The cost of our failure to support grieving kids
Childhood grief is a hidden public health issue that needs more focused attention and immediate action. Children who experience the loss of a loved one, like a parent or sibling, suffer an adverse childhood event that can have a profound impact.
Research tells us these children are more likely to suffer a chronic disease, mental health illness and potentially shorten their life. We also know these childhood events do not occur in isolation.
A child who experiences one adverse event has an 87% chance of having two or more events.
In the case of a child who loses a parent, it is not uncommon for the death to lead to a reduction in the family income, social upheaval from having to change where they live – which involves a potential change in school and loss of friends, who are key supports for the child.
Children are also left to cope with the emotional distress of their surviving parent, so may hide their distress in order to protect them.
A grieving child’s biography can become their biology. What this means is that the pathological effects can deliver a range of physical impacts, from benign somatic symptoms (sore tummy, headache and sleep disorders) to an increase in childhood diseases like asthma, ADHD, developmental or behavioural delay, and obesity.
It affects their emotional and mental health, their learning at school, relationships with their peers and their long-term risk behaviours, ranging from not wearing a seatbelt to substance abuse.
While encountering death is a part of life, research is clear that unsupported bereaved children can develop troubling and disruptive issues over time and as they progress into adulthood.
Given about 35,000 adults and 500 children died in Aotearoa New Zealand last year, the tentacles of such an adverse event can reach far and wide.
But we do not know how extensive the problem is, because no data is collated on childhood bereavement. This is simply not good enough for an event that can have far-reaching effects on a child.
What is worse is that childhood bereavement is considered neither a physical nor mental health issue by the healthcare system. It remains invisible and therefore little support is available to address the unique needs of these children.
It is not surprising, then, that bereavement support for children who have suffered loss is woefully lacking, under-prioritised and underfunded. For example, the whānau of a parent or sibling dying in an intensive care unit may (or may not) receive a grief support phone call six weeks after the bereavement.
In a recently published audit of children going through a bone marrow transplant that I authored with others, it was found that of the 16 children who died during or after transplant, there were 28 bereft brothers and sisters. Only five had access to emotional support. This included the children who donated their bone marrow to their siblings.
Unfortunately, these sad statistics, and the recommendation to prioritise funding for improved psychosocial care, has seen little change in the bereavement support available.
Our broken health system so often seems to run on the goodwill of non-profit organisations and individuals, or luck. The luck of a parent able to find a counsellor with the skill and space to see a child, or have access to organisations such as Canteen, Child Cancer Foundation, Kenzies Gift, Brake New Zealand, True Colours, Skylight Trust, Victim Support, Cloud Workshop and Seasons for Growth, to name a few. Which in turn exist on fundraising to see bereaved children.
It is outrageous that such work is reliant on fundraising, making it inherently unsustainable, or require whānau to pay, which makes it financially inaccessible to many in need.
One effective solution to the invisibility of children’s bereavement could come from properly resourcing palliative care
As a paediatric palliative care specialist who also works in the childhood bereavement space, I despair and lament. As a country, we must do better than this. We cannot and should not be relying on the generosity of a few to ‘‘fill the gaps’’.
One effective solution to the invisibility of children’s bereavement could come from properly resourcing palliative care throughout the country.
Because paediatric palliative care spans hospital and community, it’s perfectly placed to support siblings who lose their sibling, provide advice for the widowed parent with young children, or support young people who have lost their best friends and are struggling at school.
The need for a public health response to childhood bereavement is urgent. The Government needs to recognise their pain as the public health issue it is, and enable every region to take the action necessary to provide the targeted support to build the resilience of bereaved children and reduce the impact of this adverse event.
They are, after all, the parents of the future.