Financial Burden of Childhood Cancer Treatment on Parents
In addition to the emotional burden of childhood cancer, affected families often face significant financial difficulty due to a range of issues including treatment expenses and parents’ time away from work. A 2019 systematic review of 35 articles noted a high prevalence of job disruption in parents (especially mothers) of children with cancer, as well as adverse socioeconomic effects that persisted into early survivorship in some cases.1 The highest risk of these effects was observed in families of younger patients and those with hematological cancers, and families with a lower parental socioeconomic status (SES).
An earlier cross-sectional study published in the Journal of Pain and Symptom Management examined aspects of economic hardship in 71 families of children with progressive, recurrent, or nonresponsive cancer. Nearly all (94%) families indicted some type of disruption, with at least 1 parent having to quit a job due to their child’s illness in 42% of cases.2 While all families experienced substantial income losses, the effect was greater for lower SES families; 15% of the families who were not previously classified as poor fell to below 200% of the federal poverty line after diagnosis.
While these findings help to quantify the general financial and employment consequences of childhood cancer, the authors of a study published in April 2020 in Psychosocial and Supportive Care aimed to address the need for qualitative research to more closely explore the lived experiences of affected families.3 Lauren Kelada, PhD, postdoctoral research fellow at the School of Women’s and Children’s Health at the University of New South Wales Sydney and the Kids Cancer Centre at Sydney Children’s Hospital in Australia, and colleagues used the vocational and financial effect section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form (PAIS) to assess the financial toxicity of childhood cancer among 56 parents of childhood cancer survivors (89% mothers; median, 2.13 years post-treatment).
The results demonstrated numerous sources of financial toxicity among participants, including travel expenses and reduced work hours as necessary to accommodate treatment needs. Persistent post-treatment financial and employment challenges were especially common among mothers and among families living in low SES areas.
More than half (51.8%) of parents reported that they resigned or reduced their work hours after the diagnosis, and roughly two-thirds (67.9%) experienced employment disruptions or barriers to reentering the workforce. The child’s medical appointments (53.6%) and ongoing health needs (37.5%) were among the most frequently cited disruptions.
The findings further revealed shifts in parents’ attitudes towards employment following their child’s cancer treatment, with many indicating that their employment was now less important to them (32.1%) or that they wanted to engage in work that would be more helpful to others (16.1%).
Taken together, these observations highlight the long-term challenges affecting the financial health of families with a childhood cancer survivor. Here, Hematology Advisor interviewed Dr Kelada to glean additional insights regarding the topic.
Hematology Advisor: What prompted your group’s investigation into the financial toxicity of childhood cancer?
Dr Kelada: Childhood cancer can have enormous physical and psychological impacts on families. The financial toll of childhood cancer can also be significant. During treatment, families face out-of-pocket expenses, which can contribute to their “financial toxicity,” meaning the financial burden related to a cancer diagnosis and treatment. The other thing [that] affects families’ financial toxicity is that parents commonly reduce their working hours after their child is diagnosed with cancer, which may mean their household income is also reduced.
The financial toxicity and employment disruptions during cancer treatment are clear. We wanted to examine the longer-term financial toxicity and employment interruptions among parents of children who completed cancer treatment. Also, experiences with financial toxicity may vary according to different familial factors, such as having pre-existing savings. We therefore wanted to examine how parents’ experiences differed for parents living across different SES areas.
Hematology Advisor: What did you identify as the main sources of financial toxicity in these families?
Dr Kelada: During their child’s treatment parents reported that parking fees, fuel, and other expenses related to regularly traveling to and from the treating hospital — for example, road tolls — contributed to their financial toxicity. After treatment completion, parents reported that out-of-pocket medical costs contributed to their financial toxicity.
Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: families living in low SES areas reported ongoing financial toxicity after childhood cancer; and mothers, particularly those who were on or recently returned from maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.
Presumably for families living in low SES areas, the income loss associated with reduced working hours, coupled with out-of-pocket costs, were exacerbated by their lack of pre-existing savings and assets. While financial support from families, communities, non-profit organizations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.
Mothers who were on maternity leave when their child was diagnosed and those who recently returned to employment after maternity leave reported that they wanted to work but were unable to find suitable employment after treatment completion. A large issue for these mothers was that potential employers thought they had been out of work for too long. The other issue was that mothers needed employment that would allow flexible working hours and arrangements to work from home in order to attend medical appointments and attend to their child’s other medical needs
Hematology Advisor: What are some of most practical solutions to these issues, and how can clinicians assist and advocate for patients and their families in these matters?
Dr Kelada: Even families in a high-income country with universal healthcare can experience detrimental financial and employment impacts of childhood cancer several years after treatment completion. Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.
Clinical staff could more consistently assess families’ financial toxicity and refer to financial counselors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.
Flexible workplace agreements appear to be important for parents of children with cancer and may be particularly important for mothers returning to work after their child’s treatment completion. Cancer-related disruptions are likely to continue for years after treatment completion. Organizations should therefore offer flexibility to parents where possible, such as working from home and time off in lieu of overtime pay. This is something for which clinicians can help advocate. These measures are essential to ensure that we avoid long-term financial and employment inequalities between families with and without childhood cancer.
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Hematology Advisor: What are remaining research needs regarding this topic?
Dr Kelada: We need to develop targeted financial and employment support strategies for parents, particularly mothers. Return-to-work interventions have previously been shown to help adult survivors of cancer in returning to work when they are ready. Similar interventions for parents of child cancer survivors should also be assessed.
Research could also determine whether allowing greater flexibility with outpatient medical appointment times can reduce the interference with parents’ — mainly mothers’ — careers.
Source: Hematology Advisor By: Tori Rodriguez, MA, LPC
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References
- Roser K, Erdmann F, Michel G, Winther JF, Mader L. The impact of childhood cancer on parents’ socio-economic situation-a systematic review. Psychooncology. 2019;28(6):1207-1226.
- Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage. 2014;47(3):594‐603.
- Kelada L, Wakefield CE, Vetsch J, et al. Financial toxicity of childhood cancer and changes to parents’ employment after treatment completion [published online April 25, 2020.] Pediatr Blood Cancer. doi: 10.1002/pbc.28345