Being a teen is stressful even for physically healthy teens. Chronic illness during adolescence can complicate development. The illness, treatment, hospitalization, and surgery (when necessary) all magnify concerns about a teen's physical appearance. They also interfere with the process of becoming independent, and disrupt changing relationships with parents and friends. Also, developmental issues affect a teen's transition toward taking responsibility for managing his or her illness and learning to do what is needed for proper treatment.
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 intensifies these concerns with fears or distortions about their bodies. An example of this are fears that a surgical scar will interfere with physical attractiveness or the ability 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 effects of medicines and treatment. Talk about ways to reduce or cope with the effects.
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 child's efforts to act independently. To help address the conflict between normal development of independence, while still addressing healthcare needs of the chronic illness:
Involve teens in health-related discussions (for example, current concerns about their illness, treatment choices).
Teach teens self-care skills related to their illness.
Urge teens 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. This is the teen's main 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:
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.
Urge and help friends be supportive.
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 not taking it without discussing this with their healthcare provider. While this behavior may be developmentally normal, it may create the need for more healthcare. 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, teens 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 providers working with teens to help the them develop emotionally healthy ways of living with and managing their chronic illness. To help teens deal with the complications chronic illness:
Encourage teens to share their ideas and concerns with healthcare professionals.
When a teen's chronic illness reaches an unstable state due to not following treatment recommendations, 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.
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 recommendations continues.
A teen's development regresses, overly dependent behavior continues, or the teen withdraws from or gives up interest in activities that are appropriate to his or her age.
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 his or her illness and his or her 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 him or her cope with the process and life after transplant.
Supportive communication is vital. Encourage your teen 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 hard to talk about. However, it is important to address with teens in any life-threatening situation.
Encourage humor, as it helps to reduce stress.
Urge friends to visit your teen in the hospital, when possible.
Enlist the help of mental health providers to address fears, feelings, and behaviors that are hard to deal with for your teen or for other family members.