Association of Pediatric 
Hematology Oncology 
Educational Specialists

Practice Recommendations

for Managing the Educational Needs of

Pediatric Hematology and Oncology Patients

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The following questions guided the development of the APHOES Practice Recommendations:

1. Do children with certain types of cancer or chronic hematologic disorders have a risk of developing educational problems?

2. What factors increase the risk of educational problems in children diagnosed with cancer or chronic hematologic disorders?

3. How can school intervention programs address the educational needs of children diagnosed with cancer or chronic hematologic disorders?

4. What type of learning problems or cognitive effects can develop in children diagnosed with cancer or chronic hematologic disorders?

5. What types of assessments, monitoring and interventions are recommended?

6. How can school intervention programs assist families and school personnel during palliative and bereavement care?

Key APHOES Practice Recommendations (Full Text available below):

1.The need for school support begins at diagnosis. As soon as possible, a single professional based in the hospital should be designated as the school liaison for each child diagnosed with cancer or a chronic hematologic disorder.

2. Soon after diagnosis, the liaison working with the child, family and school staff should create an academic plan.

3. Clear, on-going communication between the liaison, child, parents and teachers is essential. In particular, a meeting should be considered upon the child’s return to school, at the beginning of an academic year and/or when the child transitions to a new school.

4. School attendance is encouraged as soon as it is medically safe and appropriate. Factors such as infection risk due to neutropenia, safety of external central lines and mobility should be balanced against the improvements in quality of life associated with school participation.

5. Factors to be considered when assessing a child’s ability to attend school relate to the child’s condition and treatment. Assess psychosocial readiness, pain level, degree of fatigue, strength and, for a student with cancer, the degree of bone marrow suppression. Consider the type of treatment, duration and frequency.

6. Children at risk for educational difficulties because of their illness and/or treatment should be identified, assessed and monitored. Risk factors to consider include: diagnosis, treatment, age, gender, functioning, family history, impairments, chronic illness, barriers to services, prolonged interruption in academic instruction and/or a difficult transition back to school.

7. A meeting including the liaison and/or others from the medical team, student and family should occur prior to the student’s return to school to discuss the family’s concerns, fears and expectations, and to plan for and facilitate the student’s smooth transition back into the classroom. If a meeting involving all of these parties is not feasible due to distance between the hospital and school or other factors, the liaison and medical team should provide consultation on these issues to the family and school via telephone or video-conferencing.

8. If feasible, a classroom presentation should be made prior to the child’s school re-entry, particularly for children in the elementary grades. Otherwise, the liaison should work with the teacher and school nurse to determine alternative methods to prepare and educate classmates.

9. Children’s academic progress and psychosocial adjustment should be monitored annually for as long as they are attending school. Students whose disease and/or treatment place them at-risk for neurocognitive late effects should receive periodic neurocognitive testing as part of their long-term care.

10. In the event that a child with cancer or chronic hematologic disorder transitions to palliative care, a plan should be developed to accommodate the child’s desire to remain connected with classmates and maintain participation in school during this time. The plan should address the child’s needs as well as the impact on classmates and faculty as the child withdraws from school involvement as the end of life nears. Planning should include input from the child, parents, educational liaison on the medical team, medical professionals, and school faculty (teachers, school nurse, and psychologist/social worker).

11. Resources should be made available (e.g. educational materials, support group services) to school faculty, students and families during the child’s palliative care as well as after the child has died.

 

The APHOES Practice Recommendations for Managing the Educational Needs of Pediatric Hematology and Oncology Patients, Version 1.0 was issued in 2011 and updated to Version 2.0 in 2013.  Version 3.0, formatted for electronic readers and digital distribution, was released in 2015.  The APHOES Editorial Committee will review the Recommendations every two years to determine need for updates. Updates prior to the review process will be noted below. We suggest that professionals check this website regularly for the latest revisions and updates. 

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