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. Out-of-pocket expenses may include petrol and road tolls for travel to and from the hospital, parking at the hospital, food while away from home, and childcare for the siblings. The other thing which 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.
Our study
Previous evidence suggests that financial toxicity and employment interruptions may continue even after a child successfully completes cancer treatment. Also, experiences with financial toxicity may vary according to different familial factors (e.g. having pre-existing savings).
We wanted to examine the longer-term financial toxicity and employment interruptions among parents of children who completed cancer treatment. We also examined how parents’ experiences differed for parents living across different socioeconomic status (SES) areas.
Our findings
We interviewed 56 Australian parents (50 mothers and 6 fathers) of childhood cancer survivors about their experiences with financial toxicity and interruptions to their employment. On average, children had successfully completed cancer treatment two years prior to the study (time since treatment completion ranged from 6 months to 10 years).
Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: 1) families living in low SES areas reported ongoing financial toxicity after childhood cancer; 2) mothers, particularly those who were on, or recently returned from, maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.
SES and financial toxicity
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 organisations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.
“When we got home we had to buy a wheelchair, we had to buy crutches…It’s put a massive financial burden, and still does… We’ve been home for, what, sixteen months, so there’s still a lot of money to spend on side effects of her treatment.” (Mother of a childhood cancer survivor)
Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.
Mothers and employment
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.
“It was probably two years by the time [my son]…could go to day care and not be sick all the time and me go back to work…Basically being out of the [profession] too long apparently and/or too senior…So it’s been incredibly frustrating trying to get work.” (Mother of a childhood cancer survivor)
The way forward
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.
Clinical staff could more consistently assess families’ financial toxicity and refer to financial counsellors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.
Flexible workplace agreements appear 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. Organisations should therefore offer flexibility to parents where possible (e.g. working from home and time in lieu).
These measures are essential to ensure we avoid long-term financial and employment inequalities between families with and without childhood cancer.
This blog post was written by Dr Lauren Kelada. The original manuscript has been published in Pediatric Blood & Cancer at: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28345
Our study
Previous evidence suggests that financial toxicity and employment interruptions may continue even after a child successfully completes cancer treatment. Also, experiences with financial toxicity may vary according to different familial factors (e.g. having pre-existing savings).
We wanted to examine the longer-term financial toxicity and employment interruptions among parents of children who completed cancer treatment. We also examined how parents’ experiences differed for parents living across different socioeconomic status (SES) areas.
Our findings
We interviewed 56 Australian parents (50 mothers and 6 fathers) of childhood cancer survivors about their experiences with financial toxicity and interruptions to their employment. On average, children had successfully completed cancer treatment two years prior to the study (time since treatment completion ranged from 6 months to 10 years).
Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: 1) families living in low SES areas reported ongoing financial toxicity after childhood cancer; 2) mothers, particularly those who were on, or recently returned from, maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.
SES and financial toxicity
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 organisations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.
“When we got home we had to buy a wheelchair, we had to buy crutches…It’s put a massive financial burden, and still does… We’ve been home for, what, sixteen months, so there’s still a lot of money to spend on side effects of her treatment.” (Mother of a childhood cancer survivor)
Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.
Mothers and employment
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.
“It was probably two years by the time [my son]…could go to day care and not be sick all the time and me go back to work…Basically being out of the [profession] too long apparently and/or too senior…So it’s been incredibly frustrating trying to get work.” (Mother of a childhood cancer survivor)
The way forward
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.
Clinical staff could more consistently assess families’ financial toxicity and refer to financial counsellors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.
Flexible workplace agreements appear 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. Organisations should therefore offer flexibility to parents where possible (e.g. working from home and time in lieu).
These measures are essential to ensure we avoid long-term financial and employment inequalities between families with and without childhood cancer.
This blog post was written by Dr Lauren Kelada. The original manuscript has been published in Pediatric Blood & Cancer at: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28345
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