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Effects of Parental Cancer on Children and Adolescents

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.

Difficult Emotions

Maryrose Mongelli

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).

About CancerCare

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).

References

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.

 

 

Cognitive Behavior Therapy for Teens and Young Adults with Cancer

This week, Real World Health Care focuses on the special behavioral health issues that can impact teens and young adults with cancer. We are delighted to share information on this topic from the Association for Behavioral and Cognitive Therapies, and to feature insights from Tammy A. Schuler, PhD, a Licensed Clinical Psychologist and Director of Outreach and Partnerships for ABCT.

ABCT is a multidisciplinary organization committed to the enhancement of health and well-being by advancing the scientific understanding, assessment, prevention, and treatment of human problems through the global application of behavioral, cognitive and biological evidence-based principles. It seeks to decrease human suffering using science.

Supporting the Cancer Community

Real World Health Care: How does ABCT address the special needs of adolescents and young adults with cancer?

Tammy Schuler

Tammy Schuler, PhD, Director of Outreach and Partnerships, Association for Behavioral and Cognitive Therapies

Tammy Schuler: Adolescents and young adults (AYAs) and their families coping with cancer have a lot to deal with. The AYAs are dealing with a major, life-changing circumstance during a period of their life when they are also dealing with other huge changes and developmental milestones. ABCT provides a variety of information to this patient community on treatment for depression, anxiety, sleep, insomnia and other areas that AYAs may struggle with. We also offer a clinical directory in which people looking for cognitive behavioral treatment can find providers in their area. Some of these providers specialize in working with people and their families who are coping with cancer, and some of them specialize in working with young people coping with a range of concerns.

Reaching Out for Help

RWHC: What advice would you give an AYA or family member who may feel uncomfortable or unsure about reaching out to a cognitive behavior therapist for help?

TS: Normalizing it is important. Many AYAs dealing with cancer experience some sort of cancer-related behavioral health issue. Issues may not happen right away. They may come up at some point during treatment or when they’re recovering from cancer treatment and trying to get back to their lives, and even beyond. In fact, a lot of AYAs report that they experience struggles after cancer treatment is over.

It’s also normal for family members – especially caregivers – to experience a behavioral health concern, at any point after the AYA’s cancer diagnosis.

Behavioral health concerns can range from having more difficulty adjusting to or coping with the cancer than one might expect, to ongoing feelings of sadness, anxiety, worry, panic attacks, persistent insomnia, increased substance use, and other symptoms. If a distressing behavioral health symptom sets in and doesn’t let up, if a behavioral health symptom becomes really disruptive to day-to-day life, or if a person starts worrying that they might hurt or kill themselves, those are signs to reach out to a qualified therapist for help.

It’s perfectly okay to reach out to people who can help, including cognitive behavior therapists, no matter what. Cognitive behavioral therapists are used to working with people dealing with these kinds of concerns; and the sooner someone reaches out, the sooner a plan can be developed to help the person feel better. Be sure to carefully check the credentials of the therapist. They should be licensed to practice in the patient’s state and should be listed as members of professional organizations, such as ABCT or the American Psychological Association.

HealthWell’s Cancer-Related Behavioral Health Fund is a wonderful initiative for insured people who want to reach out to a cognitive behavioral therapist, but who are struggling with finances.

Fast Facts: Adolescents and Young Adults with Cancer

The following information has been excerpted from the full ABCT fact sheet, written by Glynnis McDonnell, Doctoral Candidate in Clinical Psychology at St. John’s University and a Psychology Intern with the University of Tennessee Health Sciences Center & St. Jude Children’s Research Hospital.

A cancer diagnosis can be upsetting for individuals of any age; however, the effects of a cancer diagnosis and treatment may be especially upsetting for people diagnosed as adolescents and young adults (AYAs). This period involves rapid physical and psychosocial development, and a cancer diagnosis can interrupt these developmental processes:

  • Treatment often leads AYAs to take a large amount of time off from school or work, affecting career and education plans.
  • Treatment can make the formation of romantic relationships difficult due to factors such as body image concerns, limitations placed on one’s activities, etc.
  • Treatment can lead to infertility, interfering with the ability to start biological families.
  • A potentially life-threatening illness can be especially startling for AYAs:
    • AYAs likely have a better understanding of the seriousness of their illness than child patients but are often unprepared to process the meaning of a serious disease as effectively as older patients.
    • AYAs are still in the process of developing a stable sense of self. Therefore, diagnosis and treatment of a serious illness during this period could have a different psychological impact than it does for older adults.

There is growing evidence that cognitive behavior therapy (CBT) is an effective treatment for many of the psychological difficulties faced by AYAs. CBT is a form of psychotherapy that draws upon the connections among one’s thoughts, behaviors and emotions. It cannot change the fact that this young person has had to cope with a difficult diagnosis, but it can help ease the related difficult feelings, including worry, sadness and guilt related to the cancer experience. It can also help the AYA process traumatic aspects of the cancer experience.

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 CRBH Fund and how you can support it by visiting www.HealthWellFoundation.org.