UH Rainbow University Premier Pediatricians

Chronic Illness and Transplantation Issues and the Teen

The teenage years are a stressful time. This is true even for physically healthy teens. Chronic illness happening during these years makes a teen's development even harder. The chronic disorder, treatment needs, hospital stays, and surgery (when needed) all make concerns about physical appearance more intense. They also interfere with the process of gaining independence. And they disrupt changing relationships with parents and friends. Developmental issues complicate a teen's transition toward taking responsibility for managing their illness and learning to follow recommended treatment.

Developmental impact of chronic illness

Teens who are faced with chronic 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 occurring in their bodies. Chronic illness increases these concerns with fears related to their illness. Examples are fearing a surgical scar will affect their physical attractiveness or the ability to wear certain clothes, or wondering how medicines will change their appearance, such as weight gain). It is helpful to:

Encourage teens to share their concerns related to their body and how it may be affected by their illness or treatment.
Inform teens about possible physical effects of medicines and treatment. Encourage discussion about ways to reduce or cope with the effects.

Developing independence

Chronic illness often interferes with a teen's comfort in becoming less dependent on parents. Parents of chronically ill teens are often more resistant to the teen's efforts to act independently. There are ways to address the conflict between normal development of independence, while still addressing healthcare needs of the chronic illness. These include the following:

Involve teens in health-related discussions. For example, talk about current concerns about their illness and treatment choices.
Teach teens self-care skills related to their illness.
Encourage 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 come up 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 primary social environment. Self-esteem issues related to acceptance of oneself and concerns about acceptance by others increases with chronic illness and related treatment needs. To address these concerns, consider the following:

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.
Encourage and assist friends in being supportive.
Provide an educational environment for peers concerning chronic illness. Stress that it does not need to get in the way of having normal relationships.

Noncompliance with medical treatment and teens

Teens with chronic illness may want to make their own decisions about management as they learn more about their illness. They may make changes in their medicines without talking with a healthcare provider. While this behavior may be normal, it may create the need for additional healthcare. Angry or self-conscious feelings related to having a chronic illness. might also affect following the recommended treatment or management methods. Poor judgment in how to cope with their feelings about their illness could also be a factor. For example, teens with diabetes are more likely to make poor food choices when they are with their friends. It is important for parents and healthcare professionals working with teens to help them develop emotionally healthy ways of living with and managing their chronic illness. Some ways to help teens deal with the complications chronic illness often imposes on development may include the following:

Encourage teens to share their ideas and concerns with healthcare professionals.
A teen's chronic illness might reach an unstable state due to not following the treatment recommendations. If this happens, encourage discussion of what happened rather than scold the teen for not following the recommendations.
Teach and encourage 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.
Seek mental health services when:
- A teen seems overwhelmed with emotional issues related to living with a chronic illness
- A pattern of not following treatment continues
- A teen's development regresses, overly dependent behavior continues, or the teen withdraws from or gives up interest in age-appropriate activities

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 affects all family members.

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

Important factors in helping teens cope effectively with a transplantation experience include the following:

Be honest with your teen about their illness and healthcare needs.
Include your teen in discussions and decisions related to the need for transplantation, the benefits, and the risks involved. This is very important in helping your teen cope with the process and life after transplant.
Encourage your teen to ask questions and express their fears and feelings about how this affects their life. Supportive communication is vital.
Allow your teen to talk about their concerns about death and the possibility of dying. These topics can be hard to talk about. However, it is important to address this topic with teens in any life-threatening situation.
Encourage hopefulness.
Encourage humor since it helps to reduce stress.
Encourage friends to visit your teen in the hospital or at home, when possible.
Get the help of mental health professionals in addressing fears, feelings, and behaviors that are challenging for your teen or for other family members.
If possible, put your teen in contact with other people in their age group who have had a successful transplant experience.