Chronic Illness and Transplantation Issues and the Adolescent
Adolescence, alone, is a stressful developmental process even for physically healthy teens. Chronic illness happening during adolescence makes adolescent development even harder. The chronic disorder, treatment needs, hospitalization, and surgery (when necessary) all make concerns about physical appearance more intense. They also interfere with the process of gaining independence and disrupt changing relationships with parents and friends. Also, adolescent developmental issues complicate a teen's transition toward taking responsibility for managing their illness and learning to follow 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 a surgical scar will interfere with physical attractiveness or the ability to wear certain clothes, or how medicines will change their appearance, such as weight gain). It is helpful to:
Encourage adolescents to share their concerns related to their body and how it may be affected by their illness or treatment.
Inform adolescents about anticipated physical effects of medicines and treatment. Encourage discussion about ways to reduce or cope with the effects.
Developing independence. Chronic illness often 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. Some ways to address the conflict between normal development of independence, while still addressing healthcare needs of the chronic illness, include the following:
Involve adolescents in health-related discussions (for example, current concerns about their illness, treatment choices).
Teach adolescents self-care skills related to their illness.
Encourage adolescents to monitor 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, 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. 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 adolescents find ways to respond if teased by peers.
Encourage and assist friends in being supportive.
Provide an educational environment for peers concerning chronic illness. Stress that it does not need to interfere with having normal relationships.
Noncompliance with medical treatment and teens
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. Trials of decreasing their medicine or not taking it without talking with a healthcare provider often happen. While this behavior may be developmentally normal, it may create the need for additional healthcare intervention. Angry or self-conscious feelings related to having a chronic illness, or poor judgment in how to cope with their feelings about their illness, might also affect following the recommended treatment or management techniques. For example, adolescents with diabetes are more likely to use poor judgment in making food choices when they are with their friends. It is important for parents and healthcare professionals working with adolescent patients to help the adolescent develop emotionally healthy ways of living with their chronic illness and its management needs. 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.
When an adolescent's chronic illness reaches an unstable state due to not following the treatment recommendations, encourage discussion of what happened rather than scold the adolescent for not following the recommendations.
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……..?" Encourage adolescents to ask you the same kinds of questions.
Seek mental health services when:
An adolescent seems overwhelmed with emotional issues related to living with a chronic illness.
A pattern of noncompliance continues.
An adolescent's development regresses, overly dependent behavior continues, and/or the adolescent withdraws from or gives up interest in age-appropriate activities.
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, their relationships, and their lives.
Important factors in helping adolescents cope effectively with a transplantation experience include the following:
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. This is very important to helping him or her cope with the process and life after transplant.
Supportive communication is vital. Encourage your adolescent to ask questions and express his or her fears and feelings about how this affects his or her life.
Concerns about death and the possibility of dying are difficult to talk about. However, it is important to address this topic with adolescents in any life-threatening situation.
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.
If possible, place the adolescent in contact with others of his or her age group who have had a successful transplant experience.