Fear of Disease Progression Can Be ‘Debilitating’ For Some Parents of Childhood Cancer Survivors

A significant number of parents of childhood cancer survivors experience fear about the possibility that their child’s disease may progress or recur, according to recent research findings published in the Journal of Cancer Survivorship.

“This study confirms what is likely obvious to parents and members of their medical care team — that a parent of a child with cancer who has completed intensive treatment is likely to experience anxiety related to the cancer returning or progressing,” said Lisa Schwartz, a treating psychologist in the Department of Oncology and the Childhood Cancer Survivorship Program at the Children’s Hospital of Philadelphia, in an interview with CURE®. “This is completely rational given what the parent and family went through.”

Fear of progression, which is defined as “fear that the disease will progress with all its biopsychosocial consequences, or that it will recur,” is prominent in adult cancer survivors, but little is known about its presence in survivors’ parents. of childhood cancer. Schwartz, who did not author the study, said it is also associated with other internalizing behaviors such as depression, anxiety, negative thoughts and worries, and poor coping.

A total of 516 parents were analyzed to find out if there were factors associated with fear of progression, such as sex, depression, coping style, diagnosis, education level, and the number of siblings in the family.

The results showed that mothers (54%) were more likely than fathers (41%) to experience dysfunctional levels of fear of progression. In addition, mothers reported higher levels of anxiety about progression and depression, as well as significantly lower levels of quality of life. Women are generally more likely to internalize their symptoms, Schwartz says, confirming the findings, she says.

“While many fathers play an equal and/or active role as caregivers, mothers typically bear the greatest burden of managing medical care and regularly interacting with the medical team,” Schwartz said. “They are used to worrying about the day-to-day management tasks for the child’s cancer. So it is likely that for many this focus on day-to-day disease management tasks evolves into (fear of progression) when (the) intensive phase of treatment is over.”

Schwartz explained that parents should recognize that it is normal to experience the fear of their child’s disease returning or progressing and that they should discuss this with their child’s medical team, as the team can help parents reassure them. and normalize their feelings.

While the fear of progression naturally disappears in most parents as the child remains cancer-free, for others it can last a lifetime.

“Fear of progression can be indefinitely debilitating for some parents,” she said. “It can prevent them from ‘moving on’ and … facilitating a normal life for themselves and their child after cancer.”

Schwartz mentioned that cancer can remain “prominent” in some families and can manifest itself in ways such as cancer is the identity of the family, as well as hypervigilance to the child’s complaints and bruises, or “helicopter parenting.” It can also keep them from achieving their own goals and affect their own health and sleep.

“They (parents) may eventually need to seek help, ideally cognitive behavioral therapy, to learn strategies such as mind stopping, problem solving, distraction and relaxation to reduce the impact of (fear of progression),” Schwartz concluded.

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