Health services for young people and children with serious conditions such as cancer have to continue, despite the restrictions and concerns posed by the covid outbreak. But many parents fear their children are at increased risk of covid infection passed from parents or during hospital visits. Some are also concerned about treatment being delayed as a result of overstretched health services - and they feel there’s a lack of information and advice.
The SHARE study - How to support children with a serious condition and their parents during the COVID-19 outbreak - aims to increase our understanding of the evolving experiences, information needs and decision-making of families coping with serious illness in the midst of a global pandemic. The study, carried out with colleagues at the University of Southampton, includes families who have a child undergoing treatment for cancer, as well as children with other chronic or life-limiting conditions. It also includes the delivery of an online psychosocial support intervention Online Hope For The Community specifically designed for parents of children with cancer.
A survey carried out during the first wave of the research uncovered fears about children - particularly those with suppressed immune systems as a result of cancer treatment - being at increased risk of infection. Parents said they had to be more vigilant to spot the signs of infection and they described the difficulties of coping with the psychological impact of lockdown, both on themselves and their children. Many highlighted the need for clear information and guidance to address their fears and concerns. Further rounds of the survey have clarified our understanding about how these concerns have developed.
The research resulted in the national supportive charity CCLG - Children's Cancer and Leukaemia Group - producing clear and authoritative patient facing information to support families. Delivering the psychosocial intervention was associated with improvement in wellbeing in the parents who completed the course. Further waves of this study are ongoing to continue to understand how information needs and experiences evolve as the pandemic and its management changes.
COVID-19 and children with cancer: Parents' experiences, anxieties and support needs was published in Pediatric Blood and Cancer.