Health support team critical for children with chronic illnesses
Back to school is typically an exciting time for both parents and children, but there are some families who dread it more than they happily anticipate it – families with chronically ill children.
Between 15-18 percent of children have a chronic condition, which is de ned as a condition that affects a child’s normal activities and may require hospitalizations, home health care or extensive medical care. Asthma, diabetes and epilepsy are some of the more common chronic conditions children experience, along with obesity, ADHD/ADD and dyslexia. Other conditions include sickle cell anemia, cystic brosis, cerebral palsy, congenital heart problems and cancer.
Dr. Joseph Bocchini, chairman of the department of pediatrics and medical director of the LSU Shreveport Children’s Hospital, has worked at Louisiana State University for 35 years. “The biggest challenge for chronically ill children at school is adjusting to the new environment and circumstances,” Bocchini said. “Depending on the condition the child has, activities or interactions may be different than other children.”
Because of the sensitivity of these differences for the child, good communication between the parents and the school is crucial, Bocchini said.
“To the extent allowed by the child’s doctors, parents should help the child to participate in school or other activities,” he said.
“As the child gets older, teach coping skills. Encourage friendships. After the school year begins, keep in contact with the school to determine the effect that school is having on the child so that any necessary adjustments to the classroom or other activities can be made early to prevent problems from developing.”
Parents should also take care to meet with school of cials before the start of the school year to inform the school that the child has a chronic health condition. “School of- cials need to be made aware of the child’s special needs, the medicines or procedures, which may be routinely needed during the school day, and any special dietary needs,” Bocchini said.
Bocchini also said the school should be made aware of any activity restrictions and special precautions. “Emergency plans and procedures and the name of the patient’s primary care physician are also necessary,” Bocchini said. “The school should also be given necessary contact numbers, and parents should remember that transportation issues may need to be resolved.”
While parents should be cautious in these situations at school, they shouldn’t live in fear for their child’s safety. Bocchini believes schools are now very well-prepared to handle chronically ill children.
“Each parish school board has policies and procedures in place for management of chronically ill children and children with special care needs,” Bocchini said. “For example, in Caddo Parish, parents can work with the school nursing staff to develop care plans for students with medical conditions. Nurses are available to help with pupil appraisals. Schools also now have policies for medication administration.”
Angela Nix Riser, professional school counselor at North DeSoto Middle School for 10 years, cares deeply about the children she works with and couldn’t agree more. “I believe that as children grow up, their ability to understand information and assume responsibility for their own care increases,” Riser said. “Stress is a part of life. It motivates us to be successful, but it can also interfere with life’s joys and accomplishments. Children with chronic illnesses deal with more stress than others because they have to constantly deal with an imperfect body, experience frequent doctor visits, painful injections, surgery or even premature death. It affects them emotionally, socially, as well as physically.”
Riser’s advice for parents dealing with these dif cult and often frustrating situations is to simply listen to their child. “It’s helpful for children to express their emotions. They should feel that they can share their thoughts and fears,” Riser said. She encourages parents to be available and supportive. “I believe it’s important for chronically ill kids to feel as ‘normal’ as possible.”
She also agrees with Bocchini on making sure the school administration is informed of the illness and is given suggestions from the family on how to deal with it.
“Knowledge is empowering,” Riser said.
Not just for the parents but more importantly for the children.
– Betsy St. Amant
