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Abstract

Background

Caring for children with complex neurodisability, such as cerebral palsy, places significant demands on caregivers’ wellbeing. Although family-centred care is recognised as the gold standard, it is not consistently implemented, and caregivers report unmet needs. Group-based programmes have been developed to provide education, peer support and shared problem-solving. Evidence is growing for such interventions in resource-constrained settings; however, research on adaptation for high-income settings remains limited, particularly for this population.

Aim

This thesis explored whether lessons from low- and middle-income countries could inform development and evaluation of a caregiver support programme in the UK. It aimed to co-adapt and pilot-test a Ugandan programme (“Baby Ubuntu”) for use in East London, an ethnically and culturally diverse setting with high social deprivation.

Methods

A systematic review examined the existing evidence for caregiver group programmes aiming to improve knowledge, skills, confidence and wellbeing. Concurrently, the “Baby Ubuntu” programme was adapted for UK National Health Service settings using participatory methods and the ADAPT guidance. A pilot and feasibility study explored the feasibility and acceptability of delivering and evaluating the adapted programme for caregivers in East London. The perceived impact of the programme was explored through mixed methods.

Findings

The systematic review demonstrated improvements in caregiver knowledge, confidence, and wellbeing following group programmes; however, certainty of the evidence was low, with many studies at high risk of bias. An adapted ten-session programme, “Encompass”, with co-facilitation by health professionals and expert parents, was developed to support caregiver skills and confidence. “Encompass” could feasibly be delivered within local community child health services. Progression criteria for a larger evaluation were met or required minor adjustments. Caregivers and facilitators found the programme highly acceptable. Caregivers described positive impacts on their wellbeing, confidence in caring for their child and navigating services, advocacy and community participation, and social support networks. Collectively, findings highlight that group caregiver programmes developed for resource-constrained settings are relevant and feasible for high-income settings.

Conclusions

This thesis demonstrates how interventions from resource-constrained settings can be meaningfully adapted to high-income contexts. It advances understanding that families’ needs in childhood complex neurodisability are similar across settings, and that with culturally sensitive co-design, solutions may also align. The results establish the feasibility and acceptability of “Encompass” and highlight the central role of lived experience and group processes in shaping impact, laying the groundwork for a larger-scale evaluation and offering a model of family-centred care that complements existing services.

Publication Type:	Thesis (Doctoral)
Subjects:	R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments:	School of Health & Medical Sciences > Department of Nursing & Midwifery School of Health & Medical Sciences > School of Health & Medical Sciences Doctoral Theses Doctoral Theses

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