By Nicole Boik, MS, CCLS
School is an integral part of life for children and adolescents, so, naturally, it's often a concern when a child is diagnosed with cancer. Most pediatric oncology treatment facilities recognize and understand this, but not all provide resources or support to families grappling with what to do about school. Some children with cancer are able to continue going to school part-time during treatment, but others are not. As a parent, it can be difficult to navigate school-related decisions, particularly when you're not offered much guidance. Despite the difficulties, school should be a priority as it can be a much-needed respite and help children overcome emotional difficulties while in treatment (Chekryn, Deegan, & Reid, 1986; Lansky, Cairns, & Zwartjes, 1983).
Some children are able to continue going to school part-time during their treatment, while others complete school virtually (often called Hospital Homebound) or participate in a homeschool program during their treatment and only return to school once their treatment is done. Each of these scenarlos presents unique challenges and has different needs for the child's integration into school to be successful. We've broken down each scenario to provide parents and caregivers some tangible steps they can take to ensure their child has a positive school experience.
Children Currently in Treatment and Attending School
Navigating school while in treatment can be challenging, and it may even feel like too much to parents just trying to manage everything else on their plate. However, it is so worth it. Research shows that attending school during treatment can reduce the negative social and academic effects for the child (Shields, Heron, Rubenstein, & Katz, 1995).
Whether your child has been newly diagnosed with cancer or they are reaching a time in their treatment where it's safe to return to school [and have the permission to attend school from their oncologist], it's best to have a family conversation about it and make a plan to approach the school as soon as possible. During this sort of planning phase, parents and their child should discuss things like frequent absences, school work expectations, staying connected when not able to be in school, and dealing with medical needs during school hours. However, perhaps the most important part of these conversations, is going to be discussing how the diagnosis and treatment should be discussed with school staff and peers because this is what is going to ensure that your child, their peers, and school teachers and staff are comfortable with the situation. It's important to note here that the child should have a full understanding of their diagnosis and treatment because you wouldn't want them to get that information from their teacher or peers on accident. It's also important to include siblings in this conversation as they will likely have peers and teachers with questions, as well, especially if they attend the same school as the child with cancer.After having these conversations at home and making some decisions about what to say to others, these conversations need to happen all over again with the school. If the sibling attends a different school, their school likely does not need all of the information, but they should be informed of what's happening at home. Taking the time to discuss these topics up front will help ensure that everyone involved is prepared for the child to go to school and has appropriate expectations of what that will look like.
When a child is in school during treatment, everyone involved has to be prepared for the child to change or be different than how they were before. This is also something that will likely need to be discussed as the child goes through treatment-related bodily changes or experiences various side effects of treatment. They are still the same person, but, while in treatment, their appearance may change, they may not have as much energy, their physical abilities may be limited, they make go through periods of time where they vomit at random times, they may get fevers easily during some phases of treatment, etc. Peers and school staff need to be almost as prepared and understanding of these changes as the child does in order to ensure that everyone is comfortable and they know what to do if the child needs medical attention while at school. If a sibling attends the same school, the plan for what to do if the child with cancer needs medical attention should include the sibling. Some siblings may want to immediately be pulled out of their classroom while others may not want to hear about it until the end of the school day; whichever they prefer should be supported and validated as siblings cope in many different ways often dependent on their personality.
There are some special considerations depending on how old the child or adolescent is and, if applicable, the age of the sibling. For preschoolers and young elementary-age children, helping them understand the diagnosis using developmentally appropriate language is important. When children this age go to school, it's important to consider that the child's classmates and peers may have no understanding of cancer and, as a result, have fears based on misconceptions or lack of understanding. For example, it's important for them to understand that no one caused the cancer and they can't catch cancer like they do the common cold. For older elementary-age children, middle schoolers, and teens, there should be more emphasis on their wishes for telling people about their diagnosis and treatment and bodily changes and body image should be discussed at various points throughout treatment. Also for these age groups, parents must keep in mind that peer relationships can be just as vital to their development as school work, so opportunities for peer interaction should be offered as often as possible whether the child or teen is attending school or not.
Returning to School Following the Completion of Treatment
Some children with cancer are unable to attend school during treatment for a variety of reasons. Although we encourage children to attend school during treatment if possible, waiting to return to school until after treatment is completed does have some advantages. Similar conversations as mentioned previously need to happen within the family and then with the school, but topics like frequent absences during school and medical needs during school hours are likely not going to be as vital to discuss. The important conversation about what to tell school staff and peers is still just as important; however, since treatment is done, it's often easier for children and adolescents to pick and choose what to say because, physically, they likely don't look sick anymore, even if they look different (such as hair, skin tone, scars, etc.). Parents should encourage their children not to lie to their peers, but a child leaving parts of the story out, or even embellishing the story a bit, is perfectly fine.
When a child is absent from school for an extended period of time, there tends to be some discomfort or disconnect with peers, in addition to some anxiety or fear around returning to school and what that will be like (Prevatt, Heffer, & Lowe, 2000). This may also apply to siblings if they were kept out of school for some reason during their brother or sister's treatment journey. Friends may have become increasingly distant during the absence. The child may not be old enough for a cellphone or social media, so they weren't able to connect with their peers much during the absence. They didn't feel good about their social status prior to their diagnosis, so they're anxious about returning. Regardless of the reason, it's important for parents to check-in with their child as they reintegrate back into school, not just from an academic perspective, but also from a peer and social perspective. The last thing anyone wants is for the child to return to school and feel as though they are different or weird and/or have no friends. It may be difficult to address these topics directly with the child, so this is another time when having teachers and school staff in the loop can help.
About Nicole Boik
Nicole Boik has been a Child Life Specialist for almost 4 years, majority of which was spent working in radiation oncology. Since leaving that position, I have taken on a number of new projects, but I continue to have a heart for children with cancer and their families.
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Chekryn, J., Deegan, M., & Reid, J. (1986). Normalizing the return to school of the child with cancer. Journal of Pediatric Oncology Nursing, 3(2): 20-24.
Lansky, S., Cairns, N., & Zwartjes, W. (1983). School attendance among children with cancer: A report from two centers. Journal of Psychosocial Oncology, 1(2), 75–82.
Prevatt, F., Heffer, R., & Lowe, P. (2000). A review of school reintegration programs for children with cancer. Journal of School Psychology, 38(5): 447-467.