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

While it is normal for parents of childhood cancer survivors to experience anxiety and depression related to the fear of disease progression, parents are encouraged to seek help to ensure that the fear or progression doesn’t lead to debilitating consequences, according to an expert at Children’s Hospital of Philadelphia.

A considerable amount of parents of childhood cancer survivors experience fear surrounding the possibility that their child’s disease may progress or return, according to recent study results published in the Journal of Cancer Survivorship.

“This study confirms what likely seems 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 fear related to the cancer recurring or progressing,” said Lisa Schwartz, an attending psychologist in the Division of Oncology and the Childhood Cancer Survivorship Program at Children’s Hospital of Philadelphia, in an interview with CURE®. “This is completely rational given what the parent and family have experienced.”

Fear of progression, which is defined as “fear that the illness 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 parents of childhood cancer survivors. Schwartz, who was not an author on the study, mentioned that 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 discover if there were factors associated with fear of progression such as sex, depression, coping style, diagnosis, level of education and number of siblings in the family.

The results demonstrated that mothers (54%) were more likely than fathers (41%) to experience dysfunctional levels of fear of progression. Moreover, mothers reported higher levels of fear of progression and depressions, as well as significantly lower levels of quality of life. Women, according to Schwartz, are generally more likely to internalize their symptoms, which she said confirms the findings.

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

Schwartz explained that parents should recognize that experiencing a fear of their child’s disease recurring or progressing is normal and that they should discuss it with their child’s medical team, because the team could help reassure the parents and help normalize their feelings.

Although fear of progression in most parents goes away naturally over time as the child remains cancer free, it can be lifelong for others.

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

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

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

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