Development of a programme to reduce burden and distress in parents and carers of children with OCD (aka CORuS - Co-developing an Online Resource to Support parents and carers of children with OCD)
What did we do?
In this study, which is hosted by Greater Manchester Mental Health NHS Foundation Trust, we continued to co-develop an intervention that aimed to reduce how stressed and overwhelmed parents and carers can feel when supporting children with obsessive-compulsive disorder (OCD). This built on work done in the CO-ASSIST study.
Why was 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 did we do 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 could be tested, evaluated and eventually used by parents, more work was required to make decisions about the format and content of the intervention.
There were three work packages in the study:
- Develop a ‘parent measure of burden’ for parents/carers of children with OCD
There wasn’t a way of fully measuring the level of emotional burden experienced by carers of children with OCD. So, this work package used data collected in the CO-ASSIST study to produce a new questionnaire that was specific to parents and carers of children with OCD. We did 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. Building on this knowledge, we ran a number of workshops with parents of children with OCD to agree the more specific details for the content and resources that needed to be developed, for example, the format of the resources and the software features of the platform. We used the information from the workshops to develop a prototype intervention.
- Strengthening the team and planning our Programme Grant for Applied Research application
To develop and test the intervention past the prototype stage, we planned to submit a bid for more funding through an NIHR Programme Grant for Applied Research. To reach this stage, we a) worked with our team of experts, b) ran workshops with a panel of parents to develop our research plan, and c) worked with community groups and relevant organisations to make sure the platform was accessible to parents from ethnic minorities and refugee communities.
Who we worked with
- OCD UK
- Anxiety UK
- University of Liverpool
- Greater Manchester Mental Health NHS Foundation Trust
- National Institute for Health and Care Research
Funding information
This work was funded for 18-months through a National Institute for Health and Care Research (NIHR) Programme Development Grant (NIHR205677).
Downloadable resources
More information
Programme Manager
Gill Rizzello