Updated: Jan 19
Brené Brown is a famous author whose books many characterize as “self-help”. She does not see it that way, rather she encourages us to develop powerful tools to help each other. That approach is essential today with the COVID-19 pandemic affecting all of us, reminding us how precious life is. While COVID-19 can affect persons of any age, many of us adults are worried about our parents who are uniquely vulnerable. Worrying about losing a parent is not unique to COVID-19. Champions Against Cancer was founded in 2014 with a focus on assisting children who have a parent with cancer, as well as supporting them if sadly the parent passes away. The overlap between the worries of children during a pandemic and for those dealing with cancer in the family prompted our renewed interest in how parental illness affects children.
When dealing with a serious disease like COVID-19 or cancer in a loved one, an initial emotion is sympathy for the person with the disease. As a physician who cared for children with advanced kidney disease, my focus was also primarily on the patient. As my career advanced, I was enlightened to the communal suffering that a child’s illness had on the parents and siblings. I was awaken to recognizing the needs of the family and how counseling could assist the family through a child’s illness. I realized that serious disease affects all members in a patient’s family.
Impact of Parental Illness on Children
My lessons led me to greater awareness of how children are affected by a serious illness in a parent. Among the 75 million children under age 18 years in the United States, an alarming 3.1%, or about 2.3 million, are living with a parent diagnosed with cancer, with 220,000 new occurrences each year. Cancer is often viewed preferentially affecting older adults, but about one-third of cancer victims are young adults. While cancer rates are declining mainly due to enhanced prevention and earlier detection, children remain the most vulnerable and innocent victims of this disease. In fact, children are uniquely and more commonly affected by cancer in a parent than other age groups.
A major limitation in understanding the challenges facing children with a parent facing cancer is the inherent variability in those affected. Indeed, the family’s socio-economic status, family structure, and the parental cancer may affect how the parent and child respond to the cancer diagnosis.
Each child may exhibit distinct emotions. While preschool children more commonly display confusion, sadness, and anxiety; children in elementary school commonly convey guilt and are exquisitely sensitive to the physical and visible changes the parent develops from the disease and therapy. Gender also has a profound effect on how the child adapts to, with boys commonly emoting anger and girls withdrawing. Adolescents more regularly exhibit classical post-traumatic stress symptoms, as their focus is primarily on the parent’s welfare while ignoring their own distress. It is essential to understand why a child experiences difficulties with a parental cancer in order to develop better sensitivity to the child’s emotions. For example, the child’s daily routine, is suddenly and profoundly interrupted. The routine of a parent preparing their child for school, family meals, weekly events, etc. are disrupted. In some cases the roles of the child and parent, especially for adolescents, can be reversed. A child may take on caregiver role for the parent. An unfortunate consequence is the impact to the child’s daily life such as school work and friendships. Sadly a child may sacrifice their childhood experiences to care for a parent.
Ameliorating the Pain Associated with Parental Illness
Addressing a child’s struggles with parental illness requires strategies that help the child adapt and recover. A fundamental need is better recognition that the child is feeling the burden and pain of a parent’s illness, even if not discernable. Children may be confused and embarrassed about their feelings, so they conceal their emotions. Sadly, parents may not be able to console the child while dealing with cancer. Managing emotions can overwhelm the entire family, it may be necessary to seek professional counseling. A study of 194 adults with cancer showed that only 11% reported they could adequately meet their children’s needs. A specialty service called psycho-oncology has emerged to help families manage cancer within their family. Through improved communication with and encouragement of children to express their feelings promotes better emotional well-being. While some parent’s hold back on the seriousness of their illness, children generally appreciate and respond more favorably discussing the parent’s condition. The prognosis should be conveyed to each child according to their ability to understand. The child should be encouraged to ask questions and convey their feelings.
Cohesion and connectivity within the family unit is crucial to helping the child cope with a parent’s illness. Those efforts should be supplemented with encouraging the child to continue to connect with their peers. This helps restore some normalcy to their lives while distracting them from the daily reminders of struggle and sadness. Friends who are experiencing similar difficulties may be particularly helpful. For example, during my medical training, I noticed the tremendous value that peer relationships provided for adolescents receiving dialysis in a unit in Bronx, New York. The support network they provided for each other was essential, especially at times of distress. If a patient required a procedure to address a complication of their illness, their peers expressed immediate concern and uneasiness, while they immediately rejoiced upon hearing good news, such as a peer receiving a kidney transplant. Their ability to relate to each other often exceeded the ability of their healthy friends to understand their struggles.
Improved recognition of the struggles children endure with a parental disease as serious as cancer is essential to help the child and family adapt. An individualized approach is optimal as not all children respond to a protocolized strategy. Involvement of the entire family, close friends, and the medical-psychosocial team is paramount as a team of resources are needed to provide support for all members of the family, especially the children.
As we adapt as a society to the COVID-19 pandemic along with families dealing with the struggles of a parent facing cancer, reflect on what Brené Brown has said: “We’re not meant to do it alone.” As all of us in Howard County join together to fight the COVID-19 pandemic, Champions Against Cancer also aspires to not let you be alone as you and your children overcome the challenges of cancer.
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5) Visser, Cancer Treatment Review, 2004