Bringing new understandings to data analysis
Peer researchers challenged interpretations to bring new understandings to these texts. This was the case in relation to the activities which focused on talking about and living with dementia. To stimulate a coding activity which focused on living with dementia, we shared two theme cards entitled ‘positive experiences’ and ‘negative consequences’. However, peer researchers challenged these coding categories, stating that the pre-selected quotes did not readily fit into the theme cards. For instance, one peer researcher said that two quotes - ‘It’s not what 1 would have chosen in life, but it’s what life’s given me, so you just get on with it’ and ‘don’t feel as secure, 1 suppose, because you can be out and about doing things and suddenly you’ve got a blank’ - were neither positive or negative, but instead were about ‘living within limits’. This generated further discussion about another theme. Peer researchers placed the following quote in a new theme they developed called, ‘accepting limits’:
1 get frustrated and very down because I think, phew I can’t remember that, and there’s a little flicker, an expression change, it’s like they are trying to understand what I say.
Such interactions led the research team to reflect on how the analysis might not be helpful if it reduced complex life circumstances to dichotomous statements.
In another example, when thinking about living with dementia, peer researchers encouraged us to reconsider our interpretation of the quote, ‘the whole village is supportive’, which we had initially thought was a positive, supportive response from other community members. However, peer researchers explained that when too many people know about the diagnosis it can make the person feel that ‘they are in a zoo’, with too many well-meaning people looking in, and so,
not necessarily positive. This lived experience insight led to our reviewing the original interview to see if the meaning of the quote had perhaps been changed to overemphasise the positives by taking it out of context. It also sensitised us to the trust a person with dementia might need in order to share a diagnosis.
Identifying alternative lens of analysis
Peer researchers helped us identify an alternative lens through which to explore the data. For example, when looking at data about friendships and receiving a diagnosis, the female peer researcher questioned whether there might be different experiences based on gender. We were looking at two quotes - ‘If you are losing your memory people’s attitudes change’ and ‘all my friends have gone’ - and she explained that in her experience, female friends seemed to find it harder to acknowledge her diagnosis than her male friends. This prompted us to return to the main data set and explore gender differences. Although we only had a small sample of women living with dementia, it did appear that they struggled to main-tain friendships. In contrast, the wives of men with dementia helped to organise their husband’s social lives.
Another peer researcher suggested that we explore the different experiences people might have depending on their age, or whether they had accepted their diagnosis or not. While we had already considered these issues in our preliminary analysis, this confirmed peer researchers’ abilities to consider theoretical reasons why narratives on dementia may differ.
In qualitative research, coding can often be at single word level, and in dis-cussing the quotations in detail peer researchers challenged some of our interpre-rations. For example, when focusing on living with dementia, one quote read, ‘It’s the small things that are a nuisance’. The researcher had focused on the word ‘nuisance’ as having most importance. Peer researchers explained that the most important words were ‘the small things’, as it was the gradual build-up of small things that made daily life such a struggle. This interpretation was reconfirmed by peer researchers when we looked at the quote, ‘It’s small things but they build up and you do feel that you’re not in charge’.
Unexpected challenges of working with peer researchers
We sought to mitigate the emotional distress associated with peer researchers engaging with data about other people’s similar or more complex lived experiences of dementia. For instance, we ensured workshop facilitators were experienced in supporting people with dementia; created space and time at the end of the activities for people to talk and socialise; provided participants with followup contact details and sent them letters a week after the workshops to thank them for their help. However, a number of unexpected challenges arose.
The first of these concerned making transparent the different role of peer researcher and research participant. At several different stages of the
Peer research with people with dementia 69 recruitment process, we explained that the peer researcher role was not to be a participant in a study but rather to work alongside researchers to understand the research data. During the workshops, people occasionally spoke of enjoying taking part in the research, which led us to reiterate the difference in the roles. In part, this may have been exacerbated by the study’s ethical requirement that peer researchers signed consent forms before starting the workshops. Poor understanding of differences between participant and public involvement may also be indicative of the complex definitions and activities which are named as public involvement (Mathie et al. 2014), suggesting a need for increased clarity and equity in roles and subsequent knowledge generation anticipated in peer research partnerships.
When undertaking similar analysis activities, Clarke et al. (2018) noted that in the early workshops peer researchers tended to talk of their own experiences, and different activities were required to move discussion from talking about per-sonal experience with no reference to data, to linking personal experiences to the data, to finally discussing data extracts without reference to personal experiences. With support from facilitators we were able to have discussions which focused on comparing and contrasting their lived experiences with the data. The most effec-tive technique at moving discussion from personal experiences to the meaning of the data was a coding activity that asked peer researchers to make a decision about placing quotes on particular theme cards.
A second challenge lay in making data fully accessible so that people with cog-nitive impairment could engage and contribute effectively. Despite our efforts, a couple of peer researchers struggled with activities, particularly when needing to remember information to make a judgement on its meaning. For example, during the coding activity that focused on talking about dementia, one man repeatedly picked the card up and looked at it, explaining he needed to do this because each time he lay the card down, he forgot what it said.
A third challenge occurred prior to the data analysis workshops and was associated with the influence of gatekeepers on peer researcher recruitment. Initially we had intended to work with people with dementia as peer researchers in both interviews and analysis. To raise awareness of the opportunity and initiate recruitment of peer researchers, we provided information to gatekeepers, including health professionals and family carers. After three months, we had received only one expression of interest from a person with dementia, but the family withdrew the person due to concerns about travel. To enable some representation of those with a lived experience of dementia in the data collection phase, we worked with family carers who undertook the interviews. Gatekeepers were concerned about the ‘appropriateness’ and ‘emotional safety’ of people with dementia being a peer researcher (Waite et al. 2019). Our success in recruiting peer researchers into the data analysis activities seems to have been based on having established trusting relationships between the health workers - who were attuned to the capabilities of many people with dementia - and the academic research team during data collection.