Losing a child to cancer takes financial toll, too
By Amy Norton
NEW YORK | Tue Jan 4, 2011 4:42pm EST
NEW YORK (Reuters Health) - Many families who lose a child to cancer face not only emotional devastation, but serious financial problems as well, a new study suggests.
Interviewing U.S. and Australian parents who had lost a child to cancer, researchers found that most had needed to cut down on work during their child's illness -- resulting in sometimes severe income loss.
Overall, one-quarter of U.S. and 39 percent of Australian families said they had faced a "great deal" of financial hardship during their child's treatment.
One-third of Australian families and 19 percent of those in the U.S. lost more than 40 percent of their income because at least one parent had to quit or cut down on work. And that kind of income loss is generally considered "catastrophic," lead researcher Dr. Veronica Dussel, of the Dana-Farber Cancer Institute in Boston, said in an e-mail.
"Our results underscore that the cost of losing a child to cancer exceeds emotional grief," Dussel and her colleagues report in the Journal of Clinical Oncology.
The study, the researchers say, is one of the first to look at the financial toll of losing a child to cancer. And it suggests that their economic strains may be even greater than those of families with children who survive cancer, although the reasons are unclear.
In addition, Dussel pointed out, the toll was greatest for families who already had relatively low incomes.
These families generally lost the greatest percentage of income, and 16 percent of U.S. families and 22 percent of Australian families slid below the poverty line during their child's illness.
The findings are based on 141 families with a child treated at one of two U.S. children's hospitals, and 89 families from one Australian medical center.
In general, the Australian families reported greater financial difficulties. Dussel noted that low-income U.S. families were more likely than their Australian counterparts to use fundraisers as a way to cope. "But it is hard to know if this accounts for some of the difference in perceived financial hardship," she said.
What the findings do suggest, she and her colleagues write, is that the policies and resources in place at all three study sites were not enough to keep families from suffering financially as well as emotionally.
"The results from our study suggest that actions intended to prevent or reduce income loss may improve family distress," Dussel said.
Compared with the experience of families whose children survived cancer treatment, "the end-of-life period brings more frequent hospitalizations and increased care-giving demands," the authors note. Variable insurance coverage for palliative measures, home care assistance and funeral expenses may also account for potentially higher costs to bereaved families, they add.
Work disruptions were also more common than reported by families with children who survived.
Overall, the researchers found, the type of cancer and duration of illness did not explain the level of financial hardship experienced by a bereaved family. Younger parents and those with lower education levels were more likely to report hardships, and poverty level before the illness was strongly associated with subsequent financial distress.
Exactly what preventive actions would be most effective requires further study, the researchers say. But helping families take advantage of existing resources is also important.
Dussel noted that financial counselors -- sometimes available at children's hospitals -- can help parents find ways of coping that do not involve draining their savings and assets.
Some medical centers, she said, also have "resource specialists" who can help families find out if they are eligible for government benefits or support from private foundations.
But Dussel and her colleagues say their findings also point to a need for wider policy reform -- specifically when it comes to medical leave from work.
They note that both the U.S. and Australia have laws that protect people from losing their jobs when they take leave to care for a sick family member. But there's little protection against financial hardship.
The U.S. Family Medical Leave Act mandates 12 weeks of unpaid leave, while Australia's law requires a minimum of two weeks paid and two weeks unpaid leave.
SOURCE: bit.ly/gPtMdm Journal of Clinical Oncology, online January 4, 2011.
(c)American Society of Clinical Oncology
Published online before print January 4, 2011, doi: 10.1200/JCO.2009.27.8960 JCO January 4, 2011 JCO.2009.27.8960
Unmeasured Costs of a Child's Death: Perceived Financial Burden, Work Disruptions, and Economic Coping Strategies Used by American and Australian Families Who Lost Children to Cancer
1. Veronica Dussel,
2. Kira Bona,
3. John A. Heath,
4. Joanne M. Hilden,
5. Jane C. Weeks and
6. Joanne Wolfe
+ Author Affiliations
From the Dana-Farber Cancer Institute; Children's Hospital Boston; Brigham and Women's Hospital, Boston, MA; Institute of Clinical Effectiveness and Health Policy Research, Buenos Aires, Argentina; Children's Cancer Centre, Royal Children's Hospital, Victoria, Australia; and Peyton Manning Children's Hospital at St Vincent, Indianapolis, IN.
1. Corresponding author: Joanne Wolfe, MD, MPH, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 44 Binney St (SM-206), Boston, MA 02115; e-mail: firstname.lastname@example.org.
Purpose Financial concerns represent a major stressor for families of children with cancer but remain poorly understood among those with terminally ill children. We describe the financial hardship, work disruptions, income loss, and coping strategies of families who lost children to cancer.
Methods Retrospective cross-sectional survey of 141 American and 89 Australian bereaved parents whose children died between 1990 and 1999 and 1996 to 2004, respectively, at three tertiary-care pediatric hospitals (two American, one Australian). Response rate: 63%.
Results Thirty-four (24%) of 141 families from US centers and 34 (39%) of 88 families from the Australian center reported a great deal of financial hardship resulting from their children's illness. Work disruptions were substantial (84% in the United States, 88% in Australia). Australian families were more likely to report quitting a job (49% in Australia v 35% in the United States; P = .037). Sixty percent of families lost more than 10% of their annual income as a result of work disruptions. Australians were more likely to lose more than 40% of their income (34% in Australia v 19% in the United States; P = .035). Poor families experienced the greatest income loss. After accounting for income loss, 16% of American and 22% of Australian families dropped below the poverty line. Financial hardship was associated with poverty and income loss in all centers. Fundraising was the most common financial coping strategy (52% in the United States v 33% in Australia), followed by reduced spending.
Conclusion In these US and Australian centers, significant household-level financial effects of a child's death as a result of cancer were observed, especially for poor families. Interventions aimed at reducing the effects of income loss may ease financial distress.
* Received December 29, 2009.
* Accepted November 3, 2010.
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