Tanglaw Fall 1998

    $1.3M GRANT GETS 300 KIDS TO ILL SIBLING SUMMER CAMP THROUGH FIL-AM PROFESSOR

    Phoebe Dauz Williams, PN, Ph.D., FAAN, professor at the University of Kansas School of Nursing, recently was awarded a three-year grant to develop summer camps where children can learn to live with the emotional strain and pressures of having brothers and sisters with cancer, diabetes, spina bifida and cystic fibrosis. "Often times the sick child gets the special attention, leaving their siblings feeling left out, Williams said. "The siblings then become angry with themselves because of their jealousy. We hope the camp will help these children cope with the pressures of having a chronically ill sibling, while giving them the opportunity to enjoy the special attention for a short period of time.

    The $1.3 million grant, "Intervention for Siblings, Experience Enhancement," or ISEE, is part of continuing efforts by nurse clinicians and researchers to find appropriate cost-effective means of providing assistance to families with chronically ill children. Traditionally, attention and interventions have focused only on the sick child or parents. Very little has been done to meet or even assess the needs of brothers and of chronically ill children, despite the fact that many of these siblings are known to have adjustment problems including depression, low self-esteem, withdrawal, problems in school, and feelings of isolation.

    As part of ISEE, 300 7- to 15-year-old siblings of chronically ill children will have the opportunity to spend a week at Camp Shawnee, in Parkville -Mo., which is -owned and supervised by Camp Fire Boys and Girls. Two groups of 100 children will attend camps funded by ISEE this summer, and another 100 will head to camp in the summer of 1999. The grant, which covers the cost of camp for all the children, also provides a small stipend to parents to help defray out of pocket expenses such as travel.

    In addition to the regular camp experiences, siblings in one of the two groups this summer will receive support sessions and training by nurses and other professionals designed to help them understand and adjust to the pediatric chronic illness in the family. The second and third groups will simply enjoy regular camp experiences. A year-long follow-up of all the participating children will help researchers determine if the camp experience and training programs had an appreciable impact on how children and parents deal with each other and the chronic illness that often rule the lives of each family member. If evidence supports the hypothesis that this type of intervention has a positive effect on the siblings, Williams will approach area philanthropists for continued funding of the camp with hopes of expanding to other diagnostic conditions.

    The National Institute for Nursing Research, a division of the National Institutes of Health, in Bethesda, Md., is providing the funding for this project. The project is a collaborative effort between advanced practice nurses on staff at KU Medical Center and Children’s Mercy Hospital; Camp Fire Boys and Girls (Heartland Council); and the Missouri Association for Social Welfare.

    The nurse co-investigators from the KU Medical Center and the KU School of Nursing are Carolyn Graff, MN; Sandra Hanson, M.Ed.; Martye U. Barnard, Ph.D.; Robyn Karlin MSN; E. Lavonne Ridder, MN; Adrienne Liebergen, MN; Anne Stanton, MN; and Nancy Potter, MN. The co-investigators from Children’s Mercy Hospital are Carole Hafeman, MN; Heather Curry, MSN; Stephanie Schwart7, WI-L and Karla Leuenberg, MN.

    To qualify for the Sibling Project a family must have a healthy child (sibling) between ages 7 and 15 years old who lives at home with a brother or sister who has either diabetes, cancer, spina bifida, or @ fibrosis. Families who call before September 10, 1998 could get a chance for the sibling to attend a free summer camp in July l999. CONTACT: DR. PHOEBE D. WILLIAMS at (913) 588-1673 (or 1610).

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