Development of a programme to reduce burden and distress in parents and carers of children with OCD

Background Obsessive-compulsive disorder (OCD) is a debilitating mental health condition, with a lifetime prevalence of 2.3%. OCD frequently begins in childhood and often follows a chronic course. Parents/carers of children with OCD experience significant levels of burden and distress.

Despite NICE guidelines and NHS England s Commitments to Carers recognising the need to support caregivers, parents/carers of children with OCD typically receive little support to manage the demands of their role. Evidence-based and accessible support for parents/carers in this role is urgently needed.

Through qualitative work and co-design with parents and professionals, our recently completed NIHR-funded project CO-ASSIST resulted in an outline for an intervention to reduce parental burden and distress.

Due to the nature of the proposed intervention (an online platform for parents), further infrastructure and content development is necessary before the online platform can be released, feasibility tested and definitively evaluated.

Aim: To undertake the necessary preparatory work for a future programme to reduce emotional burden and distress in parents and carers of children with OCD Objectives: • To co-design (with parents), a high-fidelity prototype of the digital platform • To develop a new parent-centred measure to capture the specific burdens associated with being a parent/carer of a child with OCD, suitable for use in practice and research • To establish a diverse Lived Experience Advisory Panel (LEAP) of parents and work together to co-design our subsequent programme • To strengthen our multidisciplinary project team and refine our subsequent programme Development work plan Our planned work incorporates three work packages.

WP1.

Develop a measure of burden specific to parents/carers of children with OCD Current measures of carer burden do not adequately capture the stresses imposed by childhood OCD.

Parent consultations have identified the need for a new measure, which can be employed in our future evaluation of the online platform.

Using secondary data analysis of qualitative data from CO-ASSIST, we will work with parents of children with OCD (who are diverse in ethnicity and gender) to co-produce a draft parent burden measure, preparing for full psychometric evaluation in our full programme.

WP2.Co-design the digital platform Co-production undertaken through CO-ASSIST identified the modality of the intervention (online platform) and an outline of its content and materials.

To specify the resources, activities and expertise needed in our NIHR Programme Grant for Applied Research (PGfAR), we require further detail such as the features to be included and specifics around content design, such as the modality of each parent resource.

We will conduct iterative co-design workshops with parents to develop a high-fidelity platform prototype and complement these with separate content co-production workshops.

WP3.Strengthening the team and refining plans for our PGfAR Through workshops (n=4) with our multi-disciplinary and multi-sector team and meetings with our LEAP (6 meetings with 8-10 members), we will refine our PGfAR. Timelines for delivery Our project duration will be 18-months, after which we will submit a PGfAR application.

Anticipated Impact Our work will deliver the detail required to progress to the evaluation and implementation of our online platform.