Children with OCD:Identifying Support Strategies for Parents (V1)
Research type
Research Study
Full title
Children with OCD: Identifying Acceptable Support Strategies for Parents (CO-ASSIST)
IRAS ID
283830
Contact name
Rebecca Pedley
Contact email
Duration of Study in the UK
0 years, 11 months, 11 days
Research summary
Research summary
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. There is currently little evidence on how parents/carers and professionals view parental/carer support needs or the help they would find most useful.For this study funded by the NIHR Research for Patient Benefits programme, we will use qualitative mixed methods to identify workable ways of providing support that would meet the needs of parents/carers of children with OCD.
Participants will be recruited from a range of NHS and third sector services and settings. The study has three phases, which will include a different set of participants for each phase (though some overlap is possible).
Phase 1) We will invite 25-30 parents/carers to participate in a one-one interview. Separately we will hold 3-4 focus groups (of 6-8) with professionals who work with young people with OCD. Interviews and focus groups will be used to better understand parent/carer support needs.
Phase 2) We will invite 18-25 key stakeholders (parents/carers, charities, clinicians, OCD researchers) to attend a one-day event where evidence from phase 1 will be discussed to identify strategies and resources to meet parents/carers needs.
Phase 3) A panel of ten parents/carers and professionals will attend a meeting to discuss findings from phase 2 in order to inform the design of a potential intervention to support parents/carers of children with OCD.
This study was initiated and designed through consultation with UK OCD charities and parents/carers and PPI involvement will continue throughout the research process.
NB. All research activities will be undertaken remotely due to Covid-19.
Summary of Results
Aims
To lay the foundation for a parent-focused strategy to improve support for parents/carers of children with OCD.Background
Caring for a child with OCD can be extremely difficult. Parents and carers often feel unsupported, and it is unclear what support is best.Methods
Phase 1
We spoke to parents and professionals to understand the needs and challenges when caring for a child with OCD.Phase 2
We combined our learning with published evidence to produce a roadmap of support strategies. Parents and professionals discussed and voted on these strategies to help us decide which are most helpful while also being feasible to provide.Phase 3
Parents and professionals reviewed phase 2 voting to identify the components of a support package and how these might be delivered.Findings
The most workable, helpful solution to address this gap in provision was an online platform containing sensitive parent-informed resources and information to i) support and equip parents to support their child ii) help parents make sense of OCD iii) support parents to develop a shared understanding of OCD within the family iv) help parents to consider their self-care v) provide opportunities for parents to be heard by people who understand.
Getting the right help at the right time for their child and dispelling misconceptions around OCD were also identified as requiring wider organisational and public health initiatives.Patient and Public Involvement
A parent co-researcher and Chief Executives of two national service-user led charities contributed to all stages of the research project.Dissemination outputs and impact
We are raising awareness by sharing a podcast and plain English summary through social media and charity channels, together with the publication of articles.Conclusions and future plans
There is a pressing need to develop and test this online intervention. We are seeking funding to achieve this.REC name
West of Scotland REC 3
REC reference
20/WS/0131
Date of REC Opinion
9 Oct 2020
REC opinion
Favourable Opinion