Collaço, Nicole, Gamble, Ashley, Morgan, Jessica Elizabeth et al. (3 more authors) (2022) Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK:a longitudinal study. Archives of Disease in Childhood. ISSN 1468-2044
Abstract
OBJECTIVE: To explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved. DESIGN: Online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted. SETTING: Online. PARTICIPANTS: Parents/caregivers of children with cancer. RESULTS: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents'/caregivers' worry about the virus and vigilance about their child's virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19. CONCLUSIONS: The COVID-19 pandemic disrupted people's lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ. |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Social Sciences (York) > Centre for Reviews and Dissemination (York) The University of York > Faculty of Sciences (York) > Hull York Medical School (York) |
Depositing User: | Pure (York) |
Date Deposited: | 13 Dec 2022 11:10 |
Last Modified: | 13 Mar 2025 05:29 |
Published Version: | https://doi.org/10.1136/archdischild-2022-324905 |
Status: | Published online |
Refereed: | Yes |
Identification Number: | 10.1136/archdischild-2022-324905 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:194357 |