework for Health and Social Care Research. We see in the “Ethical Considerations and Consenting Processes” section on page 3 that the researchers received ethics approval from the Queen’s Square Research Ethics Committee, London. The UK’s National Health Service (NHS) has dozens of Research Ethics Committees (REC) that are sprinkled throughout the UK. Each REC tries to have at least 15 members. In 2022-2023, half of the REC members were considered lay members—people who are not “currently registered health care professionals, individuals with professional qualifications or experience in clinical research or a previously registered doctor or dentist” (Annual Report for Research Ethics Committees (RECs) in England 1 April 2022 to 31 March 2023, 2023). Ask students to read the 15 “Principles that apply to all health and social care research” and align them with APA’s five general principles. Are there some that don’t fit? If so, should they be included in APA’s ethics code?  

There is no mention in the article of a debriefing. In my reading of the UK’s NHS 15 principles, a debriefing is not required. The closest thing to it I see is Principle 11: Accessible Findings where participants must be given access to the research results.

While we’re here, let’s take a look at the results. In this study, researchers found that nurturing attentiveness was a key contributor to positive personal care interactions. Ask students to find the researchers’ operational definition of nurturing attentiveness. Hint #1: it’s on page 5. Hint #2: It’s in the “Qualitative Content Analysis” section.

To conclude this discussion, ask students to identify other populations who receive care from caregivers where those interactions could also be investigated using this type of naturalistic observation.

References

Annual Report for Research Ethics Committees (RECs) in England 1 April 2022 to 31 March 2023. (2023). https://www.hra.nhs.uk/about-us/committees-and-services/res-and-recs/research-ethics-committees-annu...

APA. (2022). Psychology’s Integrative Themes. American Psychological Association. https://www.apa.org/ed/precollege/undergrad/introductory-psychology-initiative/student-learning-outc...

Backhouse, T., Jeon, Y.-H., Killett, A., Green, J., Khondoker, M., & Mioshi, E. (2024). Nurturing attentiveness: A naturalistic observation study of personal care interactions between people with advanced dementia and their caregivers. The Gerontologist, 64(6), gnae004. https://doi.org/10.1093/geront/gnae004