Thistledown Project

The aim of this research project is to develop practical and ethically sound guidance on the conduct of ethnographic research within a population of individuals who have dementia.



Why are we undertaking this research?

In Scotland, the legal framework for conducting research with people who lack capacity is provided by the Adults with Incapacity (Scotland) Act 2000. While this gives researchers some legal direction, there is a lack of guidance on the complexity of conducting certain kinds of research, such as ethnographic research. This is important because ethnographic methods are particularly suited to conducting research with people who may have difficulty in communicating their experiences in more formal ways (e.g. questionnaires, formal interviews). Furthermore, ethnographic research is carried out in naturalistic social contexts, meaning that it is highly suited to researching the experiences of people in institutional care settings.

The problem is, that a dementia care setting is likely to have a population who have mixed levels of capacity, and fitting this to the current legal framework is complex. There is a gap in evidence around how ethnographic research can be conducted in dementia care settings. This makes it difficult to gain Research Ethics Committee approval for this kind of research, and there is a risk that researchers will be discouraged from conducting important and valuable research with a historically disempowered group of people.

What are we doing?

This study is undertaking both documentary research and interviews. The documented research will analyse ethics committee decision letters and ethics applications, and information on ethics procedures in published papers. This will produce an understanding of the volume, scope and potential impact of research in this area along with an insight into current research practices.

Interviews will be conducted with key stakeholders who are involved with dementia research and policy in Scotland. We will ask people with a range of expertise in this area about what they see as the key ethical issues, and how they think research of this kind should be conducted. This will inform an ethically robust, practical approach for the conduct of ethnographic research with people who have dementia and who lack capacity.

A short guide to ethical practice and governance for ethnographic research with people who have dementia - (PDF)

What will happen at the end of the project?

This study is due to complete at the end of September 2017.  We will publish the findings of the study in the form of a booklet, which will be distributed to research participants, policy makers, charities and universities. The findings will also be made available on this web page.