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Parents of children with cancer may suffer post-traumatic stress for several years
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Some parents of children with cancer experience distress for many years, regardless of the treatment outcome, according to results of a longitudinal study.
Among parents of children who survived cancer, about 19% of mothers and 8% of fathers experienced partial post-traumatic stress disorder (PTSD) 5 years after treatment concluded. Among parents whose children died of cancer, 20% of mothers and 35% of fathers reported PTSD 5 years after their child’s death.
“Our study shows the threats to family for years after the initial treatment,” Louise von Essen, PhD, professor of clinical psychology in health care at Uppsala University in Sweden, told HemOnc Today. “For bereaved parents, and particularly mothers, trauma is most severe and impressive. However, parents of the children considered successfully treated were also traumatized.”
Between 2002 and 2004, von Essen and colleagues recruited 259 parents of children diagnosed with cancer treated at four Swedish pediatric oncology centers. Parents completed questionnaires seven assessment periods. The first three questionnaires were administered at week 1, month 2 and month 4 after diagnosis. The remaining questionnaires were administered after completion of treatment or the child’s death.
The researchers observed a consistent decline in post-traumatic stress symptoms within the first months after diagnosis. However, levels of post-traumatic stress stabilized after that. After the 3-month post-treatment time period, researchers observed “minimal decline” in post-traumatic stress symptoms.
Mothers reported a higher initial level of post-traumatic stress symptoms than fathers (P < .001). Parents with a higher initial level of post-traumatic stress symptoms exhibited a significantly greater decline in post-traumatic stress in the post-treatment assessments (P = .008).
Parents of a girl with cancer appeared more likely to have higher initial levels of post-traumatic stress symptoms (P < .05).
Parent age, child age and type of tumor (CNS tumor vs. another diagnosis) did not appear associated with initial levels of post-traumatic stress symptoms.
“We hope to soon publish data on the economic effects of childhood cancer on the cohort in terms of work situation, sick leave and household income, and on the effect at follow-up of an Internet-based psychological intervention for cognitive behavioral therapy for parents of children recently diagnosed with cancer in terms of clinical efficacy and health economy,” von Essen said. “We additionally plan to successfully develop, test and evaluate an Internet-based psychological intervention for parents of children successfully treated for cancer,”
Most pediatric oncology practices have resources in place to offer support for parents.
“Most parents, throughout the duration of cancer treatment for the child, are distressed,” Elyse Levin-Russman, a clinical social worker in pediatric hematology-oncology at Massachusetts General Hospital who was not involved with the study, told HemOnc Today. “Some more than others continue to be at that heightened level of distress for the duration of the treatment process, and there are so many variables involved. It is not only about treating the child, but it is also about dealing with existential issues of a child with a life-threatening illness.”
Elyse Levi-Russman
In the beginning of the process, some parents worry about how they will cope with their child’s illness, Levin-Russman said.
“Overwhelmingly, they do get through it with support that is in their lives, with the pediatric oncology treatment team and a variety of other health care professionals walking with them through the process,” she said. “I continue to approach parents throughout the process to make sure they know they have support available as they cope with their child’s illness.”
Other organizations offer ways to help parents cope with distress. The NCI published a handbook that recommends parents make time for themselves, rely on treatment staff, contact support groups, and share care responsibilities for their child with a partner or close family and friends.
The results of this study can help clinicians be more sensitive to parents’ experiences, Levin-Russman said.
“Most young children do not remember going through the process, but parents remember everything,” Levin-Russman said. “As clinicians, we should all be sensitive to the idea that cancer does not just happen to children, it happens to families. We can approach parents and hopefully guide them through their challenges of the child’s cancer treatment.” – by Jennifer Southall
For more information:
Louise von Essen, PhD, can be reached at louise-von.essen@pubcare.uu.se.
Elyse Levin-Russman can be reached at elevinrussman@partners.org.
Disclosure: The researchers report no relevant financial disclosures. Levin-Russman reports no relevant financial disclosures.
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