One of the many great things about Dementia and Imagination is that it gives space to the actual words, thoughts and opinions of people living with dementia, as well as their relatives and carers.
Part of my role in the study has been to anonymise participant’s interviews before they are ready for analysis. This is also important for once the research is finished. So that the data can be safely and securely stored in a data bank and potentially incorporated into future research. I have anonymised some 128 transcripts to date and I wanted to share a little bit about this experience with you.
During the research, interviews have been conducted with a sample of the people taking part - to talk about their ideas on art, belonging and community and what it all means to them.
Questionnaires and self-evaluation forms are just some of the other ways that the research has sought the views of people experiencing memory problems. Sometimes they are only a few minutes long, others almost an hour. Whatever their length the interviews provide an insight, through the person’s words, into their experiences of the art groups as well as their reflections on where they live, who they speak and interact with and where they would like to feel they belong to.
Each interview is transcribed and then carefully checked to match the audio recording with the text. This is then carefully anonymised, searching for any words that might potentially reveal the person’s identity. A second anonymiser also checks the document, looking for anything that might have been missed. Once this is completed the interview is ready for analysis.
The interviews also need carefully checking between each time point, as the research involves conducting interviews at three instances: before the 12 weeks of the art group, after the 12 weeks of the art group and 3 months after the end of the art group. This is to make sure that any anonymisations are consistent across the interviews and also between the person with dementia’s interview and their carer or relative’s. This is important for the analysis so that it is still possible to identify the relationships between people as well as the places they mention.
To do this, I began creating a codebook for place names, businesses and organisations in order to maintain the same anonymisation codes across all the interviews. For personal relationships, I would always anonymise the person with dementia’s interview first and try to relate the relationship in the context of their perspective: such as daughters and sons, friends and work colleagues. When it came to the second and third interviews, I had to carefully refer back to their previous interview to keep the continuity throughout.
When it comes to sharing these words and thoughts later in the research, it’s important to take care not to reveal personal information about people, such as: where they live, names of family and friends, the names of companies they have worked for, and so on. This is a careful process that sometimes changes with the context of an interview. For instance, a person’s job role might be so particular as to help identify them. Or a combination of interests, clubs, societies and roles held within them, again narrows the possibilities and could reveal the person’s identity.
At the same time, it’s important not to erode the interview to the point that little can be taken from it and to recognise that people have offered to share up their lives, histories and stories in a way that is personally meaningful to them. For the analyist, they must still be able to determine relationships between people and places and how these might be important.
It’s been both thought-provoking and moving to hear how people living with dementia describe and articulate their condition and their sense of how it affects their day to day living, as well as finding out about their experience of the art group. I’m looking forward to beginning the analysis and finding out what we can learn from the thoughts and feelings we’ve recorded and the experiences of taking part in creative activities.