Ms. Kornreich is research associate at New York University (NYU) Department of Social Work in New York City. Ms. Mannheim is manager of Supportive Services at NYU Cancer Institute. Dr. Axelrod is associate professor in the Department of Surgery at NYU School of Medicine and director of Clinical Breast Programs and Breast Surgery at the NYU Cancer Institute.

Disclosures: Ms. Kornreich and Ms. Mannheim report no affiliation with or financial interest in any organization that may pose a conflict of interest. Dr. Axelrod is on the board of trustees for Self-help for Women with Breast and Ovarian Cancer; and is on the medical advisory boards of People Living with Cancer at the American Society of Cancer Oncology and the Young Survival Coalition.

Please direct all correspondence to: Deborah Axelrod, MD, FACS, New York University Cancer Institute, 160 E 34th St, New York, NY 10016; Tel: 212-731-5366; Fax: 212-731-6051; E-mail: deborah.axelrod@nyumc.org.


 

Focus Points

• Children’s understanding of illness and possible reactions vary with age and the individual.
• Parents can ease their children’s distress through a host of mechanisms.
• Coordination of service delivery by the multi-disciplinary team can work to reduce stressors in children whose parents have cancer.
 

Abstract

A parental diagnosis of cancer can have a powerful psychological effect on a child. Although responses vary significantly with age and the individual, children often react with uncertainty, fear, guilt and anxiety. It is up to the parents and the healthcare team to maintain awareness of this growing issue and respond accordingly. Parents can minimize their child’s distress by maintaining open communication throughout the diagnosis, treatment, and recovery processes. Furthermore, an informative, timely, and supportive response from a multidisciplinary healthcare team can successfully reduce stressors and guide the child through the experience. As cancer becomes a more chronic issue, it is becoming imperative that medical physicians address its psychological impacts on the patient and family in order to both improve the quality of life during illness and reduce the long-term negative consequences for years after.

Introduction

According to the National Cancer Institute, one in two men and women will get cancer in their lifetime, and 22.2% of cancer diagnoses will occur between 20–54 years of age.1 While the number of cancer cases is no longer rising, the American Cancer Society estimates that there will be 1,437,180 new cancer cases in the United States in 2008 alone.2 Although cancer predominately appears in an older population (the median age at diagnosis from 2000–2004 for cancer of all types was 67 years old), both men and women have an approximately 1 in 10 chance of developing cancer before age 60.1,2 Cancer has a unique impact on this younger population, in part because the disease not only affects the patient, but also impacts on the patient’s immediate family (including spouses, domestic partners, and oftentimes young children).3 According to the Centers for Disease Control, women increasingly postpone having children until their thirties or forties, and, therefore, have an increased risk of developing cancer while there is still a young child or adolescent living at home.4 A parental cancer diagnosis impinges on a child’s life by changing family routines, altering parent-child interactions, giving the child additional responsibilities, eliciting a fear of potential parental death and increased vulnerability, and adding to already difficult developmental issues.5-7 Children respond differently to the stressors associated with parental illness, and it is important for physicians and parents to understand possible responses in order to anticipate their child’s needs.

Recognition has been slow to address the needs of the family when a parent becomes ill. Despite advances in cancer treatment, even the most sophisticated cancer treatments often bring debilitating physical and emotional side effects. Ensuring quality of life takes many forms. In order to cover the entire landscape—not only addressing the physical but also the emotional, and spiritual aspects of illness—the medical team must include psychiatrists, psychologists, psycho-oncologists, and social workers. The emergence of psycho-oncology is only now being recognized as a crucial part of patient care. As Holland8 stated in an interview in which she describes the slowness to build psycho-social support: “You’ve got to look at the way society has viewed the disease over the years and how it has impacted on people’s responses to the disease.”

It has been difficult in society for adults (let alone children and family) to discuss cancer. During the crisis of parental cancer, childhood behavioral and psychological changes often go unnoticed.6 Perhaps due to this factor, the psychological consequences of parental cancer on a child have rarely been analyzed or acknowledged, and many of the studies that have been performed on the subject show conflicting results. These disparities stem from the fact that researchers used various means of collecting data, methodology, and informant perspectives.9 Because of the inconsistent results, it is difficult to know the exact effect that cancer in a parent will have on a child; however, parental cancer does appear to sometimes elicit numerous negative reactions in a child such as mood and self-esteem changes, academic changes, social and interpersonal alterations, and somatic symptoms.10 Parents can minimize their child’s distress during the diagnosis, treatment, and recovery processes through a host of mechanisms.

Most of the studies that have been performed looked at the effects of maternal breast cancer on children, particularly focusing on the effects of said cancer on adolescent girls.7 It is unclear whether the results of these studies can be applied to children of a broader age group or males. The effects of parental cancer on children do appear to vary based on the age and sex of the child, the sex of the affected parent, the family setting, and the complications associated with the illness.11 Depending on these variables (and existing developmental problems), children and adolescents cope with cancer differently, sometimes in ways that can be psychologically detrimental.

Although cancer remains a major killer of young men and women, overall cancer death rates have gone down considerably in the last 15 years, causing the disease to become a chronic rather than acute illness.1 Thus, childhood psychological distress pertaining to parental care and treatment is becoming more of an issue. In an effort to deal with this growing situation, numerous intervention programs have been developed and standard models have been proposed.9 Many community organizations have developed child support programs with play and “talk” therapy, acknowledging the impact of cancer on children and adolescents. However, these programs are not enough. Physicians must increase their own awareness of the problem by taking not only a full medical history, but a social history as well in order to learn about their patient and their patient’s children. It is up to the parents, teachers, medical team, and social workers to address the issues at hand and provide the proper education and support for children and adolescents throughout the difficult and emotional process of parental diagnosis, surgery, treatment, and recovery.

This article reviews the literature describing possible effects of parental cancer on latency-aged children as well as adolescents and offers examples of pediatric responses from the authors’ personal clinical experiences. Children are divided into two age groups along these lines because a literature search revealed that most studies on pediatric responses to parental cancer separated children into these approximate categories.3,6,11-14 The authors describe what parents can do to minimize the deleterious effects of cancer on their child and conclude that the medical team must act concurrently with social workers and psycho-oncologists in an effort to recognize and reduce the psychological impact of the disease.

Latency-Aged Children (Ages 4–11)

Diagnosis

Despite what many parents believe, a parental cancer diagnosis will affect a young child whether or not the child is informed outright of their parent’s condition. Children can detect the anxiety that will infiltrate their parents’ actions and conversations, and oftentimes cancer will disrupt family routines, affecting a child’s life.12,13,15 Studies show that anxiety levels in children uninformed of their parent’s condition are much greater than anxiety levels in informed children.10,16 Experientially, children worry more when secrets are kept from them than when they know the truth, and it is always worse to overhear bad news than to hear it. When one patient’s 12-year-old son heard about his father’s cancer from a friend, the child confronted his parents, visibly upset that they had not told him first. The family had intended on telling their son after they had elicited the help of family and friends and had “everything in place;” however, it proved too long a wait. A 10-year-old girl discovered that her father’s lung cancer was at end stage when she entered a room full of nervous family members and the conversation stopped. Because the parents were unaware of their daughter’s knowledge, they could not support her when she needed their help. In order to prevent exacerbating an already distressful situation, parents must tell their children of their condition soon after diagnosis.

Latency age children (defined as preschoolers and school-age children) operate in a concrete mind-frame; they can talk about what is happening to them and can express their feelings and thoughts simply, but they are only partially able to use symbolic and abstract language.14 A young child will not be able to grasp many details associated with the disease; therefore, the American Cancer Society recommends that a parent only tell children basic information such as the name of the cancer, the part of the body affected by the cancer, the treatment regiment, and how the child’s life will be affected.15 After informing the child of these basic facts, it is important to anticipate thoughts and concerns the child might have. Children of this age group will care about issues such as parental death and who will care for them; however, they will oftentimes be unable to express these fears.13 On hearing of his mother’s diagnosis, a 6-year-old boy replied “Will I have to move? Will I have to change my room?” Young children will apply abstract concepts to concrete ideas, such as their room and friends, and express their fears through these more concrete thoughts.

Children may also display irrational anxiety concerning their role in their parent’s illness or the nature of the disease itself, believing that they caused the disease or that cancer is contagious.13,15 It is important for parents and health professionals to address these concerns as such fears can lead to severe anxiety which can debilitate a child behaviorally and emotionally.13,16 Healthcare providers should make sure that the child knows that everything possible is being done to help his or her parent, but providers should let the parents judge how much information their child can take in and understand, as parents know their child best. The amount of information given will vary based on each child’s abilities; it is up to parents, healthcare professionals, and social workers to acknowledge this individualism and respect the child’s instincts and worst fears. If a family is religious, the presence of a spiritual leader during this discussion might be useful in order to calm both the parents and children. Parents can attempt to alleviate their child’s fears by reassuring the child that concrete details will not change (such as the child’s room or friends) or by taking the child to the doctor’s office for a casual visit (demonstrating that the doctor’s office is not a scary place). Parents might also want to enlist the help of a friend who has gone through a cancer diagnosis to talk with their child, as the friend can serve as an image of survival. In general, parents should remember that they need to communicate to their children the basics, even if children do not respond with questions; details are unnecessary. Children do not have to know that their mother’s tumor is estrogen receptor positive or that their father is trying a new vascular endothelial growth factor inhibitor.

Coping

Preschoolers and school-aged children are affected by the diagnosis differently than adolescents or adults. Following diagnosis, children are oftentimes unable to verbally express their concerns or fears, and instead they might react by changing their behavior. Children who never cry might cry more often, or children might become more clingy, distractible, or aggressive.13,16 Furthermore, children may demonstrate psychosomatic symptoms or be unable to concentrate in school.16,17

According to a study performed by Compas and colleagues, preadolescents as well as adolescents perceived little control over their parents’ illness. However, the preadolescents used fewer coping strategies than adolescents or young adults.4 Another study demonstrated that children 7–12 years of age cope with the illness by going “in and out” of the situation literally and emotionally. Children in the study were more anxious than their peers, although this anxiety often appeared to be caused by stressors unrelated to their parent’s illness. These children dealt with their anxiety by separating their lives into two spheres, or zones, namely, the zone dominated by cancer, and the “free zone” where they could forget about the disease and escape from the illness. Through this method, children could recreate a balance in their lives and eventually re-establish a routine that would only be disrupted when the disease developed or changed dramatically.16 In general, parents must try to keep routines as much as possible, and “mind the minutia” in order to achieve this goal, ie, ask about the commonplace, specific things in a child’s life, such as the soccer score, or how the child played in a particular game.

School-aged children’s ability to cope depends in part on their family setting. One study that analyzed how sociodemographic and family characteristics affected child functioning in families with parental cancer demonstrated that children have more trouble coping with the illness in single-parent households, when the parents are from smaller families, and when the ill parent is younger. Furthermore, the number of children and the position of the child within the family appeared to be important, as children with siblings had less trouble coping than an only child, and eldest children had more trouble coping than their younger siblings. While no study has looked at the effects of socioeconomic status on children with parental cancer, studies on the general population demonstrate that a lower socioeconomic status is linked to an increased risk of problems in children.11 Because there is limited research looking at how social, economic, and demographic factors will effect these children, it is difficult to know the validity of the results from this study. What does appear to be important is the family’s support during this experience through a strong network of friends, fellow religious congregants, and so forth. Ultimately, the impact that cancer will have on a family will relate to how the family functioned before the illness. If communication and support were present before the cancer came, then it is more likely that it will continue after.

Treatment and Recovery

Diagnosis is not the only time to be concerned about children’s psychological responses to parental cancer. In fact, latency-aged children displayed the most stress-related symptoms when confronted with physical signs of parental illness (oftentimes seen during treatment) such as vomiting and hair loss, as well as during complications and emergency hospitalizations that disrupt a normal routine.9,14 Even before long-term treatment is initiated, a parent might need in-patient hospitalization and surgery. The recovery following surgery can pose a particular threat to young children as many hospitals do not allow children under 14–18 years of age (ie, the minimum age varies with hospital guidelines) on patient floors. These rules are even more stringent when the treatment involves a compromised immune system, such as a bone marrow transplant. Even if these rules are not in effect, there should always be consultation between the medical staff and the family about the possibility of visitation.

The physical separation enforced by hospitalization can be stressful for a child. In order to minimize this separation, ill parents should attempt to maintain communication with their children. Aside from the conventional phone calls, creative communication can include cards, faxes, and even refrigerator magnet postings, and children should be reminded that their parent is thinking about them. In school, teachers, guidance counselors, social workers, and school nurses should all encourage children to engage in creative activities in order to express his or her emotions, and at home parents should attempt throughout treatment to maintain a child’s normal routine and constantly remind the child that the parent has not forgotten about him or her and will be coming back home.13 Physicians should advise parents to give their child an item to hold that the child associates with the parent, such as a set of keys, an eyeglass case, or a coffee mug. This action allows a child to feel as though he or she is protecting their parent’s domain, awaiting their inevitable return. Post-surgery, as cancer becomes more chronic, it might be useful for children to meet with a social worker or establish a strong network of friends and relatives who can be there for them consistently over time. This continuity of building a familial or extended support network can ease both parental and child stressors.

The American Cancer Society offers a list of books geared toward children in this age group which can offer additional information on parental cancer.15 There are also many intervention programs for children in this situation, such as Quest, “For Kids Only,” The Komen Kids, and “Kids Can Cope.”10 These programs aim to improve the mood, quality of life, coping skills, and stress management of these children. Most of the programs that are currently underway involve three components: education, normalization (creating a safe environment), and building on their strengths to help them cope.10 Other community-based organizations throughout the country have children’s programs, such as Noogieland at Gilda’s Club and CancerCare for Kids. Some of these have telephone groups, play therapy, and social events to ease the isolation children are often facing. By utilizing these programs as well as parental communication, school resources, and books, it is possible to minimize a child’s anxiety throughout the diagnosis and treatment process.

Adolescence (Ages 12–18)

Diagnosis

Adolescents (ie, teenagers) are at a very different mental and emotional state than latency-aged children as they maintain greater cognitive abilities and the potential for abstract and symbolic thought.16,18 They are also more aware of their parent’s pain during treatment and the potential loss of a parent that can accompany cancer.17 Studies demonstrate that adolescents respond best when given detailed information at a level they can comprehend soon after parental diagnosis.19 By being better informed, adolescents reported that they found it easier to talk to friends and family about the illness, thereby creating an outlet to discuss their feelings or get their mind off the problems at hand.7 Information should include facts about the cancer, potential treatment side effects, and the seriousness of the disease. Many adolescents expressed a desire not only to be informed second hand about their parent’s illness, but also to be present at appointments and updated on advancements or alterations in their parent’s condition.19 Studies also demonstrate that the emotions expressed by parents when they inform their children of the diagnosis is important; when parents were upset during the initial discussion, children became more upset as well.7 Thus, it is imperative that parents try to remain as composed as possible when informing their adolescents (or younger children) about their diagnosis. Children should be informed in a familiar setting and when they will not be distracted by their phone or friends. The atmosphere is important and helping the child get comfortable may affect the child’s reaction. It can also sometimes be helpful for parents to validate the child’s feelings by expressing their own fears while reassuring the child that they are doing everything they can to eradicate the disease.

A diagnosis of cancer is difficult for an adolescent child in part because it brings on numerous conflicting feelings. Adolescents by nature want to separate from their families and establish an independent identity. However, adolescents in this position realize the potential of parental death and want to spend more time with their ill parent.7 Perhaps because of this pull, some adolescents and parents in families with parental cancer reported that their families were more cohesive, more expressive, and less argumentative with one another than the norm.20 In addition, this and other studies demonstrate that sometimes adolescents in these families had lower levels of anxiety and fewer behavioral problems than their normative samples.20,21

Unfortunately, this analysis is inconsistent with most other results. One recent study looking at posttraumatic stress in adolescents with parental cancer discovered that 1–5 years after diagnosis, 21% of sons and 35% of daughters had clinically significant stress response symptoms.22 These results indicate that a cancer diagnosis can have a significant impact on a child, as increased stress was associated with behavioral and psychological problems. In fact, the study demonstrated that stress was higher amongst children of parents with cancer than amongst children treated for cancer themselves.22 One cancer survivor described her 15-year-old daughter’s experience post-diagnosis:

On the surface, she seemed perfectly functional. In reality, she was struggling. There were little signs. She moved all her things into our bathroom and began using it all the time, she became consumed with cooking and put together elaborate meals several times a week, she would leave her friends early on Friday nights to come home and watch a silly movie with me. She developed an eating disorder that almost got out of control.

For this patient’s daughter, normal adolescent emotions were exacerbated, and for lack of a better outlet she expressed her suffering through self-destructive behavior.

Coping

The coping ability of adolescents in response to parental cancer is highly variable. Like latency-aged children, adolescents feel incapable of controlling their parents’ illness. These older children respond to this feeling of helplessness by using emotion-focused coping, which is ineffective as it implies avoidance of and disengagement from the issues at hand. This coping strategy is linked to lower adaptation and higher anxiety and depression in adolescents who utilize it as compared to controls.5

Certain variables can moderate adolescent anxiety and aid adolescents in coping. One important variable is the maintenance of communication between parents and adolescents throughout the illness.10 While cancer only marginally affects the ability of parents and children to communicate with one another, recurrent disease and lengthy treatments can negatively impact on communication.23 It is therefore imperative that parents work to maintain open communication throughout their illness, even if they can only do so through text messaging or email. It is also important for parents to realize that their child might still be empathizing even if he or she is not verbally expressing this sympathy or distress. One patient’s 15-year-old son said nothing to his ill mother through her surgery, radiation, and chemotherapy despite the fact that his mother was open with him and told him everything. For years, she assumed that her illness had no effect on him. She only discovered its impact when he graduated high school and received an award for a poem he had written about her and dedicated to her that described how much he loved, respected, and admired her. Parents must remember that just because adolescents have trouble expressing their pain does not mean that they are not experiencing any.

Another important variable that affects adolescents’ coping abilities is complications associated with the illness. Studies demonstrate that adolescents have more trouble coping when their parents experience more complications during treatment, possibly because adolescents have a greater ability to empathize with others and therefore are troubled by pain and physical discomfort in their parents.11 While this is an uncontrollable aspect of the disease, parents should be aware of the implications that treatment complications, failures, or cancer recurrences can have on their adolescent.

Treatment and Recovery

As previously mentioned, the treatment of parental cancer will alter family routines, impacting children and those who love them. These modifications affect adolescents differently than latency-aged children as adolescents experience a change in their role in the family. These older children oftentimes have additional responsibilities including both household chores and caretaking tasks when their parents are ill, and these responsibilities can lead to emotional and behavioral problems.8,19,24 These problems partly develop because they have less time to engage in social or leisure activities to unwind and partly because these responsibilities change normal family patterns and routines.19,25 As Cancer Care For the Whole Patient,26 a new book by the Institute of Medicine of the National Academies, describes:

…cancer and its treatment and sequelae can limit the ability of patients and families to perform their usual personal roles and their roles in the family and the larger society. Unaddressed, these limitations can lead to emotional and mental health problems for both patient and family, and the inability to accomplish developmental tasks, such as attaining educational goals and establishing and maintaining social relationships, and to perform meaningful work inside and/or outside of the family.26

This situation can be minimized by building a network of family and friends who can help take on some of the responsibilities associated with parental illness.

Because treatment can last for years (and new treatment options have made cancer increasingly chronic), it is important for healthcare professionals and parents to attempt to normalize these adolescents’ lives in order to minimize anxiety levels. Studies report that adolescents in this situation demonstrate a desire to be a “normal teenager” and spend time with friends, get away from home over summers, and separate from the day-to-day management of parental illness.19 Parents and healthcare advisors should encourage adolescents to continue their normal activities and peer relations. It is important to make sure that children in high school do not feel compelled to stay at home after they graduate and go to a commuter college or no college at all. Parents should let adolescents know that it is okay to separate and move on. If adolescents are having trouble coping, many of the support groups available to younger children are also available to them, and these groups can help minimize behavioral problems and anxiety levels.10,19 Unfortunately, there are too few support groups available for adolescents and teenagers. Therefore, it is imperative that adolescents seek help when necessary from social workers and psychiatrists. Furthermore, professionally facilitated family meetings can be helpful in minimizing the disruption and negative consequences of parental cancer.

It may be pertinent at this juncture when treatment ends to include the child in physician visits. Meeting with the physician or other available members of the healthcare team in an informal manner for a soda or snack may help make adolescents more comfortable with the situation and less concerned for their parent. By establishing trust in the healthcare team, adolescents might also have fewer long-term concerns and be more willing to aid in their parent’s recovery process.

Terminal Illness/Death of a Parent

Despite being prepared for death, it will still be very difficult for a child to cope with parental demise. During these times, intra-familial and other social support can aid the child’s adjustment. Visitation to hospice should be determined by the family and social workers. Mechanisms to preserve the memory of a parent may take the form of videos, book projects, or photo albums. These keepsakes can serve as something tangible to hold onto.
Joelle was 34 years of age when she learned her cancer had metastasized, and despite many attempts to halt the progression of disease her response to treatments were disappointing. Her daughter Halle was 4 years of age at the time and enjoyed reading with her mother. Joelle started “Light One Little Candle” as a book project to encourage young mothers (or fathers) with cancer to read to their young children as a way to connect and to create memories. In the books, both on the nameplate and in the text, the mother can write notes to the child as she reads, thereby not only instilling a love of reading but also creating very specific memories for the child to hold on to. The Light One Little Candle program has given out over 10,000 books thus far from Boston, Massachussetts; Hartford, Connecticut; New York City; and San Diego, California. It is certainly a beautiful legacy and a gift that keeps on giving and has undoubtedly helped children through the grieving process. Joelle herself had many books for Halle with handwritten notes in them, some that she read to her and some that she put away for years to come. In addition, Joelle created memories for Halle through videos and gifts for future birthdays and special occasions.

The death of a parent from cancer brings up numerous separate issues for the child. Studies indicate that children, no matter the age, do indeed mourn, and therefore will severely mourn the death of a parent. However, the nature of children’s mourning differs significantly from that of an adult.27 Death from cancer is generally drawn out and painful, making it a difficult death for children to witness.27 Because a cancer death is generally anticipated, there is time for children to prepare themselves for the loss and for a parent and child to address the issue together. Studies show that people are more able to deal with their grief when the death is anticipated as opposed to acute.27

In general, children tend to have three questions immediately on the death of a loved one, namely, did it happen because of something they did, will it happen to them, and who will take care of them if it does happen? These questions should be addressed (whether they are articulated or not) as soon as possible.27 Children can obtain information through books geared toward their age group such as I Know I Made it Happen for younger children or How it Feels When a Parent Dies for older children.28 Moreover, all lines of communication must be kept open to ensure that these concerns are discussed openly and honestly.

Conclusion

Cancer is a disease that is affecting more Americans each year and will not go away any time soon. It is important for physicians and their medical team to start addressing the psycho-social consequences of the disease on not only the patient, but also on members of the patient’s family. Referrals to appropriate professionals such as social workers, school counselors, or psychiatrists are imperative. Cancer centers now have psycho-oncologists on staff who have obtained post-doctoral training in the field and are qualified to look at the psychological, social, behavioral, and ethical aspects of cancer. Psychosocial support has taken a back burner to virtually every facet of cancer medical care, which is focused on eradicating illness. As people are living longer with cancer, it is about time that we supplement the medical component with the human element of cancer and nurture the families who are impacted day to day by the disease. PP

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