We know that children and young people who have neurological problems are more likely have other difficulties like anxiety, low mood or behavioural problems. We want to find the best way of treating such problems which can affect the young person’s overall health. We would like to see whether methods for treating such problems in children without neurological conditions work just as well for those that do.

One type of possible help is using self-help workbooks with the support of someone from the hospital. Such workbooks mean that families need to come in less often to visit the hospital.

The purpose of this study is to find out if guided self-help interventions work for reducing anxiety, low mood or behaviour problems in children who also have a neurological condition. If we find that they do work for these children and young people, then we hope that they will become more widely available for children with other physical illnesses.

Why has my child been invited?

We are inviting all children and young people aged between 7-18 years, who have a neurological condition and who are receiving or waiting to receive assessment or treatment at Great Ormond Street Hospital.

Part 1 of the study

If you and your child are interested in taking part, you will be asked to complete a questionnaire designed to identify any problems with anxiety, mood or behaviour that they might be experiencing. This will take about 45 minutes, depending on your answers to the questions. If your child is 11 years old or older, they will be asked to complete the questionnaire too. Someone will give you a password and username so that you can complete the questionnaire on a computer at home. You may be able to complete it on a computer at Great Ormond Street Hospital, if you prefer this.

After this, if your child is identified as having symptoms of anxiety, low mood or behavioural problems, you and your child will be invited to take part in the next part of the study.

You and your child do not have to agree to continue to the next part of the study, even if you agreed to take part in part 1.

Part 2 of the study

Sometimes, we don’t know which way of treating patients is best. To find out, we need to compare different treatments. We put people into groups and give each group a different treatment. The results are compared to see if one is better. To try to make sure that the groups are the same to start with, each patient is put into a group by chance (randomly).

This part of the study will compare guided self-help interventions for low mood, anxiety or behavioural problems in children, with a group of children who do not receive these interventions straight away. The children who do not receive the intervention straight away will receive it after 10 weeks on the waiting list. This is known as a ‘waiting-list control’ study.

Your child has a 50/50 chance of being in the group of children and parents who receive the guided self-help straight away. This means that about half of the children in the study will receive the guided self-help intervention straight away, and half will receive it after 10 weeks.

Guided self-help intervention

If your child is allocated to the guided self-help intervention group, you and/or your child will be asked to attend at least one meeting at Great Ormond Street Hospital, for approximately one hour. The people asked to attend this appointment will depend on the type of difficulty your child is experiencing and how old they are. For example, we usually meet only with the parents of younger children who are experiencing behavioural difficulties. We may meet with a seventeen year old experiencing worry by themselves. The researcher will discuss who the appointments would be with when you are invited to take part in the study.

After this first appointment, you and your child will use a ‘self-help’ workbook based on cognitive behavioural therapy (‘CBT’) strategies, over a course of 10 weeks. These go through strategies that research has shown to be helpful in reducing symptoms of anxiety, mood or behavioural problems in children and young people. The researcher can tell you about what the therapies involve in more detail. A helper will guide you through these workbooks. You and/or your child will meet with the helper approximately a further five times during the 10 weeks. These appointments may be over the phone, or Skype if you prefer this.

The meetings (including any over the phone or Skype) will be video or audio recorded, so that we can make sure that all of the helpers are delivering the same therapy.

Improving the well-being in young people with neurological conditions

We work at the Institute of Child Health and Great Ormond Street Hospital. We would like to invite you and your child to take part in a research study. Before you decide if you would like to take part, it is important for you to understand why the research is being done and what it will involve for you and your child.

Please read through the following information carefully and discuss it with others if you wish. Take your time to decide whether or not you wish to take part.

Please ask us if there is anything that is not clear or if you would like more information.

Great Ormond Street

London

WC1N 3JH

Does my child have to take part?

What will happen to my child if they take part?

It is up to you whether you want your child to join the study. We will describe the study and go through this information sheet when you come for your child’s appointment in the neurology clinic. If you agree to take part, we will then ask you to sign a consent form. You are free to withdraw at any time, without giving a reason. This would not affect the standard of care you receive or how quickly you receive care.

Will taking part help my child?

We cannot guarantee that the study will help you and your child, but the information we get from this study will help improve the treatment of children with anxiety, low mood or behavioural problems in the context of a neurological illness.

Is there anything to be worried about if my child and I take part?

There are no specific risks from taking part in the study. The study is a ‘randomised waiting-list controlled study’, which means that your child might not be put into the group that receives the guided self-help intervention that we are testing straight away. However, you will still receive the intervention after 10 weeks. If we think that your child needs to meet with someone to discuss their wellbeing sooner (for example if their mood worsens considerably during this time), then we will refer you to other services that can help. No children will be deprived of an intervention that they would otherwise have received had they not been a part of the study.

It is possible that thinking about their life and the effect of having a neurological condition could be upsetting for you and/or your child. If the questionnaires do cause any distress, we please let us know so that we can offer support and think about what further help is needed.

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About our research project

What is the purpose of the study?