School of Health in Social Science

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.

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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.

Thistledown Project - a short guide to ethical practice and governance for ethnographic research with people who have dementia

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.

Research Team

Professor Heather Wilkinson: Heather is the director of the Edinburgh Centre for Research on the Experience of Dementia (ECRED). Her key areas of work focus on improving the care of older people and much of her research has been methodologically innovative to ensure that participants with dementia and/or learning disability are included in research and dissemination. Heather’s work has contributed to service development in Scotland with several of her projects having a direct influence on policy and practice.  Heather is also co-founder of the Scottish Dementia Working Group.

Dr Jessica MacLaren: Jessica is a Post-Doctoral fellow in Nursing Studies.  Her research focuses on emotions and experiences of health care.  She also enjoys using stories and narrative in research. Jessica is a registered mental health nurse.  She completed her PhD in 2014, and since then has worked in research and teaching at the University of Edinburgh.

Dr Mia Nelson: Mia is an interdisciplinary Post-Doctoral research fellow.  Her research focusses on the experience of health, illness and health care provision and she has a particular interest in end of life care.  Mia has a broad experience of research design using both qualitative and quantitative research methodologies and her research interests draw equally on her psychology, nursing and midwifery backgrounds. 

Dr Liz Taylor: Liz is a Research Fellow in ECRED.  She has many years’ experience working as a nurse with people with dementia.  Her recent work has revolved around the involvement of people with dementia in research and ECRED.