Children's rights to be involved in matters that affect them are enshrined in the UN Convention on the Rights of the Child. Further, children have the right to respect for their family life (Article 8, Human Rights Act 1998 and European Convention on Human Rights). The death of a parent during childhood is a life-altering experience, with 111 UK children bereaved of a parent every day.
In the UK there have been over 64 000 excess deaths associated with COVID-19. Every deceased person is someone's relative, often with a family network including children.
The death of a parent can be highly emotive and families often want to protect children by exclusion. However, not being involved in an age and developmentally appropriate way can impact negatively on their health and wellbeing (Parsons, 2011). Childhood bereavement increases the risk of adverse outcomes in adolescence and adulthood (Kissil, 2016). To minimise these risks, end of life professionals support families to involve children when a parent is dying. Organisations such as Macmillan, Marie Curie and Child Bereavement UK have developed guidance. Norway and Sweden have placed a duty on health-care professionals to involve children when a parent has a life-threatening illness (Karidar et al, 2016).
But what impact has the COVID-19 pandemic had on children's involvement when a parent is dying in the UK?
Children have been largely excluded from visiting dying parents. In hospitals, children became almost invisible. Due to infection risks, hospitals, hospices and care homes introduced severely restricted visiting rules although compassionate visiting at the end of life was introduced by many organisations part-way through the pandemic in the UK. While organisations tried to ensure that patients did not die alone, the chances of family members being present at the end of life reduced dramatically. Acknowledging concerns around infection, it is difficult to see how such a blanket visitation ban is consistent with children's Article 8 rights. Health and social care workers are trained to support families facing bereavement, but the restrictions imposed may have prevented them from providing optimal care.
The pandemic has disproportionately affected our Black, Asian and Minority Ethnic communities, as well as caused an increase in mental health problems with an increase in childhood presentations (Holmes et al, 2020). This widens inequity further.
‘… we call upon all professionals and organisations providing care to dying patients to ensure that children's rights are recognised and protected.’
Children are susceptible to depression, fear, anxiety and post-traumatic stress disorder during lockdown; social isolation, separation from peers and the loss of school support will intensify these issues. Repeated media coverage of COVID-19 deaths and infection risk can only heighten children's fear.
It is crucial that the rights of children are protected during the remainder of the pandemic and we call upon all professionals and organisations providing care to dying patients to ensure that children's rights are recognised and protected.
In addition, we call on the newly appointed Minister for Bereavement to ensure that children are not forgotten throughout the COVID-19 pandemic, and their voices are heard. Culturally competent, evidence-based services should be urgently commissioned to meet the holistic needs of children when a parent is dying with COVID-19 to reduce the risks of long-term harm.