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Text to World Connection: Children with Chronic Disease

Updated: Jan 20, 2021

In Chapter 4 of Don’t Bring Me Bad News, Lee recognizes changes in his body:


I hobbled my way to the cafeteria. Man, that medicine Dr. Okafor had told me to take didn’t work. We had been going to Dr. Okafor our whole lives. Every summer we had a checkup, but my last checkup before this school year was different.

‘Lee looks like you’re having some growing pains, but we will keep an eye on this,’ Dr. Okafor had said. He wrote a note to Mama: ‘Mrs. Hughes, give ordinary pain medicine to Lee only when he needs it. I want to see him in about six months. Call me if anything changes.’

I wondered that day in school if I might have to ask Mama to call Dr. Okafor, but I hoped I could just snap out of whatever it was. I just didn’t want any bad news. Ugh!

(page 35)


This quote shows Lee coping with unusual aches and pains as he tries to continue his normal activities at school. From the quote you can tell there are several things on this 5th grader’s mind other than academics. Lee thinks about whether or not his medicine will work, directions the doctor gave his parents about his condition, and if he will be able to endure a day at school like his healthy peers. How Lee and his family experience his health challenge is a major part of the plot in Don’t Bring Me Bad News.

Along with their school supplies, academic workload and social activities, many children carry with them the “bad news” of a life changing medical diagnosis. Even when these children are in the most supportive families, the reality of living with pain and disease is never easy for them or the people who love them.

My Connection

As an author, it was important for me to honor the courage of suffering children by having a character with a chronic medical condition. As a preteen I remember being afraid when one of my cousins battled Leukemia as a toddler. I was young, but I still remember hearing about the spinal taps and the treatments and seeing the ports on her little chest and the hair loss. The feelings of fear were overshadowed by relief at her remission.


Then in my early 20s my younger brother experienced a late onset of juvenile idiopathic arthritis when he was 18. Many days he sat near 7 or 8 year old patients or heard crying babies in the children’s hospital where he spent hours receiving medicinal infusions. After two hip replacements, 14 years of medication and doctors’ appointments, and several lifestyle changes he is still confronting this diagnosis.

The Bigger Picture

In 2010 a nationally representative longitudinal study of 3 cohorts of children showed

that the prevalence of chronic conditions among children and youth increased from 1988 to 2006 (Van Cleave et al.). According to a longitudinal, retrospective study, autoimmune disease prevalence in children doubled from 10.4% in 2010 to 20.8% in 2018 (Melillo). The Centers for Disease Control and Prevention report that in the United States approximately 25% of children between 2 and 8 years old have a chronic disease (Van Cleave et al.) and about 6% of children have multiple chronic conditions (Rezaee and Pollock).


Nature of Diseases

The serious nature of many pediatric chronic diseases like juvenile idiopathic arthritis affect several aspects of the child’s life.


Physical Activity

A 2019 narrative review published in BMC Pediatrics examined 5 common pediatric chronic diseases: respiratory, congenital heart, metabolic, systemic inflammatory/autoimmune, and cancer and found that exercise intolerance is prevalent among pediatric chronic disease (West et al.) Although exercise has several health benefits, many children with chronic conditions are not able to participate in the minimum 60 minutes of moderate to vigorous physical activity as suggested by international guidelines (West et al.). This leaves many parents without exercise considerations specific to their child’s needs. For those who are interested, the narrative review also gives practical applications for exercise for the 5 common pediatric chronic conditions mentioned above (West et al.).


Family Life

When a child is diagnosed with a chronic disease, the lifestyle of the entire family may alter. A family may have to change work schedules, financial budgets, social life, and diet to accommodate the diagnosis, treatment and prognosis of a disease. Parents may need and benefit from psychological interventions to cope with a child’s diagnosis (Eccleston et al.). Siblings of diagnosed children often need support as well (Long et al.). Research shows that families who have older children at diagnosis, fewer children in the home, and lower household income are also significantly more likely to have poor family functioning, which is a major factor in quality of life (Herzer et al.). So the quality of life for children diagnosed with a chronic disease is threatened by the health condition as well as the toll it could take on their family life.


Challenge

I think it’s important that children who have been affected by a chronic disease are represented in juvenile literature. Don’t Bring Me Bad News and the subsequent stories in The Kiojah and Lee Book Series will provide opportunities for children to discuss childhood disease. I hope that children who have a medical diagnosis will be able to connect with Lee’s character. I want the stories to initiate conversation about childhood disease. I also hope Lee’s experiences will further encourage children to be empathetic with their peers and appreciate the blessing of good health. I want to challenge you to talk to children about health and health challenges so they can have an emotional outlet if they are affected or know how to empathize with another child who is suffering.


Invitation

What do you think about this? Please share with me anything your children or students are doing to support children who have been diagnosed with chronic conditions. I’d love to hear from you.



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