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The hidden health crisis – children’s cancer needs more than medicine

Research

The hidden health crisis – children’s cancer needs more than medicine

October 2021 – A report by Redkite highlighting the unseen challenges and gaps in support for families facing childhood cancer.

Executive Summary

There is a misconception that in Australia, if you have a child with cancer, the healthcare system has all the resources available to support you and your family unconditionally throughout your child’s entire cancer journey. While it’s true that we have some of the highest standards of healthcare and survival rates from paediatric cancer in the world, it’s not true to say families receive the holistic support they need to manage the short and long-term impacts of their child’s cancer. There have been strides made by non-profits and the health sector in recent years, however, it is still very much an under-resourced area and families are not receiving all the support they need.

Redkite’s programs and services address families’ broader, more complex psychosocial needs which extend – largely unseen and unacknowledged – beyond the hospital walls. In 2020, as demand for Redkite’s services reached unprecedented levels, we sought to identify and quantify the extent to which families’ support needs along the entire length of their cancer experience were not being met. From diagnosis to treatment and after treatment, paediatric cancer is a complex trauma where few family members are left unscathed, and this trauma can have a ripple effect across the entire community. We needed to understand the scale of the problem, identify who was missing out, when, and what kind of support they needed.

Redkite’s family needs survey set out to reveal and quantify the gaps in support for families facing childhood cancer throughout their cancer experience. In total, 713 parents and carers of a child (aged 0-18 years) diagnosed with cancer between 2010 and 2020 responded to the survey.

Five significant areas for concern were identified:

  1. The greatest gaps in support are after treatment ends and in bereavement
  2. There are clear gaps in emotional and mental health support across the whole family
  3. In particular, support is lacking for the emotional and mental health of the child living with cancer
  4. The gaps are even more significant for their siblings
  5. There is a need for greater connection with other families

Families were at even more disadvantage if:

  • Anyone in their family had to relocate for treatment
  • They lived in a regional or remote location
  • They were the mother of the diagnosed child
  • The diagnosed child had experienced a relapse
  • They were Aboriginal and Torres Strait Islander

While it was clear there were high levels of need across all stages of the cancer experience, family needs were least likely to be met at end of treatment onwards and during bereavement – and the scale of the issue is considerable. We estimate that in Australia, there are around 2,600 paediatric cancer families not getting the specialised emotional and mental health support they need from end of treatment onwards.

We estimate 10,000 mums, dads, diagnosed children and their siblings are missing out on the specialised emotional and mental health support they need to cope with childhood cancer.

While the predominant focus is medical treatment when it comes to childhood cancer, it is also critical to address and support the long-term wellbeing of the entire family. Redkite’s mission is to be a lifeline for these families, providing essential non-medical support to help them as they navigate the uncertainty and trauma of cancer, and manage its long-term impacts on all family members. We are committed to ensuring more children and families get the support they need – whether they are in hospital or at home, no matter where they are located in Australia, at every stage of their cancer experience.

Based on our research findings, we need to continue investing in services that better support families in their transition from hospital to the community; increase the capacity of our practitioners to deliver specialised support specifically tailored to the emotional and mental health needs of children, including the diagnosed child and their siblings; and become stronger advocates alongside bereaved families to ensure their voices and needs are heard.

Read the full report here.

Download report

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