Dataset Information

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

ABSTRACT:

Background

The beginning of the COVID-19 pandemic marked a period of uncertainty as public health guidelines, diagnostic criteria, and testing protocols or procedures have continuously evolved. Despite the virus being declared a worldwide pandemic, little research has been done to understand how parents manage caring for their child diagnosed with COVID-19. We sought to understand parents' experiences and information need when caring for a child diagnosed with COVID-19.

Methods

A qualitative descriptive study with an inductive and exploratory approach was completed. Participants were recruited through social media and local public health clinics. Data collection and analysis were concurrent. Semi-structured virtual interviews were conducted with 27 participants. Thematic analysis was conducted.

Findings

Four major themes emerged: a) dealing with uncertainty; b) anxiety; c) social stigma and stress; d) a sense of community.

Conclusion

Our study highlights that parent experiences were diverse and multi-faceted, and their experiences evolved and shifted over the course of the pandemic. Parents would benefit from clear and consistent evidence-based online information. Understanding the perspectives of parents caring for a child with COVID-19 is an important step in developing future resources tailored to meet their unique experiences and information needs.

SUBMITTER: Louie-Poon S

PROVIDER: S-EPMC10986929 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature

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Publications

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

Louie-Poon Samantha S Reid Kathy K Appiah Priscilla O PO Hartling Lisa L Scott Shannon D SD

PloS one 20240402 4

<h4>Background</h4>The beginning of the COVID-19 pandemic marked a period of uncertainty as public health guidelines, diagnostic criteria, and testing protocols or procedures have continuously evolved. Despite the virus being declared a worldwide pandemic, little research has been done to understand how parents manage caring for their child diagnosed with COVID-19. We sought to understand parents' experiences and information need when caring for a child diagnosed with COVID-19.<h4>Methods</h4>A ...[more]

PMID: 38564592

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Project description:PurposeThe COVID-19 pandemic has resulted in a global health crisis of unparalleled magnitude. The direct risk to the health of children is low. However, disease-containment measures have society-wide impacts. This study explored the pandemic experiences of parents of children with oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) in the UK.DesignA phenomenological approach underpinned use of an asynchronous online forum method, in collaboration with a patient support group. Data were evaluated using thematic analysis.ResultsThe online forum ran between 7 November and 18 December 2020 with 109 participants.Pandemic experiences were divided into themes relating to healthcare and disease containment. Participants described positive experiences with remote healthcare but identified limitations. Delays and cancellations led to escalation of care to an emergency level, slower developmental progress and feelings of being abandoned by services. Inpatient care was perceived as safe but caring alone was emotionally and practically challenging. Disease containment themes revealed anxiety regarding health risks, 'collateral' damage to well-being because of isolation, and an impact on finances and employment. Parents described a transition from worry about direct health risks to concern about the impact of isolation on socialisation and development. A process of risk-benefit analysis led some to transition to a more 'normal life', while others continued to isolate. Benefits to their child's health from isolation were reported.ConclusionsParents' experiences of caring for a child with OA/TOF during the pandemic were varied. Rapid adoption of telehealth has demonstrated the enormous potential of remote healthcare delivery but requires refinement to meet the needs of the individual. Future pandemic planning should aim to retain community healthcare services to avoid escalation of care to an emergency, manage chronic and developmental concerns, and support parental well-being. Accurate and consistent disease-specific information is highly valued by parents. Third sector organisations are ideally positioned to support this.

Dataset Information

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

Background

Methods

Findings

Conclusion

Publications

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

Similar Datasets

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