What we know
Most children with cancer miss at least some school, especially during the year immediately following diagnosis. Unfortunately, a few encounter extreme absenteeism for diagnoses or treatment (which may itself require hospitalization) or because of post-treatment illness or lethargy. In general, students with brain tumors are absent more than those with leukemia, as is true for students who relapse. One study from 1999, for example, found absences among students with cancer (ages 8 to 15 years) averaged 31 days, five times greater than for healthy classmates. Prior foreign studies found even poorer attendance. Besides loss of entire days, some students leave class if feeling ill or lethargic, adding to their total of missed classroom time. Fortunately, treatment advances may lessen some of these problems. However, it is still unknown if today’s advanced medical treatments help current students achieve regular attendance.
What to do
Teachers are powerless to prevent medically-related absences, but they (and other school personnel) can nonetheless help. There are five important ways to avoid non-medical barriers to regular attendance.
First, because good school-home-hospital communication about the importance of regular attendance promotes good attendance, it is imperative that everyone involved understands the student’s ability to attend class. A clear statement from health providers about when/if it is permissible for a student to stay home may thus help avoid unwarranted absences. In cases of extensive absences, liaison between school and clinic (such as by the teacher himself/herself or via school social worker, nurse, counselor, or school psychologist) is advised (see Teacher Toolbox section for forms to facilitate communication).
Second, dealing with parental overprotection can help with attendance. Consequently, emphasizing to parents the necessity of regularly attending school—for all of its academic and social advantages—is advised.
Third, minimizing absentee-related frustration and failure upon school return may help. Accordingly, if attendance becomes problematic, it makes sense to secure homebound services and assure that missed academic content (e.g., critical skills in math or essential vocabulary) is sent to the student and checked for completion. Unfortunately, no research has yet addressed the impact of homebound services on later attendance and, thus, this practice should be approached with caution. Some anxious students, or those from over-protective families, find working at home so comforting that even when their doctors clear them to return they resist going back to campus.
Fourth, addressing each student’s fear of peer ostracism (e.g., due to hair loss or classmates’ misbeliefs that cancer is contagious) can facilitate regular school attendance (see Interpersonal and Emotional Problems section for intervention tips).
Fifth, tackling potential logistical barriers can aid some students, such as when families lack transportation or babysitters. Helping families access community (or hospital-based) supports should not be overlooked. If necessary, teachers can contact their own school’s social worker, if one exists, or reach out to hospital or community workers to guarantee appointments are kept and that transportation is available to permit return to school.
What we know
The immediate social consequences of diagnosis, treatment, and return to school are addressed in the Return to School section. Of course, long-term social adjustment is also a consideration. Although many studies find students with cancer to be well adjusted after treatment completion, such students are still at risk for social anxiety, social withdrawal and isolation, and lack of close friendships. These problems may result from feeling different than peers, which in turn arise from absenteeism and treatment-related physical changes. Anecdotal reports suggest that children with cancer are also the objects of teasing, which obviously can worsen social adjustment at school.
The literature concerning the long-term risk of emotional problems is unclear. Given the variable nature of cancer, its treatment, consequences, and outcomes, varied research findings are hardly surprising. Some studies document post-diagnosis mood problems (e.g., depression), poor self-esteem, and somatic complaints. Other studies do not. A summary of three decades of research published in 2009 concluded that the largest post-treatment impact was the child’s physical nature (e.g., motor functioning, physical functioning, and liveliness) and that problems with mood and self-esteem were secondary to these concerns. However, there were recognizable differences between the emotional status of childhood cancer survivors and their healthy peers regarding anxiety (that diminish with time) and to a lesser extent depression, PTSD-like symptoms, and emotional stability. Students with cancer also reported reduced health-related quality of life.
Type of cancer and its manner of treatment may also be related to ongoing emotional status. As with cognitive status, central nervous system (CNS) tumor survivors seem to fare worse emotionally than other cancer survivors; those who required cranial radiation therapy (CRT), especially if delivered when they were young, also did worse emotionally. For example, in one study CNS tumor survivors had a 50% higher risk for depression and a 150% higher risk for antisocial behavior than their siblings. In another study, using intrathecal chemotherapy to treat cancer was by itself was associated with an increased depression risk.
The long-term adjustment to cancer and its consequences may also be an issue. This may include students making emotional accommodations to cognitive decline and loss of skills (if late effects are present), emotional trauma of diagnosis and treatment, changed relationships with classmates, and concerns about long-term survival. Neurocognitive changes alone, such as to executive functioning, can engender diverse and important challenges. Research, for example, shows that poor executive functioning impacts social relationships, emotional regulation, and emotional coping. Moreover, some research suggests that adolescent cancer survivors might be especially vulnerable to risk-taking (e.g., illicit drug, alcohol, and tobacco use), presumably because of loss of faith in their futures.
What to do
Children with cancer encountering social and emotional difficulty may benefit from the following interventions:
- Brain-tumor specific social skills training. In one study, a social skills training program was developed to provide children with the necessary skills to deal with questions from others (e.g. what happened to your hair?). Children were taught to identify problems, consider their cause and explore alternative ways of resolution, express their thoughts and concerns to others, and how to cope with teasing. After the program, parents reported fewer behavior problems and greater school competence (compared to those receiving standard return-to-school instruction) at 9 months follow-up. Teachers may want to contact their school psychologist for assistance establishing evidence-based social skill programs.
- Promote school involvement. The longer children with cancer are away from school, at the time of re-entry or later, the more difficult it will be for them to adjust to school (socially, emotionally, and academically) upon return. Even when children are away for medical treatment, teachers should consider ways to keep them connected to school (e.g., having the classmates write get well cards; see the Missed Instruction interventions section for more tips on promoting school involvement).
- Facilitate peer support. Supportive peer relations and compassionate social support are often important to a sense of normalcy. Thus, it is not surprising that research documents that perceived peer support improves long-term psychological adjustment among adolescent cancer patients. One method to increase peer support is through peer education programs upon school-reentry or later. Teachers will recognize that these programs are necessarily tailored to each student’s age and developmental level. For instance, older children are more likely to benefit from discussions, whereas younger children may be more amenable to activities and demonstrations, such as puppet shows or coloring activities. Peers benefit from information such as how students get cancer, whether it is contagious, side effects resulting from cancer and treatment, what an ill student can and cannot do at school, and issues about death and dying. There are anecdotal reports that students of all ages enjoy an opportunity to ask questions and dispel myths, but research on this topic does not yet appear to exist. Educators implementing a peer education program should follow these steps. First, gain permission from the student with cancer and his/her parents. Some students may not want their classmates to know about their experiences, or may feel uncomfortable with this attention. Second, be sure to consider a students’ preference about being present or absent during the presentation. Third, follow students’ and parents’ advice about what information is appropriate for classmates. For instance, a student may wish to talk about the mechanical aspects of treatment and side effects, but not to talk about personal fears and worries associated with these experiences. Fourth and finally, the school team should consider who can best deliver the presentation. A student’s teacher is often most appropriate; however, some teachers unfamiliar with cancer might defer to a medical professional, school nurse, counselor, or school psychologist. Some students initially need adult help to stop teasing and increase social interaction. For example, playground monitors, or other selected staff, might organize games and activities, encourage a student with cancer to engage in peer activities, and prompt classmates to include a student with cancer. Importantly, however, some students remain physically unable (e.g., due to nausea or fatigue) to participate in playground activities. These students might be offered alternatives like card games, puzzles, or drawing materials. For older students, adult-facilitated, social skills groups during lunch might be used to increase interactions.
- School-based or community-based counseling. School-based counseling targeting adjustment and coping might occasionally be helpful. Especially when a teacher suspects that immediate social or emotional support is needed, a school counselor (or other appropriate school personnel) might be contacted. However, chronic or severe emotional distress might be better addressed by professional counselors or psychologists at the child’s local community mental health clinic (local mental health facilities can be located by visiting SAMHSA online) or by telling the student’s health care team about the need for professional mental health assistance
What we know
With advancement in treatments, nearly 80% of children diagnosed with cancer survive. Critically, however, the life-saving treatments themselves can adversely affect the developing brain. This is especially true when cranial radiation therapy (CRT) or chemotherapeutic agents that enter the brain are used to treat leukemia or cancers of the central nervous system. It is important for teachers to realize that detrimental effects may not appear until 1-3 years after treatment concludes (thus, they are referred to as late effects). Roughly 50-60% of childhood cancer survivors treated in the manner described above will experience late effects. Risk factors for late effects include being younger when treated, being a girl, and receiving more intensive treatment.
Despite differences in type and location of tumor, as well as associated treatment, many children and adolescents with brain tumors experience noteworthy general and specific cognitive impairments. This was clearly evidence when findings from 39 empirical studies were recently summarized. Compared to normal individuals, students with brain tumors (on average, age 6.1 years at diagnosis and age 11.1 years at assessment) had lower scores than expected IQ and achievement scores, the size of which can be seen using the common metric of IQ tests (where a score of 100 is the statistical average). For example, students with brain tumors scored as follows: full scale IQ 87.6, reading 93.3, math 91.0, and spelling 90.6. It is not surprising to teachers that deficits in any of these areas can jeopardize school success. For instance, inability to consolidate memory of facts learned one day to the next day can produce poor performance on content area tests and frustrate both student and teacher. Global IQ declines can make all school learning much more difficult.
Regarding leukemia, deficits are somewhat less obvious but potentially still important. For example, when 28 empirical studies were recently summarized, students (on average, age 5 years at diagnosis and age 12 years when assessed) were found to have scores as follows: full scale IQ 89.4, reading 91.5, arithmetic 91.0, and spelling 93.7. Specific neurocognitive deficits of potential school importance were also detected. For example, attention and verbal memory scores were found to be lower among children with leukemia than among control youngsters.
Paralleling the findings above, numerous studies document that survivors of both brain tumors and leukemia are frequent special services recipients. For example, such students were 3 to 30 times more likely to receive special education services than healthy classmates.
So in light of the information provided, learning problems in school might include:
- General cognitive decline sufficient to constrain effective problem solving
- Diminished academic status in each key skill area of reading, mathematics, and writing
- Problems learning material and skills one day and remembering them later
- Trouble paying attention and a tendency to “space out”
- Difficulty understanding and remembering visual information, such as what is seen on the blackboard or in a book
- Trouble with quick and efficient work completion (e.g., problems writing quickly or accurately)
- Trouble keeping up with new material
- Problems planning and organizing
- Inability to copy from the blackboard
What to do
If the problems listed above occur for a particular student, then revised or individualized instruction might be required. In some cases, this will mandate an Individualized Education Program (IEP) or a 504 plan (see Disability Rights section for details). Regarding intervening at school, EdMedKids lists the following points, although empirical research documenting actual school benefits for students with cancer has not yet been well established.
General Monitoring and Intervention
- Encourage obtaining baseline psychometric assessment that includes all domains subject to late effects (IQ, working and declarative memory, visual perception, processing speed, motor speed and dexterity, executive functioning and attention, academic skills, social emotional status) to be repeated every 6 to 12 months. Periodic re-evaluations are often conducted at a health care site, but local school psychologists might be consulted.
- As supplement to psychometric assessment, consider curriculum-based approaches and content-specific assessments to track immediate (e.g., weekly) progress.
- If specific impairments (e.g., visual or auditory processing) exist, teach basic learning skills with multimodal presentations of these subjects such as auditory, visual, and kinesthetic tasks or assignments.
- Keep parents informed and use parental information as an indicator of possible problem areas.
- Remember that school problems may emerge with time, and take a preventative approach to assessment and the provision of services. It may require 1–3 years before problems are noted.
Specific Classroom Interventions
- Extend work time to complete assignments
- Provide one-to-one tutoring (perhaps as part of an IEP or 504 plan)
- Use peer tutoring (with the peer tutor following explicit guidelines from the teacher)
- Allow calculator use
- Permit untimed testing or perhaps oral tests in lieu of written exams
- Use of books on tape
- Accommodate to memory problems by using recognition (e.g., multiple choice) rather than recall; on classroom tests, emphasis understanding rather than memorization
- Consider an IEP in the category of Other Health Impairment (OHI). Research has also shown that the documented risk of early school dropout for students with leukemia and brain tumors was lessened by special education participation (see Disability Rights section for more about IEPs and OHI).