Understanding the Effects of Chronic Illness on Siblings

New Sibling Center Helps Children and Adolescents Cope with Fear and Confusion

In families in which there is a child with a serious medical condition, parents often fail to recognize the needs of the well siblings. They naturally focus on the ill child’s needs, while those of the well child frequently go unnoticed. Research shows that siblings do better when they understand what is happening to their brother or sister and receive support from their parents and medical care givers.

California Pacific Medical Center recently established The Sibling Center to support the emotional, physical and psychosocial needs of well siblings. Medical providers can now refer a family to the Sibling Center for counseling and support.

The Research


The Sibling Center was founded by its Director, Joanna Fanos, Ph.D., as a result of her 20 years of research on the impact of pediatric chronic illness on the family, particularly the well sibling. Her research, funded in part by the National Human Genome Research Institute, National Institutes of Health, has examined the long-term effects of growing up with a sibling with disorders such as Cystic Fibrosis (CF), Ataxia-Telangiectasia and X-linked severe combined immune deficiency (“bubble boy” disease). Dr. Fanos’ findings showed that:

  • Families may not discuss the possibility that the sick child may die. As a result, a sibling may not understand the seriousness of the illness and may resent the amount of attention given to the affected child.
  • Parents are often absent during long periods of hospitalization of the ill child, possibly causing the well sibling to feel abandoned.
  • Some well siblings are embarrassed by the obvious manifestation of their brother’s or sister’s symptoms and have difficulty coping with their emotions.
  • If the child dies, the well sibling may experience survivor’s guilt.
Reactions can be far-reaching and expressed in many ways, including school difficulties, depression, worries about their health and that of loved ones, fear of intimacy, sleeping difficulties, guilt over their handling of the illness and survivor guilt. The following case studies from Dr. Fanos’ research illustrate some of these responses:

Case Studies

1. Cindy, a young woman, lost her older sister to CF when Cindy was a teen. Her earliest memory was of trying, to no avail, to get her mother to play with her. She basically “grew up alone," despite constantly pretending to be sick to get attention. Her sister’s actual death came a shock to Cindy. She reported that, following her sister’s death, her mother’s attitude toward her “changed completely,” trying to hug her as she used to hug her sister. About six months later, Cindy developed a case of mono so severe she could barely breathe. She is severely depressed, constantly anxious and convinced that she will die catastrophically at an early age.

2. Tom, a 38-year-old physician, lost his brother to CF when the latter was 16 and Tom was 19. Though he was first in his class throughout his school years and brought home many trophies for his prowess in sports, he was unable to capture his parents’ attention. He was always “second in a 2-horse race.” Tom knew his brother was very sick, and from the age of 9 read medical books on CF. Watching his mother turn not to his father but to the doctor for advice, Tom fantasized about becoming a famous physician and discovering the cure for CF. Following his brother’s death, he was involved in three near-fatal car accidents within six months (one of which occurred on his way to a medical school interview). During his residency, a girl with CF died in his arms. Tom was so shaken that he changed residencies and went into a less stressful specialty. He sometimes works in an emergency room, however, where he gets the chance “to be heroic.” (Joanna H. Fanos, Ph.D.: Sibling Loss, 1996)

The Sibling Center

The Sibling Center is believed to be the first of its kind in the nation, providing counseling for well siblings of seriously ill children. The goal of the program is to help this special group of children cope with their fear and confusion.

Four-Session Program
The Sibling Center’s program consists of four counseling sessions. The first assessment includes all parents and their well children, examining the degree of emotional distress, parent-child and sibling-child relationships, and existing support systems. A treatment plan is designed at this time. Siblings then attend two subsequent sessions without their parents to identify communication difficulties and strengthen coping skills. Parents are present at the fourth visit to review and develop future plans. A follow-up session is scheduled for some time during the next three to six months.

A referral to a therapist will be made if it appears that continued assistance would be beneficial. The treatment plan also includes web-based services along with support group sites for sharing information and concerns.

A Referral to the Sibling Center
Medical caregivers treating seriously ill children are urged to consider the health and well-being of siblings. Conditions for which children are referred to The Sibling Center include but are not limited to:

  • Asthma
  • Autism
  • Cardiology
  • Cystic Fibrosis
  • Epilepsy
  • Hematology/Oncology
  • Prematurity
  • Transplant
For more information and to make a referral, please contact us at:

The Sibling Center
at the
Child Development Center
California Pacific Medical Center
415-600-6200
www.cpmc.org/services/sibcnt.html