Exploring the lived experience of families with a COVID-19 positive child: The journey from a critical grounded theory approach.

COVID-19 and associated public health policies have significantly disrupted the lives of both adults and children. Experiences of COVID-positive adults are well described but less is known about the experiences of families of children who receive a positive diagnosis, and the impact of public health policies on this experience. This study aimed to develop a framework to understand the lived experience of families with a child testing positive for COVID-19. We applied a qualitative study design, using grounded theory. The study took place in Melbourne, Australia between July and December 2020, during the first major Australian COVID-19 wave. Parents of children 0-18 years tested at a walk-in clinic at a paediatric tertiary referral hospital were invited to participate. Two interviewers jointly undertook in-depth interviews with parents of children who tested positive. Interviews were transcribed and two analysts used an inductive, critical realist analysis approach with NVivo and a virtual whiteboard. Results are presented incorporating a stratified reality (empirical, actual, real). Families described seven sequential stages of the COVID-19 positive testing journey: COVID-19 close to home; time to be tested; waiting for the test result; receiving the result; dealing with the diagnosis; coping with isolation; and moving forward/looking back. Our findings highlight how public health policies and messages targeting the general (adult) public were experienced by families. We provide a framework that families move through when their child tests positive for COVID-19. Within each phase, we report unmet needs and identify strategies to improve future pandemic planning for parents and children.

Parent perceptions of pediatric oncology care during the COVID-19 pandemic: An Australian study.

BACKGROUND: We examined parents' perceptions of their child's oncology care during a period of significant COVID-19 restrictions in Australia. METHODS: Parents of children, 0-18 years, receiving hospital-based cancer treatment, completed a survey examining their COVID-19 exposure and impact, information and knowledge, and perception of their child's medical care. Recruitment occurred between October and November 2020. RESULTS: Eighty-four parents (95% mothers) completed the survey. Sixty-seven percent of patients were diagnosed pre-COVID-19. The majority of parents (76%) reported negative impacts of COVID-19 on family life, including parenting and emotional well-being despite exposure to COVID-19 cases being very low (4%). Family functioning and parent birthplace were associated with COVID-19 impact and distress. Parents perceived the hospital as a safe place during the pandemic. Very few parents reported delaying presentation to the emergency department (12%). The majority identified no change (69%) or delay (71%) in their child's treatment delivery. Over 90% of parents were confident that COVID-19 did not impact medical decision-making. They felt confident in their COVID-19 knowledge and sought information from trusted sources. Parents reported a positive relationship with their child's care team (93%); however, access to some support services was reduced. CONCLUSION: Understanding patient and family experiences of pediatric oncology care across international contexts during the pandemic is important to inform present and future health care responses. In the Australian context of low infection rates and strict community restrictions, parents perceived their child's oncology care to be relatively unaffected. However, findings indicate that family well-being was impacted, which warrants further investigation.