CompletedObservational

Co-developing an online resource to support parents and carers of children with obsessive-compulsive disorder (OCD)

Researchers are creating a new online questionnaire for parents and carers of children with Obsessive-Compulsive Disorder (OCD) in the UK. Many existing questionnaires don't fully capture the challenges these families face. This study involves completing a 10-15 minute anonymous online survey with about 60 questions. The new questionnaire, once refined, will be used to see how helpful future online support tools are for parents. It might also help doctors better understand the impact of OCD on families. If you care for a child aged 8-18 with OCD and live in the UK, your input is valuable to help create better support for families.

At a glance

Status

Completed

Sponsor

Greater Manchester Mental Health NHS Foundation Trust

Enrolment target

300

Start

09 Dec 2024

Estimated completion

01 Oct 2025

Obsessive-compulsive disorder

What is this study about?

This study is all about helping parents and carers of children aged 8 to 18 who have Obsessive-Compulsive Disorder (OCD). Many parents have told us that existing questionnaires don't really capture the day-to-day difficulties they face when supporting a child with OCD. So, we're working to create a brand new, specific questionnaire that truly reflects these experiences. This new tool will help us measure how caring for a child with OCD affects families.

We've already started by looking at information from previous projects and talking to parents about their experiences. Now, we need your help to test and refine this new questionnaire. By having many parents and carers complete it, we can make sure it's accurate and reliable. The main goal is for this questionnaire to be used in the future to see how well new online resources can support families dealing with OCD, and it could also help clinicians understand the family's situation better.

Ultimately, your participation in this study will help us create better ways to support families affected by OCD. It’s part of a bigger project to develop useful online tools for parents and carers, ensuring that the support offered is truly helpful and addresses their real-life challenges.

Key takeaways

Help develop a new questionnaire for parents of children with OCD.
Participation involves a 10-15 minute anonymous online survey.
Your input will shape future online support resources.
Open to UK parents/carers of children aged 8-18 with OCD.
No direct benefit to you, but important for wider research.

Who may be eligible?

You can take part in this study if you are a parent or someone with legal parental responsibility for a child aged between 8 and 18 years old who has Obsessive-Compulsive Disorder (OCD).

It's important that you live in the UK to be eligible for this study.

If you don't live in the UK, or if the child you care for is younger than 8 or older than 18, then unfortunately, you won't be able to participate this time.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am a parent or have legal parental responsibility for a child.
My child is between 8 and 18 years old.
My child has been diagnosed with Obsessive-Compulsive Disorder (OCD).
I currently live in the UK.

Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll be asked to complete an anonymous questionnaire online. This survey is hosted on a secure website called Qualtrics. It will take you about 10-15 minutes to answer all the questions.

Before you start the main questionnaire, you'll answer a few screening questions to make sure you're eligible. Then, you'll answer some basic questions about yourself and your child, such as age, ethnicity, and gender. The questionnaire itself has about 60 statements, and for each one, you'll rate how you've felt over the past two weeks using options like 'never,' 'rarely,' 'sometimes,' 'often,' or 'always.' There are no follow-up visits or medication involved; you simply complete this one-time online survey.

Potential risks and benefits

While there won't be any immediate, direct benefits for you personally, your participation is very important. It will help develop a new tool that better understands the challenges of caring for a child with OCD, which can lead to better future support for families. The researchers don't expect any major risks. However, reflecting on your experiences over the last two weeks might bring up some difficult feelings. If this happens, support resources will be provided in a document you can access after completing the questionnaire, or you can speak with the research team. Remember, you can stop participating at any time if you wish.

Locations (1)

University of Manchester
Approximate
Manchester, United Kingdom

Common questions

What is the purpose of this study?

The study aims to create a new online questionnaire that better captures the experiences of parents and carers of children with OCD, to help develop future online support tools.

How long will it take to participate?

Completing the online questionnaire will take approximately 10-15 minutes of your time.

Will my answers be confidential?

Yes, your questionnaire answers will be anonymous, meaning your identity won't be linked to your responses.

Who can take part in this study?

You can participate if you are a parent or carer for a child aged 8-18 with OCD and you live in the UK.

What happens after I complete the questionnaire?

Once you complete the questionnaire, your data will be used by researchers to refine the new tool. There are no further steps required from you.

How to find out more

Emma Sowden

parent.ocd.research@manchester.ac.uk +44 (0)161 2754308 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.