Background

The "Encompass" programme aims to support children and young people with complex neurodisability, using cerebral palsy (CP) as an exemplar condition. CP is the most common childhood physical disability globally. Children with CP and their families have multiple, complex healthcare needs. Research shows that parents/carers of children with CP require a large amount of support and information, particularly just after the diagnosis, however this is often lacking. They also benefit from forming support networks with other caregivers.

A recent study reviewed potential low-cost group-based programmes that support parents/carers of children with CP. The Ubuntu model of interventions was seen as a potential solution, as parents/carers gain knowledge about caring for their child, while forming support networks.

“Ubuntu (previously: Getting to know Cerebral Palsy)” is a community-based participatory caregiver programme that has been developed and successfully tested in resource limited settings such as Uganda, Ghana and Bangladesh, and has been implemented in low and low- and middle-income countries globally. The group programme is comprehensive in that it aims to promote inclusion and participation for the child with CP in the community, to maximise the child’s health and development, to empower caregivers through information sharing and peer support, to address stigma, and to promote the human rights of children with disabilities. The groups are co-facilitated by a health professional and an 'expert parent' with lived experience.

Various forms of the "Ubuntu" programme have been tested in many low- and middle- income countries, where it was found to improve parents’ and children’s quality of life. It has not yet been adapted and tested in a high-income country, such as the UK.

Previous work

Initial phases of the ENCOMPASS study, funded by Barts Charity (PI: Heys), have already been completed and are currently being written up. We refer to this work as the 'Encompass 1' study. The phases aimed to:

Explore the needs and priorities of those caring for children and young people with complex neurodisability in Newham, East London and to identify gaps in service provision
Assess whether healthcare professionals and parents/ carers would find it feasible and acceptable to implement an adapted "Ubuntu" programme
Determine how the programme may be adapted for this setting

Overall, both families and health professionals felt this an acceptable and feasible programme, and recommendations were given for adaptation and implementation. Most participants thought that the intervention would have a positive influence on parents/carers and children and would provide valuable opportunities for peer support networks to be forged.

Suggestions were provided regarding the delivery of the intervention (whether to deliver it online or in-person), the content of the intervention (specific information to be incorporated regarding local services, schools, and equipment), and the timing of the intervention (this varied from straight after diagnosis to a few months after).

Many parents/carers in the Encompass 1 study emphasised that an adapted "Ubuntu" programme would be welcome in Newham, as they felt that existing support services were insufficient. The sentiment amongst participants was that the programme would assist families in the UK, as parents/carers of children with disabilities often experience similar difficulties regardless of the country where they are based.