Developing new ways of providing support to parents and carers of children with obsessive-compulsive disorder: Findings from the CO-ASSIST study
Obsessive-compulsive disorder (OCD) is a severe and debilitating emotional disorder that often begins in childhood.
The effect of obsessions and compulsions are not only distressing for the child experiencing them, but also for the child’s parents and carers.
Without adequate support, the role of caring for children and young people can pose a significant burden to parents and carers.
The CO-ASSIST study was funded by the National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) and supported by the Applied Research Collaboration Greater Manchester (NIHR ARC-GM). The project was hosted by Greater Manchester Mental Health NHS Foundation Trust and was led by Dr Rebecca Pedley, Research Fellow at the University of Manchester, NIHR ARC-GM Mental Health Team.
The project was carried out with consultation from two national charities, OCD UK and Anxiety UK. Speaking of the project, CEO of OCD UK, Ashley Fulwood, who has been involved in planning the project from its early stages, commented:
“We now know that OCD can have a devastating impact on individuals with OCD, including children. But loved ones, especially parents of children and adolescents with OCD are often left feeling powerless to help their child. Which is why the team at OCD-UK were fully support of this important piece of research”
During the project, researchers spoke to parents and carers of children with OCD and professionals to get a detailed understanding of parents’ support needs and preferences. Drawing on these findings, a series of interactive workshops with parents and professionals were used to identify and reach consensus on new ways to support parents and carers of children living with the condition.
Debbie Robinson, a parent with lived experience and co-researcher commented on her role within the project:
“Working as a co-researcher on this project has been a tremendously rewarding and at times gut -wrenching experience for me as a parent of a child with OCD. To give so many parents a voice to be heard and acted upon was my motivation and has been such a worthwhile job. The findings have validated so many experiences and hopefully will lead to real change in the way that OCD is perceived, and families are supported in their hugely difficult role as carers.”
The study found that the most feasible and helpful solution was an online platform containing parent and carer informed information and resources.
Once developed, the platform will help equip parents and carers to support their child, make sense of OCD and develop a shared understanding of OCD within the family. It will also help parents to consider their self-care and provide opportunities for parents to be heard.
The team have been keen to share the findings from the project with families affected by OCD and members of the public, creating an animation, a podcast and a written summary.
The animation was narrated by Ian Puleston-Davies, patron of OCD UK charity and well-known for his TV acting roles including Coronation Street and The Teacher. Discussing the importance of the project, Ian commented:
“Take it from me, it’s exhausting being a parent of a child suffering from OCD. They really do need all the help they can get. And to know you are not alone, whether you are that parent, or that child who suffers, is so incredibly important. As a patron of OCD UK, I am always looking for an opportunity to shout about OCD from the rooftops…”
The team are now working on a grant application to seek funding to develop and test the online platform.
You can view the animation and podcast, and read more about CO-ASSIST here:
Published 5th May 2022