Developmental complications of chronic illness

Teens who are faced with a brief or long-term illness are more likely to have more concerns and fears when their illness or healthcare needs conflict with these normal developmental issues:

• Body image issues. Teens are normally focused on the physical changes happening in their bodies. Chronic illness makes these concerns worse with fears or distortions about their bodies. An example of this are fears that a surgical scar will interfere with physical attractiveness. Or that they won't be able to wear certain clothes. To help body image concerns:

  • Encourage teens to share their concerns about their body and how it may be affected by their illness or treatment.

  • Inform teens about possible physical side effects of medicines and treatment. Talk about ways to reduce or cope with the side effects.

• Independence. Chronic illness often interferes with a teen's comfort in becoming less dependent on parents. Parents of chronically ill teens may resist the child's efforts to be independent. To help address the conflict between normal development of independence, while still addressing healthcare needs of the chronic illness:

  • Include teens in health-related discussions. For instance, discuss current concerns about their illness and treatment choices. Have them bring their medical questions. Include them in discussions during follow-up appointments.

  • Teach teens self-care skills related to their illness.

  • Urge teens to keep track of and manage their own treatment needs as much as possible.

  • Encourage the development of coping skills to address problems or concerns that might arise related to their illness.

• Relationships with peers. Chronic illness and treatment often interfere with time spent with peers or in the school setting. This is the teen's main social environment. Self-esteem issues related to acceptance of oneself and concerns about acceptance by others are intensified by chronic illness and related treatment needs. To address these concerns:

  • Encourage spending time with friends as much as possible.

  • Discuss concerns about what to share with friends.

  • Help teens find ways to respond if teased by peers.

  • Encourage humor.

  • Urge and help friends be supportive.

  • Develop good relationships with your child's school so quick action can be taken if any bullying occurs.

Noncompliance with medical treatment and teens

As teens with chronic illness learn more about their illness and are encouraged to take responsibility for its management, it's common for them to make their own decisions about management. Teens may try decreasing their medicine. Or they may not take it at all. They may do this without talking first with their parents or healthcare provider. This behavior is developmentally normal. But it may create the need for more healthcare.

A teen may feel angry or self-conscious about having a chronic illness. Or they may show poor judgment in coping with their feelings about their illness. These things may also affect how teens follow the advised treatment or management methods. For instance, teens with diabetes are more likely to use poor judgment in making food choices when they are with their friends. It's important for parents and providers working with teens to help them develop emotionally healthy ways of living with and managing their chronic illness. To help teens deal with the complications of chronic illness:

• Encourage teens to share their ideas and concerns with healthcare professionals.

• When a teen's chronic illness reaches an unstable state because they have not been following treatment advice, encourage discussion of what happened rather than scold this behavior.

• Teach and urge the 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 ... ?" Encourage teens to ask you the same kinds of questions.

• Get mental health services when these things occur with a teen:

  • They seem overwhelmed with emotional issues related to living with a chronic illness.

  • They have a pattern of not following treatment recommendations.

  • Their development regresses and overly dependent behavior continues. Or they withdraw from or give up interest in activities that are appropriate to their age.

Transplant-related issues and teens

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

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

Important factors in helping teens cope well with a transplant experience include the following:

• Be honest with your teen about their illness and their healthcare needs.

• Include your teen in discussions and decision-making related to the need for a transplant, the benefits, and the risks involved. This is very important to helping them cope with the process and life after transplant.

• Supportive communication is vital. Encourage your teen to ask questions and express their fears and feelings about how this affects their life.

• Concerns about death and the possibility of dying are hard to talk about. However, it's important to address with teens in any life-threatening situation.

• Encourage hopefulness.

• Encourage humor, as it helps to reduce stress.

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

• Get help from mental health providers to address fears, feelings, and behaviors that are hard to deal with for your teen or for other family members.

For more help

Call your teen's healthcare provider right away if your teen:

• Feels extreme depression, fear, anxiety, or anger toward themselves or others

• Feels out of control

• Can’t sleep or eat for days in a row

• Shows behavior that concerns friends, family, or teachers, and others express concern about this behavior and ask you to get help

If your teen is talking about harming themselves:

• Call or text 988 or 800-273-TALK (800-273-8255) right away. You will be connected to trained counselors at the 988 Suicide & Crisis Lifeline. An online chat choice is also available. This service is free and available 24/7.

• Make sure your teen has emergency numbers in their phone. These would include parents, other trusted adults, the healthcare provider, and the 988 Suicide & Crisis Lifeline. Help your child understand that reaching out for help is the most important thing to do if they are thinking about self-harm.