Worryingly, there are reports that a number of children appear to be reacting to the new coronavirus by developing multisystem hyperinflammatory state with similar symptoms to that seen in toxic shock syndrome, necessitating intensive care (Campbell and Sample, 2020).
The COVID-19 pandemic is a worry for all parents because there are currently no vaccines against this pneumonic infection. Initially, there were reassurances that the disease primarily affected the frail elderly, but it is now known that coronavirus can infect people of all ages. These new reports citing a link between COVID-19 and a type of toxic shock in children make it especially worrying for parents of children with long-term health conditions and disabilities. In England, about 15% of children and young people have a long-term illness, many of whom will be at risk, especially those with respiratory conditions.
Historical aspects of long-term conditions
It is important to stress that many long-term conditions of childhood have emerged perhaps as a tribute to the success of modern medicine. This is because prior to the 20th century many long-conditions of childhood that are now commonly seen in contemporary society were not compatible with long life.
For example, until 1922, type 1 diabetes was always fatal within months or even weeks of diagnosis. The discovery of the hormone insulin was made by Frederick Banting and Charles Best from the University of Toronto in the 1920s, and it was the introduction of insulin derived from cow pancreas as a treatment that fundamentally changed health outcomes for children with this disease. In January 1922, 14-year-old Leonard Thompson was the first person to receive this new treatment.
Before the era of modern medicine many long-term conditions of childhood were not amenable to treatment, and infanticide was not uncommon throughout history. During the classical period, for example, infants deemed ‘abnormal’ were left to die in the open, and infanticide for children with disabilities or deformities was not unusual in many societies up until the dawn of the 20th century.
The parameters of long-term conditions of childhood
Long-term conditions of childhood can affect all bodily systems, which include:
To address these issues the government has produced guidance to help affected families (Public Health England, 2020).
Providing care at home for children with long-term conditions
Undoubtedly, this pandemic is a cause of significant worry for parents of children with long-term conditions, compounded by new revelations about the effects of the disease on certain groups of children. However, researchers at Oxford University's Jenner Institute are actively endeavouring to develop a reliable coronavirus vaccine and are optimistic that one might be available in late 2020 (Milmo, 2020). Although antiviral drugs are currently being evaluated in research trials, none so far have been shown to be effective in treating coronavirus.
Until such time as a vaccine or antiviral agent become available children with long-term conditions remain vulnerable. Nurses remain actively involved with the care of sick children in the home environment during the pandemic. Many community children's nursing teams such as that based within Sheffield Children's Hospital continue to support the families of children with long-term conditions by delivering home care. This is because children receiving home ventilation, for example, need skilled and complex nursing care delivery.
As a response to concerns about children and COVID-19 the Royal College of Paediatrics and Chid Health (2020) has produced guidance for parents, recommending that groups of children at highest risk of developing complications need to be isolated for at least the duration of the virus lockdown to minimise risk of infection.
How children view the pandemic
It should be stressed that young children view the world through different eyes to that of an adult, and the role of parents in interpreting the world as seen through their child's eye should not be underestimated. Information that mitigates a child's stress during this pandemic is vital. High-quality information giving to the child is a vital aspect of family-centred care.
Hence, for some children illness can be caused by their own thoughts or behaviours, and almost seen as a punishment. It is because young children have such a poor understanding of illness and how infection is spread that providing appropriate information about COVID-19 is vital. Adults need to be vigilant that their children are not inappropriately blaming themselves or feeling that the illness is a punishment for previous bad behaviour. It is also important to note that words or phrases that health professionals might use when describing health-related topics to young children can be easily misunderstood and can frighten them. For example, using the term bugs to describe the cause of infection might have different connotations to a child who has been watching TV programmes such as Goosebumps (Rushforth, 2006).
We are all frightened of COVID-19, perhaps in a similar way to that of our ancestors when faced with the horrors of the Black Death that wiped out 60% of Europe's entire population in the 14th century. Dalton et al (2020) advise that adults need to honest with their children when asked about the disease, but without overwhelming them with their own fears.
In the absence of truthful information about the disease, children will try make sense of the situation on their own. However, young children's concepts and understanding of illness can be enhanced through appropriate information giving strategies. Great Ormond Street Children's Hospital (GOSH) has produced a series of information leaflets about COVID-19 for specific groups of children with long-term conditions. These child-friendly information leaflets can be downloaded from the GOSH website (https://tinyurl.com/gosh-covid). They include leaflets on:
The charity Together for Short Lives has also produced guidance for families (https://tinyurl.com/together-covid). Additionally, Southampton children's hospital has developed a useful child-friendly poster explaining COVID-19 to children, which is available from the Royal College of Paediatrics and Child Health website (https://tinyurl.com/Southampton-covid).
Conclusion
It is important to highlight that some parents of children with long-term conditions and special needs have been concerned about the use of the recently launched frailty scale (https://tinyurl.com/frailty-scale) to help health professionals determine who should have active COVID-19 treatment and those who should be only offered end-of-life care. However, in response to these concerns, the NHS Specialised Clinical Frailty Network has emphasised that the scale ‘may not perform as well in people with stable long-term disability’ and suggests that it is not used in such cases.
Crucially, the network also does not advise that the scale is used to evaluate children because it has not been widely validated in younger populations or in those with a learning disability.