Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which
require complex packages of multidisciplinary care. Part of the holistic care required
includes supporting the families and parents/caregivers. The aim of the wider study
was ...
Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which
require complex packages of multidisciplinary care. Part of the holistic care required
includes supporting the families and parents/caregivers. The aim of the wider study
was to introduce a new programme (‘Ubuntu’) to parents/caregivers and healthcare
professionals (HCPs) in order to test the feasibility and acceptability of the concept
and content, with the goal of potential adaptation for the UK in mind. Data collection
and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further
papers will report on the feasibility and adaptation data.
Methods: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs 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 journeys, 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) The Information Gap 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