What are we trying to do?
This study aims to identify workable ways of providing support that would meet the needs of parents/carers of children with obsessive-compulsive disorder (OCD). This study has been initiated and designed through consultation with UK OCD charities and parents/carers and Patient and Public Involvement (PPI) will continue throughout the research process, including the involvement of a parent co-researcher.
Why is it important?
Obsessive-compulsive disorder (OCD) is a severe and debilitating emotional disorder that frequently begins in childhood. The effect of obsessions and compulsions are not only distressing for a child experiencing them but also for the child’s parents/carers. Without adequate support, the role of caring for children and young people can pose a significant burden to parents/carers.
Supporting the family members of people with OCD is consistent with UK policy, which now recognises the vital role of unpaid carers and the need to ensure their wellbeing. Despite these policies, consultation with OCD charities and parent/carer groups indicate that relatives frequently receive little or no support in their parenting/caring role. This is of significant concern given parents’/carers’ vital role in supporting their child with their mental health problem. Furthermore, parents’/carers’ health outcomes and those of their wider family are likely to be negatively affected by the strain of living with high levels of burden induced by OCD. There is currently little evidence on how parents/carers and professionals view parental/carer support needs or the help they would find most useful.
How are we doing it?
All research activities will be undertaken for each Phase of the study remotely (via telephone or video conferencing software) to mitigate any risks due to COVID-19. The study has three phases.
- Phase 1 - Parents/carers will participate in a one-to-one interview via telephone or video conferencing (and complete an optional one-week journal in advance of the interview). Professionals will participate in a remote focus group (of 6-8 people) designed to explore their perspectives on current services and the needs of parents/carers.
- Phase 2 - Participants will take part in a one-day remote workshop where evidence from Phase 1 will be discussed to identify strategies and resources to meet parents'/carers' needs.
- Phase 3 - Participants will attend a meeting to discuss the findings from phase 2 to inform the design of a potential intervention to support parents/carers of children with OCD.
Who are we working with?
- Greater Manchester Mental Health NHS Foundation Trust
- Manchester University NHS Trust
- Pennine Care NHS Foundation Trust
- OCD UK
- Anxiety UK
- OCD Action
- 42nd Street
For more information, please contact Alison Littlewood (Programme Manager).