Helpline 07939 046 030

Act it Out Prototype App Trial

20 August 2020

Researchers from the Centre for Appearance Research at UWE Bristol are looking for people with NF who are experiencing psychological / social difficulties related to looking different or ‘visible difference’, to test ACT It Out, a prototype mobile app. 

ACT It Out

has been designed to help its users do more of the things they care about in life, and to reduce the impact of appearance concerns on their daily life.

UWE Bristol would like to understand what it is like to use ACT It Out: specifically, how helpful it is, how much participants like using it, and if it is doing what it is designed to do.

The app programme, “ACT It Out”, is a 6-session course, based on an established psychological approach called Acceptance and Commitment Therapy (ACT). It has been co-designed by UWE Bristol researchers together with people who have visible differences and charities (led by Vitiligo Support UK), specialist psychologists (led by Dr Olivia Donnelly from North Bristol NHS Trust) and mobile app experts.

For more information and to register your interest please visit go uwe.ac.uk/ACTItOutInterest Thank you! 

It is designed as a ‘low-level’ intervention, meaning it is self-guided and does not involve real-time support from health professionals. ACT It Out is not designed to take the place of professional face-to-face talking therapies, and is not intended for people experiencing serious mental health difficulties. It has a reading age of 12+.

UWE Bristol have now finished producing a prototype mobile app (using the Qualtrics® platform), which we are ready to pilot with up to 40 adults with visible differences. They are very keen to recruit participants with a wide range of appearance-affecting conditions, including NF.

 Who can take part?

You can take part if you:

  • Are aged 18 or older AND
  • Are based in the UK AND
  • Have a visible difference AND
  • Are experiencing psychological and/or social difficulties to do with concerns about your visible difference. Common difficulties are social anxiety and/or withdrawal from social activities, receiving unwelcome attention from others, low mood, low self-esteem, body image concerns; (you may experience one, a few, or all of these difficulties) AND
  • Own a smartphone (Apple, Android or Windows) with enough data allowance and/or Wi-Fi to regularly access the internet AND
  • Have experience using smartphone apps AND
  • Are able and willing, in principle, to commit to completing (a) six weekly sessions, each lasting around 30-mins (though they can be done in pieces) and (b) brief activities between each session (2-10-mins daily). Taking part does not mean you have to complete the entire course as completion is entirely voluntary

Unfortunately, because of who ACT It Out is designed for, you are not be eligible to take part if you:

  • Have developed a visible difference as the result of a traumatic injury in the past 6 months OR
  • Are experiencing marked distress / a mental health crisis, such as psychological trauma, severe low mood, suicidal thoughts, self-harm, or are feeling disconnected from reality OR
  • Are currently going through any talking therapy or expect to be within the next 3 months OR
  • Your primary appearance concerns are to do with weight and/or eating.

 

By getting involved with the Act it Out prototype you may experience benefits to your own personal psychological and/or social benefits to your daily life. Not only that you will help the app become more widely available, potentially helping many others around the world who have a ‘visible difference’ to get specialist help.

If you are interested and would like more information, please email Fabio.zucchelli@uwe.ac.uk or call Fabio on 0117 32 83882 (9am-5pm Monday-Friday).

Nerve Tumours UK is not responsible for any data collection or content of the project.  

Filter News

Filter by Date
Category
Reset

Challenge 100 – Everyone’s invited

Take on 100 of anything you can think of and fundraise to support our NF community!

Read More

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

Read More

Jo’s 160 Mile walk for NTUK!

Read Jo's Story as she prepares to take on a 160 mile epic walking challenge for Nerve Tumours UK.

Read More

A very “Happy Easter” to you all!

A message from Karen, our Charity Director, wishing you all a very Happy Easter!

Read More

Stuart & William’s Story: Turning blue for World NF Month

Check out Stuart & William's creative fundraiser for World Neurofibromatosis Awareness Month

Read More

Coordinated Care of Rare Diseases Study at UCL

Find out the results to the Coordinated Care of Rare Diseases Study at UCL

Read More

Who is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption

Find out the up to date information on face mask rules in your area

Read More

Carers Rights Day. Diane’s Story

Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK

Read More

NF1 PN Impact on Patients’ and Caregivers’ Lives

If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support

Read More