29 July 2020
This year’s VTCT Foundation showcase took place, as many other events this year have been - online. The event was hosted by the Centre for Appearance Research (CAR) at UWE Bristol; the world’s largest research group, focusing specifically on the role of appearance and body image in people’s lives. Members from the Appearance Collective charities tuned in to hear the latest updates from a collection of projects funded by the VTCT Foundation’s small grants scheme.
We heard from three charities that received funding and undertook research projects: Vitiligo Support UK, Headlines Craniofacial Support UK & Microtia UK. All three charities provided valuable insights into different appearance altering conditions or visible differences, and the key research they undertook to understand their community better.
The second part of the programme focused on CAR’s use of Acceptance Commitment Therapy (ACT), a mindfulness-based behavioural therapy, in a range of new online support tools. Nick Sharratt, Research Fellow at CAR, has been working with clinical psychologists to design a range of online tools and support materials for individuals with visible differences, including those with Neurofibromatosis.
The ACT based programme focuses on an individual’s values and commitments, which is achieved by; being present, acceptance, defusion & self, as context.
The project aims to create a collection of resources for anyone with visible difference to access and help them deal with any challenges they may face.
CAR is also working in collaboration with UWE Bristol to develop an app to help reach even more people with visible differences and provide support. The app has been developed using workshops of user representatives, getting vital feedback on how best the app can be developed to suit varying visible difference needs, such as enlarged icons for reduced vision & having real life video stories from people with visible differences throughout the app to engage with the user.
Currently in prototype stages of development, they are very keen to recruit participants with a wide range of appearance-affecting conditions, including NF. For more information, ACT it OUT Prototype.
The final part of the showcase programme talked specifically about the impact of COVID-19 & lockdown on those with a visible difference. Research found that in the beginning of lockdown there was a mild sense of relief from the community as they had reduced social interactions and many already dealt with previous experiences of isolation, often due to surgery recovery.
However, with the increased use of zoom and video conferencing software this has led to a rise in concern amongst people with visible difference, due to more focus on the face in video calls than normal social situations. CAR’s findings also showed increasing levels of anxiety towards returning to normal and the new rules of wearing face coverings in public.
More research is needed to understand whether there is a longer-term impact of Covid-19 on people with visible difference, including those with Neurofibromatosis, for example, when going out in public more, as the situation eases.
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