Parental concern for clinically vulnerable child during first 18 months of the COVID pandemic

Background: The uncertainties surrounding the COVID-19 pandemic have been associated with increased parental concern. The aim of this study is to explore if this increased level of concern is associated with certain individual/household characteristics or if parents adapted to the ever-changing realities of the COVID-19 pandemic over time.

Methods: This prospective study explored COVID-19 concern trajectories and associated family characteristics of 765 UK parents caring for an immunosuppressed child during the first 18 months of the pandemic using growth mixture modelling. Qualitative analysis was performed to examine in more detail the source of concern.

Results: Four different trajectories of parental COVID-19 concern were identified. Ongoing very high concern was associated with caring for children with nephrotic or respiratory disease; having a child on an organ transplant waiting list; residency in the North of England; or parental vocational inactivity. Explicit concerns voiced by the parents generally followed national trends, but vulnerable status specific concerns were also reported.

Conclusion: Diagnosis and prescribed medication of the immunosuppressed child, geographical location, household composition, and employment status of parent were associated with the different concern trajectories. This information can be helpful in targeting psychological family care where it is most needed.

Impact: Many British parents caring for a clinically vulnerable child during the first 18 months of the COVID-19 pandemic showed high levels of concern with little sign of psychological adaptation. Consistent with findings from non-vulnerable populations, parents mentioned the impact of shielding and repeated isolation on their child's education, social life, and mental health. Unique to the clinically vulnerable population, parents were worried about child's health status, impact of delayed healthcare, and were confused by the contradictory information received from government, doctors, and media. Psychological family care can be targeted to those parents at greater risk for high levels of concern.