How can we find an ethical sensitive way to include people with dementia in occupation-based research?

Background: Ethical principles developed in the context of biomedicine provide no clear solutions for challenges of daily research. People with dementia are particularly vulnerable and need special protection for participation... [ view full abstract ]

Background:
Ethical principles developed in the context of biomedicine provide no clear solutions for challenges of daily research. People with dementia are particularly vulnerable and need special protection for participation in occupation based research. This presentation aims at reflecting ethical principles, identifying areas of ethically meaningful issues for these reflections and presenting ethical sensitive procedures within occupation based-research including people with dementia.
Method:
Using an example of a qualitative research focused on occupation of people with dementia in the context nursing home, ethical reflections of occupation based research are presented. In an iterative research process a literature review focusing on ethical aspects, the conduct of research, and ethical reflections were intertwined.
Results:
Areas of ethically meaningful issues include the right of vulnerable people to take part in research, the institutional gatekeeping and informed consent, the relationship with the participants, the ongoing reflection of the research perspective, and the protection of confidentiality and anonymity.
Conclusion:
The identified areas of ethically meaningful issues offer possibilities to include people with dementia in occupation-based research in an ethical sensitive way.
Application to Practice:
Researchers are challenged to reflect their perspectives on occupation and their roles, to regard the participants’ vulnerability and to encourage them to take part in research. Furthermore they should reflect research methods from an ethical perspective, and create and utilize rooms for ethical reflections.