Clinics and Departments

Chronic illness and teenagers

For teens with a chronic illness or disability, adolescence is a combination of a special developmental period and a difficult set of challenges. Adolescence is a unique developmental time characterized by emerging independence, rapid cognitive and physical growth, and the development of an identity. Peer relationships develop a special significance during adolescence. Chronic illness and disability impose physical limitations, often require repeat medical visits, and can involve complex medical treatments.

A chronic illness or disability can affect an adolescent in many ways:

  • Complicating their development of independence
  • Interfering with their connection to peers
  • Introducing a new set of emotional conflicts during an already emotionally charged time
  • Adding stress on relationships due to the limits on social activities or increased need for support
  • Imposing physical changes and limitations
  • Affecting self-esteem and their self-concept.

What Parents Can Do

A parent’s role in a teen’s adjustment to his or her illness is critical. In addition to the health and medical care a parent helps provide, there are some important efforts parents can make to ensure their child’s adjustment to their illness. These efforts can go a long way in helping teens, and their parents, carry on through the challenges of illness.

Balance

Parents need to help teens adapt to their illness. This means recognizing the limitations their illness imposes. It also means continuing with life as usual, whenever possible. It is important for families to decide what is realistic for each member to manage and to remain flexible to meet the unexpected demands of an illness.

Family Relationships

An illness can stress the entire family as constant demands are placed on its members. Nevertheless, family members need to maintain a commitment to the family. Family relationships need special attention. Keeping communications open. Spend time together that is not focused on the illness. Siblings often feel overlooked when a brother’s or sister’s needs demand so much family time.

Coping

Parents need to help teens learn new ways to cope with the special challenges of an illness. Discussing with a teen how their illness is affecting him or her and finding ways to help solve problems or cope with the feelings is very helpful. Teens can learn to build on their strengths and can even develop pride in their abilities to meet the challenges.

Peer Relationships

Illness often interferes with routines and activities. For teens, a particularly devastating consequence can be the weakening or loss of friendships. Friends can grow apart as a result of these changes. Keeping teens involved with their peers and making extra efforts to maintain those connections can go a long way in helping a teen cope with an illness. Helping teens to find new ways to make and maintain new relationships is critical during this time.

Hopefulness

Coping with an illness can be discouraging and facing a life-threatening condition can be scary. Keeping hopeful is crucial. Looking for the positive in situations and keeping optimistic are especially important during this time. This does not mean negative feelings should be ignored. Concerns and worries should be recognized. All the possible positive outcomes need to be considered.

Help

To cope well with an illness, families need to be able to rely on others for help. This support can be available from family and friends, and also can include developing relationships with professional experts in the field of illness and disability. Working together with personal and professional supports can help a family receive the best care for their teen while maintaining their daily life.

When to Seek Help

Coping with the challenges of a chronic or life threatening illness is a difficult challenge for anyone. For a teen, the more their illness interferes with school, friends, and activities, the more difficult the adjustment to the illness can be. The special challenges of this time can require special help. Most teens find support and guidance important at this time, even if their usual network of family and friends is supportive. But often it becomes important to seek the advice and counsel of a mental health professional. These professionals can support teens’ coping, development, and health. Teens who have experienced recent changes with friendships or whose physical health is poor because of the illness can particularly benefit from professional help. Teens who appear depressed or who show other signs of depression should receive professional help immediately.

Services Available

Often medical treatment programs have services available to support teens and their families in managing an illness. These services can include education about the illness or condition, support for coping, and fun activities for teens and their families.

Services of Children’s Hospitals

Child and Family Services
Child and Family Services provides a variety of mental health services for children, teenagers, and their families. The staff of Child and Family Services help teens with illness and help their families cope with the stress of a chronic illness or medical problem. Services are provided at the hospital and clinics of Children’s and at our Child and Family Services clinic. The specialists of Child and Family Services include psychologists, social workers, nurse practitioners, and psychiatrists who work with teens to help them cope with the challenges of being sick. Contact Child and Family Services at (651) 220-6720.

Family Resource Center
The Family Resource Center of Children's Hospitals and Clinics has a wide range of information available about illness and disability. The staff can assist teens and their parents in finding information about their illness or condition. They also can help families access information about possible organizations as well as services in the area. Contact the Resource Center at 651-220-6368.

Living with Chronic Illness
This booklet highlights group interviews with youth with chronic illness. It examines the psychosocial impact of illness on teens and what has been important for their coping with these challenges. For information on ordering, call (612) 220-6765.

Coping and Connecting: Teens Talk about Living with A Chronic Illness
The video offers an in-depth look at the experiences of coping with illness as a teen. Youth talk candidly about what it’s like to be diagnosed with a chronic or life-threatening illness, the challenges they face, and what has helped them to cope. These young people provide hope to their peers. To order or receive a preview copy call: 651-220-6765. Cost is $29.95.

Other Resources

Books

Young People and Chronic Illness
Youth talk about their families, friends, talents, interests, struggles, and dreams.
   - Huegel, K. (1998). Minneapolis: Free Spirit Publishing.

Teens Face to Face with Chronic Illness
Thirteen young people describe in their own words the nature of their illnesses and, most importantly, how they cope.
   - Levert, S. (1993). New York: Julian Messner.

Taking Charge: Teenagers Talk about Life and Physical Disabilities
Gives advice and creative solutions for the wide range of issues that teens with a variety of illness and other physical disabilities face during adolescence. Covers three major areas of concern: self-esteem, relationships, and dealing with the future.
   - Kriegsman, K. H. (1992). USA: Woodbine House.

Help Organizations

PACER Center, Inc
612-827-2966
1-800-53-PACER

  • PACER advocates for parents of children with any kind of disability, age 0-21 years. They offer workshops for parents, and have many free publications.

Pathfinder Resources, Inc.
612-647-6905

  • Pathfinder works to improve systems of care for people with chronic health conditions. Among other activities, they compile and publish information and conduct workshops.

Internet Resources

Healthfinder, www.healthfinder.gov

Medscape, www.medscape.com

Medline, www.nlm.nih.gov

New England Journal Medicine, http://content.nejm.org/

Mayo Clinic, http://www.mayoclinic.com/