Development of a programme to reduce burden and distress in parents and carers of children with OCD
What are we trying to do?
In this study, whch is hosted by Greater Manchester Mental Health NHS Foundation Trust, we are continuing to co-develop an intervention that aims to reduce how stressed and overwhelmed parents and carers can feel when supporting children with obsessive-compulsive disorder (OCD). This builds on work done in the CO-ASSIST study.
Why is it important?
OCD is a mental health condition that often begins during childhood. The challenges of supporting a child with OCD can lead parents and carers to feel stressed and overwhelmed. While the National Institute for Health and Care Excellence (NICE) and the NHS recognise the importance of providing guidance and support to parents, in reality there is often little help available.
How are we doing it?
The National Institute for Health and Care Research (NIHR) funded a previous study called CO-ASSIST which resulted in an outline plan for an online intervention to help parents and carers supporting a child with OCD. Before the intervention can be tested, evaluated and eventually used by parents, more work is required to make decisions about the format and content of the intervention.
There are three work packages in the study:
- Develop a ‘parent measure of burden’ for parents/carers of children with OCD
At the moment, there isn’t a way of fully measuring the level of emotional burden experienced by carers of children with OCD. This work package is using the data collected in the CO-ASSIST study to produce a new questionnaire which is specific to parents and carers of children with OCD. We are doing this in partnership with parents of children with OCD.
- Co-design the digital platform
CO-ASSIST identified that an online intervention should be used, and some of the main resources and content were agreed. During this work package we are running a number of workshops with parents of children with OCD to agree the more specific details for the content and resources that need to be developed, for example, the format of the resources and the software features of the platform. We are using the information from the workshops to develop a prototype intervention.
- Strengthening the team and planning our Programme Grant for Applied Research application
We will be developing and testing the intervention past the prototype stage, we plan to submit a bid for more funding through an NIHR Programme Grant for Applied Research. To reach this stage, we will a) work with our team of experts, b) run workshops with a panel of parents to develop our research plan, and c) work with community groups and relevant organisations to make sure the platform is accessible to parents from ethnic minorities and refugee communities.
Who we working with
- OCD UK
- Anxiety UK
- University of Liverpool
- Greater Manchester Mental Health NHS Foundation Trust
- National Institute for Health and Care Research
This work is funded for 18-months through a National Institute for Health and Care Research (NIHR) Programme Development Grant (NIHR205677).