Young Person Face IT

Online support for young people with conditions or injuries affecting their appearance

Parents

Information for Parents


What is YP Face IT?

YP Face IT is a self-help programme (similar to a self-help book with engaging interactive features) developed by the Centre for Appearance Research (CAR) at the University of the West of England, Bristol. It’s for 12-17 year olds who are struggling to manage the consequences of having an appearance that they, or other people, consider unusual or different. Lots of conditions and injuries affect appearance, including skin and craniofacial conditions, birthmarks and hair loss, scarring or limb loss following an accident or treatment for a disease.

All young people worry to some extent about their appearance. They live in a society that typically values 'looks' over other qualities and are constantly exposed to media images of 'perfect' faces and bodies. These are often edited (airbrushed) to remove blemishes, or create the perfect eyes, nose or cheekbones. These images give young people a view of attractiveness that is not realistic or achievable.

Added to this pressure to look 'perfect', young people are at a stage in their lives when changes to their bodies and to their social and romantic lives makes them sensitive to anything that sets them apart from their peers. Life can be especially difficult for those who feel they look 'different' or who have an appearance that attracts staring, inappropriate questions or teasing. Although many manage very well, it's not uncommon in these circumstances for some young people to lose confidence and feel shy, anxious and unhappy.

CAR and organisations such as Changing Faces are doing all they can to raise public awareness and the importance of acceptance and not judging people on the way they look, but they can't change society overnight. To help young people now, they need support and skills to manage other people's reactions and to feel more confident. With the help of young people with a variety of appearance-affecting conditions, YP Face IT was developed by specialist psychologists to provide immediate advice and support at home. It includes advice from young people with similar experiences. It uses interactive and learning activities to help manage difficult thoughts and feelings and unwanted attention from others. Illustrations and films teach social skills to help develop friendships and relationships with others, and problem-solving skills to achieve goals that are important to your child. YP Face IT is a secure website for registered members only. Members are provided with a personal login and password and the program uses two-factor authentication (to access YP Face IT members need to use their password and a PIN code sent via email or SMS).

The program has 7 sessions, with homework activities. Ideally, young people complete sessions consecutively one per week. Sessions take between 30 to 45 minutes to work through, but young people can work through the sessions at their own pace, or take breaks, and can choose to listen to a young person reading the text if they prefer.

We know young people can be busy with schoolwork and other commitments. To help them plan a convenient time to complete the next session they can set a date and time within YP Face IT to receive e-mail or text reminders. These will be 2 days and 2 hours before their scheduled session. Six weeks after the last session the young person will receive an automated text/email reminding them to complete Session 8 – which is a simple quiz to help them remember what they’ve learnt.

Studies with young people, health professionals and parents have shown that YP Face IT is needed, safe and user friendly with highly relevant content, and potential to improve psychosocial wellbeing. Large trials of translated versions of YP Face IT are currently underway in Norway and the Netherlands. Some hospitals now include YPF within their psychology service. At these, clinical psychologists will collect data to evaluate its effectiveness in comparison to other support options over the next couple of years.

So far, tests of YP Face IT show that the more YP Face IT young people complete the more helpful it is.

We would now like to increase access to YP Face IT beyond hospital settings by making it directly available to parents. Parents can either:

• supervise their child as the child works through the programme
   or
• look through the information to learn more about the common difficulties children might experience and gain tips on how they might support their child.

Because young people will be practicing new skills that might be challenging, and often need motivation and self-confidence to engage in self-help, either a health professional or parent is required to supervise their use of YP Face IT. Parents do not require any training to do this.

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Supervising my child’s use YP Face IT

Please read the information below to help you decide if YP Face IT is suitable and, of course, please discuss it with your child it to see if they would be interested. Information for young people about YP Face IT is on the home page (play the videos or click on About!). If you decide to try YP Face IT, you will need to consent to supervising your child before registering to gain access to YP Face IT sessions.

What does supervising involve?

Although YP Face IT was designed as a positive and supportive programme, some young people could find it challenging at times. The programme refers to typical appearance-related concerns young people experience. For example, being upset by staring, questioning and teasing, and anxiety in social situations. It also asks young people to reflect on their own appearance worries and difficulties and set themselves small challenges to improve their confidence and self-esteem.

Supervising involves deciding whether the programme is suitable for your child, taking responsibility for monitoring your child’s wellbeing as they use YP Face IT and helping them with any questions or issues they may have in response to activities within the programme. We have provided guidance on ways you can help your child, click here to download the printable PDF.

You know your child best. If you feel that YP Face IT is not helpful, the young person should stop using it. In addition to seeking support from your GP, other sources of support are listed within the links tab on the homepage.

Is YP Face IT suitable for my child?

YP Face IT is for 12-17 year olds with any appearance-affecting condition, treatment side effect or injury, who are in any way distressed by their appearance or experiencing difficulties with staring, inappropriate questioning, teasing or bullying because of their appearance.

It is not for young people diagnosed with clinical depression, post-traumatic stress disorder, an eating disorder, or those who have learning difficulties that prevent them from understanding the material within the programme. If your child’s appearance was altered by an injury (e.g. a burn), we suggest you wait until 12 months has passed since the injury before using YP Face IT. It is up to you, and your child, to decide if YP Face IT is suitable. Please carefully read the official disclaimer below.

Disclaimer

Recipients should not rely on the material or information in this website as the basis for making any business, legal, personal, financial or other decisions. Recipients should consult an appropriate professional for specific advice. University of the West of England, Bristol make no representations and give no warranties as to the content of the material or the information contained in the website for any purpose. Any reliance which Recipients place on the material or information in this website is strictly at their own risk. This website is designed for use by young people with appearance-related distress ONLY under the supervision of a parent/carer or an appropriately trained health professional.

Evaluating YP Face IT

Because this is the first time we’ve provided parents with the opportunity to supervise their child’s use of YP Face IT, it’s important to monitor the effectiveness of the programme.

There are quizzes within YP Face IT that young people are invited to complete during the programme that are repeated in Sessions 7 and 8. They are an important part of the programme, included so you and your child can gain insight into their progress. Researchers at CAR also want to use these data to determine whether YP Face IT is helpful and will share this information with researchers and academics in the field via publications and conference presentations.

All data used for evaluation purposes will be anonymised – no one will know it is related to you or your child. We would also like to get feedback on your experiences of supporting your child. At the same time that your child receives a reminder to complete Session 8, we will invite you to complete the brief parent’s questionnaire on the website. All information that helps us to evaluate YP Face IT will contribute to the design of effective support tools for young people distressed by an appearance-affecting condition. However, it is up to you and your child to decide whether to complete the quizzes/questionnaires, you can still view the material within YP Face IT if you choose not to complete them.

If you would like any more information or have questions about YP Face IT please email car@uwe.ac.uk

Use of personal data

If you choose to use YP Face IT, you and your child will need to provide consent for the collection and safe storage of your personal data. Please carefully read the YP Face IT privacy notice below.

YP Face IT Privacy Notice

The personal information collected on this website will be processed by the University of the West of England, Bristol (the data controller) on the basis of your consent to do so and in accordance with the terms and conditions of applicable data protection laws. We will hold your data securely and not make it available to any third party unless permitted or required to do so by law.

1. Purpose for collecting the information and to whom the information will be disclosed.

• Personal data (your names, emails, mobile telephone numbers, child’s age and appearance-affecting condition, country of residence) will be collected via the website and used to set up a personal account with an individual login, send email/text automated reminders, and provide researchers at the Centre for Appearance Research (CAR) with information about who is using the programme. These data will be viewed by the young person and parent or health professional supervising the young person and a CAR researcher.

• Responses to questionnaires embedded within the intervention (quizzes) will be used to promote the young person’s insight into their strengths and areas which they need to focus on within the programme. These data will also be used to indicate progress and to permit researchers to evaluate the effectiveness of the programme. These data will be viewed by the young person and parent / health professional supervising the young person and a CAR researcher.

• The young person will complete an online homework diary that will record their progress, challenges and responses to activities. This can be accessed by the young person and parent or health professional supervising them and a CAR researcher.

2. How long the information will be kept/when it will be destroyed.
All data will be stored for 5 years after you register for YP Face IT, and then will be securely deleted.

3. Where the information will be stored and how secure it will be.
The Data will be stored on Dataphiles’ co-located servers in their racks at a secure facility on Manchester Science Park. Backups are taken nightly and stored on a NAS device in the rack and then replicated across secure VPN to their office in Leeds so that Dataphiles can get the system back up and running in the event of a disaster. Both locations are highly secure (the data centre has multiple levels of security in place). Our data protection policy ensures that only staff authorised to work with the data get access to it. No data is taken off site on laptops or memory sticks.

4. Your rights
You have a number of rights in relation to your personal information such as the rights to withdraw your consent and access your information. To find out more about these rights please contact our Data Protection Office (dataprotection@uwe.ac.uk).

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