Families can learn to maintain a normal life while managing chronic conditions
By Michele Avila-Emerson, RN, CCRN, CCNS, CPNP-AC
* First published in Spring/Summer 2008
Nine-year-old Jimmy coughs frequently and his parents need to do chest percussions multiple times daily. He takes special medicines known as digestive enzymes whenever he eats. Jimmy has cystic fibrosis.
Mark, 11, has asthma so severe he has been hospitalized four times since he was a baby. He cannot go out in too-hot or too-cold weather. He always carries an inhaler.
Julie’s diabetes requires her to draw blood from her finger daily and give herself a shot. She has been admitted to the hospital three times in her life, including one recent episode that made the 13-year-old miss her eighth grade graduation.
These children all struggle with chronic illnesses and, like millions of other Americans, attempt to balance a normal lifestyle with the many demands of their diseases.
It can be very challenging for families of children who suffer from chronic illnesses and for the health care team. People wonder why advances in the health care systems do not translate into fewer illnesses. In fact, many people believe that there are more chronic illnesses than ever before, especially in childhood.
It is known that children today face diseases that previously were known to adults only, such as obesity (thought to affect 15 to 25 percent of adolescents) and diabetes type II (on the rise in children). Before advances like pediatric open-heart surgeries, children died before adult-onset complications could occur. Now, just as in adults, children with chronic diseases face problems that complicate their illnesses throughout their lives.
Because of complications and problems often called co-morbidities, parents learn about their children’s illnesses and develop key management skills to help prevent serious complications. They learn to observe and identify the "little" changes that occur each day - symptoms that sometimes can appear mild might actually suggest a bigger problem in the chronically ill child. Over time, families become better at recognizing changing symptoms, but until that happens, they may be unprepared for the frequent setbacks of a new acute illness in a child with a complex disease. This might cause the family to feel unprepared emotionally, financially and physically to address the new illnesses.
It is important for families with a child with chronic illness to know they are not alone. Other families face the same problems, and finding support is crucial. Many cities have local chapters of nationally recognized support groups, and your primary health care professional can help you get in contact with the group.
Chronic illness can have emotional costs or force families to make life changes, such as moving for a new job. Such changes can result from an effort to provide better health care coverage or to be closer to a hospital specializing in a child’s illness. In addition, stresses like a hospital admission
can change family circumstances in an instant.
Many families carry a care plan and medication list or diary to each health care professional appointment in an eff ort to help communicate their child’s complex illness to the health care team. Th is is very important, as many diff erent specialists may be involved with children with chronic illness. Parents, along with their primary health care professional, are the best source of information when health changes occur. Th ey are the coordinators who help the health care
team - including specialists - provide the most comprehensive and successful plan.
Chronic illness also has an impact on the child’s education and school. Children who are sick may miss a lot of class time and might find it difficult to keep up with assignments. Each school has its own programs to help maintain satisfactory academic performance and minimize the social impact on illness. Parents can find help through the teachers, school nurse, guidance counselor and learning directors at their child’s school. Th ere may be take-home assignments, homebound instruction and interdisciplinary care plans.
Children and families living with chronic illness struggle to keep up with the latest technologies
and treatments associated with the child’s diagnosis. Th e tools that families have at their disposal are always increasing and will undoubtably continue to grow. Families can rely on their local support group as well as their primary health care professional to help keep them up to date. Using the Internet may be helpful, but be sure to use only those sites that have an association with recognized health care agencies or organizations. Health care professionals continue to partner with families to address the long-term treatments, effects and goals for children with chronic illness.
Reminders for Parents of Children With Chronic Illnesses
- Carry a list of all medicines your child takes.
- Visit only the Internet sites that have a recognized health care background.
- Be a partner in making decisions for your child.
- Get to know your child’s teachers, and establish a plan for sick days and making up work.
- Join local support groups and meet other parents.
Michele Avila-Emerson, RN, CCRN, CCNS, CPNP-AC, of the Children’s Hospital Central California has worked with chronically ill children throughout her career.
Does your family face a chronic pediatric illness, or do you have any questions or comments about what you’ve just read? Respond to email@example.com.