The announcement of a cancer diagnosis abruptly and permanently changes the course of daily life – not only for the person who gets it, but also for their family. New research [to be] presented at the 2021 ESMO Congress suggests that adequate communication and support for children of cancer patients still represents an important unmet need for which parents need help.
In 2020, an estimated 4.6 million people between the ages of 20 and 54 were diagnosed with the disease at a time in their lives when they are most likely to raise children. The impact of parental cancer on a child’s development varies depending on the child’s age and the evolution of the disease, but also, crucially, depending on how the child is involved in the parent’s disease.
Giving bad news to their children and dealing with the suffering it can cause them is one of the most daunting tasks parents face at a time when they have to process their own emotions about the illness. But according to Prof. Carlo Alfredo Clerici, a clinical and child psychology expert from the University of Milan, Italy, who is not involved in the study, “current psychological perspectives see a degree of information for children about the illness from their parents, and about the possibility of their death, as useful and protective against traumatic phenomena.”
Ignorance is not bliss when a parent has cancer
The social and cultural resistance that often stands in the way of this kind of dialogue with children is shown by the results of a survey of 103 patients in Tunisia, of whom almost 90% reported communication difficulties about the parent’s illness and more than 40% choose so as not to reveal the whole truth about their illness. According to study author Dr. Sinen Korbi, Salah Azaiez Institute, Tunis, the idea is widespread among patients that they protect their children’s psychosocial balance by protecting them from the reality of the disease: “This was supported by seven of the 18 parents in our study who chose to completely hide the truth from their children,” he reported, adding that these are missed opportunities to give hope to children at a time when, even in Tunisia, where many cancers are diagnosed at an advanced stage, people are recovering from the disease.
Nearly all study participants (96%) observed behavioral changes in their children, ranging from anxiety and depression, through academic difficulties to violence and substance abuse – but only nine parents consulted a child psychiatrist.
Many people think they can handle these problems on their own or with the help of family members, but they should be encouraged to report these problems to us so we can refer them to specialists if necessary: this can be as simple as asking patients how their children are doing every time we see them.”
Dr. Sinen Korbi, Salah Azaiez Institute, Tunis
“This study makes clear that the knowledge about the role of psychological and emotional dimensions in people’s lives needs to be increased. Efforts need to be made to better understand and take them into account, in a way that is compatible with social and cultural perspectives, that children build their own interpretation of life and that they can suffer significantly if they don’t have adults to help them stay in touch with reality,” Clerici said. “Future research should also aim to capture traumatic phenomena that unfold over time and are associated with more distressing long-term consequences than the individual symptoms of distress listed here.”
Trauma becomes especially likely when a child faces the death of a parent from cancer. Communication with children about the disease should be an ongoing process that should ideally begin shortly after the announcement of an incurable cancer diagnosis and include practical preparations for life after the parent has passed away. These important conversations should be conducted in an age-appropriate manner, but parents, who require guidance from professionals, usually navigate the experience on their own, while health and social care professionals are often unaware of the challenges they face during this time.
Distinguishing between the extent to which it is possible to prepare a child for the loss of a parent to reduce traumatic phenomena and the extent to which this loss constitutes a suffering that words cannot prevent or alleviate, Clerici emphasized the importance of recognizing that children’s support needs are not limited to the terminal stage of the disease and early stages of bereavement. “Their entire growth path will be shaped by the challenge of finding in the surviving parent, in new social and emotional relationships, opportunities to make up for their loss,” he said. “Activating care resources that guarantee long-term psychological support and monitoring of the child could help these individuals cope with the challenges of existence without feeling emotional loneliness or abandonment and, while receiving modest reimbursements from health systems, have the potential to realize significant health care savings in the long run.”
European Society of Medical Oncology (ESMO)