In this post Dr Abigail Easter, senior postdoctoral fellow in improvement science at King’s College London and member of the CLAHRC’s maternity and women’s health theme reflects on the development of a new animation designed to enhance support for women with eating disorders during pregnancy.
Every day there seems to be a new or updated clinical guideline published outlining recommendations for healthcare practice. The National Institute for Health and Care Excellence (NICE) has published over 190 clinical guidelines and several more are in in development. Evidence-based guidelines have the potential to improve patient care, but keeping up to date with all the relevant guidelines can be challenging in busy NHS settings.
There is increasing recognition of the role patients and their families play in facilitating the uptake of clinical guidance. Over the last year I and my colleagues in the maternity and women’s health theme at CLAHRC South London have been exploring whether arts-based co-designed training, focused on the development of an animation, could offer a useful approach to implementing the clinical guidance for the care of pregnant women and mothers with eating disorders.
In this sea of clinical guidelines, why focus on eating disorders? Why pregnancy?
During my PhD, I began researching the impact of eating disorders on pregnancy and motherhood. I was struck by not only a lack of previous research in this area, but also by an unspoken stigma that surrounds the topic. I frequently spoke with women who felt too ashamed to speak about their illness, and healthcare professionals who said they rarely saw women with eating disorders during pregnancy or that it was unlikely to pose a problem. Yet the research suggests otherwise.
When we asked pregnant women at King’s College Hospital to complete an anonymous questionnaire, we found that 7.5% of these women met diagnostic criteria for an eating disorder. Although anorexia nervosa and bulimia nervosa were found to be relatively rare during pregnancy (around 1%), binge eating disorder and other specified feeding and eating disorders (OSFED) were not uncommon, affecting 1.8% and 5% of women in early pregnancy. These forms of eating disorders are less talked about, and so it is unsurprising that clinicians were also less familiar with these illnesses or how they can affect women during pregnancy and motherhood.
Eating disorders during pregnancy can also increase the risk of early miscarriages, premature birth and impact on fetal growth. As such, clinical guidelines recommend enhanced support for women during pregnancy and following birth. But several barriers exist that prevent these guidelines from being implemented in practice. These predominantly centre on a lack of training and awareness about eating disorders, and in turn, the impact they have on pregnancy and the type of support women need. However, healthcare professionals’ attitudes towards eating disorders, stigma and taboo also play a role.
What can we do, as researchers, to start to break down these barriers?
I was delighted when, alongside co-applicants Amanda Bye, Nicola Mackintosh and Jane Sandall, we received funding from The Health Foundation’s Evidence into Practice awards to tackle some of these barriers. The Evidence into Practice awards are designed to help research teams bridge the gap from academic research findings into actionable information. Building on the success of the REASSURE project, led by former King’s Improvement Science fellow Nicola Mackintosh, we set out to use an arts-based co-design approach, aimed at increasing healthcare professionals’ knowledge about eating disorders, their impact on pregnancy and motherhood, and best practice for care.
What we mean by arts-based ‘co-design’
Although there is much variability in the use of the term ‘co-design’, a central theme of co-design is that key stakeholders (eg patients and healthcare professionals) take an equal role in the design of a project and the process focuses strongly around designing services or products that are based on patient experience. Given the competing training needs for healthcare professionals we adopted an ‘arts-based’ approach, developing a strong collaboration with a team of animators to help us to deliver complex healthcare messages through a medium that was both easily accessible by a wide range of professionals and engaging.
From the very start of the project, we established an advisory group that consisted of key stakeholders from charitable organisations, such as Beat and the Institute of Health Visiting, healthcare professionals and mothers with eating disorders. We conducted a series of co-design workshops with mothers with lived experience of an eating disorder, and healthcare professionals, including midwives, health visitors and GPs. Workshops and informal discussions were held at key points during the animation development as part of an on-going process to develop and refine the animation script and imagery for the animation, to ensure it was sensitive and meaningful to both clinicians and women with eating disorders.
The animation and online resources were launched via social media during Eating Disorders Awareness Week at the end of February and as part of a training event at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London. In the past two months the resources have had over 70,000 impressions on Twitter and the animation and website have been viewed almost 2,000 times.
Is art-based co-design an effective approach?
As a researcher, a fundamental question remains: ‘How do we know if these tools are making a tangible difference to the care that women with eating disorders receive during pregnancy and early motherhood?’ In the next phase of the project we plan to explore further the use and acceptability of the animation and training resources. However, measuring the impact of these types of projects on outcomes for patients is not straightforward and a greater understanding of how to do so is certainly needed.
We also wanted to engage with mothers with a range of eating disorders in the co-design process, but were unable to involve any women with binge eating disorder. We feel these women’s voices are missing from the animation. Conveying complex healthcare messages in a short animation is also challenging. Over five hours of audio and three clinical guidelines were edited down to five minutes, so a concern remains that some of the nuances and range of women’s experiences inevitably will get lost in translation.
Working in collaboration with a number of different organisations and individuals has been an incredibly valuable and rewarding experience. We hope the animation will serve as a catalyst to raise awareness and understanding of how eating disorders can affect women during pregnancy and early motherhood and help women receive greater support in the future.
The animation and further resources for health professionals and women are freely available to access and download at www.eatingdisordersandpregnancy.co.uk