California Pacific Currents 2002
The Sibling Center: Helping the Well Child Cope with Sibling Crisis or Chronic Illness
Well siblings of children with chronic or serious illnesses can be “forgotten” when the family’s attention is focused on the sick child. Yet these well children are at increased risk for psychosocial and health difficulties, such as depression, anxiety, guilt, or other disorders. Frequently, however, they have no formalized relationship with the health care community, and their needs go unrecognized. The Sibling Center is designed to address the unmet needs of this special group of children by pioneering a preventive model for the care of siblings of children with serious pediatric illness. For the well child of a sibling with chronic illness, the Sibling Center can prevent years of struggling alone.
Joanna H. Fanos, PhD, whose research was described in last year’s Currents, developed the concept of the Sibling Center from her extensive research on siblings of children with various disorders. The Sibling Center addresses both the immediate as well as long-term emotional, behavioral, physical, and psychosocial consequences experienced by children with a chronically or seriously ill sibling. Upon diagnosis of a child with a serious disorder, the physician now will be able to refer the family to the Sibling Center.
The process begins with evaluation and treatment plan development. Then counselors continue their work by addressing communication problems, such as an inability to talk about the disease. “The demand of keeping the family secret is a heavy burden for a young person and threatens healthy development. Studies of siblings of children with serious illnesses have shown that children coped better, and felt less isolated, when they were informed about the illness and the treatment program. In the tragic situation when a child dies, families who communicated well before the death of a child also tend to do so afterwards. The quality of this communication is indicative of how a surviving child will adjust to the loss of the ill sibling,” says Dr. Fanos, center director.
Assessing Emotional Distress of the Well Sibling
The first session of assessment and treatment is designed to include all well family members. Then, for two additional sessions, siblings are seen without their parents. At the fourth visit, parents and siblings are seen together again, with a follow-up family visit scheduled within the next 12 months. Therapists focus on assessing the child’s degree of emotional distress: anxiety level, guilt, depression, myths and fantasies concerning causality of the disease, and difficulties in family communication.
The clinician will explore each child’s understanding of the sibling’s illness — what he or she has been told, how he understands the information, and what his private ideas about the illness are. Determining emotional and behavioral responses to the illness will be a major goal. “We look for the appearance of new symptoms, such as guilt and anxiety, which can signal potential difficulties. We also look at current parent-child and sib-child relationships in addition to other existing support systems,” says Dr. Fanos.
Parental preoccupation with their own grief can have serious consequences for their well children, and recent data suggest that parents grieve for much longer periods of time than had been assumed. The grieving process, especially if prolonged, can have negative consequences for the well sibling’s identify and self esteem. “Therapists intervene by interviewing parents to determine how their coping or grief work is progressing and also by exploring with the child his or her feelings about how mom or dad is coping. The counselor might explore how the child’s relationship with their parents has changed since the diagnosis of their sibling’s illness,” comments Dr. Fanos.
If further intervention is indicated, the child is referred to his or her provider for continued treatment. Web-based family services are also a part of the treatment plan and include referral to support group sites for sharing information and concerns. Community resources and educational materials will also be provided. Should problems arise at any time during the one-year counseling cycle, staff at the Sibling Center will remain available to families.
The Research Connection
In the second year of operation, a research component of the Sibling Center is planned. The initiative will provide a “hands-on” base from which to develop and investigate questions as they emerge from clinical practice. Graduate students in masters and doctoral programs will obtain research, as well as clinical, experience at the Sibling Center.
To increase awareness of the needs of siblings of children with serious pediatric illness, the Sibling Center will disseminate information to providers, patients, and the community using seminars and lectures.
Measuring Improvement at a Time of Challenge
Several methods can be used to measure the success of the Sibling Center. These include the number of referrals from physicians as well as responses from families to a California Pacific Medical Center Patient Satisfaction Survey. Success of the second year research component can be measured by extramural funding secured and manuscripts published in peer-reviewed journals.
“But the real success of the program will be seen in enhanced family communication, in helping families cope with the illness, and in preventing long-term psychosocial difficulties among siblings of ill children. Those will be the outcomes of therapy that we hope and expect to see. Our major focus is on well siblings. We are here to let them know that their needs matter too and that they are just as important as their ill sister or brother,” concludes Dr. Fanos.