Principles & Practice of Pediatric Oncology
5th Edition

50
Educational Issues for Children with Cancer
Laurie D. Leigh
Mark A. Miles
Each year in the United States, approximately 8,000 new cases of cancer occur in children younger than 15 years.1 As medical treatment has advanced over the past 30 years, childhood cancer has increasingly come to be viewed as a life-threatening chronic illness rather than a terminal illness. One in every 1,000 U.S. adults between the ages of 20 and 29 years is now a survivor of childhood cancer.2 As the rate of survival increases, the quality of life of survivors takes on added importance. In his book, The Truly Cured Child, Van Eys3 challenged professionals working with children with cancer to reconsider the definition of cure. He defined a truly cured child as one with “social, mental, and physical well-being” and a “child who becomes an adult able to live to the full extent of his talents.”3 Because education is crucial to the realization of a child’s full potential, a partnership between health care professionals and school personnel is important to patients’ and survivors’ quality of life.4,5,6 Communication among all professionals who participate in children’s care, including school personnel, is not a luxury but an essential element in the total care of children.7
Children with cancer present a unique set of challenges to any school system. Some problems, such as absences and resulting poor performance, may be of short duration, whereas others may be long-term developmental problems that require ongoing assessment.8,9 This chapter approaches school reentry and intervention as the ongoing processes they must be. This process starts at diagnosis and requires a continuing commitment from health care professionals, school personnel, and the family of the child with cancer. Proactive, preventive assessment and intervention must be made an integral part of children’s treatment and the long-term follow-up process.10
THE IMPORTANCE OF SCHOOL REENTRY INTERVENTION
School is the work of childhood. It presents each child with a daily opportunity to feel productive, master the environment, learn social skills, and receive peer support. As Maul-Mellott and Adams11 stated in Childhood Cancer: A Nursing Overview, “The regular achievement and long-range planning required in the school setting validate the future for children. The acquisition of skills and mastery of complex principles are aimed toward preparing the child for the larger arena of life. In this way, participation in school reinforces the fact of the future for all children. It affirms the probability of living to use the skills gained.” Thus, children with cancer who are denied school participation are, in effect, denied an important opportunity to engage in age-appropriate, goal-oriented behavior.12 Such children may acquire a sense of learned helplessness that reinforces feelings of hopelessness and despair, obstructing their ability to cope with their illness and the rehabilitation process.12
Many authors have advised that children and adolescents with cancer return to normal activities such as school as soon as medically possible.6,13,14,15,16,17,18,19 In this manner, at least a part of their lives is returned to normalcy in the midst of their illness and medical treatment. Van Eys3 wrote, “A child’s development continues when he has cancer…. But the environment must be conducive to normal development. That environment is not just the one created by the parents at home, but the sum total of all experiences that the child has during his illness. The child must be allowed normal development during abnormal circumstances.” Thus, school reentry becomes a part of the treatment process, and teachers and school system become a part of the treatment team.
Problems that sometimes create a barrier to school reentry include a patient’s anxiety about peer teasing and rejection because of the visible effects of treatment, continued school absences, parents’ reticence to allow such a child to return to school, a child’s school phobia or separation anxiety, a teacher’s overindulgence or unrealistic expectations about a child’s abilities, a child’s illness-related disabilities (e.g., fatigue, pain), and the need for special services or classroom accommodations.12,15,20,21,22 However, children and adolescents often find that most of the social and emotional support they need for the return to school comes from classmates who have received education about an child with cancer’s illness and treatment.23
Research conducted over the past 20 years on the problems of school reentry for children with cancer and other chronic illnesses indicates that intervention reduces problems
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and increases the likelihood of successful reentry. Ross and Scarvalone24 described an intervention program for school personnel using a seminar format. The seminar offered general information about childhood cancer, treatment, and side effects; information about the psychosocial aspects of cancer treatment and ways in which school personnel can be helpful; a tour of the hospital; and small group discussions. Evaluation of the program indicated that the school personnel who were given information about the child with cancer’s disease, treatment, and related psychosocial issues felt more confident, were able to answer the questions of patients and classmates, could deal more effectively with parents, and could treat patients more as normal students.
Rynard and colleagues25 reported the results of year-end teacher and parent evaluations of a school support program. The basic components of the program were (a) discussion with patient and parent and phone contact with school personnel to explain services; (b) provision of information to the school, including a film for classroom use, a teacher’s manual about childhood cancer, a disease information sheet, and an individual medical summary for the child; (c) a meeting with school personnel, peers, and the child to help school personnel to anticipate the needs of patient and school community; (d) follow-up with the child and school personnel; and (e) an annual workshop for teachers, parents, and health professionals to provide additional information. Parents and teachers viewed the program as “highly useful.”25 The teachers found the school conference to be the most important component. Parents also rated provision of information to the school as very important. The results of this study strongly support the importance of links between school, hospital, and home.25
Benner and Marlow26 described an intervention for first-, second-, and third-graders who had a classmate with cancer. The 30-minute presentation provided general information about childhood cancer, treatment, side effects, and the emotional aspects of cancer. After the presentation, the classmates showed increased knowledge of childhood cancer and an increased desire to interact with the child with cancer.
Katz and colleagues13 studied the psychological and social functioning of children with cancer using a control and intervention group. The components of the intervention were (a) preparatory activities, including parent-child counseling and phone communication with school personnel to alert them to children’s general needs for special services; (b) face-to-face conferences with school personnel about specific needs and reentry presentation; (c) actual classroom presentation, giving a general description of affected children’s medical and hospital experiences; and (d) follow-up. The parents of children in the intervention group reported fewer behavior problems than did the parents of children in the control group. Children in the intervention group were also less anxious, less depressed, and had greater social competence after returning to school. Patients, parents, and teachers perceived the intervention as successful.
Katz and colleagues14 later described a similar intervention with the addition of a designated school liaison and reported that teachers, parents, and children perceived the intervention as beneficial. The teachers reported that they and the classmates of children with cancer gained knowledge as a result of the intervention. They also reported good acceptance of such patients by peers as another positive impact of the intervention.
Finally, Varni and colleagues27 went beyond the usual school reentry intervention. Their intervention was designed to improve the social competence of children with chronic illness, thereby facilitating positive social interaction with teacher and classmates. The results of this study suggested that social skills training may add to the benefits offered by the standard school reintegration intervention. Specifically, the group that received social skills training in addition to the standard intervention evidenced a significant reduction in behavior problems, a significant increase in classmate and teacher social support, and a significant increase in social competence after 9 months.
PHASES OF SCHOOL REENTRY
As a framework for our discussion of school reentry, we use a model of school reentry first described by Madan-Swain and colleagues.28 We integrate it with a stratification of student disabilities that can be used at reentry and throughout affected children’s scholastic careers. This chapter also addresses school intervention for children with cancer, including how to obtain special education services and special classroom accommodations based on federal legislation.
According to Madan-Swain and colleagues,28 school reentry occurs in three phases: phase 1, initial hospitalization and plans for reentry; phase 2, contact and education of school personnel; and phase 3, follow-up contact.
Phase 1: Initial Hospitalization and Plans for Reentry
The process of school reentry should begin shortly after the diagnosis of cancer. Certain principal considerations are included in this phase.13,28,29
Identification of a Hospital-School Liaison
As early as possible, the child with cancer’s physician or treatment team should obtain parental consent to assign a school liaison. The liaison should be a professional who has a background in education and can work with parents as an advocate for the child and serve as a bridge between the hospital and school personnel.19 This professional should contact the child’s school to discuss the child’s diagnosis and initial absence from school. The liaison also may use this opportunity to discuss with school personnel any pertinent premorbid history, such as scholastic achievement, peer acceptance, and general social adjustment in the school environment. The school liaison should ask about the parents’ history of supporting the child’s achievement in school and about their cooperation and their attitude toward school personnel.10
Such information is helpful not only for anticipating school reentry needs but for understanding a child’s learning style or possible learning disabilities and foreseeing what assistance such a child may need in understanding the diagnosis and treatment plan. Generally, children who have a history of premorbid learning or adjustment problems are at greater risk of difficult school reentry.12,15,20,22,30
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Physician Emphasis on the Importance of Returning to School
Early in the treatment process, involved physicians should discuss the importance of children’s returning to school and to other normal activities. The return to school should be discussed in terms of when, not whether. Parents who see the return to school as a normal expectation and part of the treatment plan are more likely to feel comfortable with the prospect of school reentry and to comply with the plan.19 Although many parents and patients are eager to discuss and plan school reentry, some parents are more reticent about sending their child back to school because of anxiety about infection, potential peer rejection, or ridicule. Some parents also become emotionally enmeshed with their child during illness, and both parent and child experience separation anxiety.21 School phobia also can begin at this time.
At least one study indicated some predictors that may be evident at this time. These include avoidance of the topic of school and passive or active resistance to participation in alternative school services, such as home-bound or hospital-bound instruction.21 These issues necessitate ongoing communication among parent, child, and physician about the continuation of education and school reentry. This communication will provide physicians an opportunity to gauge children’s and parents’ adjustment and compliance; will provide information to reassure anxious parents; and will arrange for the participation of other professionals, such as a psychologist or social worker, whose help may be needed. It will also give the patient and parents an opportunity to ask questions about any concerns they have about school reentry.
Arrangements for Homebound or Hospitalbound Instruction
It is very important that children have some type of alternative educational services while they are unable to attend school. Although important for every child, ongoing instruction and learning are most significant for children who are beginning their education and are building foundation skills in mathematics and reading, for children with a history of learning disability, and for older adolescents who are near graduation.10,15,31,32 An emphasis on continuation of school even while in the hospital or at home for extended periods reassures children with cancer about an expectation for a future.33 Also, appropriate homebound or hospitalbound education serves to decrease anxiety and hesitation about school reentry.33
In her study of 51 survivors of childhood cancer, Bessell reported that the survivors felt that continuing with school was very important. It made them feel “worth educating because survival was in the picture,” but it also created a focus on a more normal and productive activity. Unfortunately, they also reported frustrations in negotiating with the school system in getting homebound services started.34
Several options are available for the continuation of children’s education during hospitalization or confinement at home because of immunosuppression. If such children are at home or are hospitalized near their home, their school is responsible for providing a homebound teacher. If such children are hospitalized at such a distance from the home community that such provision is not possible, the school district in which the hospital is located may be responsible for providing education for the child. The hospital may have a school program that usually will communicate with the home school so that books and assignments can be sent to the teacher of a hospitalbound or homebound student.6,11,35 Such an arrangement will help to keep children with cancer in touch with what their classmates are doing. School reentry also will be easier if such children know that they have been doing the same work from the same books as that performed by classmates at home. Respondents in Bessell’s study indicated much frustration with this issue. They specifically reported problems with the homebound teacher knowing what was happening in the classroom and/or having appropriate materials from the classroom teacher.
Parents can ask the homebound teacher to make sure the materials match what is happening in the classroom as much as possible or ask for the school liaison to provide assistance with advocacy if the parent is not getting the homebound teacher or school system to cooperate with this request.34
Some school systems now lend laptop computers to students who are hospitalized away from home so that they can use e-mail to send assignments and maintain communication with classmates. Other technologies that may be available include video teleconferencing with a child’s classroom and the use of computer programs and the Internet to supplement educational materials.10
Teachers of hospital- or homebound students probably should meet with affected children for two to four sessions per week, so some self-discipline on the part of these children and support from the parents are needed if such children are to keep up with assignments. Basic skills development is of the utmost importance during the hospitalbound or homebound educational experience for younger children. At this age, building foundation skills in mathematics and reading is vital.11,15,35 The subject matter probably will have to be prioritized for such students. This is also important for adolescents who have several subjects and teachers. During this time, students probably will not be able to complete every assignment for every class. Also, some classes, such as drama, art, and the like, cannot be taught in the home or hospital setting; adolescents must be excused from them or be given alternative assignments.10
The school liaison should be aware of available hospitalbound and homebound services. This liaison should work with parents and their children’s school system to find the most appropriate method for continuing their children’s education and to design a plan whereby such patients receive appropriate credit for work completed. For homebound services to be approved for the child, the physician will need to document the need for services in a letter or by his signature on a form from the child’s school system. The liaison can assist the parent with this process by contacting school personnel to ask how the need for homebound services is documented and getting the form or letter signed by the physician and back to school personnel as soon as possible. In making contact with the school system about homebound services, the liaison can emphasize that the homebound teacher should use materials including books and assignments from the classroom teacher. Finally, it should be emphasized to everyone involved—child, parent, and school personnel—that homebound and
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hospitalbound educational services are a temporary measure, with the ultimate goal being school reentry.4,36
Providing Information to Classmates about a Child’s Illness
The child or adolescent may not return to school for several weeks to several months so it is best not to wait until the re-entry presentation to give information to classmates. When children are absent from school for a period for any reason, peers will have questions about where they are and what is happening to them. In the case of a child with cancer, the news can spread quickly, but inaccurate information also may be spread.37 Classmates may overhear such inaccurate information from parents and teachers or may fabricate an explanation when their questions are not answered. Myths about cancer, such as its being contagious, also abound, even among older adolescents and adults, and can lead to affected patients’ isolation from peers. Sometimes, for older adolescents, such misinformation can include the association between cancer and acquired immunodeficiency syndrome. Other children in the class may become worried also about their own physical symptoms. They may become afraid that the normal headaches and other body aches they experience mean they have cancer. They need to be reassured that cancer is a rare diagnosis and that every child has illnesses that are not related to cancer.
The only experience that many children and adolescents have had with cancer is that of an adult in the family. They need to know that adult cancer is different from childhood cancer. They should be told that children, for the most part, respond very well to treatment. If the child with cancer’s prognosis is unfavorable, those around him should be told of the possibility of death if they ask, with emphasis on the fact that things are going well for now.37
With the parent’s permission, the school liaison can work with the teacher, counselor, or both to provide appropriate information to a child’s classmates about the diagnosis, treatment, and the anticipated length of absence. The liaison also can provide written materials, such as Helping Schools Cope with Childhood Cancer: Current Facts and Creative Solutions, authored by Chambers and colleagues,38 and Cancervive Teacher’s Guide for Kids with Cancer, written by Nessim and Katz.32 These booklets can provide the teacher with some direction about how to talk with classmates and answer their questions if there is no one available from the hospital to make the presentation. It is also important to remember that siblings will also be affected by their brother or sister’s diagnosis and treatment and there are times when a classroom presentation for the sibling classroom is appropriate. This is especially true for siblings who are very close in age and may go the the same school as the child who is a patient. A template and other resources for the school presentation will be presented later in the chapter.
Classmates should be encouraged to communicate with the child in the hospital or at home. They may not be sure that this is okay or how to accomplish this on their own. The teacher should talk to the class about how important it is for them to keep in contact with the child and give them ideas such as using e-mail, cards, phone calls, audiotaped or videotaped messages, hand-drawn posters and, if possible, personal visits. Keeping in close contact with classmates will give a child with cancer a sense that they remain a part of the classroom, and will not be forgotten by peers. It will also work to reduce anxiety about peer rejection on school reentry.15,39
Assessment of Level of Disability
In the section on stratification of disability levels, we present a stratification of disability levels based on premorbid disabilities and chronic illness- and treatment-related disabilities. The level of disability should be assessed many times over a child’s scholastic career, and changes in level should be expected. In phase 1, information should be gathered about the child’s premorbid functioning. School history and any premorbid history of learning or physical disability will be the first pieces of information to be considered in determining level of disability.
The next information to be considered is the presence of any chronic illness– or treatment-related disability. Such diagnoses as brain tumor and acute lymphocytic leukemia (ALL) for which central nervous system–directed therapies are used are associated most often with chronic illness–related disabilities. With regard to brain tumors, disabilities may be caused by the tumor itself or by the effects of surgical resection.40 In the case of slow-growing tumors, disabilities or learning difficulties that appeared before the diagnosis of cancer may have been caused by the tumor. Hence, a learning disability, cognitive deficit, or delay that was in evidence before diagnosis may be disease-related. In some cases, the children’s cognitive or academic functioning may improve after tumor resection and recovery from surgery. Children with other malignancies may have impairments such as limb amputation or visual impairment due to enucleation of one or both eyes. Chronic illness– or treatment-related disability will have the greatest effect on children’s disability rating over time, as the long-term effects of treatment on learning emerge.
Also, during this initial phase, patients may begin serial testing and assessment of their neuropsychological functioning. This monitoring is most important for children who receive central nervous system–directed therapies, such as those who have ALL or brain tumors.40 Repeated assessment will be essential for the detection of emerging treatment- related disabilities that may not be seen for several years after treatment.8
Phase 2: Contact and Education of School Personnel
In phase 2, children with cancer actually will go back to school, if possible, and a classroom presentation will assist with school reentry. Children and adolescents usually want to return to school.19 At school, they can be students, not patients, and school can provide a refuge of normalcy.7,34 In planning for school reentry, the different perspectives, expectations, and needs of all the participants must be considered. Certainly, school reentry should not be an all or nothing issue. In other words, the child should be able to return to school on a part-time basis with the continued support of homebound services. Fatigue and frequent absences due to treatment may make full-time school attendance difficult or impossible. Considering the positive aspects of school
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attendance, it is important to accommodate these issues so that the child can return to school as soon as possible. Specific accommodations will be discussed in greater detail later in the chapter.
Child and Adolescent
Planning for school reentry always should begin with an interview with the children. As they consider their return to school, children and adolescents most often express concern or worry about peer rejection or ridicule because of hair loss or other change in appearance, falling behind academically or having to repeat a grade, and relating to teachers and other school staff.12,15,20,21,22,34
These problems are intensified for adolescents. Academic pressures are greater as adolescents move closer to graduation, so that the fear of falling behind or not graduating with one’s class is greater. Adolescents also must interact with several teachers, each with their own perspective on the subject illness and how best to treat returning students. Secondary schools also tend to be larger and less personal than elementary schools.42 Peer and social relationships are more complex at this age, as adolescents usually are more independent of parents and spend more time with peers.42
Children or adolescents also may be concerned about potentially stigmatizing situations, such as nausea, extreme fatigue, or frequent need to use the restroom during classes. Children and adolescents with physical impairments may be concerned about being knocked down while navigating a crowded hallway or stairway.
Before the interview with children with cancer, it is important to gather as much information as possible about their current level of disability and their premorbid school adjustment and level of achievement. Children and adolescents who disliked school or were poor achievers before their illness may have more difficulty with school reentry.10,39 Figure 50.1 is a form that may be used not only to gather information but also to guide the interview with children and their parents and to record the information gathered.
Child’s Fears and Concerns About Returning to School
Although common concerns usually are expressed by children and adolescents, all children should be given the opportunity to express their individual concerns.17 Discussion should include any previous problems the children with cancer may have had in school and how they may be related to fears or concerns they have now.
Services or Support Available to Assist Reentry
After fears and concerns are discussed, information should be provided about services available to assist reentry. If the children live a fairly long distance from the hospital, telephone consultation with the teachers or guidance counselor and provision of appropriate written materials may be all that can be done. At this time, discussion should address any need for special education or special classroom accommodations and the federal laws that mandate the provision of these services to children with disabilities (discussed at greater length in the section on federal laws protecting the educational rights of children with disabilities). Information about these services will assist in alleviating some fears and concerns of patients and parents.
Associating the need for special education services with the impact of the disease process and treatment, and identifying new deficits or weaknesses as “acquired,” may help returning patients to avoid perceptions that the services or the difficulties reflect on them personally. Reframing the condition as a side effect, as something the disease or treatment has done to them, may help to protect affected children’s sense of self-worth. They may be less prone to see placement as a punishment for something they have done or failed to do. As a part of such reframing, the special education services can be identified as one more way for such children to fight back against the disease process.
Presentation About Illness and Treatment to Classmates or Teachers
Even if there has been a post-diagnosis presentation to the classmates, the child who is returning to school may want another presentation. In some cases, the child may be going to a different grade or even to a different school and will have classmates who were not involved in the first presentation. Elementary-school children usually want someone from the hospital to go to their school. I have seen the enormous relief that the prospect of a classroom presentation can bring to many children. The case is less well defined with middle-school and high-school students, for whom the need not to be different is paramount. Adolescents sometimes wish to tell only teachers and a close group of friends and to have the information disseminated to others through them. It is important to respect such patients’ wishes in this regard, but equally important is to ensure that they are fully aware of available services and support and how these services can benefit them.
Topics That May Be Discussed with Teacher or Classmates
If patients have agreed to a classroom or teacher presentation, the exact content of the presentation should be reviewed. Always ensure that such children are fully aware of, and agree to, everything that will be covered in the presentation. For example, some children may or may not want to discuss their central line. At this time, also, children should be assisted in anticipating some of the questions they are likely to encounter.
Being Present and Participating in the Discussion with Classmates and Teacher
In my experience, most children and adolescents want to be there during the presentation and may wish to participate as an “expert” on their illness. Such children should be helped to formulate some “stock” answers to difficult questions at this time. Providing children with examples of what can be said or how situations have been handled by other children may ease some of their uncertainty or concerns. On the other hand, some children and adolescents do not want to participate or even be present during the presentation. Their wishes should be respected as well.
Parents
Parents have many concerns about their children’s school reentry. The attitudes of parents range from thankfulness that
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such children can return to the normalcy of school to feeling that they do not want them to suffer more by being forced back to school.43 Parents may be overprotective and feel that their children are too vulnerable to go out into the world.30 Parents and children also may develop a mutual separation anxiety that can lead to school phobia in such children and can cause parents to refuse to allow school reentry.21 In a survey by Charlton and colleagues,35 parents of children who had solid tumors and were returning to school listed the best and worst things about school reentry: In the “best” category were a return to normal, seeing their child happy and reuniting with friends, and ensuring that the child did not get too far behind in work. On the “worst” list were worries about the child’s inability to cope with school, possibility of physical injury, loss of hair, teasing by peers, and being behind in schoolwork. These parents also reported that they had received discouraging opinions about school reentry from others in the family, such as grandparents, who may have had outmoded ideas about childhood cancer.
Figure 50.1 School reentry checklist. IEP, individualized education program.
Parents’ level of anxiety or comfort about school reentry and return to other normal activities definitely influences how children with cancer respond12,20,35 and, in fact, can be crucial to school reentry success.30 Those parents who had little premorbid school participation may not believe that school reentry is very important and may not have skills necessary to help their children.12 These observations reinforce the importance of communication among all professionals working with children with cancer.
Information received by the school liaison about the parents’ premorbid school involvement should be shared. Everyone working with returning children should understand parents’ attitudes toward school reentry and scholastic achievement in general and should work in a proactive manner to assist the parents in recognizing the positive aspects of school reentry while providing reassurance and information to decrease anxiety about problems such children may encounter. Any professional who detects a problem in this area should alert other professionals working with the family to ensure that the family receives the needed support, such as referral to a psychologist or social worker in the community or at the hospital.
For parents of children who have some illness- or treatment-related impairment, the prospect of school reentry may be especially intimidating. Such parents worry about teasing and the possibility of injury to their children and also must navigate through the school system’s bureaucracy to get special services (special education, classroom accommodations, or both) needed by returning children. It is essential that such parents—and all parents of children with cancer—have access to information about available services, how they are accessed, what federal laws mandate that schools provide these services, and how to become an effective and assertive advocate for their children. Older adolescents also should have this knowledge and should become advocates for themselves. The school liaison should provide this information and written materials to parents to help them to understand this process better. The
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school liaison also should discuss with parents of children with cancer the specific needs of their children and should attend, with the parents, any important school meetings about such children. If the school liaison cannot attend such meetings because of distance, the possibility of a conference call during the meeting should be explored. Empowering parents and adolescents in this way can help them to regain a sense of control and a more positive outlook about school reentry.42
Teachers
The low prevalence of childhood cancer means that for most teachers and other school personnel, having a child with cancer in the classroom is a new experience.43,44 The teacher plays a crucial role in adjustment to school reentry by influencing the tone of the classroom and helping classmates to understand returning children’s physical changes and limitations.45 Most respondents in Bessell’s study of childhood cancer survivors saw the teacher as a “key individual in creating a successful school environment.”34 It is, therefore, vital that these teachers have a full understanding of such children’s diagnosis and treatment and have access, through school liaisons or parents, to any other pertinent medical information.
Teachers experience anxiety about their lack of knowledge of childhood cancer, what their expectations of the child with cancer’s performance should be, what medical problems might arise in the classroom, and how to deal with them.4,16 Such teachers want and need this information but feel uncomfortable about asking parents for it directly for fear of exacerbating their sadness about their children’s illnesses.4,23,24,30,45 This lack of information may lead to teachers’ overprotecting such children and treating them as favorites because of feelings of pity.4 Under these circumstances, returning students are not challenged to live up to their potential.
Conversely, involved teachers may lack information about the true limitations of such children and may have unrealistic expectations that lead to frustration and discouragement.30 If such teachers were familiar with returning children before the advent of their illness, their expectations may not take into account changes that such children have undergone. When several teachers are involved, as in the case of adolescents, this problem is intensified.
Teachers may feel uncertain and unprepared to answer questions from classmates about returning children’s illness and prognosis. Also, teachers may feel some conflict about the attention needed by children with cancer and may fear a conflict with the needs of the other children in the class.
The one factor that can prevent or alleviate these problems and fears is communication. Several studies have shown that teachers feel the need for more communication with the child with cancer’s medical team. Such teachers seek the provision of more medical information or information about the child’s functional level and performance expectations.15,16,20,23,24,35 According to the previously mentioned study by Rynard and colleagues,25 teachers rated the importance of a school conference very highly.
The school liaison should, as mentioned, communicate with returning children’s teachers and other school personnel shortly after diagnosis of such children’s illness to discuss the illness and the course of treatment and should provide some direction about how to talk with classmates and answer their questions.
Once the date of school reentry is known, the school liaison can meet with (or telephone) the teacher, other school personnel, and parents to make specific plans and to discuss expectations for performance, changes in level of ability and level of physical activity, and any accommodations or special services returning children may need. The children’s teachers should communicate with the homebound/hospitalbound teacher about knowing what skills have been learned while working with the homebound/hospitalbound teacher and the level at which such children will be reentering school. Teachers and school personnel also need to know what, if any, medical problems may arise at school, what to do or whom to call, and what medications the children may need to take. Also important is information about infectious diseases; teachers should inform involved parents as soon as possible about any possible cases of influenza or cases of or exposure to chickenpox.
Peers
Peer socialization is an essential part of children’s lives and provides them with opportunities to learn how to interact socially and build skills in conflict resolution and leadership.46 Because children spend so much of their time at school, it becomes the primary place where these skills are learned and practiced. As adolescents start to experience more independence from parents, their peer relationships take on even more importance.22,33 For a child with cancer who must be absent a lot, maintenance of good peer relationships throughout treatment is essential. Varni and colleagues studied how children with newly diagnosed cancer were affected by perceived social support. The results of the study revealed that perceived social support from classmates was identified as the most consistent predictor of adaptation. This further establishes the importance of the school as a social environment for the child or adolescent and the importance of maintaining peer support during treatment.47 In fact, there is evidence that a program of social skills training as prescribed in an earlier study by Varni and colleagues may serve to increase perceived classmate and teacher social support.27
The importance of the school as a social environment in the eyes of children and adolescents also leads to fears of peer teasing and rejection at the time of school reentry. Some teasing is a normal part of the school experience, but sometimes children with cancer are targeted because of their perceived vulnerability or fragility or because of the visible signs of their disease, such as loss of hair.20 Several authors have also noted that most incidents of teasing come from students in other classes.15,35,48 Although children can be cruel, some tease because they do not know what to say or how to act around children with cancer. They may wait for cues from the child with cancer and otherwise see how they behave before feeling comfortable with interacting with them.20 On the other hand, peers can become overly nice or doting, and this behavior may be perceived just as negatively as teasing, especially by adolescent patients.33 Most children and adolescents just want to be treated like normal.20,34
Peer education after diagnosis and before school reentry can be a bridge toward making the peers and the child with cancer more comfortable with each other. When presented with clear, accurate information at an age-appropriate level, classmates and peers can become the patient’s main source
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of support and sometimes can act to protect them from teasing.15 Peers need information about the returning child’s diagnosis; treatment; side effects of treatment, including any transient or chronic impairments (especially those that are visible); the course of treatment, including information about absences; and how they can assist such children in re-entry, with an emphasis on the need to treat them normally. They also need the opportunity to ask questions and should receive straightforward answers to their questions, including those about death. It may be helpful to ensure that any teacher involved in the school reentry to disseminate to other teachers any information that they receive. The professionals who perform the school reentry presentation can repeat it, if needed, for other classes at a returning child’s grade level or, at least, for all classes that an adolescent will attend.
School Reentry Plan
Materials for a school presentation are available through multiple sources such as Cancervive, which has a Back to School Kit and the Leukemia/Lymphoma Society, which has the Trish Greene Back to School Program. Both programs include written materials and videos to put together a presentation for different age groups. The child may also make their own video of the hospital and a typical day at the hospital with the assistance of nurses or child life specialists.
The following is a template for a school presentation that was first presented in a chapter in the revision of the book Educating the Child with Cancer.49
  • General information about cancer: Depending on the age of the classmates, this can include discussion of cells and how cancer cells grow “out of control.” Talk about facts and myths about cancer including the fact that cancer is not contagious and that you do not get it because of bad behavior.
  • Specific information about the child’s diagnosis and treatment:
  • Type of cancer—Use of visual aids such as posters or dolls is very helpful.
  • Treatment—Chemotherapy is usually described as “very strong medicine” used to kill the cancer cells and keep them from coming back. Radiation therapy can be described as invisible beams of radiation that are directed at the tumor.
  • Venous access line/subcutaneous port—Discussion of chemotherapy can include a demonstration and discussion of the venous access line or subcutaneous port. A doll with a central line or subcutaneous port in place is needed to show what the line looks like and where it is placed on the body.
  • Other medical appliances—This can include nasogastric tubes and other feeding tubes as well as a shunt.
  • Effects of cancer and treatment—Discuss what about the child’s treatment or disease brought about the change and if the change is permanent or transient.
  • Appearance
  • Hair loss
  • Changes in weight
  • A weakness on one side of the body
  • Loss of an eye or other facial changes due to surgery
  • Use of crutches or wheelchair
  • Loss of a limb or changes in the appearance of the limb due to limb-sparing surgery.
  • Energy level
  • Suppressed immune system—For younger classmates, talk about how the chemotherapy sometimes makes it hard for the child’s body to fight infection. This discussion may include discussion of appropriate hand washing to prevent the spread of illnesses such as colds. For older students, this can include a more in-depth discussion of white blood cells, their purpose in the body and how they are affected by the chemotherapy.
  • School absences—Classmates need to know that the child may not be in school every day or may be there for partial days, especially if they are still on treatment. These absences should be explained as a normal part of the child’s routine.
  • What classmates can do to assist the child—Ask classmates if they have any ideas about how they could help. Solicit comments by asking them to think about how they would like to be treated and how they would like for their friends to react.
Whatever combination of peer education and teacher education is used in a school reentry plan, one must keep in mind that every child is an individual with individual needs regarding school reentry. Although certain information always should be presented, the needs of returning children should be foremost in rendering school reentry a positive experience. Communication among the school, parent, and school liaison should be frequent in the days after school reentry to ensure that any problems or questions can be handled quickly. School liaisons should clarify to school personnel that they can be contacted at any time in the future with questions or concerns regarding the child.
Other resources for a school reentry plan:
  • Chambers A, Klinck A, Rynard D. Helping schools cope with childhood cancer: current facts and creative solutions. Ontario, Canada: Pediatric Division of Victoria Hospital, 1996. Provides a very good, comprehensive overview of issues of childhood cancer and was written with teachers in mind.38
  • Nessim S, Katz, E. Cancervive teacher’s guide for kids with cancer. California: Author, 1995. Well-done, small booklet written specifically for teachers.32
  • Rynard D, Chambers A, Klinck A, Gray J. School support programs for chronically ill children: evaluating the adjustment of children with cancer at school. Child Health Care 1998;27:31–46.25
Federal Laws Protecting the Educational Rights of Children with Disabilities
Three federal laws protect the rights of children between the ages of 3 and 21 and having disabilities that impede their ability to benefit from their educational environment. These
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laws are the Individuals with Disability Education Act (IDEA); the Rehabilitation Act (section 504); and the Americans with Disabilities Act (ADA). These laws apply to every level of education, from infant and toddler to college and vocational education, and they guarantee every citizen the right to education regardless of physical, mental, or health impairment. Although these laws are federal, local and state governments interpret and implement them differently.50 It is important that parents contact their state’s department of education for guidelines governing the ways in which these laws are implemented.
Any services needed by children in school, such as special education or classroom accommodations, have to be formalized with a written plan using the IDEA or section 504 of the Rehabilitation Act. The written, signed plan will protect the rights of the child with cancer and provide documentation needed by parents if the services are not provided appropriately.
Individuals With Disabilities Education Act.
The IDEA is a revision of an earlier law, PL 94-142 (Education of the Handicapped Act). The IDEA is a federal law that establishes a federal grant program to assist states in providing a free, appropriate public education, which includes special education and related services, to meet the unique needs of all disabled individuals between the ages of 3 and 21 [34 Code of Federal Regulations (CFR), Sec. 300.1(a)]. Additionally, such individuals’ education must be provided in the least restrictive setting; “to the maximum extent appropriate, children with disabilities shall be educated with children who do not have disabilities” (34 CFR, Sec. 300.550-.556). Special education is defined as “specially designed instruction, at no cost to the parents, to meet the needs of a child with a disability” (34 CFR, Sec. 300.17). To receive special education under provisions of the IDEA, affected children must meet criteria for classification under one of several categories: mental retardation, hearing impairment, vision impairment, speech or language impairment, serious emotional disturbance, autism, deaf-blindness, traumatic brain injury, specific learning disability, orthopedic impairment, other health impairment, or multiple disabilities.
In the authors’ experience, most children with diagnosed cancer are eligible for services under the category other health impairment, defined as “a child who has limited strength, vitality, or alertness due to chronic or acute health problems, such as heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes which adversely affects educational performance” (34 CFR, Sec. 300.7).
Special education includes services ranging from simple classroom accommodations in a regular classroom to all-day placement in a resource room environment to instruction in the home, hospital, or other institution. Related services means transportation, corrective, and other supportive services that are required for children with a disability to benefit from special education. These include audiology and speech pathology, psychological services, physical and occupational therapy, recreation, counseling services, school health services, social work services in schools, and parent counseling and training (34 CFR, Sec. 300.16). Classroom accommodations that children with cancer may receive include use of a scribe or tape recorder to take notes, shortened class or homework assignments, provision of information instead of copying from a board or book, preferential seating; more time for tests or written work, oral testing; and permission to leave class early to avoid accidental injury caused by travel through crowded hallways.
To receive these services, qualifying children must be referred to the school’s principal or to the special education director for the school or school district. If the parent is the one making the referral, it is best for the parent to write a letter asking for the referral. This assists all involved by making sure there is a record of the parent’s request. Once the referral is made, the school system has a certain amount of time to evaluate such children or to review the evaluation performed by other agencies.
If children with cancer have received neuropsychological, physical, or occupational therapy evaluations while in the hospital, the school liaison can provide these reports to the appropriate school personnel, with parental permission. A letter from an involved physician outlining diagnosis, course of treatment, and any illness- or treatment-related impairments that impact education also is helpful. For those obtaining services under the category other health impairment or orthopedic impairment, the school system may have a form for physicians to sign verifying such impairments.
If children are deemed eligible for special education services, a meeting will be scheduled to design their individual education plan (IEP). The meeting should include, at the least, the parents, any teacher involved, a school administrator, and others involved in such children’s care. It is advisable to have someone from the hospital, probably the school liaison, at the meeting to ensure that the pertinent aspects of the children’s medical care, illness, and any transient or chronic impairments are well understood by the IEP team. The IEP constructed at the meeting should consist of certain elements10: present level of academic and cognitive functioning and statement of needs as identified by assessments; the annual goal and objectives, including procedures for evaluating whether the objectives are met; and educational placement and the amount of time allotted for participation in the regular classroom.
The plan also should include a statement regarding ability to participate in the state- or district-wide achievement tests and a statement regarding accommodations needed. If children with cancer will not be participating, a statement should indicate why the test is not appropriate and how these children will be assessed. A statement should address also the need to take Plan A of the Scholastic Achievement Test (allowing the student to take extra time with the test). Also necessary is a statement of transition services.
After the IEP is signed by all participants at the meeting, it becomes a legal document that, by law, the state is required to carry out as written. Parents should keep a file or binder of all appropriate documents, including the IEP, and a copy should go into returning children’s medical records. The goals and objectives of the IEP are reviewed annually, and the IEP is rewritten if necessary; every 3 years, the child is reassessed. If, at any time, parents or any other member of the IEP team call for another IEP meeting, it can be scheduled to reassess a child’s placement and services.
The IDEA mandates early intervention services for infants and toddlers who are either disabled or at risk of developmental
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delays. These services are provided either by school systems or by the state health department. The law requires that services be provided to affected children and their families. Rather than an IEP, an individual family service plan is written.
Transition services are defined in the IDEA (34 CFR, Sec. 300.29) as a coordinated set of activities for a student, designed within an outcome-oriented process, that promotes movement from school to post-school activities, including post–secondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation. The coordinated set of activities must be based on the individual student’s needs, taking into account the student’s preferences and interests; and include needed activities in the areas of instruction, community experiences, the development of employment and to other post-school adult living objectives and, if appropriate, acquisition of daily living skills and functional vocational evaluation.
Specifically, 34 CFR, Sec. 300.347(b), requires that, beginning at age 14, each student’s IEP include specific transition-related content and, beginning no later than age 16, a statement of needed transition services. Additionally, 34 CFR, Sec. 300.344(b)(3), requires that for the IEP meeting at which transition services are discussed, the school system must “invite a representative of any other agency that is likely to be responsible for providing or paying for transition services” (e.g., a representative from the department of vocational rehabilitation). The purpose of transition services is to provide linkages to help affected students, parents, the school system, and community agencies to work in an organized effort toward meaningful employment and a quality adult life for students with disabilities.10 Although section 504 of the Rehabilitation Act of 1973 does not mandate transition plans, the 1998 amendments to the Rehabilitation Act do facilitate access to resources for transition, such as the Council for Independent Living and vocational rehabilitation services.
Rehabilitation Act of 1973
Section 504 of the Rehabilitation Act of 1973 (re-authorized in 1998) is not an education law or a federal grant program. It “clarifies that no individual with a disability in the United States, shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or any program or activity conducted by any Executive agency” (34 CFR, Sec. 104.4). Program or activity is defined as including “all operations of a local education agency, system of vocational education, or other school system.”51 This law applies also to colleges, universities, and private schools that receive federal funds. Under the provisions of this law, the definition of disability is broader: “a physical or mental impairment which substantially limits one or more of such person’s major life activities, such as learning; a record of such an impairment; or being regarded as having such an impairment.”
The pertinent disability is not required to affect school performance adversely, and affected children do not have to come under the umbrella of special education to receive services. All persons with diagnosed cancer are eligible to receive services under section 504.51 Each institution should have a section 504 coordinator who oversees compliance with this law. For affected children to receive services, a meeting similar to that for an IEP is conducted, and the needed services are written in the form of what is called a 504 plan.
In addition to stipulating conditions in academic settings, the Rehabilitation Act prohibits discrimination in employment practices; program accessibility; health, welfare, and other social services; nonacademic and extracurricular activities, including clubs; counseling services; transportation; and health services.10
Americans with Disabilities Act
The Americans with Disabilities Act (ADA) of 1990 provides a wider range of protection for all persons with disabilities. All persons with diagnosed cancer, even long-term survivors, are eligible for protection under the provisions of the ADA. It prohibits discrimination against persons with disabilities and applies to all state and local agencies (not just those receiving federal funds), including private businesses. The ADA not only prohibits discrimination against persons with disabilities but also requires that persons with disabilities receive “reasonable accommodation.” Although it is not an education law, its provisions do apply to education, including nonsectarian private schools. It provides a second layer of protection, in addition to section 504, to ensure that public schools provide reasonable accommodations for students with disabilities.51
Stratification of Disability Levels
At least one author has identified a need for staging the effects of disease or treatment on cognitive functioning, in much the same way in which disease staging is used to determine appropriate treatment.52 In this chapter, we propose that a level of disability be identified at the time of school reentry and throughout a child with caner’s scholastic career to identify clearly the resources needed and to discern which children are at risk of long-term learning problems. School reentry needs are determined by the level of disability.
Level 1: No Premorbid Disability and No Chronic Illness– or Treatment-Related Impairment
Children at level 1 may have only transient problems related to school absence, fatigue, and restrictions in physical activity. A more visible change will be loss of hair. They may not be able to play on the playground or participate in sports or physical education for a period. They also may need to make up work missed in their absence and will have future absences because of follow-up clinic visits at regular intervals. Because such children are unlikely to have received previous special services, school reentry planning should include discussion with their parents about their rights and their children’s rights under the provisions of the IDEA and section 504 of the Rehabilitation Act, so as to obtain any needed services or classroom accommodations. The school liaison should give them information about the referral process and assist them with meeting with school personnel. The liaison also should provide school personnel with information about the children with cancer’s treatment or follow-up schedules and frequency of future absences. School reentry may not mean coming to school for 5 days per week but may mean a modified schedule of only half-days or a 2- to 3-day week. Use of
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homebound services can continue to supplement educational services for such children when they cannot attend school. Shortened or modified assignments also may be used to assist these children with staying abreast of schoolwork. All services or accommodations that they need to complete the school year successfully should be included in the IEP or 504 plan.
Level 2: Premorbid Disability and No Chronic Illness– or Treatment-Related Impairment
Premorbid disabilities may include attention deficit– hyperactivity disorder; learning disability; hearing, vision, or speech impairment; mental retardation; behavioral problems; or affective disorders. Any premorbid learning or adjustment problems, along with the school absences related to the child with cancer’s treatment, will render school reentry more difficult.12,15,20,22,30,38,53 Even such transient problems as fatigue may be overwhelming to already functionally impaired children or adolescents.
Children and adolescents in this category may have had some level of special education services or special classroom accommodations and may have an IEP or a section 504 plan. Possibly, previous services were, or may have become, inadequate or inappropriate. School reentry planning for such children should include contact with professionals at the hospital, such as a psychologist or the school liaison, who can review children’s previous services and make recommendations for improvement, if necessary. Neuropsychological testing also may be helpful or necessary to assist with school reentry.
Such children may need a higher level of support, such as aides or tutors, to assist them during class time. Also, plans are necessary for use of homebound services when these students cannot attend school.
Level 3: No Premorbid Disability but Chronic Illness– or Treatment-Related Impairment
Chronic impairment usually is associated with central nervous system–directed therapy for ALL or brain tumors.8,40,54 Because children at level 3, like those at level 1, are unlikely to have received special services, school reentry planning should set aside time to discuss with parents their rights and their children’s rights within the scope of the IDEA and section 504.
Chronic impairment, as the name implies, is likely to be more permanent or persistent. School reentry planning, as one would expect, is more complex for chronically impaired children and may involve coordination with other professionals in a multidisciplinary format. Such children’s appearance also will differ from that of their peers. Visible changes go beyond hair loss and may include the use of a wheelchair or use of assistive technology, such as a magnifier for reading, a hearing aid, or an auditory trainer.
For such impairments as hemiparesis or vision, hearing, or speech impairment, a qualified professional should perform an assessment to determine the level of therapy or support needed by children with cancer. Neuropsychological assessment also should determine the level of cognitive functioning and should document any learning disabilities or deficits (e.g., slow processing speed, visual and perceptual deficits, and problems with memory or attention). These evaluations probably will be performed at the hospital treating the child, but outside rehabilitation professionals may be involved as well.
School reentry planning must address the special educational services or classroom accommodations certainly needed by chronically impaired children. It may be best to start with a conference of all professionals who have evaluated such children to plan for the specific services they should receive in school. Parents should be included at this conference and, at that time, a release of information can be obtained from them so that all evaluation reports can be sent to the school system after such children have been referred for special services. This meeting should produce a list of specific recommendations that can go into the children’s IEP or section 504 plan.
Children with cancer may need occupational therapy, physical therapy, or speech therapy or a special teacher for the visually impaired or hearing impaired to assist in a regular classroom. Full-time placement in the regular classroom may not be possible, so such children may have to spend part or all of their days in a resource room environment where the student-teacher ratio is lower and each child can work at his or her level.
They also may not be able to attend school every day or for an entire day. As with more transient impairments, an alternative educational plan using supplemental homebound services must be developed to ensure access to educational services during frequent or prolonged absences. Once recommendations are made, a referral for services should be made as per aforementioned guidelines. It would be advisable to have someone, such as the school liaison, at the meeting to discuss any pertinent medical issues, answer any questions from school personnel, and act as a child-parent advocate.
All recommendations regarding therapy, alternative class placement, and alternative educational services should be outlined clearly in the IEP or section 504 plan. Once they have been written and approved by the parents, follow-up should continue to ensure that children with cancer receive services as outlined in the plan and to make any necessary changes required by changes in the children’s level of ability.
One additional issue that must be raised with these children is the fact that these changes in cognitive or physical abilities may necessitate changes in expectations for the future. Plans for college may change to plans for vocational training or for a 2-year degree, and plans for an athletic scholarship or career may have to be set aside. Concomitantly, both parents and children may need support to develop acceptance of their need to reset expectations. All parents want their children to live up to their potential, but when that potential is changed by a cognitive or physical impairment, parents may have difficulty in understanding and accepting that what was once possible for their children is no longer within reach. They experience disappointment, even grief, for the loss of their premorbid children. Just as in other grief experiences, denial can be a factor, and some parents may expect their children simply to work harder. They sometimes do not understand or accept that this attitude will only continue to frustrate children who probably already are working harder and who themselves do not understand why they are experiencing more difficulty with some subjects.
Psychologists and physicians who evaluate and treat chronically impaired children must be aware of these possible problems and should carefully explain to both parents and children any illness- or treatment-related impairment, how the impairment changes affected children’s ability to function cognitively or physically, and how these changes will
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affect plans for these children’s future. The psychologist or physician should assess parents’ and children’s understanding and acceptance of this information and provide further information and counseling as necessary to assist with this process. In follow-up, they should maintain discussion with both parents and children and assist them as necessary in finding a new direction for their children’s future. Identifying the latent objectives underlying the manifest goals can serve as the means by which a family and child can identify new goals to achieve the same objective. For example, the manifest goal of an athletic scholarship that served the latent objective of financing college may be replaced by the goal of obtaining alternative scholarships through cancer survivor agencies, thereby satisfying the objective of paying for college.
The efficacy of specific programmatic interventions that could be implemented or recommended by school personnel with pediatric cancer patients returning to school manifesting such neurocognitive late effects as slowed cognitive processing speeds, problems with sustained attention and mental effort, and difficulties with memory encoding and new learning acquisition continue to be under investigation. Preliminary studies have suggested the potential effectiveness of stimulant medications in addressing the problems with attention and arousal experienced by children whose cancer had been treated with cranial irradiation or intrathecal chemotherapy 55 and the potential for enhancement of attention processing in post-treatment children through self-coaching or verbal mediation strategies and mass-practice cognitive retraining or cognitive remediation.56 Studies are currently ongoing by Bulter and associates to refine and clarify these initial findings relative to issues such as determining whether there are dosage levels or schedules that are, in efficacy, unique to post-treatment children compared with other pediatric populations for whose attention problems stimulant medication is typically prescribed and such as whether the cognitive interventions translate or generalize into improved school performance and grades. While group-based empirical studies continue to examine intervention packages of amelioration of cognitive deficits in the sample of pediatric cancer patients experiencing cognitive late effects; the need, as suggested for the application of the cognitive remediation interventions in pediatric traumatic closed head injury, may be for individually tailored or customized approaches with detailed delineation of very specific academic skill goals rather than for “pre-packaged” programs.57 Childhood cancer patients and survivors requiring academic and cognitive interventions now cannot wait for the empirical literature with studies targeted specifically to the cancer population to catch up. School personnel need to draw from research from other populations as well as from the general field of cognitive psychology in order to understand the nature of the individual student’s deficits disruptions or delays, and to develop interventions tailored to the particular student with close monitoring of their effectiveness in a “single case study” model.
While awaiting the results of empirically based group intervention studies with childhood cancer patients, school personnel may need to attempt interventions that have proved effective with other populations showing similar specific disruptions or deficits and closely monitor the outcomes for the individual student. For example, Armstrong and Briery have proposed that language-based cognitive abilities and processes can serve as the basis for development of compensatory strategies and interventions for disruptions, delays or deficits arising in visual-motor learning and performance.58 This is because language skills, appearing and becoming more crystallized or over-learned earlier in the course of brain development as the brain structures associated with these processes complete their maturation sooner, are more resistant to disruption by chemotherapy or cranial radiation in pediatric cancer patients, as they are in pediatric closed head injury patients, than are later developing processes, controlled by later maturing brain structures, such as attention and behavioral regulation, memory organization and retrieval processes, and executive processes such as higher-order problem-solving, reasoning and planning.58 Given this consideration, a logical case could be made for attempting to correct for attention and/or behavior regulation difficulties in a childhood cancer survivor through the use of self-coaching techniques, verbal mediation based strategies or externalization of processing approaches such as those delineated by Kendal and Braswell, Meichenbaum and Goodman, and Douglas and colleagues.59,60,61 Noting the relative integrity of the language processes of childhood cancer survivors post-treatment, Armstrong and Briery have recommended such compensatory interventions as providing students with books on tape for all reading assignments and using oral assessment rather than written testing for gauging knowledge acquisition.58 Similarly by comprehending, from the literature of cognitive psychology, the nature and structure of memory processes, rather than treating memory as a unitary construct, school personnel, in conjunction with the neuropsychologist performing error analysis of the student’s performances on standardized tests, can begin to construct and test interventions for the pediatric cancer patient’s academic and cognitive needs. For example, recognizing the presence of slowed cognitive processing speeds in a particular student as well as poor recognition memory and poor free recall marked by only a primacy effect, school personnel could test the hypothesis that the student’s deficient verbal memory recall performance is attributable to a reduction in the amount of information per unit of time that can be processed and encoded by the student for memory storage resulting in the formation of an incomplete mental template or internal representation of the information in memory storage. Such a hypothesis would lead logically to an intervention designed to reduce the amount of new material or information “chunks” the student is presented during one lesson. By understanding and using the principles of “depth of processing”62 relative to memory processes, school personnel and psychologists can design interventions and teaching strategies for the memory-impaired post-cancer treatment student that incorporate the linking new information to old or previously mastered information, the use of “active” versus passive learning modalities, and the use of multisensory instruction and information presentation such as occurs with many of the commercially available educational software programs. Finally, a degree of logic should prevail in the planning of accommodations and interventions for pediatric cancer patients or survivors returning to school with new educational needs and cognitive deficits. For example, with a student now requiring significantly more time to process information and execute thoughts or a student now more prone to physical and mental fatigue, elimination of
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timed testing and reduction in the workload or volume of assignments seem natural conclusions.
Level 4: Premorbid Disability and Chronic Illness– or Treatment-Related Impairment
Children at level 4 may be the most impaired, because problems related to the premorbid condition may be exacerbated by the illness or there may be treatment-related impairment. As with children in the other levels, it is imperative that plans be made for alternative educational services for such children during absences that occur while they are in treatment. Again, homebound services can be used when these children are unable to attend school.
School reentry planning should include a review with the parents of children’s previous special education services or classroom accommodations and discussion of any additional or more intensive services needed because of chronic illness– or treatment-related impairment.
As is scheduled for those at level 3, a conference of professionals involved in the children’s care should include the parents to discuss specific recommendations for meeting their children’s needs. If a previous IEP or 504 plan is in effect, it can be reviewed at this meeting or the parents can call school personnel to arrange a meeting for revision of the plan. If no previous plan exists, a letter of referral for services (as mentioned) would be appropriate.
Phase 3: Follow-up Contact
Initial Follow-up
In the weeks and months after reentry to school, school personnel and the school liaison should continue to communicate frequently to assess how affected children are adjusting to the school environment. Any further assistance should be given as necessary. If such children have an IEP or section 504 plan, the school liaison can assist the parents in ensuring that their children are receiving the services according to the plan.
Long-Term Follow-up
In our model of school reentry, follow-up for children with cancer continues for years, through high school and college or vocational training. Long-term follow-up is necessary because of the long-term or late neuropsychological effects of therapy for cancer. As defined by Mulhern,40 there are “pathological changes in the child’s central nervous system (CNS) secondary to cancer or its treatment that are manifested by stable changes in the child’s behavior.” For our purposes, behavior includes cognitive functioning and academic achievement.
Not all children treated for cancer receive treatment that affects the central nervous system or its functioning.63 Significant physical and psychosocial effects relate to diagnosis and treatment of any childhood cancer, but the transient impairments resolve with few or no long-term sequelae.63 However, 50% of children treated for cancer, specifically those with ALL or brain tumors, receive cranial radiotherapy (CRT) or systemic or intrathecal methotrexate. Several recent studies have shown that such children are at increased risk of neuropsychological late effects from their illness or from treatment that significantly limits their attainment of educational and vocational goals.64 The greatest risk for these children appears to be related to age at the time of diagnosis and treatment and gender; female patients receiving CRT are at greater risk than are male patients.40 Other factors associated with greater risk are total dose of radiation, age at the time of CRT, administration of CRT and intrathecal methotrexate in combination, and additional intensive therapy for relapsed disease.64
Testing of long-term survivors of ALL and brain tumors indicates that cognitive deficits usually do not begin to appear until 2 to 4 years after the start of treatment and that the magnitude of the deficit increases with time after treatment.40,63,64,65 Psychometric scores also decline progressively over 2 to 4 years.8,40,63 Cognitive deficits seen on neuropsychological testing include deficits in sequential memory, arithmetic, processing speed, visuomotor integration, attention and concentration, and fine motor coordination.8,40,65,66,67 The decline in standard scores usually is not representative of a progressive deterioration of abilities but of a significant slowing of the rate of development of abilities relative to the rate demonstrated by others in the patient’s age cohort.8 This information, combined with the facts that younger children have greater deficits and that specific abilities associated with frontal cortex function are impaired led Armstrong and Horn8 to propose a model of developmental emergence of deficits. According to this model, treatment with central nervous system–directed therapies interferes with the normal development of the frontal cortex, thus interrupting or delaying functions that would have emerged as part of the normal development course.8 Structures that are developed prior to treatment remain intact. This model helps to explain why a child’s performance on tests of neuropsychological function is within normal limits during a given year but becomes significantly impaired a few years later.
At the time in development that the specific cognitive ability would have been expected to become evident normally and thereby measurable or testable, it fails to be manifested by the child experiencing late cognitive effects secondary to cranial irradiation or intrathecal chemotherapy. At that time, the presence of the deficit becomes documented psychometrically; whereas previously the child may have, on testing, appeared normal since the area of deficit was not being measured even though the predisposition to the deficient cognitive process had been present previously. A final point regarding this phenomenon is that the nature of the child’s inability to perform the specific cognitive task or process at the prescribed developmental time-point is generally unknown. There are four possible explanations: (a) the inability reflects a true deficit; that is, the loss of, or failure to develop, the capacity; (b) there is a delay such that the ability and process will eventually develop and be manifested at some later point in development; (c) it is a disruption such that the process is present but there is interference with its effective manifestation or application; or (d) there is a deviation such that the process or ability is developing but in an altered fashion.
On an individual basis with a specific child, the neuropsychologist, school or clinical psychologist evaluating the child can be helpful, however, in delineating the apparent nature of the deficit by providing qualitative information as well as quantitative data about the child’s performance on testing. Most scores from a child’s performance on the most frequently used standardized and norm-referenced psychometric measures or
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testing batteries merely represent the child’s relative percentile ranking or standing within the cohort of his or her age peers and are not measures of the “amount” or quality of a cognitive, academic, or neuropsychological ability or process. Consequently, for school personnel to better target the selection of curriculum materials for the amelioration of identified deficits manifested by a child, it is paramount that the evaluator incorporate into the assessment report descriptions and qualitative analysis of the types and nature of errors the child made that contribute to the problematic testing score and performance. It is insufficient for a psychologist to report, in the documentation of a child’s testing results, only the child’s standard score. For example, on one of the tests of story recall that are part of verbal memory test batteries, a child could attain that same score through a variety of means or performances. The child could recall a certain number of details from only the beginning of the story, the same number of details from only the end of the story or the same number of details that were scattered about within the whole story. Each performance suggests a different functional dynamic to the child’s verbal memory functioning (e.g., primacy effect dominance, recency effect dominance, or poor memory organization), which would necessitate significantly different intervention and educational strategies for correction. Yet which dynamic is at play is unknown when merely the standard score is reported to school personnel. Similarly, it should be unacceptable for the psychologist to merely report that on academic achievement testing the child, for example, “performed within the Borderline range and at an early–2nd grade level equivalency when doing written math calculations.” Far more informative to school personnel in planning the child’s IEP would be an additional statement such as “While able to perform addition and subtraction when regrouping was not necessary, the child made numerous errors where the operations required carrying or borrowing as the child tended to extract quantities from or relocate values to the wrong column” or “the child made numerous errors where the operation required borrowing as the child would reverse the direction of the operation in the column, subtracting the smaller minuend value from the larger subtrahend digit.”
The fact that these neuropsychological deficits are not readily observable8 suggests that even in the light of average academic performance, neuropsychological abilities should be assessed at regular intervals, according to a plan of surveillance.40 Often, school and medical professionals do not have information about the premorbid functioning of children and do not consider the fact that some of such children were above average to superior in function before the administration of central nervous system–directed therapies, and average performance in these children may represent a slowing of the acquisition of skills.52 Although they appear to be doing well, such students actually may need special accommodations or services to retain as much of their previous learning potential and scholastic performance as possible.
Provision of special educational services or classroom accommodations for children with cancer may be complicated, because their disabilities do not always conform to the discrepancy model used by most U.S. school systems to determine eligibility for services under the category specific learning disability.66 This model uses a formula that mandates a discrepancy of one standard deviation (15 points) between measured intelligence quotient and measured academic achievement. For children with cancer, this discrepancy may not show up for years, during which time meaningful intervention may have been lost.8 For that reason, many children with cancer receive services under the IDEA category other health impairment or under section 504 of the Rehabilitation Act. These categories for eligibility do not require the use of a discrepancy model.
School personnel, including school psychologists, often have little or no experience with children with cancer and do not understand the potential impact of treatment for ALL or brain tumors. Problems with attention or memory may be interpreted by school personnel as laziness, lack of motivation, or other emotional difficulties.68 School psychologists also may lack experience with the kinds of neuropsychological assessment needed to define the cognitive deficits experienced by such children. Therefore, it is important either that the child be assessed by a pediatric psychologist or neuropsychologist through the auspices of the hospital or that the psychologist consult with the school psychologist to assist with the assessment process.8,40,64 Mulhern and colleagues64 proposed guidelines for the assessment of school problems to assist professionals with this process. Armstrong and Horn8 also suggested an assessment approach. They recommended that affected children be tested at 12- to 18-month intervals. They also urged that, in addition to neuropsychological tests, curriculum-based measures be used to track the progress of individual children.
This prescribed frequency of formal assessment is greater than the reassessment rate traditionally undertaken by school systems and prescribed by special education legislation as the minimum (which is every 36 months). Therefore, more frequent serial neuropsychological and psychoeducational testing of the child may need to be delineated and scheduled within the formal goals of the child’s IEP.
The foregoing findings only corroborate the need for pediatric oncology professionals, parents, and school personnel to work together to evaluate the school performance and neuropsychological abilities of children at risk and offer appropriate assistance. One author even suggested that parents be asked to bring their children’s report cards to the clinic on a regular basis so that school performance could be assessed.69 To facilitate this vigilance, the long-term neuropsychological effects of disease and treatment must be explained carefully and explicitly to involved parents and to older children who can participate in decision making.40 For school personnel to become full partners in this process, they also should have access to such information.
As stated, professionals also need to assess the parents’ and children’s understanding and acceptance of any changes in functioning and the need to reset expectations for children’s future. Further information and counseling should be provided as necessary to help parents and children with this process. The basic principle is to assist family and child in finding alternative paths to broader life objectives, such as personal productivity, meaningful interpersonal relationships, financial stability, recreational enjoyment, and personal identity.
College and Vocational Training
Not all high-school graduates can or will attend college, but the presence of any learning disability related to disease
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or treatment should not keep young adults from considering the possibility of college attendance. Colleges and universities must accommodate students with disabilities, according to provisions of the Rehabilitation Act of 1973 and the ADA. Having an IEP or section 504 plan in high school will provide the documentation necessary to assist students in obtaining appropriate services in college. If students are attending college when disabilities are discovered or when they become severe enough to affect school performance, appropriate assessment will provide the documentation.
Many colleges have a person designated to work specifically with students with disabilities. To help students to determine which college may have the best program for a specific student, several books list colleges and universities that provide specialized programs (e.g., Peterson’s Colleges with Programs for Students with Learning Disabilities or Attention Deficit Disorders).70 Those students who do not want to attend a 4-year college or who cannot because of their level of functioning have alternatives, including 2-year training programs through community colleges and vocational or technical training. Sheltered workshop programs are available for those who are more severely impaired. As mentioned, a plan for transitional services should be included in an adolescent’s IEP or section 504 plan.
Terminally Ill Children
School reentry and intervention programs emphasize the hopeful aspect of childhood cancer. However, sometimes children’s cancer progresses, all curative treatment has been exhausted, and affected children enter the terminal phase. When should school services end? Davis41 chose to answer the question by looking at the range of school services available.
Terminally ill children probably have been in the chronic phase of treatment and have been attending school.41 School participation can change from school attendance to homebound services or any combination of the two to accommodate terminally ill children’s physical problems or minimize their discomfort. Continued school participation is very important to the emotional well-being of children, even terminally ill children, and it may be one of the few normal activities in which such children can continue to participate.31,71 This was made clear also by Lansky and colleagues70 in a review of absenteeism in children with cancer. These authors found that children attended school one-half the time during the year they died. It is vitally important that teachers continue to see such children for as long as the children desire. If contact with affected children is stopped suddenly against their wishes, they will feel “abandoned, lonely, and helpless.”41 At some time, academics no longer will be appropriate, and teachers may want to engage such children in other activities.41
Another issue is support for teachers and classmates. Teachers will be trying to support a terminally ill child’s classmates but will need support also. School or hospital mental health professionals may have to be consulted for assistance. Communication from the school liaison should be frequent, answering questions the classmates may have about such children and their condition.
Grief Issues in the Classroom
Many times when a child dies, they may not have been in the classroom for a few weeks or months. Classmates may not be aware when death is imminent or that the child with cancer has died. If nothing is said about it in the classroom by the teacher or a counselor, classmates may feel awkward about their feelings of grief and not know how to cope with those feelings. Everyone deals with grief differently and some classmates may not want to experience grief in a group setting, yet others may find the experience a validation of their feelings and find solace in talking with peers and teachers/counselors in this setting.
Dealing with grief in the classroom, the teacher must take into account developmental issues and the individuality of each student’s reaction to the child or adolescent’s death.58 Consultation with a bereavement professional may be appropriate before considering how best to discuss the death of a classmate.58 There are also other resources to consider:
CONCLUSION
It is important that the process of school reentry and intervention begin at the time of diagnosis and continue through the transition to college or vocational training and into adulthood. Educational intervention continues to be one of the most exciting areas of research in pediatric oncology. It is also one of the most promising because, as survival rates increase, the quality of life of survivors becomes ever more important. Because education is necessary for successful entry into employment and adulthood, it is imperative that children and adolescents with cancer receive the services they need to realize their cognitive potential fully. Toward this end, it is imperative also that parents and professionals who work with children with cancer, including physicians, psychologists, and teachers, have a clear and thorough understanding of the educational issues involved. They must also be prepared and committed to work together as a team to provide the long-term, continuing intervention and follow-up needed.
Parents of children with cancer need information and support to become assertive and effective advocates for their children. As children grow to adolescence and young adulthood, they also must have this information and become advocates for themselves. Through an integrated, developmental approach to school reentry and continued school intervention, the survivor of childhood cancer can look more optimistically forward to successful adult life.
ACKNOWLEDGMENTS
The authors thank Raymond K. Mulhern, Ph.D., chief, division of behavioral medicine for his assistance in preparation of this chapter. Additionally, we express appreciation to the American Lebanese Syrian Associated Charities for the
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support it has provided to the School Program of St. Jude Children’s Hospital, at which many of the principles related in this chapter have been developed and applied.
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