Cancer is a chronic and sometimes terminal illness that impacts the person physically, emotionally and often financially. Time becomes a commodity, and the fragility of life becomes salient, often accompanied by an increase in humility and gratitude. Life often gets turned upside down; familial roles might change and a family may lose financial security. All family members may be affected by a loved one’s cancer, and children are among the most vulnerable and susceptible to familial impacts. This article will briefly explore some of the psychosocial issues that children may experience when a parent or guardian is diagnosed with cancer.
Maryrose Mongelli, MSW, LMSW, Women’s Cancers Program Coordinator, CancerCare
Receiving a cancer diagnosis may elicit difficult emotions such as denial, anger, anxiety and/or depression, and these emotions may manifest in ways that psychologically affect children. Family members experience turmoil when a parent is diagnosed with cancer. A newly diagnosed individual will begin to contemplate how they will tell their family, and if the individual is a parent with dependent children, they sometimes struggle with how to explain cancer to their children. Some may not tell children that they have cancer. In fact, parents may avoid using terms associated with cancer, such as chemotherapy, radiation, surgery and even the word cancer itself around their children as a means to protect their child(ren) from distress, disruption in their life, as well as avoiding questions about cancer and death. Avoidance is a coping mechanism that people use to protect themselves from experiencing difficult emotions when they are not ready to confront and accept the reality of why they are having these emotions.
Be Open and Honest
For a parent/caregiver with cancer, talking with their dependent children is one of the most difficult conversations a parent can have, but being open and honest with their child(ren) will help the child feel secure. Allowing the child(ren) to express their emotions and ask questions allows them to feel secure and grounded during an uncertain time. When a parent chooses not to disclose their cancer diagnosis to their child(ren), it is likely that their child will become confused and feel less secure when there are significant disruptions in their routine. Therefore, one can infer that parents often underestimate the level of their children’s intuition.
Children are Perceptive
Children are perceptive about the changes around them and will begin to question—whether internally or externally—any changes that occur, such as a significant change in the home environment, their own routine or their parent’s emotional and behavioral state. Like any partnership, rapport and trust need to develop. A child-parent bond does not automatically happen. A parent must earn their child’s trust even from birth. Children, especially young children, need to feel secure in their attachment to their parent/caregiver. When a parent is emotionally absent, insecure attachment occurs, e.g. a mother’s rejection of her child at birth. Moreover, when appropriate information is withheld from a child or adolescent their fundamental view of their parent becomes skewed. Young children may make assumptions that the cause of the changes/disruptions occurring is their fault, and this may result in the child becoming anxious or depressed.
Structure and Routine are Key for Children
A child thrives when their parents (guardians) provide structure and routine, and a cancer diagnosis can cause disruption to a child’s routine. When first diagnosed, parents of dependent children are generally physically present, but psychologically less available to their children and their partners, due to their inability to be responsive to the child’s/adolescents needs (Earley & Cushman, 2002), resulting from a cancer diagnosis. This may result in a change in family dynamics, e.g. children might become parentified. Parentification is the role reversal between the child and the parent/caregiver, whereby the child becomes obligated to become the caregiver for their parent/caregiver, e.g. caring for younger siblings. If the child is an adolescent he/she may find employment to supplement the financial impact cancer has on the family.
As a result of parentification, adolescent truancy rates may increase and school attendance rates may decrease (Shah, Armaly, & Swieter, 2017). The parentification of children/adolescents prevents their personality, social, and emotional development. Poor social and emotional development may have significant impact on their future relationships. As a result, psychological issues that can occur in children when a parent is diagnosed with cancer or chronic illness are predominately adjustment disorders, anxiety, and depression. Based on a cohort study conducted by Wallin, et.al (2018), adjustment disorders were more common among children/adolescents aged 13 and older, keeping in mind that the psychiatric history of the parent with cancer did not modify the results.
Changes in Behavior
As parents are mentally and physically distressed, they may not have the ability to identify that their children’s behavior has changed. Changes in behavior in the home can often carry over into school or social environments. Children with a depressed or anxious mood may withdraw from activities, act out, and have diminished academic performance. Research shows that adolescents, especially adolescent girls, exhibit more psychosocial distress than pre-adolescent children. According to Welch, Wasdworth & Compas (1996), parents may be unaware of their child(ren)’s emotional distress, or have difficulty acknowledging it.
Children, not wishing to further burden their parents, may not express their emotions. The internalization of emotions among family members, such as parents not discussing cancer to spare their child or children internalizing their feelings to avoid burdening their parents, leads to a lack of communication.
Communication is Key
In order to avoid misinterpretations or additional stress and anxiety within in the family when there is a cancer diagnosis, communication is key. Talking with children about their cancer diagnosis can be very distressing and is one of the most difficult conversations to have, and the first step is by using the word CANCER. As with any situation when talking with children it is best to talk in terms that their child(ren)/adolescents can understand e.g., “special medicine.” Parents can reassure their children that the cancer is not their fault, as well, giving them an opportunity to ask questions. Involving children in ways they can contribute to the parent’s treatment can be accomplished by assigning age appropriate tasks. Also, it is important to discuss the changes that may occur during treatment. Finally, reassure the child(ren) that they will always be cared for.
Although difficult during a time of great distress, communication allows the family to maintain stability within the unit by reducing misunderstandings, arguments, and fear. Within a family unit, stability or family homeostasis, is considered the family “NORM.” Considering that all families are different, ideally stability would be when all family members feel supported and nurtured. Stability within the home may combat a sense of insecurity. Insecurity may increase anxiety and depression among the family members and negatively impact the psychosocial functioning of children and adolescents. In order to mitigate feelings of insecurity and instability stemming from a cancer diagnosis, ideally a patient’s treatment plan would include psychoeducation about how cancer affects the family. In addition, the patient’s treatment plan could include family counseling and psychological intervention if necessary. Children and parents are equally affected by cancer, and employing all resources available can achieve stability in a potentially unstable situation.
About the Author
Maryrose Mongelli, MSW, LMSW, is Women’s Cancer Program Coordinator with CancerCare. She provides supportive counseling and resources to patients, caregivers, loved ones, and to those who have experienced the loss of a loved one. She is a part of the CancerCare for Kids program and is also is affiliated with the National Association of Social Workers (NASW).
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Its comprehensive services include counseling and support groups over the phone, online and in-person; educational workshops; publications; and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
Earley, L., & Cushman, D. (2002). The Parentified Child. Clinical child psychology and psychiatry, 7(2), 163-178.
Ruoqing, C., Regodón Wallin, A., Norén Selinus, E., Sjölander, A., Fall, K., Valdimarsdóttir, U., Fang, F. (n.d.). Psychiatric disorders among children of parents with cancer : A Swedish register-based matched cohort study. Retrieved from http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-67312
Shah, B. K., Armaly, J., & Swieter, E. (2017). Impact of parental cancer on children. AntiCancer Research, 37(8), 4025-4028.
Welch, S. A., Wadsworth, E. M., & Compas, E. B. (1996, April 1). Adjustment of children and adolescents to parents cancer: Parents’ and children’s perspective. Cancer, 77(7), 1409-1418.
A Message from Our Sponsor
As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.
In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).
We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting www.HealthWellFoundation.org.