Young Person Face IT

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

Parents

What is YP Face IT?

YP Face it is a 7 week online programme of support developed by the Centre for Appearance Research (CAR) at the University of the West of England, for young people aged 12-17 who are struggling to manage the consequences of having an appearance that they, or other people, consider unusual or different.

A 'visible difference' can result from a skin condition (e.g.: vitiligo, acne, ichthyosis or eczema), medical treatments (e.g.: chemotherapy), a scar resulting from an accident, surgery or burn, or a condition that has been present from birth such as a cleft lip or neurofibromatosis.

All young people worry to some extent about their appearance. Adolescents exist in a youth culture that often values 'looks' over other qualities and in a society that constantly exposes them to media images of 'perfect' faces and bodies. These are often edited (airbrushed) to remove every blemish, or to create the perfect eyes, nose or cheek bones. 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 also at a stage in their lives when rapid changes to their bodies and to their social and romantic lives makes them very sensitive to anything that sets them apart from their peers. For those who feel they look 'different' or who have an appearance that attracts negative attention, such as staring, inappropriate questions or teasing, life can be especially difficult. It's not uncommon in these circumstances for young people to lose confidence and become shy, anxious and unhappy.

CAR and organisations such as Changing Faces are doing all they can to raise public awareness of visible differences and the importance of not staring and judging people on the way they look, but they can't change society overnight. In order to help young people now, it's important that we give them skills to manage other people's reactions and feel more positive about themselves.

With the help and support of young people with a variety of appearance-altering conditions, YP Face It has been developed by psychologists and counsellors with an expertise in providing specialist support. It uses a variety of interactive and learning activities to help young people to feel more confident, think more positively and manage unwanted attention. Illustrations and films teach social skills to help develop friendships and good relationships with others, and to develop problem solving skills to help set and achieve goals.

We believe that online support, that can be accessed at home and at a time that is convenient, might be particularly appealing to young people - particularly to those who are reluctant to visit a hospital or health centre and see a 'therapist' face-to-face.

The adult version of this programme, Face It, has already been subjected to scientific testing (a randomised control trial) and is successful in improving self-esteem, confidence and anxiety amongst adults with visible differences. It will soon be made available throughout the NHS.

We are now subjecting YP Face It to the same testing procedure. We need to be sure that it is user-friendly and improves the quality of life of young people with a visible difference before making it available throughout the UK. If you or your child is interested in joining a study to test YP Face IT please read the Parent Information Sheet below.

YP Face IT Study:

Information for Parents and Carers of Young People

Please read the following information carefully and feel free to talk to others about the study if you wish.

Please don’t hesitate to ask us if anything is unclear or if you would like more information and take your time deciding whether or not you wish to take part.

Dr Heidi Williamson and Professor Diana Harcourt at the Centre for Appearance Research are responsible for this study overall.

If you need to contact us about the study please use the following details in the first instance:

Claire Hamlet
YP Face IT co-ordinator
Centre for Appearance Research,
University of the West of England, Bristol
Tel: 0117 3283513 or E-mail claire.hamlet@uwe.ac.uk

The YP Face IT study in brief….

If you and your child are happy to take part:

  • One parent or carer from each family takes part, for just over one year.
  • You will be asked to complete questionnaires about your child, how they are and what kind of things they do, at the start, in the middle, and at the end of the study.
  • We will ask you to keep a record of how often you need to contact health and support services for your child and any work/school or social events you or your child have missed.
  • Three months into the study, some parents (not all) will be asked for more information about what it’s been like being in the study so far.
  • After a year, some parents (not all) will be asked more about what it was like being in the study.
  • Your child will take part, for just over one year.
  • Your child will be allocated to receive the YP Face IT online support programme and usual care or to receive usual care only (to act as a comparison).
  • Your child will complete questionnaires about how they are and what kind of things they do at the start, middle and end of the year.
  • Three months into the study, some young people (not all) will be asked for more information about what it has been like being in the study so far.
  • After a year, some young people (not all) will be asked more about what it was like being in the study.

What is the purpose of the study?

YP Face IT is for adolescents with any condition, injury, or treatment that has resulted in an altered or distinct appearance - what we refer to as a ‘visible difference’. There are lots of conditions and injuries that effect appearance including: skin and craniofacial conditions, birthmarks, hair loss, scarring or limb loss following an accident or treatment for a disease.

Although some young people manage well, some can find living with a visible difference difficult. They may worry about the way they look or be upset by staring, teasing, bullying or being asked questions about why they look different. This can affect their confidence and self-esteem. In developing YP Face IT, we have worked closely with young people, expert psychologists, and many doctors and nurses caring for adolescents with conditions that affect appearance. They have reviewed YP Face IT and now believe it is important that we test it to see if it helps.

YP Face IT is for 12 - 17 year olds. It has 7 sessions, one to be completed each week. Each session takes 40-50 minutes to work through. Within the sessions there are a variety of learning activities, illustrations, films and advice offered by other adolescents with a visible difference. Six weeks after the last session the young person will be asked to complete a brief quiz to help them remember what they have learnt. Young people work through the sessions at their own pace and can choose to listen to a young person reading the text if they prefer. YP Face IT has a discussion forum where only the young people who have joined the study can share or receive advice. This forum is moderated by the research team during the working week.

This study is an important first stage (a feasibility study) to help us plan a much larger study which will find out if YP Face IT really helps young people. For example, in this study we will collect information about the best way to recruit parents and young people and how easy it is complete YP Face IT and complete questionnaires about whether it makes a difference.

We are looking for 60 young people to take part in the study. Your child may like to help if:

  • They are aged between 12 and 17 and have a condition or injury that effects their appearance
  • and
  • They are worried about their appearance or are experiencing difficulties with teasing or bullying.

YP Face IT is not suitable for young people who have been diagnosed with clinical depression, post-traumatic stress disorder, an eating disorder, or who have learning difficulties that prevent them from understanding the material within the programme. If you are unsure whether your child is eligible to take part please contact us.

For each young person who decides to take part we are also inviting one of their parents or other carer (referred to as parent in this information) to take part too. In deciding who this will be, please remember that they need to be able to take part in the whole study described below.

Do we have to take part?

No, it is up to you and your child to decide. You can also discuss the study in more detail with Dr Heidi Williamson who is leading the study or Researcher Claire Hamlet (contact details below).

Your child will be given an easier version of this information so that they can fully understand the study and understand they really do have a choice. If they want to take part they will be offered a form to sign to say they agree to take part. If they are under 16 you will have to give your consent too. If you or they do not want to take part, it will not impact on any care or support you or they receive now or in the future. If you choose not to take part we may ask you to help us understand why, so we can improve the study if necessary. You do not have to tell us why, it is your choice. If you and they decide to take part, please keep this information sheet.

What will happen if we take part?

Once young people have joined the study they will be allocated to receive care as usual plus the YP Face IT online programme, or to continue receiving just care as usual to act as a comparison. The diagram below helps explain this study.

Diagram

To make sure we do not influence the results, a computer programme will allocate young people to the YP Face IT group or usual care group. Everyone has a similar chance of receiving YP Face IT or not.

Questionnaires and forms

Every young person in the study will be asked to complete a questionnaire about how things are going, at the beginning of the study, 3 and 6 months into the study and then at the end of the study. These questionnaires will be completed online and take no longer than 30 minutes. Young people will be given vouchers to thank them for taking the time to complete the questionnaires at 3, 6 and 12 months.

Parents will be asked to complete questionnaires about how things are for their child at the beginning of the study, 3 and 6 months into the study and then at the end of the study. These questionnaires will be available to complete either online or in a paper format, if you prefer, and take no longer than 30 minutes. The questionnaires give us information about your child’s quality of life, health, activities and well-being. They are important because we want to investigate if the YP Face IT programme is helpful.

We will also ask you to keep a record of how often you need to contact health and support services for your child’s appearance-related issues or concerns, details of any support you receive, any extra travelling or expenses you have had related to these, or any work/school or social events you or your child have missed as a result. We need this information to see if there is an effect on how much families use healthcare resources. To help you remember these we will supply you with a log book.

Accessing GP records

We think there may be extra costs to families when a child has a condition that causes appearance concerns. We want to work out whether offering YP Face IT makes any difference to these costs or how families need to use health services. We will do this using the information you gave us in the questionnaires. If you joined the study via your GP we will also do this by checking back through your child’s GP notes. This way we can work out whether we need to ask parents in the bigger study to fill in questionnaires or whether we can find all we need just from the notes.

Telling us about what it’s like being part of the study.

Whether your child receives YP Face IT or not, we will invite some young people and parents to talk to us about what it is like being part of the study. This will be 3 months into the study and at the end of the study. This will be via telephone interviews conducted by Claire Hamlet who is experienced in working with parents and young people. Interviews will be arranged at a time convenient for you. We will record these interviews and we expect them to take no longer than 20 minutes.

The YP Face IT group

Young people allocated to complete YP Face IT, will be provided with an individual username and password so they can access and complete YP Face IT at home on a computer. They will be asked to complete one session per week.

We know that young people can be very busy with school work 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 and receive automated e-mail or text reminders 2 days and 2 hours before their scheduled session. They can select for these reminders to be sent to parents too.

During each session your child will be asked to complete a number of simple tasks to help them practice new skills, for example, how to manage comments or teasing about their appearance, how to develop their social skills to feel more confident around peers or new people, and how to set and achieve goals. Occasionally they will be asked to write in an online journal to discuss their experiences of learning these skills. At the end of each session they will also be asked to complete short learning activities before the next session. They will have a week to complete these activities. If they forget to do them we will send a gentle reminder in an e-mail or text. Anything they write is protected by their password and is confidential. Only your child and the research team will be able to see their answers.

If your child has questions or concerns about the tasks within YP Face IT, they can send their queries to the research team via e-mail. We can respond to these during normal working hours. We will provide parents with simple guidelines on how to support their child as they work through YP face IT. We will monitor online diary entries and responses to homework activities after each session. Should we see signs that your child is finding YP Face IT difficult in any way we will contact your child (and you if they are under 16) via telephone or e-mail.

Six weeks after your child has finished session 7, they will be sent an e-mail asking them to complete the YP Face IT quiz. This is a quiz which reminds them of all the skills they have learnt in YP Face IT.

Contact during the study

As the study runs over a year and it can be hard to remember what you and your child need to do at different times, we will ask permission to keep in touch using texts and e-mails, which will also help you to contact us easily.

What are the possible disadvantages and risks of your child taking part?

The main disadvantage is the need to commit time to the questionnaires and interviews, and if in the YP Face IT group, to completing all the sessions.

For those in the YP Face IT group: Although YP Face IT has been designed to be a positive and supportive programme, some young people could find it challenging. 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 those using the programme to reflect on their own appearance worries and difficulties and set themselves small challenges to help them improve their confidence and self-esteem.

If your child becomes upset when working through the programme, or when participating in the interviews, we will be available to support them and they can stop taking part at any time, without providing us with an explanation. The research team are skilled at providing support to young people with appearance concerns and their parents. If you or they are unhappy with any part of the research, any concerns can be discussed with the lead researcher, Heidi Williamson and Clinical Psychologist Julia Cadogan, who is an expert in providing support to young people with appearance concerns and is a member of the study team.

What are the potential benefits of your child taking part?

We hope this important study will help us to find out the best way to support young people who are concerned about their appearance and to help them to live a full and happy life. Many young people enjoy taking part in research and feel that it is worthwhile helping researchers to develop ways to support young people like them.

What will happen if we don’t want to carry on with the study?

You and your child can leave the study at any time without giving a reason. This will not affect the care you or your child receives now or in the future. We will use the information we have collected up to the point you choose to leave as this is important information to help us plan the bigger study. We may also ask you to help us understand why you have chosen to leave, so we can improve the study if necessary, but it is your choice whether you tell us. Whatever you decide will not affect the care you or your child receives now or in the future in any way.

What will happen to the results of this study?

We will report our findings to the National Institute for Health Research who are funding this study and in journals read by other people caring for adolescents with conditions that affect their appearance. We will share what we find at meetings of research and health professionals. We will have a regular newsletter to keep you informed of the study’s progress and provide a summary of our findings at the end.

Will our taking part in this study be kept confidential?

If you choose to take part in the study you will be allocated a number. Any information or data you provide will be linked to this number and not your name. Only the study team and possibly a research inspector who checks research is being done to the highest and safest standards will be able to link you and your child with any information you have given us. All information will be kept securely locked in a filing cabinet on university premises and password protected and encrypted on secure computer systems. We will ask your permission to use your exact words when we write or present the study findings. These quotes will not be linked to you or your child. No child or parent will be identified in any report, publication or presentation. We will keep records in a secure way for 7 years.

As a matter of good practice we will notify your child’s GP that they are taking part in the YP Face IT study as it may be important that they know what other support they may be receiving.

Because children are involved in the study, we have a duty to follow up any concerns we may have about their safety. Although it is extremely unlikely, and we would always aim to discuss any concerns with you before deciding what to do, we may need to share concerns with others outside the study team.

Who has reviewed the study?

This study has been approved by the NRES Committee South West - Frenchay Regional Ethics Committee (REC). The University of the West of England is responsible for making sure we do the study in a way that protects children, parents and staff from any harm.

What if there is a problem?

If you or your child has any concerns about any aspect of this study, we would really like to know about them. Please contact us first through Claire Hamlet (Tel: 0117 3283513 or E-mail claire.hamlet@uwe.ac.uk).

What do I do if I want to take part?

Thank you for reading this and considering taking part in this study. If you or your child would like more information or would like to take part please let Claire Hamlet know (contact details below). If your child is under 16 years old, you will need to provide your consent to allow them to take part.

Contact Information

Claire Hamlet YP Face IT co-ordinator Centre for Appearance Research, University of the West of England, Bristol Tel: 0117 3283513 or e-mail: Claire.hamlet@uwe.ac.uk

Dr Heidi Williamson, Lead Researcher & Senior Research Fellow Centre for Appearance Research, University of the West of England, Bristol Tel: 0117 3281572 or e-mail: heidi3.williamson@uwe.ac.uk

Professor Diana Harcourt Co-director Centre for Appearance Research, University of the West of England, Bristol Tel: 0117 3282192 or e-mail: diana2.harcourt@uwe.ac.uk

Dr Julia Cadogan Consultant Clinical Psychologist University Hospitals Bristol, NHS Foundation Trust e-mail:Julia.cadogan@UHBristol.nhs.uk

Parent's guidance sheet

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