COVID-19: experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom
COVID-19: experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom
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.
Cerebrospinal fluid, Mental health, Well-being, Worries
3255-3262
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Campion, Anna
91854178-43f7-44d3-b056-6d11e473479b
McNicholas, Roisin
0cf4d1c3-a027-43ca-80d7-0d70557b87b7
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
November 2023
Collaco, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Campion, Anna
91854178-43f7-44d3-b056-6d11e473479b
McNicholas, Roisin
0cf4d1c3-a027-43ca-80d7-0d70557b87b7
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Collaco, Nicole, Campion, Anna, McNicholas, Roisin and Darlington, Anne-Sophie
(2023)
COVID-19: experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom.
Child's Nervous System, 39 (11), .
(doi:10.1007/s00381-023-05980-7).
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.
Text
345_COVID-19- Experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom
- Accepted Manuscript
Text
s00381-023-05980-7
- Version of Record
More information
Accepted/In Press date: 30 April 2023
e-pub ahead of print date: 20 May 2023
Published date: November 2023
Additional Information:
Funding Information:
We would like to thank all parents and children/young people who contributed their time and experiences to this study. We would like to thank the Southampton Coronavirus Response Fund for funding this study. We also give thanks to Mr Gnanamurthy Sivakumar who helped with recruitment and to adapt the original SHARE survey for children and young people with hydrocephalus.
Publisher Copyright:
© 2023, The Author(s).
Keywords:
Cerebrospinal fluid, Mental health, Well-being, Worries
Identifiers
Local EPrints ID: 477465
URI: http://eprints.soton.ac.uk/id/eprint/477465
ISSN: 0256-7040
PURE UUID: 55712419-a201-47fd-a8d6-d20df154ae44
Catalogue record
Date deposited: 06 Jun 2023 17:09
Last modified: 18 Mar 2024 03:51
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Contributors
Author:
Anna Campion
Author:
Roisin McNicholas
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