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Parents of children with cancer often face significant financial burden

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November 21, 2016

Having a child diagnosed with cancer significantly impacted parents’ income and often led to mothers ending their employment, according to a matched control cohort study conducted in Sweden.

Researchers observed pay earning reductions of 21% among mothers and 10% among fathers in the year of their child’s diagnosis.

Emma I. Hovén

“We see that parents’ income from employment decreases after a child’s cancer diagnosis, and for mothers for a long period of time,” Emma I. Hovén, PhD, of the department of women’s and children’s health at Karolinska Institute at Astrid Lindgren Hospital in Stockholm, told HemOnc Today. “These income reductions may cause financial burden if not compensated by state benefits. Importantly, income reductions and reduced working hours even for a shorter period of time may have long-term implications for families’ financial security, career opportunities, wage development and state pensions. Such long-term implications need to be addressed in future studies.”

Impact on income

In their study, Hovén and colleagues referenced a 2015 study by Pelletier and colleagues that found 30% to 50% of U.S. families with a child diagnosed with cancer had at least one parent stop working to provide care for that child. Previous studies reported that approximately 15% of U.S. families fell from above to below the poverty level due to treatment-related financial burden.

To further investigate the short-term and long-term effects of childhood cancer on mothers’ and fathers’ income and employment status, Hovén and colleagues retrieved employment data from 3,626 parents of 1,899 Swedish children aged younger than 18 years who were diagnosed with cancer from 2004 to 2009.

Using generalized linear models, researchers compared employment status and mean income of these parents with a matched control cohort of 34,874 parents of children without cancer.

Researchers also evaluated how demographic characteristics were associated with income reductions and job discontinuation.

The median age at the time of diagnosis was 7 years. Forty percent of children (n = 761) were diagnosed between birth and age 4 years, 20% (n = 373) between ages 5 and 9 years, 24% (n = 461) between ages 10 and 14 years, and 16% (n = 304) between ages 15 and 18 years.

Mean income from employment significantly decreased in mothers and fathers, but the drop was greater among mothers (21% vs. 10%).

Mothers’ earnings were adversely affected through 6 years after diagnosis. Larger income losses were associated with lower employment income at baseline, being unemployed at baseline, lower education level, younger age, living in an intermediate or densely populated area, having other children living at home, and having been born outside of Sweden.

Fathers’ incomes dipped through the first 3 years following diagnosis. Employment at baseline, cohabitating with another adult, younger age and low education level were associated larger income reductions.

Having a younger child diagnosed with cancer appeared associated with more pronounced and long-term deductions in income. The most adverse effects were observed for fathers of children aged birth to 4 years, and for mothers of children aged 9 years or younger at the time of diagnosis (P = .0022).

Mothers also were more likely to remain unemployed after a child’s cancer diagnosis, whereas the employment status of fathers was not adversely affected. This occurred starting at the year of diagnosis and persisted through 5 years after diagnosis (P < .05 for both time points).

“The more pronounced and long-lasting adverse effects on income for mothers than fathers may reflect differences in parenting roles, differences in the psychosocial impact of the cancer experience or less flexible work arrangements for female-dominated jobs,” Hovén said.

In addition to mothers of children with cancer reporting a higher rate of sick leave without use of formal leave, fathers may need to work more to compensate for declines in mothers’ earnings.

Researchers showed mothers with a higher income before her child’s cancer diagnosis were found to have an equivalent income level 4 years after diagnosis, whereas women with lower baseline income were more negatively impacted. Researchers suggest this may be attributed to low-wage occupations having less flexible working conditions.

Worldwide implications

The Standards for the Psychosocial Care of Children With Cancer and Their Families — scientific, evidence-based psychosocial standards developed by an expert panel — recommend that all pediatric oncology centers assess families for financial hardship from the time of diagnosis and throughout the cancer trajectory, Hovén said.

“The importance of such an assessment is emphasized by the findings of our study, as it would facilitate targeted referral for financial counseling and supportive resources,” Hovén said. “Specifically, health care providers, policy makers and employers should be encouraged to pay attention to factors that could facilitate successful merging of work and parenting responsibilities. This could include considering employers' use of family-friendly work arrangements and providing extended support from social work teams at the hospitals to help parents navigate the practical and emotional challenges following a child’s cancer diagnosis.”

The economic burden on families caring for children with cancer can also be mitigated by a country’s policies regarding sick leave. In Sweden, the social security system offers families state benefits when parents are unable to work due to caring for a sick child. These state benefits are normally lower than parents’ income from employment and are unlimited during treatment of a potentially fatal disease, such as cancer.

“In countries with a less generous social security system and less rigorous national regulations regarding work, parents of children with cancer may need to continue working to avoid financial hardship,” Hovén said. “In such societies, the reductions in income from employment may not be as pronounced as in our study if the parents are forced to continue working. Then again, in countries where parents do not have the legal right to reduce working hours, to leave work may be the only option for parents with an increased care burden, and the effects on income and employment may thus be more adverse.

“Regardless of social security system, our findings signal that parents experience substantial work disruptions after a child’s cancer diagnosis,” Hovén added.

Researchers noted they were unable to determine full-time or part-time employment status in their study and that further testing is needed to explore the economic impact of extensive caregiving responsibilities.

“Financial hardship has implications for a family’s economic status, and parents’ mental health,” Hovén said. “Concerns related to work and loss of earnings often cause additional stress in an already demanding situation. For the majority of children, parents represent the primary source of support, and consequently the strains of parents may also affect the children’s well-being. Informal caregivers are increasingly seen as a healthcare resource, which is also true for parents of children with cancer. This emphasizes the importance of giving parents the opportunity to stay at home with the child, being their foremost support, without risking substantial consequences on income and work.” – by Chuck Gormley

For more information:

Emma I. Hovén , PhD, can be reached at department of women’s and children’s health, Karolinska Institute, Astrid Lindgren Children’s Hospital, Q6:05, S-17176, Stockholm, Sweden; email: emma.hoven@ki.se.

Disclosure: The researchers report no relevant financial disclosures.

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