Helpline 07939 046 030
Freephone 0300 102 17 22*

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

Jensen’s NF1 story

Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future

Read More

TSL’s Charity of the Year

Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie

Read More

Online – Accessibility – We have the tools to help!

The NTUK website has accessibility tools to give you easier access to online & digital content

Read More

My life with Pheo

This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis

Read More

Resources Survey: Initial Diagnosis 2023

We received many responses to our survey asking what would you have found helpful after your initial diagnosis

Read More

Community Fundraising Call Out

Calling all community fundraisers - we need your help, please!

Read More

Owen family Awareness Event

The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board

Read More

Running for Wilbur

Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1

Read More

Alice’s NF studies

Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK