ENCOMPASS V1.0
Research type
Research Study
Full title
ENCOMPASS: Pilot testing of a co-adapted group programme for parents/carers of children with complex neurodisability
IRAS ID
322133
Contact name
Kirsten Prest
Contact email
Sponsor organisation
Maternal and Child Health Research Centre, City, University of London
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Background
“Encompass” is a ten-module group programme that aims to provide parents/carers with the knowledge, skills, and confidence to care for their children, navigate systems and meet others in similar situations. It was adapted from the “Baby Ubuntu” programme developed in Uganda with the help of researchers, therapists, and parents/carers.Aims
This study aims to explore whether it is possible to carry out the “Encompass” programme with a group of parents/carers and two facilitators (one healthcare professional and one parent with lived experience) in East London, UK. It also aims to explore how well it is received, and whether a larger study in the future could test how well it works to improve the confidence, knowledge, and wellbeing of the parents/carers.Why is this important?
Children and young people with complex neurodisability, for example cerebral palsy, face many challenges in health settings, in the community, and in schools which parents/carers are expected to manage. Parents/carers often struggle with their own health and wellbeing, which can result in feeling overwhelmed and isolated.Methods
This study will use different methods which will be brought together to decide whether it worth progressing to a larger study in the future. We aim to run ten modules with two groups of parents/carers (ten in each group). We will ask parents/carers to fill in questionnaires at the beginning, at the end and three months after the groups. These questionnaires will explore how empowered parents/carers feel to look after their child and navigate healthcare systems, as well as asking about their own health and wellbeing. We will also conduct interviews with the parents/carers, the facilitators, and leaders within the NHS to explore how the programme went, and how it could be extended into the services in the future.REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
23/EM/0213
Date of REC Opinion
4 Jan 2024
REC opinion
Further Information Favourable Opinion