What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Abstract Background Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges which require complex packages of multidisciplinary care. Cerebral palsy, an exemplar complex neurodisability condition, is the most common cause of serious physical disabilities among children globally. It is unclear the best way to meet the emotional, social, practical, and empowerment needs of CYP with complex neurodisability and their caregivers. The aim of this study was to determine the needs and priorities of those caring for CYP with complex neurodisability. This forms part of the feasibility phase of a wider study (ENCOMPASS) which aims to adapt the ‘Baby Ubuntu’ intervention, a participatory caregiver programme for families of CYP with complex neurodisability, to an ethnically diverse urban UK context. Methods Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six healthcare professionals from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving trajectories, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. Results Three themes were identified that related to the aim of understanding caregivers’ experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) A Thirst for Knowledge and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.