“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.