FAQs for Families

The OCD Empower Study aims to evaluate a new treatment for children with obsessive-compulsive disorder (OCD) that has the potential to make evidence-based treatment more accessible.  

• The treatment is called Online Support and Intervention (OSI) for Obsessive Compulsive Disorder (OCD) and involves parents/carers working through online content and trying out evidence-based tools at home with their child. 

• Parent/carer has access to a website with 10 modules of information, activities to work through, and questionnaires to track your child’s progress through treatment.

• Parent/carer has 10 sessions with a therapist (all approximately 20-30 minutes each) over up to approximately a 4 month period. 

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect participants’ interests.  

This study has been reviewed and given a favourable opinion by The University of Oxford Research Ethics Committee and The Health and Care Research Wales (HCRW) Health Research Authority. 

Below is an overview of the stages of the study and what to expect if you decide to take part. 

Step 1: Checking that the study is suitable for your family. 

Before your family can take part in the study, we will need to check if you and your child are eligible. This will involve you completing:  

• A brief questionnaire about you and your child  

• A questionnaire about possible social communication differences  

• Interviews for you and your child to complete about your child’s difficulties, including questions about OCD, other common anxiety problems, behavioural problems and low mood. 

The research team will call all families to let them know whether they are eligible for the study. All families who complete the interviews about their child’s difficulties will be provided with a letter summarising the outcome of the interviews.  

If your family does not meet the study criteria, we will explain why and the team looking after you will talk to you about what other treatment they can offer. 

If you and your child are eligible and you choose to take part, you and your child will then have one month to complete a baseline interview and some online questionnaires. These will ask for some details about your family, your child’s feelings and behaviour, and how OCD is affecting their daily life. 

Step 2: A computer decides which treatment you receive. 

Once these assessments have been completed, you and your child will be randomly allocated (using a computer-based system) to either the online treatment with therapist support (OSI-OCD) or usual treatment. 

Step 3: You’ll then receive the treatment.  

The first treatment option involves working through an online platform with therapist support (OSI-OCD):  

• You will be given access to an online platform designed to help you support your child to overcome OCD.  

• The website content is based on the recommended psychological treatment for children with OCD and has been designed with input from children with OCD, their parents/carers, therapists, and other OCD experts.  

• You will be able to access the website using any computer, tablet, or smartphone that has access to the internet.  

• You will also receive regular support from a therapist with 10 phone or video calls (all approximately 20-30 minutes each) over a period of approximately 4 months to guide you through the online content and answer any questions you may have.  

The second treatment option is treatment as usual:  

• If your family is allocated to this group, your child will receive the treatment that the service usually provides for OCD.  

• The type of support your child receives will depend on what your child’s service offers (as this can vary depending on the service/local area).  

• If you have questions about the options in your child’s service, we recommend speaking with your child’s service, who will be able to provide more specific information. 

Step 4: Follow Up. 

Once the treatment has started, you and your child will be invited to complete follow-up interviews and online questionnaires about their difficulties and the impact of these difficulties 20 weeks and 32 weeks after you have been allocated to the treatment. These assessments help us track your child’s progress. 

Step 5: If you received OSI-OCD, you’ll be invited to an optional interview about your experiences of this treatment. 

We will ask some parents/carers and children who completed the OSI for OCD treatment, and therapists who have supported parents/carers with OSI for OCD, to take part in an optional feedback interview to tell us a bit more about how they found taking part. This may include those who completed the OSI for OCD treatment, as well as those who did not fully complete it, so we can understand a range of perspectives. These optional feedback interviews will be audio-recorded. 

Each family will get a £20 voucher when they complete the questionnaires and interviews about their child’s worries and behaviours at each of the two follow-up assessments as a thank you for giving up their time to complete the questionnaires. Therefore, completion of both follow up assessments will result in reimbursement of £40 overall.  

Parents/carers who take part in the optional feedback interview about their experiences of OSI for OCD will get a further £20 voucher as a thank you for their time.  

Children who take part in the optional feedback interview about their experiences of OSI for OCD will get a further £20 voucher as a thank you for their time.  

If helpful, families can be reimbursed up to £30 for the cost of the mobile internet data used to take part in the online support. If you receive state benefits, you may need to inform your benefit provider about any payments you receive for taking part in the study. If you are unsure how this might affect your benefits, you can contact your benefit provider directly or seek advice from the Citizens Advice Bureau (0808 223 1133) 

Please see the information sheet for information on how we will look after and store your data.  

• Participation in this study is voluntary. It is okay if you, or your child, changes your mind at a later stage.  

• Not taking part will not affect your legal rights or the medical care you and your child receive from the NHS  

• If you do withdraw, no further data will be collected but any data that has already been collected will be used in the study analysis. 

Your involvement will last for around 9 months (if you decide not to take part in the optional feedback interviews), or around 11 months (if you do decide to take part in the optional feedback interviews). The time commitment mostly comes from participating in treatment and completing follow-up activities at the 20-week and 32-week marks. 

Your GP Practice will be informed via letter that you and your child are taking part in this study and will be provided with the Participant Information Sheet. 

We believe that both treatments could be helpful for children with OCD, but we don’t yet know which treatment works best or if they work equally well. That’s why we are doing this research.  

By taking part, you and your child will be helping us understand whether this treatment is feasible and acceptable for helping children to overcome OCD, and your participation will contribute to improving treatment options for others in the future. 

OSI (Online Support and Intervention) was originally designed for children with anxiety problems and has been found to be effective for treating child anxiety problems and also acceptable to children and families. You can read more about previous OSI research here.  

A new version of OSI has been specifically adapted for children with Obsessive Compulsive Disorder (OCD), called OSI for OCD, or OSI-OCD.  

OSI-OCD supports parents/carers to work through online content and use evidence-based tools at home with their child, with regular guidance from a therapist through brief phone or video calls.  

As part of this treatment:

• Parents/carers have access to a website with 10 modules of information, activities to work through, and questionnaires to track your child’s progress through treatment. 

• Parents/carers have 10 sessions with a therapist (all approximately 20-30 minutes each) over approximately a 4 month period. 

OSI-OCD is based on the recommended psychological treatment for children with OCD and has been developed with input from children with OCD, their parents/carers, therapists, and other OCD experts. 

‘Treatment as Usual’ refers to the usual treatment currently being offered for child OCD. 

The type of support your child receives will depend on what your child’s service offers (as this can vary depending on the service/local area). If you have questions about the options in your child’s service, we recommend speaking with your child’s service, who will be able to provide more specific information.