Article Text
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.
- Adolescent Health
- Covid-19
- Paediatrics
- Child Health
- Mental health
Data availability statement
Data are available upon reasonable request. Not applicable.
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Data availability statement
Data are available upon reasonable request. Not applicable.
Footnotes
Twitter @ashleysgamble, @drjessmorgan
Contributors NC contributed to analysis and interpretation of data, drafting and reviewing the manuscript, and approved the final version. AG participated in the study concept and design, drafting and reviewing the manuscript, and approved the final version. JEM participated in the study concept and design, analysis and interpretation of data, drafting and reviewing the manuscript, and approved the final version. BP participated in the study concept and design, analysis and interpretation of data, drafting and reviewing the manuscript, and approved the final version. DC contributed to analysis and interpretation of data, drafting and reviewing the manuscript, and approved the final version. A-SD participated in the study concept and design, analysis and interpretation of data, drafting and reviewing the manuscript, and approved the final version. NC and AS-D are guarantors for the work/conduct of this study.
Funding This work was funded by the Southampton Coronavirus Response Fund.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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