Professor Diana Harcourt | Centre for Appearance Research
Professor Diana Harcourt from the Centre for Appearance Research (CAR) at the University of the West of England in Bristol (UWE) explains how its latest four-year VTCT Foundation-funded programme of research will help deliver more evidence-based resources that will support the work of the Appearance Collective and benefit people whose lives are impacted by visible difference, including those who are often under-represented in research.
How does the new research link with your previous five-year funding programme?
The previous grant that we were awarded in 2017 allowed us to put in place a priority-setting exercise with charities within the Appearance Collective. In that first stage we were especially keen to identify the key issues they were facing which research could help them with, while also helping to develop the research leaders of the future.
This second stage follows directly on, building on our earlier grant and allowing us to really focus on two key streams of work. For example, in stage 1 we did a series of background studies that informed the development of new resources and now, in stage 2, we have the chance to do the studies that evaluate the effectiveness of those interventions – and this is the really exciting part.
One year into the four-year programme, what can you share about your findings so far and your next priorities?
Our first year has been focused on getting the right team in place, from admin support to new PhD students. At the same time, we’ve also been meeting with our collaborators and conducting a large survey to better understand the experiences of adults, young people and parents to ensure we’re clear on what kind of support those impacted by visible differences need, and in what format – including podcasts, web-based resources, e-books and apps.
Our aim is always to contribute to filling a research gap and meeting the priorities that Appearance Collective groups have highlighted as important to them, so that we can give them evidence-based information and practical tools. We’re also working on how to better identify individual support needs so people can be signposted to the most appropriate help for them.
Over the next four years we will develop more evidence-based resources to share with the Appearance Collective charities, as its through that close collaboration that we can make the biggest difference together. We’re also working to develop social media resources that promote acceptance of the diversity of appearances and reduce stigmatising attitudes, and we anticipate these will be especially valuable.
How will your grant make a difference for Appearance Collective charities?
Ultimately, we want our work to help the Appearance Collective charities support anyone affected by visible difference, for example helping everyone have access to robust, user-focused support and resources which helps address their individual needs. Everyone can benefit from a metaphorical ‘toolbox’ of support including, for example, contact details of support groups, online resources relevant to their worries and information about treatment options. The idea is that, whenever they’re struggling, they know where they can go at that point in time to access the help they need. Our work will increase the range of evidence-based resources in those toolboxes.
Of all our resources, our e-book to help parents be better placed to support their child is the furthest down the line and we’re currently recruiting parents into a trial to evaluate the effectiveness of it. Also, with our previous research having showed that many people with visible differences have concerns around romantic relationships and intimacy, but that those psychosocial needs aren’t currently being addressed, this has been another key area of activity for us and we are about to launch a study to evaluate a series of podcast episodes specially developed to help with these issues.
How do you see CAR’s role in supporting the visible difference sector?
It’s always great when charities in this field hear about our work and are then interested in joining the Appearance Collective, such as when we recently met the CEO of the Limbless Association. For us, building relationships with the Appearance Collective charities is really important and rewarding, and helps us to make the biggest difference.
Most of all, we always put people with lived experience at the heart of the research process, and we couldn’t do any of our work without their input. Ultimately, the research we do is to benefit them, so it’s a very collaborative process as we use learnings from our previous studies and from their direct lived experiences.
What we’re doing in this programme fits well with our ‘applied research’ ethos to ensure we have a practical impact, while also enabling us to grow future research leaders in this field. Making a real difference is what gets us out of bed!
We’re really excited to see our new resources come into use, to making these available as soon as studies show they are effective, and to helping visible difference charities understand how the work they do tangibly helps the people they set out to support.