Childhood Cancer Takes a Huge Toll on Children and Their Families
Due to medical advances, more and more children survive childhood cancer but recent studies show that, even after successful treatment, there are enduring physical, educational, social and emotional costs.
Statistics on childhood cancer
Although childhood cancer is relatively uncommon (less than 1% of all new cancer cases in Canada), it is the most frequent cause of death “second only to injury-related deaths among Canadian children” and “more than asthma, diabetes, cystic fibrosis and AIDS combined” (Canadian Cancer Society, 2020). The most common types of childhood cancer are leukemia, brain and central nervous system tumors and lymphomas.
Cancer in adolescents and young adults 15-29 years of age “account for less than 0.5% of cancer deaths in Canada” and these deaths are most frequently the result of leukemia, brain and central nervous system tumors and bone cancer (Canadian Cancer Society, 2020).
Diagnosis
There is universal acknowledgement that a diagnosis of cancer is acutely stressful for the child and family. Reactions of parents run the gamut from fear, outrage, guilt and self-recrimination to withdrawal and paralysis. Some gear up for a fight, some shut down. Children are strongly affected by what they see in their parents. How much they are afraid and how they cope is mediated by how their parents respond and react. Young children, in particular, interpret what is happening to them by seeing/sensing what their parents are feeling. Most parents and children adapt to the realities of cancer and their distress diminishes over the course of the first year, unless the child’s health deteriorates, the cancer returns, or the child and family are facing end of life.
Treatment
Many procedures are painful which can cause fear, anxiety, and a sense of helplessness. Today, local and general anaesthesias are used for the most painful procedures such as lumbar punctures and bone marrow aspirations but the “uncertainty of outcomes in general and fears of death specifically” cause considerable psychological distress. At the other end of the stress spectrum is boredom, which results from long days without structure, fresh air, exercise or companions.
Very young children from 18-48 months don’t understand why “invasive and painful procedures are done to their bodies” and are “at risk for developing post-traumatic stress disorder” (Barerra et al. #2).
End of life
Despite advancements in cancer diagnosis and treatment, 20% of children die from their disease and many experience poorly controlled symptoms including pain, nausea, and anxiety to the very end of life. Parents report distress because their children suffer and also because they suffer. A review of 43 articles discussing end of life (EOL) issues in pediatric oncology revealed that there is no consistent definition of ‘end of life,’ insufficient attention to understanding and prioritizing parents and children’s concerns at the end of life, lack of communication early in the disease process to identify the wishes and needs of children and their families, and whether and how much to include children in decision making. The review concluded that end of life concerns for children and their families involve physiological, emotional and psychosocial issues, all of which need to be carefully addressed (Montgomery et al.).
Survivors of childhood cancer
“An estimated two-thirds of childhood cancer survivors will have at least one chronic or long-term side effect from their cancer treatment (Canadian Cancer Society, 2020). In addition, “social isolation, under achievement, under-employment and mental illness… are well known long-term adverse effects in adult survivors of cancer” and approximately “10-30% of survivors or family members will have long-term severe psychological distress” (Barerra et al. #2).
Educational and social concerns
Children who survive cancer have increased social, learning, and self-esteem problems. In one study, a significant percentage of survivors were found to have repeated a grade, attended special education programs, and had no close friends. The earlier the onset of cancer, the poorer the social outcomes for children suggesting that the experience of cancer and its aftermath interferes with normal social development, as well as educational success. Protective factors for children were high self-esteem and higher educational levels of parents (Barrera et al. #1). No reason was provided for the finding regarding parents’ educational level but it seems reasonable to surmise that better educated parents have more resources with which to help their children address their learning and social deficits and in the process of addressing them, those children develop high levels of self-esteem. It is also possible that children with high self-esteem are better able to tolerate and adapt to the stresses and disruptions of cancer.
School reentry requires support
A review of the literature on school reentry for children and adolescents with cancer (Thompson et al.) indicated that schools are ill equipped to meet children’s special needs and either under accommodate or over accommodate, parents are reluctant to send their children back to school because they “worry about their physical appearance or fear they wouldn’t be able to keep up,” educators “have little or no training or experience working with children with cancer,” and there is inadequate, if any, communication between school and hospital personnel. Children with brain tumors are particularly vulnerable to both academic and social difficulties and they tend to “suffer social isolation, victimization, and low social acceptance.”
Thompson et al. concluded that children and adolescents should return to school as soon as medically advisable and that support be provided by a “well trained, experienced pediatric oncology team member who will coordinate communication between the child/family, school, and health care team.” Individual support plans might include an academic plan, guidance for teachers and parents with respect to resources and processes, and/or a school visit to educate classmates and school personnel.
Stress on parents
It is common for parents of children with cancer to experience symptoms of anxiety and depression at the time of diagnosis but until recently, researchers thought these symptoms declined during the first year of treatment. A study in 2018 found that a significant percentage of caregivers continue to have depressive symptoms in the clinically relevant range after one year. Since “parental psychological adjustment is a lead indicator of child and family well-being,” the authors recommend intervention services for parents to “prevent the negative downstream effects on partners and siblings, as well as their children with cancer” (Katz et al.). Barrera and her colleagues put it this way, “severe distress in parents may interfere with the child’s treatment, their ability to support the affected child and healthy siblings, and ultimately threaten family function and stability” (Barrera et al. #2). Certainly, a depressed parent would lack the energy, initiative and confidence necessary to help their child manage the educational, social, and self-esteem issues which appear to be prevalent, if not ubiquitous.
Siblings
The siblings of children diagnosed with cancer also experience considerable distress. The disruption of routines, reduced contact with parents, focus of attention on the sick child, increased responsibilities or expectations for independence and cooperation all create upset, fear, and/or resentment. In cases where siblings are asked to serve as donors for stem cell transplants, there is considerable pain, fear, and interruption to their lives. Distress is usually most severe at the time of diagnosis and lessens over the course of the first year. However, if the sick child worsens or dies, or is expected to die, siblings may become acutely distressed. This may take the form of depression, withdrawal, or psychosomatic symptoms or be communicated in the form of anger, defiance, and acting out.
Gerhardt and her colleagues recommend that siblings be given supportive services and that parents be advised about ways to anticipate and meet siblings’ needs. Currently, only 25% of pediatric oncology organizations offer psychosocial services to siblings. In addition, siblings should be given information about the child’s illness and treatment, updated regularly, and given “opportunities to talk about the impact of the illness on their lives and adjustment” (Gerhardt et al.). Mental health professionals should facilitate parents’ communications with siblings.
Fertility issues
There are potential reproductive consequences of cancer and cancer treatments. Medical knowledge is uncertain and incomplete but “ongoing physical effects can include delayed pubertal growth, osteoporosis, premature menopause, and obstetric complications” (Crashaw et al.). Few adolescents and young adults or their parents are aware of cancer-related fertility risks and only a small percentage are offered the option for fertility preservation (egg and sperm freezing) services. Researchers who interviewed young male and female survivors of adolescent cancer found that almost all wanted to be told of the possible risks at the time of diagnosis and wanted the option of egg or sperm freezing. In addition, all wanted to be spoken to directly rather than through their parents, even those who wanted to include their parents in decision making (Crawshaw et al.).
Reducing the long term adverse effects of childhood cancer
Barerra and her colleagues (#2) propose a multifaceted approach to mitigate the psychological distress and long term adverse effects of childhood cancer. The following strategies are part of the model which aims to maximize quality of life, reduce distress, and enhance coping.
A “child-family centered model of care which is a partnership approach to health care decision-making between the child, the family, and the health care team, where each member of this partnership is considered an ‘expert’ in his or her own perspective.”
“Early psychosocial screening and assessment to identify individual and family strengths, resources and challenges, and identify the amount of psychological support which might be necessary to prevent severe anxiety or post-traumatic stress disorder” in the child or family members.
Assessment of siblings and caregivers “for pre-existing mental health disorders which would place them and the family at increased risk for additional psychological distress.”
Use of assessment tools such as “the Distress Thermometer (DT) to measure distress with a scale from 0 (no distress) to 10 (severe distress).”
An “individually tailored set of interventions” including “ongoing psychosocial support to bolster coping strategies and resources for the child and family.”
“Developmentally appropriate psycho-education regarding the nature of the medical diagnosis and what to expect at various phases.”
“Empathic listening of a non-judgmental nature to validate and empower those experiencing psychological distress.”
Techniques such as desensitization, breathing exercises, distraction, or therapeutic clowns to ease suffering during treatment procedures.
A developmental focus which addresses the specific needs of children and adolescents according to their cognitive, social, and emotional requirements and capacities.
Special support for the primary caregiver, typically the mother, during hospitalizations to “ensure that she takes time to attend to her personal needs.”
A return to daily routines as soon as possible “to avoid developing the role of the sick, fragile, or cancer child.”
A return to school with support, as soon as possible.
Encourage parents to attend to the siblings and include the siblings at the hospital and at home.
Adolescents are extremely self-conscious and those with cancer are at risk for anxiety and depression, reduced quality of life, and isolation. They need communication which is “open, direct, and private” and addresses their fears of dying, loss of control, and concerns about sexuality and reproduction.
Success of interventions
Barerra and her colleagues concluded that the success of any intervention “depends on the quality of communication between the family and health care providers, based on trusting and respectful relationships.
Envisioning better long term outcomes for cancer survivors and their families
There is now a significant shift toward holistic and comprehensive approaches to maximize the well-being of children and families dealing with cancer, from the point of diagnosis, through treatment, and beyond. Children and their families have multiple, complex, and unique challenges depending on the child’s type of cancer, age of onset, and the child and family’s strengths and vulnerabilities. Clinicians are now focused on developing treatment models that recognize and address the full range of problems created when a child gets cancer.
References
Maru Barrera, Amanda Shaw, Kathy Speechly, Elizabeth Maunsell and Lisa Pogany, Educational and Social Late Effects of Childhood Cancer and Related Clinical, Personal, and Familial Characteristics, 2005, American Cancer Society. Published online. #1
Maru Barrera, Adam Rapaport, and Kim Daniel, Easing Psychological Distress throughout the Pediatric Cancer Journey in J. Wolfe, B. Jones, U Kreicbergs, M. Jancovic, Eds. (2017) Palliative Care in Pediatric Oncology, Springer, New York. In Press. #2
M.A. Crawshaw, A.W. Glaser, J.P. Hale & P. Sloper, Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years, European Journal of Cancer Care, 2009, Volume 18, 381-390.
Lynn Fainsilber Katz, Kaitlyn Fladeboe, Kevin King, Kyrill Gurtovenko, Joy Kawamura, Debra Friedman, Bruce Compas, Meredith Gruhn, David Breiger, Liliana Lengua, Iris Lavi and Nicole Stettler, Trajectories of Child and Caregiver Psychological Adjustment in Families of Children with Cancer, 2018, American Psychological Association, Health Psychology, Volume 37, No. 8. 725-735.
Kathleen Montgomery, Kathleen Sawin and Verna Hendricks-Ferguson, Experiences of Pediatric Oncology Patients and Their Parents at End of Life: A Systematic Review, Journal of Pediatric Oncology Nursing, 2016, Volume 33(2)85-104.
Amanda Thompson, Heather Christianson, Megan Elam, Jennifer Hoag, Mary Kay Irwin, Maryland Pao, Megan Voll, Robert Noll and Katherine Patterson Kelly, Academic Continuity and School Reentry as a Standard of Care in Pediatric Oncology, Pediatric Blood Cancer, 2015, 62:S805-817.
Resources
Canadian Cancer Society www.cancer.ca ; https://www.cancer.ca/en/support-and-services/support-services/find-services-in-your-area/?region=on
Leukemia and Lymphoma Society of Canada www.llscanada.org
Pediatric Oncology Group of Ontario www.pogo.ca
About The Author
Janet Morrison, M.A., C. Psych Assoc. is a psychological associate in private practice and a senior lecturer at the Factor-Inwentash Faculty of Social Work, University of Toronto. Over the past 30 years she has assessed, treated and supervised treatment of children in long-term care, as well as, consulted for Children's Aid Society and group homes across Ontario.