Lots of children and young people experience emotional difficulties, such as feeling sad or anxious, or having worries. Sometimes these difficulties can be very upsetting, and have an impact on day-to-day life, school, friendships and relationships. If a health professional, teacher or the family think that these difficulties might need specialist help the child/young person may be referred to CAMHS.

When a young person is referred to CAMHS, the service will review the information they have received and decide the most appropriate way to support the family. Sometimes referrals to CAMHS are not accepted but parents/carers may be advised to seek help elsewhere. Sometimes it can take a long time before children get the help they need.

We want to find out whether collecting extra information when people are referred to CAMHS helps with understanding their difficulties and offering the right help.

You have been invited to take part in this research because a young person you care for has been referred to CAMHS.

The young person may be your child, or they may be a child that you have parental responsibility for (e.g. your grandchild) but for ease, the rest of this information will use the term ‘your child’ and we will refer to you as the ‘parent/carer’.

We need 1210 children/young people and their parent/carers to help with our research.

No. It is up to you and your child to decide whether or not to take part. Whether or not you choose to take part, this will not affect the care your child receives.

Consent

If your child is under 11 years old

If you decide to take part, you will be asked to provide consent for yourself and on behalf of your child.

If your child is aged 11 to 15

If you decide to take part, you will be asked to provide consent for yourself and on behalf of your child. We will also ask your child if they would like to be involved.

If your child is aged 16 or 17

If your child is 16 or 17, they will be asked to provide consent to take part in their own right. If they agree, you will also be asked to provide consent so that you can take part.

Completing some research questionnaires

If you join the study, we will ask you to complete some questionnaires online at the beginning and again after 6 and 12 months so we can find out how you and your child are getting on. These questionnaires might take about 30 minutes to complete.

If your child is under 11 years old

Your child will not have to do anything. You will answer some questionnaires about your child. We will also ask you some questions about yourself.

If your child is aged 11 to 15

We would like to ask your child to complete some questionnaires so we can find out about their experiences from their point of view. We will only do this if you both agree. We will also ask you to complete some questionnaires about your child and ask you some questions about yourself.

If your child is aged 16 or 17

Your child can choose whether to take part in the research and whether they would like you to be involved. If they agree, we will ask you to complete some questionnaires about your child and ask you some questions about yourself.

If you complete the questionnaires, you will receive an e-voucher as a thank you for the extra time you are spending taking part in the study. If your child completes the questionnaires they will also be sent a voucher as a token of our appreciation.

Completing an extra questionnaire (half the participants)

There will be two groups in the study, either:

1. your child’s referral information will be looked at as usual by CAMHS, or
2. your child’s referral information will be looked at as usual by CAMHS plus the results from an extra questionnaire.

This means that if you take part in the study, you and your child (if they are aged 11 or older) may be asked to complete an extra online questionnaire called the Development and Wellbeing Assessment (DAWBA). The DAWBA might take up to an hour and a half to complete.

If you fill out the DAWBA, the results will be written up and we will give a copy to:

• You and/or your child (if they are aged 16 or 17)
• The CAMHS team.

We will ask you to complete the DAWBA in the next few days. The researcher can help you with this.

Whether or not you are asked to complete the DAWBA will be decided by a computer in a process called randomisation. This means that there is a 50:50 chance that you are asked to complete the DAWBA. This is the fairest way to allocate the two groups. Neither you, the researcher nor the CAMHS team will be able to choose which group you are in.

Collecting information from your child’s CAMHS notes / NHS records

If you take part in the study we will ask your permission to collect information from your child’s CAMHS notes, such as whether your child received a diagnosis and if they were offered any treatment. This is important as it will tell us whether the DAWBA makes a difference to the help people get from CAMHS.

Linking routinely collected data with information collected during STADIA for use in future projects (optional)

NHS Digital keep central confidential records about the people who use NHS services. We are asking for your permission to combine data collected from the STADIA study with the data that is already being kept by NHS Digital so we can look at longer-term outcomes, such as use of services in the future.

We would need to send your child’s NHS number, name and date of birth to NHS Digital in order to request data from the Children and Young People's Health Services Data Set and the Mental Health Services Data Set. The information that your local NHS Trust passes on to NHS Digital (your child’s NHS number, name, and date of birth) will only be used to identify your child’s health records and will not be stored or used for other reasons.

Once the anonymous STADIA information is linked with the information provided by NHS Digital, it will be treated as confidential and anonymous, and will only be used for statistical and research purposes in the future. There is no time limit on how long we would retain your information, so that it can be used to look at long-term trends in future studies. However, you still have the right to withdraw consent at any time, as outlined in Section 5 of this document.

If you don’t want to agree to this, you can still take part in the main study.

Interviews about your experiences (some participants)

We would like to ask some people more questions about their experiences of accessing services and about taking part in this research. We will ask you if you are happy to be contacted about this. If you agree to be contacted, you’ll get more information about this bit of the research at a later date and can decide whether or not to take part then.

If you decide at any point after starting the study that you don’t want to be part of it anymore, then you can stop taking part. It would be very useful to know why you have made this decision, but you do not have to give us a reason.

If you decide that you do not want to complete the questionnaires, this does not mean that you have to leave the study. We can still collect important research information from your child’s CAMHS notes and NHS Digital, but you may withdraw permission to do this if you wish.

If you don’t want to carry on with the study, the information collected up until you withdraw cannot be erased and may still be used.

We cannot promise that taking part in this study will benefit you or your child personally.

The main benefit of this research is that we will learn better ways to assess children and young people referred to CAMHS, which may mean better referral processes and improved access to services for children and young people in the future.

If you take part in this research you will be asked some questions about your child’s feelings and behaviour and about your own mental health. Some people can find it hard when they are asked to think about the difficulties they are experiencing.

There is a 50:50 chance that you may also be asked to complete the DAWBA. We do not know whether this will directly benefit you and your child. Doing the DAWBA does not necessarily mean your child’s referral will be accepted to CAMHS.

If you do the DAWBA, we will give you and the CAMHS team a copy of the results. We hope this will help you better understand your child’s difficulties and help them access the most appropriate support for their needs, but we do not know if it will help. Some people may find receiving a report about their child’s difficulties upsetting.

If you are concerned by any of the issues raised in the STADIA study there are some organisations that can offer support and advice.

All information we collect about you and your child will remain confidential, this means we will not share it with people or organisations who are not working on the study. The information will also be anonymous, which means we do not use your names.

We will keep your information safe and store it securely.

We will only use your contact details to tell you about the study, for example:

• To send you questionnaires
• To give you updates on the study, if you want them
• To tell you the results of the research, if you want them

We will not keep your contact details after the results of the study have been sent to you, unless you give us permission to do so. We will store the information from the research for 10 years. After this time, your data will be disposed of securely.

We may use anonymous information collected in this study in future research looking at similar issues.

Please see here for further information on data protection.

You will be sent a copy of the results, unless you tell us that you do not want to receive this.

The study is being carried out by health professionals and researchers from the NHS and the University of Nottingham.

The coordinating centre is the Nottingham Clinical Trials Unit at the University of Nottingham.

Nottinghamshire Healthcare NHS Foundation Trust is the Sponsor and has overall responsibility for the research.

All research in the NHS is checked by an independent group of people, called a Research Ethics Committee. This study has been checked by West Midlands - South Birmingham Research Ethics Committee.

If you have concerns or questions about any aspect of this study, you should ask to speak to the local researchers. Their contact details can be found here.

If you remain unhappy and wish to complain formally, you can do this through your local NHS Complaints Procedure. You can find out more information by contacting your local team here. 

In the event that something does go wrong and you are harmed during the study, there are no special compensation arrangements. If you are harmed and this is due to someone’s negligence then you have grounds for a legal action for compensation but you may have to pay your legal costs. The normal NHS complaints procedure will still be available to you.

If you are concerned by any of the issues raised in the STADIA study there are some organisations that can offer support and advice.

When the research stops, if your child is receiving care from CAMHS or any other service this will continue as usual.

Thank you for reading this information.

Participant Information Sheet, Parent/Carer Version 2.1 03-Feb-2021

If you were invited onto the study between 20-Nov-2020 and 04-May-2021 then please click the following link for information: 

Participant Information Sheet, Parent/Carer Version 2.0 13 Aug 2020

If you were invited onto the study before 20-Nov-2020 then please click the following link for information:

Participant Information Sheet, Parent/Carer Version 1.0 16 May 2019