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.