What Is Chronic Illness?
A chronic illness is any medical condition that has a prolonged course and often interferes with physical and mental functioning. Chronic medical conditions may also be marked by periods of acute exacerbation that require more intensive medical attention. Examples of chronic illnesses include acquired immunodeficiency syndrome (AIDS), asthma, cancer, cerebral palsy, congenital heart disease, cystic fibrosis, hemophilia, insulin-dependent diabetes mellitus, leukemia, sickle cell disease, and spina bifida. Although chronic conditions can be life threatening, increases in medical knowledge and advances in technology have enabled many individuals with these medical disorders to live longer and lead productive lives. The presence of a chronic medical condition affects not only the individual diagnosed with the disease but the person’s entire family. Because chronic illnesses are not curable, continual medical management and adherence to treatment regimens are necessary. Frequently, it is necessary for family members and the individual to assume a great deal of responsibility for managing the illness.
What Is The Frequency of Occurrence?
It is estimated that 15% to 18% of school-aged children in the United States have a chronic medical illness or disabling condition, putting the number of children under age 18 with chronic conditions at 12 million (some examples given in Kliewer, 1997; Newacheck & Halfon, 1998).
Chronic Medical Conditions
Acquired Immunodeficiency Syndrome
AIDS is a life-threatening condition caused by the human immunodeficiency virus (HIV). HIV affects the body’s immune system and interferes with a person’s ability to fight off viruses and bacteria that cause disease. This makes the body more susceptible to opportunistic infections, such as pneumonia, meningitis, and certain types of cancers. Worldwide, an estimated 2.5 million children under the age of 15 are living with HIV. Mother-to-child transmission of HIV has accounted for approximately 91% of AIDS cases reported among children in the United States. Among adolescents, most cases of AIDS are a result of sexual contact with an infected partner or drug use with a contaminated needle. In the United States, it is estimated that two adolescents are infected with HIV each hour. Although there is no cure for AIDS, there are medications that can slow down the HIV virus and reduce the rates of opportunistic infections.
Asthma is an inflammatory disorder of the airways characterized by difficulty breathing, particularly during an asthma attack. Asthma attacks can vary from mild to life threatening and involve shortness of breath, cough, wheezing, chest pain or tightness, or a combination of these symptoms. Asthma attacks are triggered by allergies, infections like colds or bronchitis, exercise, changes in the weather (from mild to cold), and smoke. Approximately 20 million individuals in the United States have been diagnosed with asthma. Asthma can be a life-threatening disease if not properly managed. Effective medicines such as bronchodilators and anti-inflammatory agents start working within minutes and have few side effects.
The most common forms of childhood cancers include the leukemias, lymphomas, and those of the central nervous system and brain. It is estimated that 1 in every 330 children will develop cancer before age 19. Although children frequently have a more advanced stage of cancer when they are initially diagnosed and pediatric cancers are the leading cause of death by disease for children in the United States under age 15, many pediatric cancers also respond well to treatment. Recent estimates suggest that the overall 5-year survival rate is almost 75% (National Cancer Institute, 2004). Current treatment regimens are quite intense and often combine a course of surgery, radiation, and chemotherapy.
Cerebral palsy refers to a group of conditions that result when damage to the brain disrupts the brain’s ability to control movement and posture. In about 70% of cases, brain damage occurs before birth, although in a minority of cases it occurs around the time of delivery or in the first months or years of life. The condition affects approximately two to three children per 1,000 over the age of 3 years. Signs of cerebral palsy include difficulty with fine motor tasks, difficulty maintaining balance or walking, and involuntary movements. Some people with cerebral palsy are also affected by other problems that require treatment, including mental retardation, learning disabilities, seizures, and vision, hearing, and speech problems. The symptoms of cerebral palsy range from mild to severe; the disease is not progressive, and most children can significantly improve their abilities with appropriate health care and therapies.
Cystic fibrosis is a genetic disease affecting approximately 30,000 children and adults in the United States. The body produces abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food. People with cystic fibrosis have a variety of symptoms, including salty-tasting skin; persistent coughing, wheezing, or shortness of breath; excessive appetite but poor weight gain; and greasy, bulky stools. Clearing mucus from the lungs is an important part of the daily treatment regimen. The median age of survival for a person with cystic fibrosis is 33.4 years, a significant increase over earlier times.
Insulin-Dependent Diabetes Mellitus
Diabetes is a disease in which the body does not produce or properly use insulin, a hormone needed to convert sugar, starches, and other food into energy. There are two major types of diabetes. Type 1 diabetes, accounting for 5% to 10% of diabetes diagnoses, results from the body’s failure to produce insulin. Type 2 diabetes, which accounts for the remaining, results from the body’s failure to properly use insulin. Common symptoms of diabetes include frequent urination, excessive thirst, extreme hunger, unusual weight loss, increased fatigue, irritability, and blurry vision. There are 18.2 million people in the United States who have diabetes; unfortunately, nearly one third of these people are unaware that they have the disease. Diabetes management involves adhering to special dietary and exercise guidelines, as well as receiving insulin daily.
Sickle Cell Disease
Sickle cell disease affects approximately 72,000 people in the United States, mostly those of African descent. An inherited blood disorder affecting red blood cells causes them to become sickle shaped and tend to get stuck in narrow blood vessels, blocking the flow of blood. Complications include pain episodes, strokes, increased infections, leg ulcers, bone damage, yellow eyes or jaundice, lung blockage, kidney damage, blood blockage in the spleen or liver, eye damage, and delayed growth. Sickle cell disease management includes taking folic acid daily to help make new red cells, taking penicillin daily until age 6 to prevent serious infection, drinking plenty of water, avoiding extreme temperatures, and avoiding overexertion and stress.
Spina bifida, the most common neural tube defect, affects approximately 1 out of every 1,000 newborns in the United States. Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. Surgery is generally performed on the newborn. In addition to physical limitations, spina bifida can also cause bowel and bladder complications, hydrocephalus (fluid in the brain), and learning disabilities. Taking 400 µg of folic acid every day before and during early pregnancy reduces the risk of spina bifida and other neural tube defects. Most children born with spina bifida live well into adulthood as a result of sophisticated medical techniques.
Psychosocial Adjustment To Chronic Illness
Research regarding adjustment to chronic illness suggests that children and adolescents with chronically ill conditions are at some risk for psychological problems and psychosocial adjustment difficulties. However, the coping ability and adjustment of a child or adolescent with a chronic illness depends on multiple factors. Risk factors include the degree to which the illness impairs functioning, involvement of the brain, nature of the illness, and type of medical procedures and hospitalization experiences. Risk factors related to the individual include interference with non-illness-related aspects of life; family functioning; the individual characteristics and internal resources of the child; demographic variables such as age, sex, and social class; and external resources and support systems. Various interventions, including education, cognitive-behavioral strategies, social skills training, remediation and rehabilitation, and family therapy and group work, have been used successfully with children and adolescents with a chronic illness.
Recent medical and technological advances have resulted in children and adolescents with chronic medical conditions living significantly longer lives. However, the stress associated with these conditions places individuals at greater risk for psychosocial adjustment difficulties. Health care professionals and parents should recognize the risk factors related to adjustment difficulties and implement appropriate interventions.
- Kliewer, W. (1997). Children’s coping with chronic In S. A. Wolchik & I. N. Sandler (Eds.), Handbook of children’s coping: Linking theory and intervention. Issues in clinical child psychology (pp. 275–300). New York: Plenum.
- National Cancer Institute. (2004). Annual report to the nation finds cancer incidence and death rates on the decline: Survival rates show significant improvement. Retrieved from http://www.nci.nih.gov/newscenter/pressreleases/ReportNation2004release
- Newacheck, P. W., & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in American Journal of Public Health, 88, 610–617.
- Roberts, C. (2003). Handbook of pediatric psychology (3rd ed.). New York: Guilford.