Caring for a child with a chronic illness can be challenging for the whole family. Dr. Kathryn Eckert details ways to help your child and family thrive.
By Kathryn Eckert, MD, Pediatric Endocrinology, Renown Health
When a child is chronically ill, it can be overwhelming for the entire family. But I’m here to tell you that your family and child can thrive in the face of chronic health issues.
A chronic illness, disease or condition is one that persists at least three months or longer. Approximately 15-18 percent of children in the U.S. suffer from chronic illness, with asthma the most common followed by diabetes — Types 1 and 2.
Chronic Illness in Children
The way in which a chronic illness affects a child’s quality of life depends on the type and severity of illness as well as any adverse effects from treatments:
- If the child spends a significant amount of time in the hospital or has frequent medical visits, school absences may impede educational progress and social relationships.
- Medications may have significant side effects including nausea, vomiting, headaches, abdominal pain and loss of appetite.
- The illness and treatments may result in significant fatigue and cause the child to withdraw from social activities and family interactions.
- Painful treatments and procedures may cause children to fear medical visits and blame parents for the discomfort.
- Relationships with siblings and other family members may become stressed or disrupted. Healthy and ill children may develop resentment, jealousy or anger towards each other.
Indeed, the entire family can feel the effects. Frequent medical visits and hospitalizations can disrupt the family’s schedule, school and attendance, as well as quality family time. Medical costs can take a toll on the family’s financial situation. Other children in the family may feel neglected as more attention is directed to the chronically ill child.
Helping the Family Adjust
But parents can do a lot to mitigate inherent challenges and help their child and the entire family adjust to and cope with chronic illness, including:
• Explain to your child their illness in age-appropriate terms, what treatments they must undergo, when appointments will occur and what those treatments entail.
• Involve your child in decisions when appropriate and allow them to express their anger or distrust.
• Support groups for older children may also be helpful.
Summer camps throughout the U.S. are designed for children with asthma, diabetes, sickle cell disease or cancer. These camps offer patients independence, an opportunity to learn more about their disease, and a rare chance to experience normalcy and inclusion with other children who have the illness. And the rest of the family gets a little respite from the day-to-day management of the disease while the child is at camp.
In many areas family camps are offered as well in which parents and siblings can attend the camp and learn about the disease and how best to manage it.
Here are some other ways parents can help the whole family:
• Openly communicate about the child’s disease with the whole family to help decrease stress and frustration while providing much-needed support.
• Accept assistance from close friends and extended family members, including help with other children.
• Find support groups in the community or online.
• Ongoing counseling is highly recommended for the patient and family and may be available through the facility where the child is being treated or through faith-based groups.
Keeping the family’s routine as normal as possible and allowing the other children to maintain their school schedules, activities and friends is critical so they do not feel left out or start to harbor feelings of resentment toward the child with the illness.
This article also appeared in the Oct. 29 Health Source in the Reno Gazette-Journal.