Practice Recommendations - Managing the Educational Needs of Pediatric Hematology & Oncology Patients

Chapter 1

Mapping the Course:
Introduction to School Intervention Programs

The Charge - School for All

In the United States alone, each school day 46 children are diagnosed with cancer, over 12,000 children annually. The 5-year survival rate for all childhood cancers combined has increased to approximately 80% (Ries et al., 2004). As the number of childhood cancer survivors continues to increase, so does the number of pediatric cancer patients and survivors attending schools. Moreover, as medical care improves the functioning and quality of life for children living with chronic blood disorders, such as sickle cell disease, aplastic anemia, and Gaucher Disease1, more of these patients are able to participate regularly in school activities and rigorous academic pursuits than ever before. Thus, it is imperative that pediatric hematology-oncology medical teams, hospital administrators, and community-based educators across the country increase their coordinated efforts to understand the implications of these diseases on students’ lives and to develop programs in hospitals and in schools to maintain these students’ educational progress despite the challenges presented by their medical histories. A free and appropriate education is the right of all children in the United States.

School is the central arena for academic and social development throughout childhood and adolescence. By participating in school activities and acquiring new academic skills, children and teens have opportunities to feel accomplished, develop friendships, and prepare themselves to be productive members of the adult world. For children with life-threatening medical conditions, participating in school is doubly important. In addition to the benefits described above for all students, school involvement provides children with life-threatening health conditions a sense of normalcy in the midst of their very abnormal medical circumstances. School offers them a sense of hope about the possibilities for their future. Thus, it is imperative that children and teens, regardless of their medical histories and current health circumstances, are provided with meaningful opportunities to participate as fully as possible in school communities and academic pursuits.

Challenges for Patients, Parents, and Teachers

This charge, of course, is much easier said than done. Attending school, maintaining connections with classmates and teachers, and continuing to develop academic skills while being treated for cancer or a chronic hematologic disorder are all difficult to do. Students in these circumstances struggle to overcome the many obstacles and hurdles presented by their medical conditions, and their parents and teachers struggle to help them negotiate these challenges to their school involvement. In the case of pediatric cancers, the challenges to school participation include months or years of medical treatment that are often necessary for cure. Students with cancer typically miss several months of school during the most intensive phases of treatment, and many cancer patients subsequently have a prolonged period of milder “maintenance” therapy when they intermittently attend school. Students with chronic blood disorders also have high rates of school absenteeism due to repeated symptom flare-ups and/or infections that require hospitalizations or intensive home care. Aside from frequent and/or prolonged school absences, other physical factors that disrupt learning and school participation for pediatric hematology-oncology patients include: fatigue, pain, nausea, newly acquired physical disabilities (as in the case of a recent amputation or limb salvage surgery), newly acquired cognitive impairment as a result of neurotoxic treatment, or a neurological complication such as a stroke or an intracranial bleed, and/or newly acquired hearing or visual impairments. Cancer patients and hematology patients also struggle to cope with the psychosocial implications of their medical conditions. Feelings of sadness, anxiety, self-consciousness about illness-related physical changes and isolation from peers can cause students to avoid school events and social activities.

Parents of students with cancer or chronic blood disorders are often at a loss for how to help their children stay connected and remain academically productive during periods of extended and/or intensive medical care. In the midst of a medical crisis, it is difficult for parents to prioritize their child’s educational needs when so much medical attention is necessary and they are wrestling with their own fears and worries about their child. Moreover, parents are often overwhelmed with the demands of their child’s medical care and learning to navigate the complex medical world. Parents’ time, attention, energy, and financial resources are typically spread too thin between their sick child’s medical care, care for their other children, home care, and work responsibilities. Additionally, when it comes to advocating for an ill child’s educational needs, many parents are limited by a lack of knowledge about their child’s educational rights, the laws established to ensure their child an appropriate education, and how to effectively navigate the educational system.

Concurrently, teachers and school administrators, who want to be helpful to families in medical crisis, are often at a loss too. They lack the medical expertise to anticipate the likely impact of cancer or a hematologic disorder on the child’s school participation and educational needs. Teachers do not want to burden families in medical crisis with school concerns; yet, they often are the first to observe a child’s lack of academic progress, increasing social withdrawal, or behavioral regression in the classroom. Other factors complicating teachers’ and administrators’ contributions to educational planning for students with cancer and hematological disorders include their own personal experiences with serious illness and the expectations borne out of these experiences. For instance, without realizing it, a teacher who has lost a family member to cancer may distance himself somewhat from a seriously ill student and her parents as a protection from experiencing a sense of loss again. The resources available in a particular school district may also limit educational planning for students. Teachers’ and administrators’ uncertainty and frustration about the limits of what can be offered to students with significant illness can complicate collaborative planning efforts between students, parents, school staff and the medical team.

Initial Response to the Challenges - School Intervention Programs

In short, maintaining students’ education in the face of serious medical illness such as cancer or a chronic hematologic disorder is a daunting, complicated task for all parties involved. As advances in medical supportive care have enabled more children to return to the classroom during treatment, pediatric centers have responded by offering school support services of one kind or another to their patients. The kind of school support services offered varies tremendously from one medical institution to another. Some institutions have developed formalized school support programs with staff dedicated to only this kind of patient care. Other institutions have folded school support services informally into pre-existing medical staff job descriptions; that is, nurses, social workers, or child life specialists address school issues with patients as time allows in the context of other primary job responsibilities in the medical center.

School intervention programs across pediatric centers also vary significantly in the kinds of services they provide. Some pediatric hematology-oncology clinics offer school support services beginning at diagnosis, providing community-based schools with information right away about a child’s newly diagnosed medical condition and its expected impact on school attendance and participation. However, more commonly, pediatric hematology-oncology clinics offer “school re-entry” services. The purpose of school re-entry services is to facilitate patients’ re-integration into the classroom after prolonged absences due to treatment. These school re-entry services generally include a classroom visit by a member of the medical team to explain the patient’s illness in developmentally appropriate terms and provide his/her peers with suggestions for how to emotionally support their returning classmate. School re-entry services may also include a meeting attended by the returning student’s parents, teachers, school administrators, and members of the hospital medical team or school support team. The general purpose of such a meeting is to provide the school with needed information about the child’s medical condition and collaboratively develop an initial educational plan for the returning student.

With the increasing focus on cancer survivorship in recent years, some pediatric institutions have focused not on school re-entry, but rather school assistance for youth in the years following completion of treatment for cancer. One purpose of these school support services is to educate schools about the long-term or “late effects” of cancer treatment. There is well-established research demonstrating that certain types of cancer treatment put youth at risk for deficits in learning and memory. These deficits may emerge years after treatment has ended, and if unrecognized can precipitate a downward spiral of school failure and hopelessness in students. School support services for cancer survivors generally include a...