Chronic Illness in Adolescents

Adolescence is a stressful developmental process, even for physically healthy teens. Chronic illness occurring during adolescence further complicates adolescent development.

The chronic disorder, treatment requirements, hospitalization and surgery all intensify concerns about physical appearance, interfere with the process of gaining independence and disrupt changing relationships with parents and friends.

Adolescent developmental issues also complicate a teen's transition toward taking responsibility for managing his or her illness and learning to comply with recommended treatment.

Developmental complications of chronic illness

Adolescents who are faced with acute or chronic illness are more likely to experience increased concerns and fears when their illness or healthcare needs conflict with the following normal developmental issues:

• Body image issues. Adolescents are normally focused on the physical changes occurring in their bodies. Chronic illness intensifies these concerns with fears or distortions related to their illness, such as fearing that a surgical scar will interfere with physical attractiveness or the ability to wear certain clothes.

• Developing independence. Chronic illness frequently interferes with an adolescent's comfort in becoming less dependent on parents. Parents of chronically ill adolescents often are more resistant to the adolescent's efforts to act independently.

• Relationships with peers. Chronic illness and treatment often interfere with time spent with peers or in the school setting, which is the adolescent's primary social environment. Self-esteem issues related to acceptance of one's self and concerns about acceptance by others are intensified by chronic illness and related treatment needs. 

Noncompliance with medical treatment

As adolescents with chronic illness learn more about their illness and are encouraged to take responsibility for its management, attempts to make their own decisions about management are common.

These may include: 

• Trials of decreasing their medication or not taking it without consulting their healthcare provider
• Angry or self-conscious feelings related to having a chronic illness
• Poor judgment in how to cope with their feelings about their illness

It is important for parents and health care professionals working with adolescent patients to help the adolescent develop emotionally healthy ways of living with their chronic illness and its management requirements.

Some ways to help adolescents deal with the complications chronic illness often imposes on development may include the following:

• Encourage adolescents to share their ideas and concerns with healthcare professionals

• If there is noncompliance, encourage discussion of what happened rather than reprimand noncompliance

• Teach and encourage use of problem-solving skills related to their illness. Ask questions, such as: "What do you think you would you do if ... ?"or "What do you think would happen if ... ?"  

Seek help if noncompliance continues, if development regresses or if the adolescent seems overwhelmed. 

Transplant-related issues and adolescents

The need for an organ transplant is difficult to understand, accept and cope with for anyone. The emotional and psychological stress impacts all family members.

For adolescents who are developing the ability to think in new ways and explore new thoughts, the idea of facing transplantation stimulates thoughts, concerns and questions about their bodies, relationship and their lives.

You can help your adolescent cope with the need for a transplant in the following ways:

• Be honest with your teen about his or her illness and his or her healthcare needs

• Include your adolescent in discussions and decision-making related to the need for transplantation, the benefits and the risks involved

• Encourage your adolescent to ask questions and express his or her fears and feelings about how this affects his or her life

• Discuss concerns about death and the possibility of dying; though difficult, this is important

• Encourage hopefulness

• Encourage humor, as it helps to reduce stress

• Encourage friends to visit your teen in the hospital, when possible

• Enlist the help of mental health professionals in addressing fears, feelings, and behaviors that are problematic for your adolescent or for other family members