Caring for a child with obsessive-compulsive disorder (OCD) can be extremely difficult. At the moment, parents receive little or no support to manage the demands of their caring role.
The CO-ASSIST research programme, funded by the NIHR and supported by GMMH, comprises a team of researchers, a parent co-researcher (who has a child with OCD) and user-led UK charity partners, working together to develop better support for parents of children.
In their recently published qualitative study published in the BMC-Psychiatry, the CO-ASSIST team have provided a detailed understanding of support needs and support challenges parents face.
Key support needs and challenges were identified from interviews and focus groups with 20 parents of children with OCD and 25 professionals involved in supporting families with OCD. The professionals included CBT therapists, clinical psychologists, psychiatrists, mental health nurses, and practitioners. This is the first qualitative study to have specifically investigated support needs in parents of children with OCD from both a parent and professional perspective.
The team found that compassion and sensitivity regarding this demanding caring role, opportunities to share experiences and time out or headspace from the daily caring demands, and guidance on family accommodation (where family members get drawn into enabling rituals and compulsions) were identified as crucial support needs for parents. Nonetheless, these support needs were complicated by the battle parents faced when trying to access OCD treatment for their children.
Our findings showed that parents prioritised getting help for their child and struggled to consider their own needs until this was achieved. Public misconceptions about OCD, the lack of a united approach, or clear OCD treatment pathways were additional challenges many parents faced whilst caring for a child with OCD.
Parents caring for children with OCD have clear caregiver support needs which are currently not being met. This work forms an essential first step in laying the foundation to develop better care for this group of carers.
Debra Robinson, Parent Co-Researcher on the Project and Co-Author said,
“I first became involved with the project because I found my family’s OCD journey so devastating that I wanted to see if there was any way I could support other families going through the same thing. Involving myself in this project meant that I was able to use my knowledge and experience to inform the research to ensure that parents’ voices were heard.”
Dr Emma Sowden, Project Researcher and Lead Author, said,
“Co-production research methods, which involve working in partnership with a parent co-researcher and service user-led charity partners, have made working on this project so rewarding and inspiring and has ensured the needs of parents have been at the forefront of our work.”
If you would like any further information about the CO-ASSIST study, you can contact the study lead, Dr Rebecca Pedley at Rebecca.firstname.lastname@example.org.