More than thirty percent of adolescents, according to a survey conducted by Newacheck and McManus, have one or more chronic conditions. For individuals between the ages of ten and seventeen years, the following are the frequencies of certain conditions:
Chronic Condition Rate per Thousand Individuals
And if one counts obesity as a chronic illness, then according to the National Health and Nutrition Examination Survey (NHANES III) more than twenty percent of adolescents in the United States are obese. This is an increase of thirty percent since 1980.
The same survey found that approximately two million young people with a chronic medical condition had some limitation in their daily activity. This accounted for 6.2 percent of the adolescents who were not institutionalized. Chronic illness is no more prevalent among adolescents living at or below the poverty line compared to those living above the poverty line. The chance of having a chronic illness was found also to be equally prevalent between younger and older teens as well as males and females. Interestingly, the survey found more reports of chronic physical conditions among adolescents who lived in the western part of the United States.
Advances in the care of infants and children have made it possible for infants and children with once fatal illnesses to survive into adolescence. With the advent of neonatal intensive care units that now save very low weight babies, aggressive treatment for children with cystic fibrosis and of course treatment protocols for leukemia, these children now are surviving into adolescence. Some however show manifestations of their illness or have disabling conditions.
Teens with chronic illness may struggle with their body image especially for those where there is a visible deformity or limitation in activity. This is especially important when the teen wishes to fit in with his or her peer group. And for those teens who are obese, athletics may be a struggle. For those teens who need to take medication on a long-term basis to treat their illness, compliance with the drug regimen may be difficult. This may be a particular problem if the medication has certain undesirable side effects. For example, the steroid prednisone may cause an increase in acne. Despite this, many adolescents with chronic illness have a body image, which is not significantly different from those teens without chronic illness.
Parents may be less willing to grant autonomy to teens who have chronic illness. While the teen struggles for independence, parents may be reluctant to grant it since they may feel that the adolescent will not adequately manage his or her illness. And since chronic illness may delay the onset of puberty, growth and development, then parents are even more likely to remain protective. And the teen may become dependent on his or her family for companionship and social support if he or she is not well connected to the peer group.
Teens with chronic illness will develop a sexual identity, as do their healthy peers. This identify, as well as sexual feelings, may be delayed in ill teens. And the teen with chronic illness may have concerns about his or her sexual capabilities, physical attractiveness and ability to have sexual relationships.
Psychosocial development can greatly affect teens who have chronic illnesses. All teens have risk-taking behaviors as they begin the normal processes of separation, individuation and testing their limits. While having unprotected intercourse is risky for any teen, pregnancy for an adolescent with congenital heart disease or sickle cell anemia may be very risky and lead to an unhealthy outcome. A sexually transmitted disease in an adolescent who is receiving immunosuppressive medications may be more severe or difficult to treat than in a teen who is healthy.
Teens with chronic disease often require special educationally related services. For example, a teen with cystic fibrosis may have several long hospitalizations each year. In-hospital tutoring may be necessary so that the teen is able to keep up with his or her school peers. The teen’s physician may play an important role in coordinating care and advocating for the teen in the educational setting. Teens with asthma or allergies may require medications that produce drowsiness or short-term memory loss. Dilantin, a treatment for seizures, may cause deterioration in concentration, memory and motor speed. Chronic illness may cause fatigability and this could impact on the teen’s education and achievement in school.
As adolescents with chronic disease approach adulthood, they need to take charge of their health care. Late adolescents may struggle with their parents to assume the direction of their care. Issues may occur such as confidentiality of medical information. The older adolescent may wish treatment for sexually transmitted illness, mental health visits or even birth control options. He or she will desire confidentiality of the medical relationship, but parents may still wish information. All adolescents wish to establish financial independence and health insurance comes with that task. Unfortunately, for those adolescents with chronic illness, it is not be possible to complete their education in a timely manner, obtain a job with good benefits including insurance or even be able to afford health care.
When teens approach young adulthood, it is usually necessary to transfer care from the pediatrician to an internist or family practitioner. This may be especially complicated for teens who have chronic illnesses that are more severe or handicapping including cystic fibrosis, cancer or congenital heart disease. Some clinicians in the adult system of health care may be reluctant to accept adolescents who have disease with an onset in childhood. And teens with chronic disease also may be reluctant to give up the relationship with their pediatrician.
Despite chronic illness and sometimes very disabling conditions, many adolescents afflicted with these problems show tremendous resiliency and an intense desire to live and succeed in life. In 1994, then twenty-four-year-old Lance Armstrong, a competitive cyclist, found a lump in his testicle and he was diagnosed with testicular cancer that had spread to his lungs, abdomen and brain. The cancerous testicle was removed and he underwent chemotherapy. Many thought his competitive cycling days were over.
He would not let his chronic illness stand in the way of his dreams to win the Tour de France, which is a grueling 2,286 miles twenty-one-day road race in France. While his cancer treatments were underway, he rallied and began workouts to increase and regain his strength and stamina. To win his fight against cancer and win the Tour de France seemed to be insurmountable goals that worked at cross-purposes.
Nonetheless, the story is history. Not only did Lance win the Tour de France in 1999, but he also won in 2000 and 2001, the only person in history to perform this remarkable feat. As he celebrated his victories with his wife and child, he became a role model for many adolescents and young adults who have chronic illness.
Related topics:
Academics, asthma, body image, compliance, confidentiality, cystic fibrosis, disabilities, growth and development, independence and rebellion, risk-taking, seizures, self-esteem, sexuality, sexually transmitted diseases, testicular disorders
