Learning to Get Their Lives Back

By Dr Murallitharan M. | 13 September 2019

There seems to be no standard-of-care being practised when a child with cancer chooses to return to school.

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Atiqah (not her real name) is back at school today. She hasn’t been to school for more than 6 months and she is really nervous. Excited a little, because she hopes to see her old friends, but also very nervous for the fact that she looks so different now.

Her head still has a bandage around it and her tudung looks a little funny because of that. Her school uniform also doesn’t fit so well…. It’s too loose because she has lost so much weight since the treatment.

She comes in the class and sits down quietly in a corner. She smiles nervously at some of her friends, who don’t really look at her, preferring to mumble intelligibly between themselves.

Some others in the class even point at her and snigger at her head, bulging in weird places despite being covered by her ‘tudung’.

Then it gets worse.

A new teacher walks in, someone who she has never seen before and after taking attendance one by one, she reaches Atiqah’s name, looks up, finds her and begins shouting at her. “Why have I never seen you in class? Why haven’t you attended school for so many weeks? Have you been playing truant on purpose?

Atiqah begins crying. Later that night she tells her mother, “ I wished I had died of cancer… then I wouldn’t have to go back to school.”

Atiqah’s story is a sad but true story of more than one childhood cancer survivor in Malaysia.

September is Childhood Cancer Awareness Month, and this month we at the National Cancer Society of Malaysia would like to draw the attention of Malaysians to the issue of returning to school for children with cancer and the problems that are contained therein.

The battle with cancer is a long and difficult journey for any patient and it’s especially hard for children.

The end of the journey, however, does not mean that it is clear skies ahead. The task for returning to a ‘normal’ or what passes for a ‘new normal’  life for all patients is also highly tumultuous; and this is especially true for children.

For a child of school-going age, the school is the only other place where they can feel ‘normal’, especially since long convalescence periods at home (and at the hospital) would have already given them unpleasant memories of their home environment.1

At school, they expect to have a fun-filled, purposeful time spent learning and having fun with teachers and friends, something they look to returning back to eagerly after completion of treatment.1

For children suffering from cancer and other chronic diseases,  school is an important place which assists in their psychological recovery from the trauma of managing the disease; and it is equally important that they return to school as quickly and as seamlessly as possible in order for them to not jeopardise their academic performance as well as their social and cognitive development. 2

Is this happening in Malaysia for the 4000 odd boys and girls diagnosed with cancer in their childhood?

The National Cancer Society of Malaysia has received more than a few comments and queries on issues related to this in the past and we thus convened a focus group consisting of the parents of childhood cancer patients who stay with us at our Children’s Home of Hope, a free cancer halfway home for patients receiving treatment in Hospital Kuala Lumpur.

From the focus groups, we gained some insights into the situation of children returning to school after their cancer treatment (something which is really similar for those coming back to school after any long chronic illness as well) and here I share three of the bigger problems.

First, the Ministry of Education Malaysia has already in the past been running a ‘school-within-hospital’ in some of the larger tertiary hospitals including Hospital Kuala Lumpur. However this service often has only 1 or 2 teaching staff assigned to it with a host of children of varying ages and classes.

The teacher often has to cope by providing the most elementary teaching and learning activities more designed to occupy the sick child’s time rather than to provide any kind of meaningful bridging of their education.  In one centre, every  time the child got admitted for some weeks, she kept on even getting the same material that she had got at the previous admissions!

Second, when the chronically ill child, be it from cancer or from other chronic diseases, goes in and out of the hospital and comes periodically back to school, there is no form of formal assessment to see where he or she is within the learning continuum.

One parent shared how his child had been diagnosed with cancer in March and had left school to come back in January the following year. The school administration proceeded to push his child into the next form just based on her age; and since it was a government examination year, the child did really poorly in the government examination, languishing in lower classes for up to two years after that due to the effect of these results. 

Third, many teachers and students are reported to be unaware and often seen as being insensitive to a child coming back to school after a long spell of illness or treatment as in the case of cancer and other chronic diseases. 

As in the real-life story of Atiqah related above, many are jeered and bullied by classmates; as well as being picked on by teachers thinking that the child’s absence is somehow due to their own fault rather than being due to the illness.

One parent even shared that a teacher told his child who had leukemia, “… I don’t think you were even that sick, I know you are taking this opportunity to just ponteng school and play PSP (video games) at home.”

It’s important to note that not all these problems may be happening to all children with cancer or other chronic diseases returning to school; and I am sure that no teacher or child is acting towards their sick student/classmate with genuine malicious intent. But that’s the problem.

There seems to be no standard-of-care or a standard SOP being practised when a child with cancer or other chronic diseases chooses to return to school.

Among the focus group answers we also heard of teachers who visited these children at home and gave them extra coaching and friends who took turns to visit their classmate in hospital everyday bringing them goodies and sitting with them to do homework.

Thus, NCSM ‘s call for this Childhood Cancer Awareness Month is for everyone to be more aware of the plight of children with cancer and other chronic diseases as they come back into schools after treatment.

Stakeholders including the Ministry of Education, clinicians and parents need to come together to create, test and implement a School Re-Integration Model for children with cancer and other chronic diseases to be able to ease back into school.

Our policy brief on this issue can be found here.

Bringing back a child to school after a long spell of illness, be it from cancer or other chronic illness is critical for many reasons.3

Chief among this is that it helps the child to normalise back and begin their psychological healing.3,4 But equally important is that if due to his or her illness, their education never returns on track and with it the promise of a bright future, that’s another crippling cost to blame cancer for.3,4  

We can do something about this though. Will we?   

REFERENCES

1.     Chekryn J, Deegan M, Normalizing the return to school of the child with cancer. Journal of the Association of Pediatric Oncology Nurses 1986; 3:20-24

2.     Georgiadi M, Kourkoutas E, Supporting pupils with cancer on their return to school: a case study report of a reintegration program. Procedia Social and Behavioural Sciences 2010; 5

3.      Schultz KA, Ness KK, Whitton J, Recklitis C, Zebrack B, Robison LL, Zeltzer L, Mertens AC. Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology 2007; 25

4. Thompson AL, Christiansen HL, Elam M et al. Academic continuity and school reentry support as a standard of care in pediatric ongology. Pediatr. Blood Cancer 2015; 62

Cancer Matters is a column on various issues related to cancer in Malaysia.

Dr Murallitharan M. is the Medical Director of the National Cancer Society of Malaysia (NCSM). He can be reached via email at muralli@cancer.org.my

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