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Child's Nervous System
Published in: Child's Nervous System 11/2023

Open Access 20-05-2023 | Hydrocephalus | Original Article

COVID-19- Experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom

Authors: Nicole Collaço, Anna Campion, Roisin McNicholas, Anne-Sophie Darlington

Published in: Child's Nervous System | Issue 11/2023

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Abstract

Purpose

Little is known about the impact of COVID-19 on children and young people (CYP) with hydrocephalus and their families. This study explored the experiences and support needs of CYP with hydrocephalus and parents who have a child with hydrocephalus during the COVID-19 pandemic.

Methods

CYP with hydrocephalus and parents of CYP with hydrocephalus in the United Kingdom completed an online survey with open and closed questions exploring experiences, information, support needs and decision making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken.

Results

CYP aged 12-32 years (n=25) and parents of CYP aged 0-20 years (n=69) responded. Parents (63.5%) and CYP (40.9%) worried about the virus, and both were vigilant for virus symptoms (86.5% and 57.1%). Parents (71.2%) and CYP (59.1%) worried about their child/feeling more isolated during the virus outbreak. Parents felt concerned about having to take their child to hospital with a suspected shunt problem during the virus outbreak (64.0%). Qualitative findings reported the following themes: (1) Healthcare and treatment provision: delays and challenges to access and availability of care (2) Impact of COVID-19/lockdown on daily lives and routines, and (3) Provision of information and support for parents and CYP with hydrocephalus.

Conclusion

The impact of COVID-19 and national measures to control the spread of the virus- no contact with anyone outside the household significantly impacted the daily lives and routines of CYP with hydrocephalus and parents. Social engagements were missed, families faced challenges to their work life, education and access to health care and support, which subsequently contributed negatively to their mental wellbeing. CYP and parents highlighted a need for clear, timely and targeted information to address their concerns.
Appendix
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Metadata
Title
COVID-19- Experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom
Authors
Nicole Collaço
Anna Campion
Roisin McNicholas
Anne-Sophie Darlington
Publication date
20-05-2023
Publisher
Springer Berlin Heidelberg
Published in
Child's Nervous System / Issue 11/2023
Print ISSN: 0256-7040
Electronic ISSN: 1433-0350
DOI
https://doi.org/10.1007/s00381-023-05980-7

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