Research priorities: Research priorities to transpire from each PPI workshop are listed in Table 1. Engagement with the young onset dementia group at Oxford brought to light the need for evidence on co-ordinated support post diagnosis, so that people given this diagnosis can be helped to live as full a life as possible. At Bristol, South Asian women highlighted the hidden nature, myths and rumours associated with women’s’ health issues, specifically menstruation. Their conversations indicated there was a need for research into the lack of informed knowledge, and the difficulty of discussing women’s health issues openly, and in the presence of male members of the community. At Keele, concerns and key challenges of older people with MSK and mental health problems that were raised included the burden of feeling isolated, the sometimes unhelpful treatment given for multiple conditions, finding the right information from the internet or other sources, and the “guilt/fear” of being judged as wasting health professionals’ time. Hence, the three research priorities for this group centred on information needs, quality of life/anxiety, and cost of care.
Research priorities identified during group discussions
Young onset dementia
MSK and mental health
How to ensure everyone has access to a range of support after being diagnosed with dementia?
What are the barriers and enablers to communication around menstruation and menopause?
How to address lack of information related to accessing health care (lack of navigation, inadequate signposting, and lack of feedback for example following test results)?
How to address the risk of misinformation from the internet or other sources (social networks, self-diagnosis)?
How to improve the co-ordination of services/support for people with dementia (and their family)?
How can we educate and support women from South Asian communities to engage in discussions around menstruation and menopause?
Due to limited consultation time with healthcare professionals, how do we reduce the burden of finding the right information for self-management as and when needed?
How to support people with dementia to engage in positive health behaviours (e.g. a good diet, getting vaccinated for flu, keeping physically active)?
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How to combat loneliness, and isolation when living with multiple physical and mental health conditions?
How to best educate people about the condition (the general public, healthcare professionals, people living with dementia)?
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How to manage anxieties, “guilt/fear” of being judged as wasting health professionals’ time at consultations?
How to address the employment challenges and potential discrimination in the workplace that people with young onset dementia can encounter?
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How to minimise cost and address the burden of uncoordinated care and treatments for multiple physical and mental health conditions?
What we have learnt from undertaking the project: Involving groups with the end goal of producing some artwork was effective in the following ways. Firstly, it encouraged people not ordinarily asked about research priorities to voice their opinions, which then shaped a piece of artwork. This allowed us to explore concerns based on their experiential expertise that could inform and underpin future research. Secondly, the end products – the artwork – offered an eye-catching and accessible way to disseminate these potential ideas for future research.
People involved were motivated by the prospect of helping to produce some artwork; they liked the idea of contributing to this through sharing their views and experiences. We sent them a photograph of the finished artwork produced from their group discussion. We asked for their thoughts on this and on the research priority it reflected. Their feedback stressed the power of images created by the artists, which distilled their experiences. They noted how they welcomed the opportunity to share their views, and to have these turned into ideas for potential research projects. Hence, the use of art was an effective channel for eliciting the views of groups not ordinarily invited to develop ideas for research. It also allowed the research team to present and disseminate these research priorities in a visual format.
What we feel went well with the project: Working with the young artists was a positive experience. They were reliable in terms of attending meetings, providing us with updates, and asking for feedback. They produced powerful pieces of art, which are displayed below (see Figs. 2–4) and can be viewed online . We have also created a narrated video of the final artwork, with a description of what each piece reflects (www.spcr.nihr.ac.uk/news/blog/using-art-to-engage-with-people).
In conversations with these young artists about their role in the project, they expressed some initial concerns about being able to produce the type of artwork that we, as researchers, were expecting. They also said they had some apprehension about being able to reflect group discussions adequately or about offending people because they did not share the same culture. However, they commented that any concerns were allayed through regular communication with the researchers; we supported the artists via regular emails and telephone calls, to ensure that they were happy with what they were doing (see Box 2 – learning point 2). This is reflected in the following feedback from one of them:
“I feel that the organisation of the project went well…communication was good…My artwork hopefully conveys the key priorities… I have also been able to weave some of this project into my A Level, which adds another dimension to my coursework.” (E.Prior)
Both artists said they would work on a similar project if asked again:
“Yes, I have thought about issues that I wouldn’t in my everyday life and I have gained empathy for different walks of life.” (M.Viljoen).
Box 1: Learning point 1 – regular communication
The importance of regular communication with the artists was highlighted. Set up an initial meeting to discuss what being part of a project involves. Give them time to ask questions. Be open and accessible as researchers. Encourage the artist to express any concerns or queries. Offer feedback and constructive suggestions as artists sometimes questioned whether what they were producing was what the research team required or expected. We would extend this importance of regular communication to the groups involved in workshops, so they understand what the project entails, how they can contribute and are provided with access to the final artwork. We also, as a team, met once a month to ensure that the work being carried out in different settings was in line with the project’s aim, budget and deadlines.
What we feel could have gone better: Initially, we struggled to find young artists to work with us. Over the first months of the project, we contacted several colleges and schools but were unable to get past gatekeepers to invite students to be artists. We sent several emails and, in some cases, made telephone calls, without success. We eventually used work contacts, sending out a request to colleagues, asking if they knew of any young people (family members or friends) who might wish to be involved. We invited potential artists to share their work with us. If we were happy with their artistic skills, we met them in person or by phone to talk about the project and what it would involve, so they had a good understanding before committing to work with us.
Box 2: Learning point 2 – locating artists
Factor in sufficient time for locating an artist. Think about using existing contacts (e.g. colleagues, school governors). Consider alternative recruitment routes to schools/colleges (e.g. youth parliament, young people’s involvement group at a local hospital, youth groups, church groups, outreach workers).
PPI workshops took place just before the COVID-19 pandemic hit the UK and lockdown ensued. At the workshops, we discussed how we might best disseminate the artwork to targeted groups. Those present suggested this might include sending short summaries to existing groups (e.g. Young Dementia Network, College of the 3rd Age) for them to publicise (e.g. in newsletters). Attending meetings in person to talk about research was also proposed, so that people could ask questions. This was stalled to an extent by social distancing rules.
Thoughts about what we would have done differently: The groups in Oxford and Bristol were pre-existing; hence, researchers attended one of their regular meetings. Attending a venue and time when groups usually meet was beneficial in terms of not having to arrange a separate meeting and ensuring that there was good attendance. In addition, because individuals knew each other, they were comfortable discussing their experiences together. However, it meant that the researcher had less control over how long they had to talk to the group; if there were other items on an agenda this reduced the time available to discuss research priorities. In addition, the setting may not necessarily be conducive to groupwork; for example, the young onset dementia group met in a local pub, which although quiet, made group activities more difficult.
Box 3: Learning point 3 – using existing groups
Attaching the workshop to an existing group meeting facilitated set up and meant that those attending were happy to talk as they already knew each other. It did limit the control a researcher had in terms of time devoted to discussing research concerns or in setting up activities. Nevertheless, it is important to consider whether meeting in a venue arranged by researchers may mean that the needs of the team overshadow those whose views are seldom listened to, if individuals feel more comfortable talking in a familiar setting at a familiar time. This may have been the case especially for those with young onset dementia. This highlights the issue of power relations in PPI. There is sometimes an expectation that PPI contributors will ‘come to researchers’, whereby we expect individuals to fit with the setting, communication, approaches with which we, as researchers, are familiar. This is likely to exclude certain people. Democratising and distributing spaces in which we interact as part of PPI is, therefore, important. This may be encountered as inconvenient to researchers’ norms. However, overall, it can be productive and positive, enabling new and diverse groups to participate.
Sharing what we have done and learnt: Alongside the production of a blog , our narrated video (see above), and this paper, we are sharing the finished artwork with each group that was involved. An online meeting of the young onset dementia group was attended by ST, at which she showed those present (n = 8) the final picture. This led to a frank discussion about what it meant to them and how it reflected their own story in terms of the emotions and struggles encountered post diagnosis (including losing a job, social contacts reducing and poor coordination of support).
Further face-to-face communication of findings is planned later in the year in Keele and Bristol – depending on social distancing rules due to COVID-19. This is particularly important for the Bristol group, given that those present were not fluent in speaking or reading English. The community group organisers were contacted, and findings were shared with them. Their input was sought to ensure that the artwork and accompanying text was depicted in a culturally sensitive manner, and that information was not lost in translation. The organisers for this group at Bristol, and older people at the Keele workshop, expressed the desire for and gave researchers an open invitation to engage in further discussion and dissemination of findings to wider networks in the future.
To support dissemination, we held a Twitter chat to share our work and to learn from others’ experiences of using similar arts-based approaches. We advertised the Twitter chat a month in advance and sent an email about it to researchers, PPI contributors and co-ordinators, and other relevant organisations that might be interested. The Twitter chat involved an hour dedicated to discussing online the following questions: a) using artwork as a way to engage with groups about research priorities; b) creative approaches people had tried/been involved in as a part of public involvement or engagement; and c) lessons learnt from this, including anything that worked well or did not work. Ten individuals, including patients/the public, researchers and a PPI co-ordinator joined the discussion, along with five members of the research team. A snapshot of their discussions can be found in Fig. 5.
Participants (who were all researchers/PPI co-ordinators) on the Twitter chat felt that using arts-based approaches facilitated connections with audiences that might otherwise be difficult to engage in research. A few also felt that arts could be used to engage with diverse audiences on sensitive topics, as it can ease people into discussions and reduce awkwardness. It was suggested that arts can help develop ‘metaphors’ to describe complex scenarios or processes. Furthermore, arts were seen as a means to capture, unpick and identify areas of concern which may otherwise be unexplored through use of other approaches. Overall, there was agreement amongst participants that arts in involvement and engagement-based activities enhanced discussions, addressed power imbalances and facilitated further reflections. Participants noted other interactive approaches to involvement and engagement including storytelling, collage making (wherein participants can choose the materials used) and drama.
How we intend to use what we learnt from this project: We are members of the Evidence Synthesis Working Group (ESWG) (www.spcr.nihr.ac.uk/eswg), a collaboration of health services researchers and clinical academics from several universities in England, with an interest in a range of ways to synthesise evidence. We will use the artwork to propose topics for reviews. We plan to return to the three groups for PPI feedback on any review proposal that is taken forward based on priorities they identified. Those in these groups may also wish to be involved in the conduct and dissemination of findings from a related review (as PPI contributors). Other reviews we have conducted have involved patients/the public [15–16]; it was successful in helping us to think about data emerging from a review and in providing us with feedback on the presentation and interpretation of its findings.