Working with people with dementia as peer researchers during data analysis
The involvement of peer researchers in data analysis activity took place during a five-year programme, called the PRIDE study (Yates et al. 2019). The ethos of the programme was on people being supported to remain as independent as possible in making choices about aspects of their life and living well at home. The tenet of peer research as a means of enabling social citizenship had good fit with the overall study aim.
Our peer research approach was informed by a structured literature review -the review was undertaken in collaboration with the European Working Group for People with Dementia, an organisation comprised entirely of people with dementia - which focused on the use of peer research with people with dementia and other forms of cognitive impairment. Findings from the review emphasised that people with cognitive impairment require a range of practical support to engage in peer research activities. For instance, practical lessons included a careful approach to training (consisting of short sessions to develop confidence in research and peer researchers’ new roles); discussing, defining and revisiting people’s roles during activities; accessibility of written materials and physical environments; support before and after research activities to deal with emotional consequences for peer researchers; and ensuring that adequate financial resources are available to support payment of peer researchers and facilitators, and venue hire (Tanner 2012; Di Lorito et al. 2016).
Peer researchers were involved in the analysis of a data set collected as part of the qualitative research component of the PRIDE study, which aimed to develop a critical understanding of the social discourses of dementia. Research interviews were undertaken by two academic researchers and three family carer peer researchers (Birt et al. 2019b). All had extensive experience of communicating with people with dementia; the tacit expectations and challenges of working with family carers as peer researchers during data collection have been documented elsewhere (Poland et al. 2019). The data set consisted of 124 in-depth qualitative interviews documenting the fears and realities of aging and aging with dementia. Initially, interviews were undertaken with 124 participants consisting of older people, people with dementia and family carers. Each person participated in a repeat interview at 12 months to record any changes.
Peer researcher recruitment
The recruitment of peer researchers was supported by two NHS Trust research departments. Good relationships with the staff in these departments had been established during participant recruitment for interviews, so they were fully briefed about the aims and ethical commitments of the study. Each NHS Trust made contact with people with dementia who were interested in research, with trust staff acting as gatekeepers between the research team and those interested in adopting a peer researcher role. They contacted potential participants bytelephone to discuss the study and following up with an information sheet. One person was recruited through the Alzheimer’s Society, via their research advisory group. We also tried to recruit peer researchers directly through public dementia groups and community organisations. However, this was not successful, suggest-ing that the role was perhaps seen as more authentic, relevant and achievable when information about it was shared by someone already known to the person with dementia. The Health Research Authority ethics committee reviewing the study stipulated the use of participant information sheets and consent forms as part of this recruitment process, even though there was no intent to collect data from them as per more traditional forms of qualitative research.
In total, ten peer researchers were recruited. Two cancelled before the workshop: a relative phoned to explain that one person was ‘too confused’, and another person was ill on the day. Therefore, eight peer researchers - seven men and one woman; four from each site - participated in analysis workshops. Aged between 60 and 80, peer researchers had been living with dementia for between six months and four years. We did not access medical notes but people appeared to be living with mild to moderate dementia. Some disclosed that they had a diagnosis of Alzheimer’s Disease and another had Frontotemporal dementia. All were fully mobile and, other than wearing glasses and hearing aids, none had sensory loss. They described symptoms such as challenges in everyday life associated with planning and short-term memory loss. Adaptions for these symptoms had to be made during the data analysis.
Peer researcher analysis workshops
Peer researcher workshops took place in two locations in England, and in each location four people attended morning workshops over two consecutive days. Mornings were selected as the loss of light towards the end of the day can lead to increased confusion known colloquially as ‘sundowning’. Workshop venues, a hotel and a university, were centrally located and fully accessible. Each venue had spaces for ‘timeout’, either for those with dementia or their carers if they had brought the person in. We requested that carers did not attend the workshop activity as their experience of dementia can differ from that of the individual living with the condition. To help peer researchers engage with the analysis material, two facilitators - an NHS Trust staff member and academic researcher who were known to the peer researchers - attended each workshop.
Each workshop lasted three hours and consisted of seven distinct analysis activities which were planned across the two days. Four activities enabled peer researchers to consider - i.e. interpret - segments of data by commenting on their understanding of others’ experience of living with dementia. Three activities enabled the peer researchers to match - i.e. code - data by recognising patterns in such experiences. Each activity was introduced to the group, and then time was given for individual peer researchers to consider the data with support from facilitators, before wider group discussion. Each analysis activity was planned to
Peer research with people with dementia 65 last for 20-30 minutes, providing ample time for settling in, having breaks and general talk.
The first challenge in planning for the workshops was reducing the large qualitative data set of interviews with 124 participants in preparation for data analysis. To make the peer research analysis practicable, we needed to select and present the data in an accessible way. Although seemingly contradictory to an inclusive participatory approach, the academic research team made decisions on what data to share with peer researchers to enable their useful involvement in the process. Such a process is consistent with decisions that qualitative research' ers make when selecting illustrative quotes - i.e. choosing short statements that most clearly illuminate points or illustrate arguments - for publication (Holloway 2005). Initially we selected data from the 51 participants who were living with dementia, as this more closely reflected the peer researchers’ lived experiences. We then selected data that represented the emerging themes in our preliminary analysis of the data. These themes included ‘talking about dementia’, ‘getting a diagnosis’, ‘talking about friendship’, ‘living with dementia’, ‘staying well’ and ‘using technology’. We produced four short case studies so peer researchers could see data in the context of individual research participants rather than single short quotes. When selecting quotes, we ensured age, length of time living with dementia and sex were represented.
The second challenge related to presenting data for analysis in an accessi-ble way, and we followed guidance on accessibility to do so (Dementia Voices 2013). For example, in preparing the activity on ‘talking about friendship,’ we revisited preliminary coding and selected approximately 40 extracts of data that included positive and negative accounts of friendship. To enhance accessibility, we selected succinct quotes (the longest extract was 38 words); used quotes that described tangible actions (abstract thinking can be difficult for people living with dementia); and formatted documents to make texts easier to read, using coloured paper or coloured speech bubbles, size 18 sans serif font, 1.5 line spacing, and ensuring large areas of paper without text.
We chose not to offer formal research training before the analysis workshops as short-term memory is often impaired with dementia. Instead, at the start of each workshop, we shared an overview of the research project, the role of the peer researcher and the analysis activities. This information was printed and given to the peer researchers to take home and discuss with family.