Prest, Kirsten;
Wilson, Emma;
Vassiliadou, Io;
Ali, Sayeeda;
Lakhanpaul, Monica;
Morris, Christopher;
Tann, Cally;
... Heys, Michelle; + view all
(2024)
‘There was nothing, just absolute darkness’: Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.
Child: Care, Health and Development
, 50
(4)
, Article e13303. 10.1111/cch.13303.
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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. 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.
| Type: | Article |
|---|---|
| Title: | ‘There was nothing, just absolute darkness’: Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/cch.13303 |
| Publisher version: | http://dx.doi.org/10.1111/cch.13303 |
| Language: | English |
| Additional information: | © 2024 The Author(s). Child: Care, Health and Development published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | Social Sciences, Science & Technology, Life Sciences & Biomedicine, Psychology, Developmental, Pediatrics, Psychology, caregivers, cerebral palsy, child disability, community-based interventions, complex neurodisability, family, groups, CEREBRAL-PALSY, HEALTH-CARE, SOCIAL SUPPORT, PEER SUPPORT, TIME USE, PARENTS, DISABILITY, PERSPECTIVES, CHALLENGES, MOTHERS |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Culture, Communication and Media UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10196251 |
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