Photo by Bill Branson
Results of a small study reveal the material hardships families experience when a child is undergoing cancer treatment.
Researchers surveyed 99 families of children with cancer.
Six months after the child’s diagnosis, 29% of the families reported having at least one household material hardship, such as food, housing, or energy insecurity.
Twenty percent of the families had reported having such hardships at the time of the child’s diagnosis.
Kira Bona, MD, of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center in Massachusetts, and her colleagues reported results from this survey in Pediatric Blood & Cancer.
The researchers surveyed 99 families of pediatric cancer patients treated at Dana-Farber/Boston Children’s, first within a month of diagnosis and then 6 months later.
At diagnosis, 20% of the families were low-income, which was defined as 200% of the federal poverty level. Six months later, an additional 12% suffered income losses that pushed them into the low-income group.
At 6 months, 25% of the families said they had lost more than 40% of their household income due to treatment-related work disruptions. A total of 56% of adults who supported their families experienced a disruption of their work.
This included 15% of parents who either quit their jobs or were laid off as a result of their child’s illness, as well as 37% of respondents who cut their hours or took a leave of absence. Thirty-four percent of these individuals were paid during their leave.
At 6 months, 29% of families said they had at least one material hardship. Twenty percent reported food insecurity, 17% reported energy insecurity, and 8% reported housing insecurity.*
These findings surprised researchers, who said they expected lower levels of need at their center because it provides psychosocial support for patients and has resource specialists to help families facing financial difficulties.
“What it says is that even at a well-resourced, large referral center, about a third of families are reporting food, housing, or energy insecurity 6 months into treatment,” Dr Bona said. “If anything, the numbers in our study are an underestimate of what might be seen at less well-resourced institutions, which was somewhat surprising to us.”
By focusing on specific material hardships, which can be addressed through governmental or philanthropic support, the researchers hope they have identified variables that are easier for clinicians to ameliorate than overall income.
Dr Bona said subsequent research will examine whether material hardship has the same effect on patient outcomes as low-income status.
“If household material hardship is linked to poorer outcomes in pediatric oncology, just like income is, then we can design interventions to fix food, housing, and energy insecurity,” she said. “It’s not clear what you do about income in a clinical setting.”
*Definitions for household material hardships were as follows.
Food insecurity was measured via the US Household Food Security Survey Module: Six-Item Short Form, which includes questions to asses if respondents:
- sometimes/often do not have enough food to eat
- sometimes/often cannot afford to eat balanced meals
- sometimes/often worry about having enough money to buy food, etc.
Families met the definition for housing insecurity if they reported any of the following:
- crowding (defined as >2 people per bedroom in the home)
- multiple moves (>1 move in the prior year)
- doubling up (having to live with other people, even temporarily, because of financial difficulties in the past 6 months).
Families met the definition for energy insecurity if, in the prior 6 months, they had experienced any of the following:
- received a letter threatening to shut off the gas/electricity/oil to their house because they had not paid the bills
- had the gas/electric/oil company shut off electricity or refused to deliver oil/gas because they had not paid the bills
- had any days that their home was not heated/cooled because they couldn’t pay the bills
- had ever used a cooking stove to heat their home because they couldn’t pay the bills.