Recognising the expertise of people with dementia in data analysis

All peer researchers said that they had enjoyed having a private place to talk about issues affecting their lives, where people did not judge them. There was a shared sense of participating in something that was of value, which reflects Brett et al.’s (2014) findings that public involvement in research processes led to people feeling valued and empowered. The analysis activities supported people with dementia to enact and demonstrate aspects of their agentic selves as socialcitizens. Bartlett and O’Conner (2010) propose that social citizenship ‘recognizes the person with dementia as an active agent with rights, history, and competen-cies’ (2010, p. 39). These activities illustrated the expertise that these people brought to a qualitative data analysis process. Peer researchers drew on their per-sonal histories to compare and contrast their experiences with the data - they were socially active individuals and intellectually capable of considering alternative viewpoints to their own. Here we illustrate some examples of their contribution to interpretation and analysis of data.

Confirming the interpretation of data

Throughout the analysis activities, peer researchers repeatedly confirmed our preliminary analysis and interpretations, stating that participants’ stories related closely to their own experiences. While this indicated credibility in our preliminary analysis, we were eager to encourage further interpretation of the meaning of the quotes. To do so, we listened to peer researchers’ confirmation of how they recognised their experiences, then challenged them to discuss what they thought the quotes meant about research participants’ experience of dementia. For instance, the following quote about receiving a diagnosis generated differing interpretations:

Bugger! That’s the best word I can use to describe it. I was stunned. It was a long time before - I’m not going to say I didn’t accept it; it was more, ‘Why?’

Peer researchers were asked how they thought the participant had felt about their diagnosis. Two peer researchers focused on the unexpected nature of the diagnosis, indicated by the word ‘why’. Another peer researcher said we should focus on the word ‘bugger’, as this was most pertinent because the interviewee may have expected the diagnosis. This prompted academic researchers to explore, within the main data set, whether an expected or unexpected diagnosis shaped the participants’ acceptance of the diagnosis.

There was not always consensus on the meaning of the data. For example, when we shared the following quote in the interpretation activity that focused on ‘talking about friendship’, one peer researcher emphatically stated that this must be a lie, as he had lost all his friends after his diagnosis:

We’ve told people, suddenly everybody comes out of the woodwork and we’ve had meals in all our friends’ houses. We realise that we’re surrounded by crowds of friends.

The researcher explained that this was what someone had said in an interview, but this did not reassure the peer researcher who again stated it must be a lie. Meanwhile, other peer researchers agreed that friends were important and that they found people had been helpful since their diagnosis. The peer researcher

Peer research with people with dementia 67 who thought it was a lie was becoming agitated about the differing views. To help to reassure him that his experiences were valid, while also enabling the rest of the group to provide their interpretations, we shifted the focus of analysis activity from discussing the meaning of this individual quote to asking peer researchers what phrases they thought were important in other quotes. This redirection was successful in moving discussion on, and all then agreed with the sentiment within another quote, that ‘[You] can’t rely on friends. Families are different’. This activ-ity enabled members of the academic research team to review the data for any other non-confirmatory data where participants might have experienced a loss of friendship. The event highlighted the need to be alert to, and have respect for, multiple views during analysis. The aim of working with peer researchers -who have become experts through lived experience - is not to seek a ‘truth’ or validate findings (Clarke et al. 2018), but rather to encourage dialogue in which an exchange of ideas and experiences can extend, compare and contrast with academic researchers’ understandings of data.

 
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