As early as possible, the child’s treatment team should obtain parental consent to assign a school liaison. The liaison should be a professional who can work with parents as an advocate for the child and serve as a bridge between the hospital and school personnel.^16,21 As mentioned previously, Moore et al.¹⁸ describe one barrier to school reentry as being confusion regarding professional roles. Having a designated liaison should decrease this confusion and open the pathway for a smoother school reentry process. The school liaison should contact the child’s school to discuss the child’s diagnosis and initial absence from school. The liaison may also use this opportunity to discuss any pertinent premorbid history, such as scholastic achievement, peer acceptance, and general social adjustment in the school environment as well as the parents’ history of supporting the child’s achievement in school, their cooperation, and their attitude toward school personnel.¹⁶ This 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 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.^6,8 As the reentry process proceeds, the liaison will continue to act as a coordinator to
bring appropriate personnel and information together. This is very important because one predictor of successful school reentry is the ability of all parties involved to have questions answered and information available; in other words, a very open line of communication. This was most recently reinforced in the study done by Bruce, Newcombe, and Chapman described earlier in the chapter.¹⁶ Other predictors of successful school reentry include the child’s participation in some form of alternative education while away from school and continued communication with peers/classmates while away from school.

Early in the treatment process, the child’s physician should discuss the importance of returning to school and other normal activities and give parents a clear timeline, if possible, to think about reentry. 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.⁸ Although many parents and patients are eager to discuss school reentry, some parents are more reticent about sending their child back to school because of anxiety about infection or potential peer rejection. Some parents also become emotionally enmeshed with their child during illness, and both parent and child experience separation anxiety.

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 about school reentry.

It is very important that children have some type of alternative educational services while they are unable to attend school. 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.⁸ 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 normal and productive activity. Also, appropriate homebound or hospital-bound education serves to decrease anxiety and hesitation about school reentry. Sometimes, school system personnel tell parents not to worry about school but rather concentrate on the health of the child and worry about catching up later. This advice is not usually helpful and can cause a child to repeat a grade as retention is still one solution school systems use to deal with absenteeism due to cancer treatments.¹¹

Several options are available for the continuation of children’s education during hospitalization or confinement at home because of immunosuppression or other side effects of treatment.

For traditional homebound services to be approved, the physician may 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 get the form or letter signed by the physician and back to school personnel. Teachers of hospital- or homebound students should use books and assignments from the child’s home community school and will probably meet with children for two to four sessions per week. During this time, students probably will not be able to complete every assignment for every class. This is especially true for adolescents who may have several difficult subjects. The assignments should be prioritized for the students so that the teachers only communicate what is essential to complete.

Due to the limited nature of the sessions, self-discipline on the part of these children and support from the parents are needed if children are to keep up with assignments. Parental assistance and additional instruction may be required to supplement the limited number of school-provided hours. Basic skills development is of utmost importance for younger children, and building foundation skills in mathematics and reading is vital.^5,8 Respondents in Bessell’s study indicated much frustration in negotiating with the school system in getting homebound services started as well as with the quantity and quality of homebound services. They specifically reported problems with the homebound teacher communicating with the classroom teacher, knowing what was happening in the classroom and/or having appropriate materials from the classroom teacher. They also reported that the quality of instruction was poor and did not meet the needs of special education or advanced placement students.¹¹ In a small study done by Searle, Askins, and Bleyer, homebound, hospital-bound, and community school services for adolescents during treatment were compared. Results revealed that homebound services were the least favorable option of the three, but would work best for the adolescent who was an excellent student and taking part in many extracurricular activities prior to diagnosis. Students who had academic problems prior to diagnosis may benefit more from hospital-bound school or as much school attendance as possible.²³ A combination of school attendance and hospital- or homebound services when the child cannot attend school may work well.^11,24 The school liaison should work with parents and their children’s school system to find the most appropriate method and resources for continuing their children’s education and to design a plan whereby patients receive appropriate credit for work completed. In helping parents with decisions about continued instruction, health, social/emotional, and academic factors need to be considered.²⁴

The child or adolescent may not return to school for several weeks to several months, so it may not be best to wait until the reentry presentation to give information to classmates. When children are absent from school for a period, 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 spread. Classmates may overhear 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 the child’s isolation from peers. Other children in the class may become worried about their own physical symptoms such as headaches and other body aches. They need to be reassured that cancer is a rare diagnosis and every child has illnesses not related to cancer.

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 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,²⁵ and Educating the Child with Cancer, edited by Ruth Hoffman.²³ These booklets can provide the teacher with 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 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 close in age and may attend the same school. Other resources for the school presentation will be presented later in the chapter.

At this point we should mention issues with HIPAA (Health Insurance Portability and Accountability Act of 1996) and communication of medical information to school personnel and classmates. Certainly, HIPAA rules apply in the release of medical information to teachers and classmates. This should never be done without the parents’ and patient’s permission. School personnel will need to be reminded of HIPAA as there is laxity in some schools in discussion of these issues in common areas such as the school office where students and other adults can hear.

Classmates should be encouraged to communicate with the child in the hospital or at home. Keeping in contact with classmates will give a child with cancer a sense that they remain a part of the classroom, and are not forgotten by peers. Children undergoing treatment for cancer have noted that continuing support from their friends and school throughout their hospital stay greatly improved their confidence in re-entering school and reduced anxiety about peer rejection.⁸ This is another area where modern technology can be a great tool. In Ellis’ study about the use of videoteleconferencing between the child with cancer and classroom, it was revealed that videoteleconferencing over the course of treatment can help classmates to adjust to the physical changes in the child over time and can lead to increased empathy. Social networking using Facebook may also help keep the child connected to friends and peers throughout treatment. Other more traditional ways for peers to communicate and keep in contact are email, cards, phone calls, and, if possible, personal visits.²²

In the section on stratification of disability levels, we present a schema 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. 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 or acute lymphocytic leukemia (ALL), for which central nervous system (CNS)-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.²⁶ In the case of slow-growing tumors, 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 who receive CNS-directed therapies, including certain chemotherapeutic agents and radiation therapy, are at significant risk for delayed emergence of cognitive problems.^27,28 Although global declines on measures of intellectual functioning and academic achievement are most commonly reported,^26,28,29 more recent findings suggest that attention, working memory, and processing speed deficits may be underlying causes for these declines.^30,31 These emerging areas of deficit are informative, as nearly half of age-related improvements in intellectual functioning can be attributed to developmental improvements in working memory and processing speed.³² Risk factors associated with cognitive declines include younger age at treatment, longer time since treatment, female gender, higher treatment intensity (e.g., radiation dose), and complicating medical factors (e.g., hydrocephalus, meningitis, or posterior fossa syndrome).^26,28,33 Health care providers are working to reduce treatment-related cognitive effects, while still maintaining a high survival rate, through use of risk-adapted therapies that save the most aggressive therapies for children with the poorest prognostic indicators (e.g., radiation therapy for relapsed vs. initially presenting ALL)²⁹ and use of therapeutic approaches that reduce treatment intensity (e.g., conformal or proton beam radiation rather than cranial spinal radiation therapy for localized brain tumors).^34,35,36 Efforts to date suggest that these treatment advances have successfully reduced cognitive late effects; yet, for many of these children, there continue to be deficits that will require interventions and accommodations.^29,35,37 Children with other malignancies may have impairments such as limb amputation, hearing loss, or visual impairment. 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 assessment of their neuropsychological functioning. This monitoring is most important for children who receive CNS-directed therapies, such as those who have ALL or brain tumors.²⁸ Repeated assessment will be essential for the detection of emerging treatment-related disabilities that may not be seen for several years after treatment. Close monitoring of cancer survivors is a necessity as they are moving targets with respect to cognitive abilities because of late emerging cognitive problems as well as changes in teacher expectations with increasing age that may reveal previously existing problems. Results from current neuropsychological assessments allow for the development of targeted, individualized, educational recommendations that can assist in optimizing academic performance.