Informed Consent
Informing parents and their child about treatments is similar to informing them about the diagnosis of cancer. The approach, the setting, the need for repetition, and the awareness of each family’s unique strengths and limitations all remain important. It is a positive sign of coping and adaptation when the family asks questions, openly expresses concern, and actively seeks to increase understanding of the child’s disease and treatment. Parents should be encouraged to take notes as this often assists them in recall and in formulating questions. Some may benefit from audio recording the consent meeting so they can share the information with other family members who are not able to attend. For parents who are not literate or who speak another language, a team member assigned as a patient advocate or an interpreter should be present (see the section Cultural Considerations). Only the physicians involved in the child’s treatment should obtain informed consent. Nine steps can assist families through this process.
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A full explanation of the treatment and associated procedures must be presented without professional images and jargon. Professional terms that are unavoidable should be explained in lay images and words.
The purposes and expected benefits of the treatments need to be listed.
Common morbidities from procedures as well as common morbidities and side effects of treatments should be outlined without verbal overload (e.g., presenting extensive lists of all possible side effects), which generates confusion and anxiety.
Alternative (complementary) treatments need to be acknowledged and discussed.
Recognizing the parents’ feelings and thoughts improves the connection between the physician and parents and helps to allay anxiety. This is the time to inquire about the known or expected reactions from grandparents, other relatives, and friends who may express their own disbelief or anxiety and offer advice.
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The voluntary nature of treatment must be made clear.
Parental awareness of the right to withdraw from treatment should be explained carefully, including the meaning of withdrawal “against medical advice.” Describe, if necessary, those situations in which the physician will vigorously pursue treatment over parental objections, even to the point of obtaining a court order for treatment.
The previous steps are then summarized in the patient’s medical chart; at a minimum, the date, time, and those present when informed consent was obtained are to be noted.
Written consent forms are signed when appropriate or required.
Consent forms almost always cause families considerable stress. The reading level of these forms is often at a college or higher educational level. In clinical research settings, informed consent for treatment is compounded by requests to participate in randomized treatment trials. Clarifying expectations about research participation, prognosis, and physical changes associated with treatment is important when obtaining consent, so families can appropriately prepare. Receiving this information from someone they trust is most helpful. True informed consent is an ongoing process that extends beyond a few formal meetings and printed consent forms.
Parental and Family Adaptation
Over the first year after diagnosis, most families adjust to the distress and disruptions of cancer treatment, with consistent improvements in overall psychological well-being.
33 Surprisingly, the extent of psychological difficulties in response to diagnosis and treatment is not consistently related to more objective measures of the severity of the illness or intensity of the treatment.
34 Those families that cope and adjust most adaptively at diagnosis tend to continue to do so over the course of treatment and into survivorship. Those families that experience the greatest distress at diagnosis are likely to warrant greater attention to their psychosocial needs across time.
Given the improved survival rate in childhood cancer, health care professionals emphasize maintaining “normalcy” throughout treatment.
35 This is challenging as there is nothing “normal” about having a seriously ill child. Moreover, the family is faced with the task of reorganizing itself, changing previous priorities and expectations, and reassigning roles as described above.
36 Particularly when the initial hospitalization is lengthy, families anxiously await the day their child is well enough to return home. Some parents, however, find the return to home particularly stressful as the hospital is often perceived as a safe environment, a place where the child’s medical and psychosocial needs are continuously met. Parents may worry about the added responsibility and question their ability to care for their child’s physical well-being at home.
37 Despite their concerns, parents are typically successful in the transition to create as normal a life as possible within the confines of the diagnosis. Over time, a new day-to-day routine is established, encompassing the needs of the well siblings in addition to those of the sick child. When it is time for the child to return for further treatment, some parents resent having to yield some of their parental responsibilities to the medical system again. Others look forward to being assured that their child is doing well or will be receiving treatments that can cure the disease. These responses are appropriate. Over time, families settle into the routine of the hospital visits while obtaining a comprehensive grasp of medical treatments and procedures.
It is normative and understandable to see some parental distress across treatment.
38 Emotions may change quickly and are influenced by the child’s medical state and resources available. Specific factors associated with adaptive family functioning during treatment include open communication about the illness within the family, an attitude of living in the present, lack of other concurrent stresses (marital, financial, illness of other family members), positive family relationships, previous adaptive coping of all family members, and adequacy of the support system.
39 Maladaptive coping may include excessive concern about relapse and death, reluctance to allow the child to return to everyday activities, interpersonal strife, emotional distress and persistent and/or escalating anxiety or depression, behavioral symptoms in the well siblings, difficulties making clinic visits or treatments, reluctance to interact with other patients or families, and ongoing pessimism. In more extreme situations, magical thinking, regressive forms of behavior, or withdrawal from reality may be evident.
Many cancer treatment programs offer the services of social workers, child-life specialists, educators, psychologists, and psychiatrists to assist families. The need for psychosocial intervention during treatment cannot be overemphasized. Information gathered during the initial screening will help tailor and guide the nature and intensity of psychosocial support according to the specific needs of the family. Most families will benefit from individual or family supportive counseling to find ways in which the family can further unite and strengthen relationships. Education about the disease and its management are critical and should address psychosocial aspects as well as medical and/or nursing implications. Other interventions, such as “problem-solving skills training” for mothers of children with cancer, have been found to reduce negative affectivity in mothers and enhance their ability to resolve problems related to the care of their child.
40 In many cases, the expertise of social workers and/or case managers is vitally important in assuring that families have the tangible resources necessary to travel to the hospital and pay bills. There are many helpful resources available to families (
Table 45.3) and these organizations typically provide written materials for families and may sponsor support groups or other programs for children with cancer and their families. Increasingly, the Internet is also a source of information and support for families.
Another resource can be a pediatric palliative care program. Pediatric palliative care (PPC) is a system of holistic care for children with life-threatening conditions and their families, which focuses on relief of symptoms as well as pain and stress caused by a serious illness or treatment. PPC is delivered by an interdisciplinary team in partnership with the patient’s primary and subspecialty providers and is appropriate at any stage of illness—including cure-directed treatment.
41 While utilization of PPC is low early in the course of a child’s active treatment, this is beginning to change, with more centers developing triggers for palliative care referrals so as to remove any stigma a family may experience as a result of receiving palliative services
42 and to avoid last-minute transitions in care, if needed.
Parental Expectations and Discipline
As treatment continues, parents often find themselves in a quandary in deciding how to “parent” their own child. Parenting the child or adolescent with cancer requires parents to control their fears enough to return to modified pre-illness expectations of achievement, independence, and responsibility. Doing so allows the child to become a well-functioning and responsible adult
43 but feelings of guilt and anxiety about the disease and possible relapse can interfere with the parents’ ability to act in the child’s best interest.
44 Parents of children with cancer report higher levels of spoiling and concern about their child’s health and development than comparison parents.
45 Many parents may overindulge or overprotect their child, and find it difficult to administer any discipline. This situation exacerbates the child’s perception of himself or herself as different and “singled out” and places the child in an uncomfortable position with peers and siblings who resent unequal attention. The child may also perceive the additional attention as meaning that the prognosis is worse than what s/he had been told. A child may encounter overprotectiveness in one parent and overindulgence in another, or both reactions in the same parent. Such inconsistencies can limit the development of the child’s coping skills and adjustment over time.
46 Informing parents what the child can and cannot realistically do in comparison with abilities before the cancer diagnosis can help them find a balance between overindulging the child and setting too many limits. Parents feel less guilty saying “no” to their child when the health care team has sanctioned limit setting.
Play
Play occupies a central role in the mental and physical growth of all children. Serious illness and its accompanying stress and physical restrictions interrupt natural play and socialization.
47 Specific developmental tasks, such as the toddler’s exploratory behaviors or the adolescent’s identification with peers, may be disrupted. Parents may be fearful of injury or anxious about their child being with other children leading to impaired socialization. An important task for the oncology team is to encourage the child to resume play and socialization as much as possible.
In many pediatric oncology centers, the child with cancer has access to established supportive activities ranging from hospital or clinic playrooms to structured groups to special summer camps. The child’s participation in such play and recreational programs is important beginning at diagnosis and continuing through treatment and remission to long-term survival. Hospital and clinic playrooms provide the patient with a child-centered environment. They offer a safe setting free of medical procedures in which the patient can restore, in part, normal aspects of living. Over the course of illness, these activities may assume varying functions, helping to prepare the child for medical procedures, forestalling
major developmental disruptions, and facilitating the child’s social development. Play activities provide a needed source of pleasure and a medium for self-exploration as well as offer the patient an opportunity for mastery and control as opposed to the passivity and dependence enforced by illness. Mastery through play may reduce anxiety by helping the child to overcome fears and to cope with frustrations.
Social Reintegration of the Child
Children with cancer, even in the least intense portions of treatment continue to have poorer physical and emotional quality of life than their healthy peers
48 and need to be encouraged to resume a developmentally appropriate social trajectory. While cancer disrupts the typical avenues of social activity, a family can help to alleviate the child’s feelings of being alone and different by structuring daily living for the child with cancer in accordance with normal expectations for a well child at a parallel developmental stage. Contact with friends can be encouraged by planning short visits, making telephone calls, or connecting through social networking sites, internet messaging, and webcams. When medically able, the child should be encouraged to resume social activities within the community and with peers. Children with primary central nervous system (CNS) involvement tend to be at greatest risk for peer problems; however, even those with ALL (acute lymphoblastic leukemia) have been observed to be less engaged with friends.
49 Particular attention should be given to the social relationships and functioning of children with cancer during and after treatment.
50No consistent, comprehensive, and generalizable protocol is available for promoting the social adaptation of the child with cancer. At present, institutions differ in the number and type of social activities (e.g., playroom, volunteer programs, special camps) and interventions (e.g., child-life or support groups) available to the children they treat. A critical next step is to measure the social performance of these children systematically, to follow their progress over time, and to develop interventions (e.g., social skills training) to minimize developmental interruptions.
Return to School
A child’s life is organized around school, and successful reentry demands rapid return to this environment. School provides for the development of academic abilities, peer contacts, and social activities. A child who misses as little as 4 weeks of school in a year may encounter problems in building the skills necessary for academic progress, as well as miss out on the shared experiences that make up friendships. The illness and its treatment may also be associated with fatigue, reduced concentration, memory deficits, slowed processing speed, and other executive functioning impairments that further interfere with academic and social learning.
51,52 It is not uncommon for a child with cancer to miss so much school that they need to repeat a grade,
53 and even after treatment ends, childhood cancer survivors (and their siblings) have higher rates of absenteeism than the general population.
54 Long-term survivors have reported school absenteeism to be one of the most significant and disruptive consequences of having cancer. Reasons for absenteeism extend beyond necessary clinic visits, hospitalizations, and treatment side effects. Children must also cope with fears of death, the reactions of others, fatigue, and activity restriction, and changes in physical appearance caused by weight gain or loss, alopecia, or amputation. The development of a dependent-protective relationship between the parent and child may also reinforce school absences.
55 Still, school plays a vital role as the most immediate and important part in normalizing the life of a child with cancer.
Prevention of school problems is possible by establishing a system for early and ongoing communication among the family, school, and medical personnel. As instructed by Katz (2014),
56 home instruction should begin in the hospital or as soon as a child returns home, if not medically ready to return to school. The home teacher should be oriented to the child’s illness, treatment, and schedule as well as to special family and cultural issues. A plan for returning the child to school as soon as medically possible should be created. Special assistance plans (e.g., 504 plans) should be put in place to accommodate the physical and educational needs of the child related to their cancer treatment. Children who have received Special Education services through an Individualized Education Plan (IEP) before getting ill should have the plan revised as needed during the period of home instruction to ensure proper assistance is in place when they return.
The patient, classmates, and school personnel all need to be prepared for the child’s return to the classroom. For the patient, concerns about being unable to resume previous activities and the reactions, questions, or misunderstandings of classmates are foremost. Opportunities to rehearse explanations often decrease anxiety. It is usually best to tell the child to respond to questions or comments briefly, directly, and honestly. The child’s specific response depends on his or her comfort and developmental level. Some children have benefited greatly from watching videos about the reentry process such as the “Back to School Video” in the
Videos with Attitude Series of the Starbright Foundation (1999) (
Table 45.3). Children who resist returning to school or interacting with healthy peers may benefit from professional guidance to remain connected to their friends. These videos and others similar to them can be used in schools and classrooms to help the other children understand their peers’ experiences.
Classmates and peers may benefit from preparation in order to dispel myths and misconceptions about what has happened to the ill child during their absence. Teachers can obtain permission from the family to prepare the class in advance for the child’s return by describing events openly and answering questions honestly. Alternatively, some children with cancer are interested in talking to their class as a group. Presentations or projects, such as a show-and-tell for young children or science or health projects for older children, may be used to inform the class about the disease and its treatment.
57School personnel need information about childhood cancer and its implications in the academic setting. Specifically, teachers require a description of the child’s medical status, treatment side effects, prognosis, and daily functioning. Conferences, workshops, and telephone contacts all are useful ways to convey this information.
Medication Adherence
Ongoing adherence with medical regimens, including following prescribed drug regimens, enduring multiple medical procedures, and attending appointments regularly, is an important part of living with and adapting to cancer.
58 Nonadherence represents a significant, though often unrecognized issue for children with cancer and can hinder or negate attempts to provide optimal treatment. Nonadherence can result in misjudging medications as ineffective, unnecessary diagnostic tests, initiating alternative treatments,
59,60,61 and ultimately can result in poorer outcomes.
62Several factors including limited cognitive functioning in child or parent, high family conflict and poor communication, history of psychiatric problems, low socioeconomic status, forgetfulness, the aversiveness of procedures, the complexity and prolonged nature of drug protocols, lack of mastery and confidence in the treatment and lack of sense of control, and the patient’s age contribute to poor adherence.
59,61,63,64 Ethnic minority status and family structure (i.e., lone parenting) have also been linked to poorer adherence rates.
62,65Nonadherence is most frequently researched in adolescents. Compared with younger children, adolescents are less adherent with oral medication
58,64 and, in general, are less cooperative with
their medical care. This pattern is consistent with developmental expectations as adolescents seek to exert and maintain control of their lives and develop their independence. Although the adolescent may assume some adult responsibilities and aspects of their cancer care, these are probably carried out inconsistently. Confusion about responsibility for certain functions increases the chances of missing appointments or medication doses. Adolescents also struggle more with wanting to be “normal” like their peers; treatment and its side effects interfere with this.
Routine assessments of adherence are needed throughout the treatment course. When adherence difficulties are identified, interventions should be delivered immediately. Ongoing management of adherence includes several factors. As is developmentally appropriate, the patient should be an active participant in treatment-related decision making and should be given as much choice as is possible (e.g., scheduling treatments when they will least interfere with other activities). The oncology team can help the family to set clear expectations and to clarify roles. Decisions about who will be responsible for administering medications or for remembering appointments should be made early, before problems arise. In this regard, it can be helpful to set up a contracted system of expected behavior and consequent reward. Family members or friends can be recruited to assume supportive or supervisory roles. Also, medical personnel should provide written directions and should make sure that patients understand the purpose and dosage of each medication as well as the timing frequency and method of administration. Visual or auditory signals (e.g., programmed phone alarms) may be helpful as reminders for when it is time to take medication. Involvement of a mental health specialist to develop behavioral intervention strategies may be appropriate, and in extreme cases, hospitalization for stabilization and education, or the involvement of child protective services may be needed.
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