Probably along with many others, if I were cut off for several weeks from stories, music, paintings, photos and dramas (face-to-face or on paper, broadcast or online), my wellbeing would be affected. It is a sobering thought that some social care users with minimal support may be in this position. More positively, knowledge continues to grow about what can, and does, connect health and care research, the arts and involvement.
However, this is not straightforward. Connections can be varied and complex. Attitudes widespread in society and the research world can further complicate this. The arts (as well as involvement) may be seen as softer, more human-focused and less medicalised than much of what goes on in the health field. There is some truth to this: for instance, people may sometimes be readier to agree to interventions using cultural forms with which they are comfortable than to prescribed medication or surgery, especially if these carry greater physical risks.
On the negative side, both arts-based approaches and involvement may be treated as if less rigorous than, say, randomised controlled drug trials run by ‘objective’ researchers without lived experience of what they are investigating. In response, research teams may be under pressure to over-simplify the benefits of these. Meanwhile, amidst cuts, when the arts may be treated by some influential figures as an unnecessary luxury for people on low incomes or in underserved communities, there may be pressure to ‘prove’ their value in simplistic ways.
Arts-based activities sometimes do bring swift benefits to people with high health and social care needs, or at risk of developing these (to take an everyday example, singing a favourite song to, or with, someone with dementia). But the arts may not only soothe, energise or illuminate. They can also disturb, even confuse. And there may not always be instant or single effects; there may be ripples rather than a splash, or both.
At a basic level, the arts can be a hook drawing in people who might be interested in being involved in research, portraying what is beautiful or fascinating about an area of knowledge and awakening curiosity. And there can be involvement in communicating research findings (or what it is like to be involved and how to make this accessible) in engaging ways, for example through videos or cartoons.
Working together creatively, sometimes with the aid of an artist from outside a research team, can help to deepen bonding and mutual understanding between contributors and researchers. There can be occasions of shared enjoyment and strengthening of relationships.
Patients, service users, carers and the wider public may be involved in research on the effect on participants’ health of work created by others, for instance care home residents’ reactions to tapestries reflecting aspects of their cultural heritage. Or involvement may be central to creating or sharing work, such as poetry written by users of a community mental health service in a workshop they have helped to organise. The Photovoice participatory research approach can open up important conversations on what might be improved. While co-produced or user-led projects may work well in some cases, this may not be ideal always and for everyone: time, preferences and skills vary.
Sometimes different types of involvement may be combined. For example, two or three children might assist a research team to draw up questions for patients on a children’s ward, who will be interviewed before and after they have fed in ideas to an artist due to paint a colourful mural. The young advisors might then have an input to the contents and design of a project report.
In addition to research examining whether specific arts-related activities benefit people with specific health issues in particular ways and, if so, how much, the arts can also be used to explore what it is like to have a particular condition (or care for someone who does). This may include experiences in health and care services – or other aspects of people’s lives, conveying that being a service user does not define a person. Or factors affecting community health and wellbeing may be looked at from the perspective of members of those communities, even if their views and experiences are far from uniform.
For people who are isolated, economically disadvantaged or in minorities facing discrimination, the arts may bring them together in ways that promote public health – not just by changing them but also others’ perceptions and practices. The power of photography, film and story may wake up professionals and decision-makers to what they had overlooked before; though systems might still get in the way of positive change.
However the ways in which the arts and research may be combined are not always positive or easy to assess, however well people are involved.
This may seem obvious. For example, while learning a musical instrument may help some stroke survivors regain motor skills, as well as giving them pleasure, practising loudly at 2am in a block of flats would probably not be great for neighbours’ health! But there can be more subtle issues and tensions.
Activities which are mainly beneficial, may nonetheless, like medication, have some unwanted ‘side-effects’ or ‘interactions’. Earlier in 2023, I attended a powerful survivor-led exhibition at the Institute of Psychiatry, Psychology & Neuroscience, of art linked with trauma. I was reminded that involvement in exploring difficult truths can be costly, even if silence is ultimately worse.
Also a piece of work may affect the creator(s), viewers, readers or listeners in varying ways over years or even decades, evoking different thoughts and feelings in different contexts. So, while a study may identify some of the health-related effects, this may not offer a complete and final picture. And paradoxically, too great a focus on precisely measuring impact may skew work away from – or lead to overlooking – what might make most difference.
It is worth noting too that the arts can occasionally be used to obscure the truth and even cause harm. Dodgy research findings may have more influence if aesthetically presented and with a few quotes from carers or service users. Worse still, artistry and pseudoscience combined have been used to draw people into acts which drastically worsen inequalities and damage public health.
Yet arts-based approaches and research involvement together can engage people’s imaginations and emotions in ways that illuminate, not deceive – and encourage them to act.