KidsMD Health Topics

Chronic Illness

  • Adolescence can be stressful—even for physically healthy teens. Chronic illness during adolescence further complicates life for teenagers.

    The illness itself, plus treatments, hospitalizations, and surgery (when necessary), all intensify your teen’s concerns about his or her appearance, hamper his or her budding independence, and interfere with his or her relationships with parents and friends. Also, adolescent developmental issues can get in the way of your teen taking responsibility for managing his or her illness and learning to comply with recommended treatment.

    How Children’s Hospital Boston helps teens cope with chronic illness

    The Medical Coping Team at Children’s Hospital Boston works with teens and their families to help them adjust to the stress caused by chronic illness. Our experienced team of pediatric psychologists, psychiatrists and other mental health professionals provide effective, compassionate evaluation, education, counseling and therapy to help teens cope

    Contact Us

    Psychiatry

    Boston Children's Hospital
    300 Longwood Avenue
    Boston MA 02115

     617-355-6680


  • 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 normally are 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).

    • Developing independence: Chronic illness frequently interferes with an adolescent becoming less dependent on his or her parents. Parents of chronically ill adolescents often are more resistant to their child’s efforts to act independently.

    • Relationships with peers: Chronic illness and treatment often interfere with time spent with peers or at school, which is a teenager’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.

    How can parents help their teens cope with body image issues related to their illness?

    • Encourage your child to share his concerns related to his body and how it may be affected by his illness or treatment.

    • Inform him or her about anticipated physical effects of medications and treatment. Encourage discussion about ways to reduce or cope with the effects.

    How can parents help their teens continue to develop independence while managing their illness?

    Some ways to address this conflict, while still addressing healthcare needs of the chronic illness, include the following:

    • Involve your teen in health-related discussions (such as concerns about his or her illness or treatment choices).
    • Teach him or her self-care skills related to the illness.
    • Encourage your teen to monitor and manage his or her own treatment needs as much as possible.
    • Encourage the development of coping skills to address problems or concerns that might arise related to the illness.

    How can parents help their teens develop and maintain normal relationships with peers?

    • Encourage spending time with friends as much as possible.
    • Discuss concerns about what and what not to share with friends.
    • Help find ways to respond if teased by peers.
    • Encourage humor.
    • Encourage and assist friends in being supportive.

    Non-compliance with Medical Treatment and Teens

    As your adolescent learns more about his or her illness and is encouraged to take responsibility, he or she may attempt to make his or her own decisions about its management. Sometimes this leads to periods where your teen decreases his or her medication, or stops taking it without consulting the physician. For example, adolescent diabetics are more likely to use poor judgment in making food choices when they are with their friends.

    It’s important for parents and healthcare professionals to help your adolescent develop emotionally healthy ways of living with his or her chronic illness and its management requirements.

    What are some ways to help teens manage their treatment?

    • Encourage your child to share his or her ideas and concerns with healthcare professionals.

    • When your child’s chronic illness reaches an unstable state due to non-compliance of treatment recommendations, encourage discussion of what happened rather than reprimand non-compliance.

    • Teach and encourage use of problem-solving skills related to your child’s illness. Ask questions and encourage him or her to do so too.

    • Seek mental health services when:

      • your child seems overwhelmed with emotional issues related to living with a chronic illness.

      • a pattern of non-compliance continues.

      • your child’s development regresses, overly dependent behavior continues, and/or he or she withdraws from or gives up interest in age-appropriate activities.

    Teens and Transplant-related Issues

    The need for an organ transplant can be difficult to understand, accept and cope with for anyone. For adolescents who are developing the ability to think in new ways and explore new thoughts, the idea of facing transplantation brings up thoughts, concerns and questions about their bodies, their relationships, and their lives.

    Important factors in helping adolescents cope effectively with a transplantation experience include:

    • Be honest with your teen about his or her illness and 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 his 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 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 teenager or for other family members.

  • The Medical Coping Team at Children’s Hospital Boston provides comprehensive assessments of patients and their families facing medical experiences. A psychological evaluation of your teen can provide information about his or her coping style, and can help parents determine how best to help their child adjust.

    • Psychologists can help parents find ways to explain complex medical information to children, and can help parents consider the best timing for surgeries and hospitalizations that are not emergencies.

    • A preadmission preparation program may be developed for your individual child and family to help everyone in the family prepare for and cope with the hospitalization.

    • Psychologists can prepare your child for specific tests and operations using medical play therapy techniques, and can help parents find ways to manage their own feelings about the hospitalization.

    • Evaluations involve parent and child interviews and the completion of questionnaires. Based on the evaluation process, parents are provided with specific feedback and recommendations.

  • The Medical Coping Team at Children’s Hospital Boston emphasizes building upon family strengths and resources and developing practical strategies for coping with medical stressors in the best way possible. A primary goal is the prevention or resolution of emotional or behavioral difficulties related to illness or treatment.

    Treatment will most often be 8-10 sessions and may include the following methods:

    • Individual counseling for patients
    • Family or parent counseling
    • Sibling therapy
    • Group therapy
    • Medication consultations
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