Help with our research

This opportunity to take part in research is currently being offered to every family, child and young person who is referred to Child and Adolescent Mental Health Services (CAMHS) or a neurodevelopmental clinic. This is being done in conjunction with the National Centre for Mental Health (NCMH). Our aim is to help improve the information gathering process at clinic. At the same time, this will help with research as mental health conditions and neurodevelopmental difficulties in children/young people are not well understood.

About the Study

The National Centre for Mental Health (NCMH) are trying to understand why some young people experience problems with their mental health. By comparing information from those who have experienced mental health problems with information from those who have not, we hope to learn more about the factors that may make some young people more likely to experience problems than others. We hope that our study will improve the understanding of mental health and help find better treatments in the future.

What will I have to do?

If you decide to take part, we will ask you to join the NCMH study and provide us with contact information. We will also ask you and your child about symptoms and problems they have experienced. This will be done by asking you to complete a widely used on-line questionnaire called the Development and Wellbeing Assessment (DAWBA). There is an opportunity for both you and your child to provide information if you wish. You can find out more about the DAWBA by visiting www.dawba.info. This information will be used by NCMH to better understand young people’s mental health.

We also contact participants on a regular basis to update and offer opportunities to take part in further mental health research projects.

Taking part is voluntary: it’s up to you and your child to choose if you want to sign up. Choosing not to take part will not alter the care your child receives.

Who is doing the study?

NCMH is a Welsh Government funded Research Centre, led by Cardiff, Swansea and Bangor Universities. It is being funded by Health and Care Research Wales, Welsh Government. The Director of the National Centre for Mental Health is Professor Ian Jones.

How can I join the study?

You will have the opportunity to join the study once you have read through and understand the information.

What are the possible benefits of taking part?

We hope that learning more about young people’s mental health will lead to new ways of diagnosing, treating or even preventing mental health problems in young people. However, these remain long-term aims. With your permission, we will share the information you provide via the DAWBA with your child’s clinical care team. This may help them assess your child’s symptoms.

Who will have access to my information?

Only the study team will have access to your data and only they will contact you directly.

All information collected during the course of the research will be kept strictly confidential. There are strict laws that safeguard your privacy at every stage. In accordance with the Data Protection Act, your personal information will be kept confidential by assigning a unique study code to your child’s data. With your permission, we will share the information you provide via the DAWBA with your child’s clinical care team. Your child’s name and identifying information will not be passed on to anyone else.

What questions will I be asked now?

When you agree to take part and sign up, you will be asked to provide contact details and some basic information about your child (e.g. age and gender).

Once you’ve joined, we will send you an email with a link to the DAWBA website and an ID numbers and passwords for you and your child. You will then have access to the website. You can read more about the DAWBA by visiting the website: www.dawba.info.

How often will I be contacted?

We will contact you every now and again, to see if you would be happy to provide additional information for the research. If you agree that you would like to do this we will ask questions about your child’s health and wellbeing. Sometimes we will ask about things which we haven’t asked before. Sometimes we will ask you the same questions as before, so that we can see how your child’s lifestyle and health is changing.

As well as this regular contact, the study team may contact you from time to time, to let you know about other studies that you and your child may wish to take part in. You may be contacted because your child has a specific condition (for example ADHD), or because of something that you have told us about (for example, your child’s age). These studies may be conducted by other research teams but you will only be contacted by the NCMH team to ask if you are interested in hearing more about them. We will give you more information about these studies including why the research is being carried out, what you might be asked to do and how to sign up. It is up to you to decide whether you want to take part in these new studies and it won’t affect your participation in the National Centre for Mental Health Study if you prefer not to get involved.

How long will it take?

First you need to join the study. This involves reading this participant information and then consenting below.  This should take about 5 minutes.  Take as much time as you need to decide whether you wish to take part.

Once you have joined, you will be asked to provide some basic information. This should take about 5-10 minutes to complete.

You will then be sent a link to use the DAWBA site. Completing the DAWBA will take 1-2 hours (approximately) depending on the amount of information you and your child would like to provide. There is no requirement to complete the DAWBA in one go. You can come back and provide more information another time.

Can I decline or withdraw from the study?

Yes, you do not have to take part in this study. If you do decide to take part you are free to withdraw at any time without giving a reason. If you decide to withdraw from this study, all information you have provided will be destroyed. These will not be used further in the research. This will not affect the care your child receives.

What happens when the study is finished?

This is a long term study that will help us to learn a lot about the causes and triggers of mental health problems. The information you provide will be stored for use on a long term basis (at least 15 years). You will not have any claim to any future commercial use of results from the study in which your data has been used. To make best use of resources we will share anonymised data (which is data with all  personal details removed) with different groups of researchers from the NHS, universities and commercial companies, both within the UK and abroad. However, we would stress that those organizations will never obtain access to personal/ identifying information (for example, your name, address, date of birth).

Who has reviewed the study?

Ethical approval has been obtained from the National Research Ethics Service and NHS (Research and Development) permission has also been obtained.

If you have further questions about the study please contact the study team:

National Centre for Mental Health

Cardiff University
Hadyn Ellis Building,
Maindy Road,
Cathays,
Cardiff
CF24 4HQ

Phone 029 20688401
Fax     029 20687100
Email   info@ncmh.info

Can I discuss the study with somebody independent of the project?

Yes, you can contact:

Vanessa Davies
Institute Manager
Neuroscience and Mental Health Research Institute
3rd Floor, Hadyn Ellis Building
Maindy Road
CARDIFF
CF24 4HQ

Phone 029 20688340
Email  daviesvj@cardiff.ac.uk

If you are happy to take part in this study please visit our online survey platform to get started.

Address:

National Centre for Mental Health, Cardiff University, Hadyn Ellis Building, Maindy Road, Cardiff, CF24 4HQ

Phone:
+44 (0)29 2068 8401
The National Centre for Mental Health (NCMH) is funded by Welsh Government through Health and Care Research Wales | Privacy Policy