At the diagnostic stage, and immediately thereafter, children may experience stress in understanding the seriousness of the situation and in dealing with uncertainty. How do children become aware that they are in a serious situation, that they have a condition they ought to worry about? Sometimes parents or staff members tell them directly, but information may not be complete, may be delayed or not presented in a manner appropriate to the developmental stage of the child. Children and family members whose primary language is not English may struggle with simply understanding what hospital personnel are telling them, let alone the complexities and implications of impending medical procedures and treatment. Also, children will draw conclusions from the many cues consciously or unconsciously exhibited by parents, family members, friends and medical staff and by reading between the lines of what is said directly and what is whispered out of earshot. Many children note the rapidity and drama with which they are hospitalized; siblings are allowed to stay home from school in order to be at the hospital; grandparents travel long distances to come to the bedside; friends and relatives visit in large numbers; nurses and doctors visit often; and, almost everyone is extra attentive or looks scared or sad.

When a child is diagnosed with cancer, parents report feeling overwhelmed by the shock of the diagnosis, the stresses of uncertainty, and feelings of being trapped on an unpleasant emotional roller coaster (20). They report being faced with a strange and unfamiliar disease (21) and confronted with the challenges of understanding medical information, standard and alternative treatment options and possible complications, preparations for home care, and education about subsequent stages of illness and treatment (22). Part of the issue here is the diagnosis of a rare and potentially fatal disease that threatens the life of an innocent child, and that this occurs in a Western and affluent society where it is assumed that parents will die before their children. In addition, parents become introduced to a world of health utilization, governmental and community entitlements, hospital policies, health insurance regulations and limitations, and models of health care delivery (22). Even the language used by doctors and nurses can often be alien and strange to parents. The experience of hearing one’s precious child referred to impersonally as “the host” or “the osteo in room 3” can be alienating. Parents also report feeling powerless in watching their child suffer and governed by the disease and its effects on everyday life and work (23).

Siblings of all ages struggle as well. Several studies indicate that siblings desire yet lack information about their brother or sister’s cancer, the cause of it, and about the ill child’s condition and prognosis (24,25). They mention having to observe their brother or sister undergo painful procedures, and particularly at the end of life (24) (see Chapter 7.1.2.). They often feel left out of important family discussions with the healthcare team, and in some instances feeling left out of the information loop can result in siblings creating or imagining conditions that manifest fear (26).

Pediatric cancer treatment often involves multiple administrations of highly aversive medical procedures such as lumbar punctures, bone marrow aspirations, spinal taps and venipunctures over a prolonged period of time. Distress may be manifest by crying, screaming, requesting emotional support or physical contact, verbal resistance, verbal expression of fear, information seeking, and requesting delays in the administration of procedures or nonadherence with treatment (27). As treatment progresses, the seriousness of the situation may be brought home to the child by drastic medical procedures. Surgery, chemotherapy, radiation, repeated hospitalization, tests, and injections all debilitate the child physically and emotionally. In addition to pain, the illness and the side effects of treatment disrupt family life, school attendance, friendships and social activities.

As the amount of time spent in treatment increases, children inevitably experience the deaths of other children whom they have befriended. These deaths bring home very clearly the life-threatening nature of their own illness. The fragility of life becomes apparent when children realize that death could affect them as well (28). While we do not know how children deal with the imminence of approaching death, their clarity and straightforward approach in conversations represent a powerful coping strategy (15).

In adapting to the disease and its treatment, children with cancer also experience stress arising from relationships with staff members and medical personnel, and anxiety often is exacerbated when they are not allowed to be active participants in discussions of their illness. In the absence of adequate information, children may fantasize an even worse scenario, fearing the worst because they do not know what is wrong with them (29). Children also may experience anticipatory symptoms, including nausea and vomiting. Through repeated associations with chemotherapy and its aftereffects, certain environmental stimuli (e.g., smells and sights of the clinic) that are initially neutral come to elicit symptoms similar to those induced by chemotherapy (27). These impacts can influence siblings as well, in that brothers and sisters report having to
“take care” of their ill brother or sister or parents, to take on extra tasks at home, and to be shuffled around to other family, friends, and neighbors, resulting in disruptions or limited involvement in social activities (24,30).

Managing and balancing family home life and care for a child with cancer are the ultimate in challenge for parents. Many parents have indicated that uncertainty about their parent role and anticipating their child’s distress during medical procedures are primary sources of stress, with uncertainty about the parenting role being associated with other measures of psychological distress (31). In addition, parents are confronted with decisionmaking and practicalities of informing their child’s school officials about the child’s illness, overseeing the process of actually facilitating the child’s return to school, monitoring his/her health and needing to teach school personnel about unexpected health problems and signs to watch for (32). Parents also express concerns about their child’s safety and of teasing by peers, and about academic progress and physical stamina (33) when returning to school. Concerns about the high financial costs of treatment and the need to devote much time to the sick child both at home and at the hospital are paramount (34) as another source of stress.

Nonadherence to prescribed treatments constitutes one of the most frequently encountered impediments to therapy administration in children with cancer, and these behaviors may take the form of refusing a procedure or treatment, failure to keep an appointment, or choosing alternative “unorthodox” treatment modalities (27). Recent discussions suggest that the rapport between medical staff, parents and children may be a key ingredient in overcoming resistance and promoting adherence to medical regimens. Thus, increased participation of children and adolescents in medical conversations and decisionmaking and treatment planning may help counter the possibility of nonadherence.

Cultural differences between patient, family, and medical staff also may interfere with treatment administration. Culture defines a family’s response to an ill child and may explain behaviors such as nonadherence to prescribed therapies, parental preferences not to say the word “cancer” or not to discuss the issues with the child, degree and quality of parental involvement in patient care, and the family’s relationship with healthcare staff (27,35). Thus, physicians who wish to develop the most effective practical relationship with the child and family should carefully understand the cultural frame of the family.

While most patients are able to resume school activity in early outpatient phases of the treatment, complexities of treatment regimens, frequency of routine followup, disease status, neutropenia and infections can contribute to school difficulties (27). Hospitalizations result in missed school days and often necessitate assistance with schoolwork (obtaining assignments, learning materials, completing homework) (22). Many children’s hospitals have inpatient schools where teachers help patients keep up with their schoolwork, often communicating with the child’s teachers to obtain assignments.

How much school a child misses, and his or her level of achievement, will be factors in making plans for educational needs during treatment. Some children end up missing the academic year, others are able to keep up with peers, utilizing a tutor perhaps whenever not feeling well enough to attend school (36). Increased school absence, which can interfere with academic progress and peer socialization, is a common problem for children with cancer as they miss an average of 21–45 days of school per year (37,38). Missing school is associated with reporting cancer-related stress and lower adjustment to cancer, and children with lower adjustment ratings also reported having fewer friends (39). On the other hand, other research shows that, within limits and with proper assistance, school attendance is not in and of itself a good predictor of academic performance and success.

Barriers to school reentry include changes in the child’s appearance, cognitive abilities, emotional status, and physical activity, and misconceptions by peers and school personnel about cancer (40). Before returning to school, children have reported being most concerned about their ability to keep up with schoolwork and participate in extracurricular activities. They also expressed worry about their peers’ reactions to changes in their physical appearance and the possibility that they may no longer fit in with friends as before (33).

Returning to school after an extended absence can be exciting but also anxiety provoking. Most children express concerns about returning to school after a long absence (36) or about keeping up in school both academically and physically (33). A study of children with cancer found perceived classmate social support to be the best predictor of adaptation in the child with cancer (41). Once having returned, these children’s worries about academic performance and medical problems diminish, but concerns about keeping up with peers in extracurricular activities due to physical impairments persist.

Findings regarding childhood patients’ experiences in school and social adaptation are mixed. Some investigators have examined social interactions between children with cancer returning to school and their healthy peers, and have reported that teachers and healthy peers perceived children with cancer as more socially isolated or withdrawn, low in leadership and social skills and disengaged from peers; yet, peer perceptions did not affect the child’s popularity, their number of mutual friends, or their ratings of social competencies (42,43). Some children returning to school have reported positive and rewarding friendships, whereas others recount negative experiences like “feeling invisible” and being bullied or “picked on.”(44,45) In contrast, others have reported generally adequate social adjustment for children with cancer as they return to school (46,47,48). In some cases the children describe themselves as more prosocial, teachers describe them as less aggressive, and peers perceive them as more sick, tired, and having missed school (49,50).

Lahteenmaki and colleagues (45) report that as many as one-half of their sample of 43 childhood cancer patients were unsure whether their illness had been disclosed to classmates, and this concern reflects how peer reactions to the ill child and teachers’ limited understanding of cancer may interfere with proper school reintegration. Peers may tease children with cancer because of their appearance or may avoid them for fear of contagion. Teachers may give the child “special” treatment, reinforcing the differences with peers, or may place excessive academic demands on a cognitively impaired child, or may reduce expectations or workload for patients who may be intellectually capable of completing assignments.

It is now generally accepted that central nervous system treatments for childhood cancer can result in significant cognitive impairment, most commonly in the areas of attention and concentration (51). Children who have received certain treatments, particularly to the central nervous system, are at risk for developing learning problems. Among areas frequently affected are attention, concentration, memory, handwriting, math, and organizing or sequencing of tasks (36). Children who have
been irradiated and children diagnosed under 6 years of age are at greatest risk for difficulties in school functioning (52).

Prolonged courses of cancer treatment often become an inevitable series of events (doctor visits, periods of nausea and illness, fatigue) in which children feel no respite or escape. Frequent disruptions, including hospitalizations or confinement to home often lead to periods of social isolation. Although most children with cancer experience a great deal of positive attention at first, some feel forgotten and eventually isolated from friends and peers as time goes by (15). This sense of isolation is particularly true for children with brain tumors who are perceived by peers as being sick and fatigued, are often absent from school, and identified less often than healthy peers as being a best friend (53).

Relationships outside the family, particularly with friends, often are a source of stress. Frustration and pain from social isolation and stigmatization by peers are experienced, as peers may have misconceptions and fears. Zeltzer et al. (54) have reported that youngsters with cancer report that the illness decreases their popularity with peers. This may be in part the result of chronic and repeated hospitalizations that decrease access to their peers; however, it may also relate to the stigma of cancer and to ill youngsters’ experiences (or fears) of rejection. At the same time, research suggests that many school-age children with cancer report themselves feeling more mature than their peers, leading to the development of peer-type relationships with older youngsters (55,56).

The introduction of cancer into the family can change family dynamics and roles dramatically. Often parents face a struggle to cope with their own emotional needs while also being attentive to the needs of the patient and other family members. Frequently this struggle leaves siblings receiving the least amount of time and attention, despite their growing concerns.

Studies indicate that siblings of children in treatment report feelings of anger, resentment, jealousy, frustration, and isolation from their family; of being overwhelmed by fear for their brother/sister’s health; of fear of contagion of cancer; guilt for not being sick themselves; and of being treated differently by their parents (26,57,58,59,60,61,62,63,64). They also report concerns about change in peer relationships in that peers would react to the illness in negative ways that affect their social lives (65). Other studies indicate that siblings experience feeling no control over a family situation in which they cannot influence the disease process, and frustrated that decisions about the illness and care are in the hands of doctors, nurses and other adults (parents) (57,66). In cases involving death and bereavement, siblings often indicate that they feel unprepared (67). As a result, siblings may experience anxiety or guilt, or they may distance themselves or ignore the entire situation in response to feelings of being left out or isolated, or as a means of protecting themselves from the experience (68).

While changes in daily routines are accompanied by shifts in attention and being treated differently by their parents (61), siblings also have indicated that they felt positively about this treatment and that it was “only fair,” given the circumstances. In turn, siblings may tend to treat their parents differently in that they perceive the need to protect their parents as well as the child with cancer by not making them worry (59,69). Yet siblings still characterize these changes as a lack of communication or poor communication between themselves and their parents (59,60,61,64,70,71). On the other hand, some siblings report, in retrospect, that despite these strains and tensions their family grew closer as a function of the ways in which they dealt with the illness together (30).

Raising a child with cancer may alter a parent’s ability to parent effectively (27). Overprotectiveness, difficulty with maintaining consistent discipline and expressing appropriate anger toward the child, and concerns about “spoiling” the child challenge parents throughout treatment and recovery (72). While data suggest that parents of children with cancer do not differ from community-matched parents of children without cancer with regard to basic orientation to childrearing (73), their ability to carry out the tasks of childrearing over the longterm certainly is impacted. Work by Zebrack and colleagues (74) has demonstrated that mothers of survivors of childhood cancer continue to worry about their children’s medical and social futures, especially when they perceive that their children worry about these issues. The investigators’ overall conclusion is that parental concerns and wellbeing and those of the child survivor have reciprocal influences on one another. Indeed, there is much agreement among researchers that family functioning and distress are integrally connected to the survivors’ adjustment; that there exists a reciprocal nature of coping and adjustment among parents and children (31,47,75,76,77,78).

Of particular concern to parents are the effects of childhood cancer on their marriage. With mothers and fathers assuming distinct and different roles in the face of childhood cancer, they also may exhibit different coping styles. The stress created by these differences, compounded by the disease-related stresses on personal and family time, finances, and family, can lead to marital strain for parents. Some studies show profound changes and marital discord in the parental dyad (79), while others show that marital relationships remain stable or actually improve over the course of the child’s cancer (80). For some, the cancer experience compounds or exacerbates preexisting marital stresses (81).

As might be expected, children and their families experience and exhibit emotional and behavioral problems during the initial phases of diagnosis and treatment, with investigators reporting behavioral and emotional disturbances manifested in increased anxiety, depression, regression, and withdrawal among children in treatment for cancer. For instance, Cavusoglu (82) reports that rates of depression for both males and females aged 9 to 13 and at least 1 year after initial diagnosis were significantly higher than in a healthy age-matched control group and that rates also were significantly higher among patients in treatment than those off treatment and in remission. Some investigators have reported increased levels of distress associated with longer periods of active disease and treatment (83), and others have found that children with cancer ranked school reentry as a primary source of psychological pain, due in large part to their falling behind academically and the negative reaction of classmates. The authors conclude from their findings that younger children may be more adaptable to adverse situations than older children, or alternatively, that adjustment difficulties may not appear until much
later after treatment and may manifest as posttraumatic stress symptoms.