Accessing financial aid when a child has cancer presents numerous challenges for families. The administration of financial aid for families with children diagnosed with cancer is fraught with complexities and logistical challenges. Our participants highlighted the burden of navigating support systems and dealing with the overwhelming and traumatic application processes. The paperwork complexity is compounded by the logistical difficulty of acquiring necessary documents while managing a child's treatment. Strict eligibility requirements further complicate access to financial aid, with inconsistent criteria and a lack of transparency adding to the frustration. Limited financial support from charities, often struggling to secure donations, fails to compensate for lost income. Additionally, the cognitive burden of processing a child's cancer diagnosis leaves families mentally and emotionally drained, making it difficult to manage finances and seek aid.
This burden is often intensified by fragmented support systems and lack of continuity of care, leading to delays and missed opportunities for financial assistance. Consequently, although finances are one of the top priorities for families, the struggle to secure the needed support has left many discouraged. Recommendations for improvement include simplifying application forms, offering automatic eligibility for certain financial aids upon diagnosis, providing infrastructure within wards to support application processes, reallocating funds to increase navigator roles to help families through administrative processes, facilitating connections to parent support groups, and providing tailored information through a centralised platform. Enhanced support for families, both during and after treatment, is crucial to alleviate the multifaceted challenges they face.
This study provided a deeper understanding that enriched the insights from our previous scoping review, which identified the barriers and enabler of effective financial aid in high-income countries.[13] Additionally, we also asked our participants, who have lived experience or professional expertise in this area, to make recommendations for improvement. A similar study from Brisbane, Queensland, among adult cancer survivors (above 40 years old), carers and social workers identified that opportunities for improvement of financial toxicity management included a display of genuine concern around cancer survivors’ finances, clarity and consistency of roles and services, timely flow of information, and proactive navigation.[14] While our study found similar themes, one key difference in the recommended improvements between families of adult and child cancers is that in adult cancers, it is suggested that solutions to reducing financial stress include information regarding expected costs and providing support with returning to work.[6, 14, 15] Interestingly, in our study, parent participants seemed less concerned with knowing about upfront costs for financial planning; this is likely due to the fact that all children diagnosed access treatment through public hospitals, even if parents have private cover. There are, therefore, fewer out-of-pocket expenses for treatment-related care while the child is in hospital. However, many parents have to reduce their employment or business activities to care for their children, and some rely on income protection and financial aid schemes to stay financially afloat.[8] The recommendations for improvement from our families focused on overcoming the administrative and navigational difficulties of accessing financial aid.
people maybe don't need to hear that they're going to be poor and it's going to be really f***ing hard. It's like the last thing that they need to hear. I’m just being blunt. – parent 1, child diagnosed at 7 years old
This, unfortunately, does not indicate better working conditions or greater employer understanding due to a child’s cancer diagnosis. Some of our families reported job losses due to redundancy (parent 6), job sabotage (parent 4) and post-traumatic stress (parent 2).
Consistent with existing literature, our participants identified that financial strain stems primarily from the combination of heightened spending and diminished incomes. During active treatment, escalated expenses included transportation and parking fees, medication costs, cleaning services, food costs during prolonged hospital stays or visits, rent inflation, and elevated utility bills. Subsequently, post-treatment, increased financial burdens arose from educational expenses, ongoing medical costs associated with managing treatment side effects and addressing mental health impacts on family members, and for some, funeral expenses. The resultant financial hardships include depleted savings and the inability to save for extended periods, difficulties affording basic necessities like food, and the risk of homelessness.
Evidently, the financial impacts of a child’s cancer diagnosis are significant and can extend beyond the end of treatment, continuing for years into survivorship. With an increasing percentage of childhood cancer patients surviving, survivors and their families must also contend with the possibility of recurrence, which stands at a cumulative incidence of 4.4% (95% CI: 4.0–4.7), 5.6% (95% CI: 5.2–6.0), and 6.2% (95% CI: 5.8–6.6) at 10, 15, and 20 years, respectively.[16]
It was encouraging to see that charity representatives, social work participants, and members of the parent support group (QPOS), were actively working to improve processes for enhancing families' financial well-being. Reported enhancements in progress included the implementation of regular follow-up assessments at 12 weeks, 6 months, and 12 months after diagnosis (social work team), the development of an intervention program for nursing coordinators to support families during their transition from hospital care to normal life (charity representative 1), and the active advocacy for free parking for oncology families (parents 4, 5, 7; charity representative 3).
A limitation of our study is that all our participants were Australian females. Despite our best efforts, we faced the challenges of low participation rates. We were unable to recruit more charity representatives, as they either did not respond or declined due to concerns about overburdening their staff. With families, although 22 parent participants initially expressed interest and provided their contact details, they later became unreachable.