NEH Awards Fellowship to Rutgers-Camden Researcher

January 21, 2004

CONTACT: Cathy Karmilowicz, Rutgers-Camden public information office, (856) 225-6627, catkarm@camden.rutgers.edu

For Immediate Release

CAMDEN – When a child gets a cold, mom and dad are quick to provide chicken soup and Tylenol until the patient is well again. When a child is diagnosed with brain cancer, and cure is not likely, how does a parent begin to make decisions about medical treatment?

Thanks to a National Endowment for the Humanities (NEH) Fellowship, a Rutgers University-Camden scholar is examining how difficult decisions for treating children with incurable diseases are being made and how the voices of young patients, parents and physicians are heard.

Narberth resident Myra Bluebond-Langner, a distinguished professor of anthropology at Rutgers-Camden where she directs the Center for Children and Childhood Studies, will use the highly prestigious yearlong NEH Fellowship to finalize her research on the complicated and critical decision-making treatment process that involves child patients, their parents, and physicians, with the intention of providing a resource for childhood studies scholars as well as those caring for a child with a terminal illness.

The results of her research will appear in Bluebond-Langner’s forthcoming book, "Choiceless Choices: Decision Making for Children with Cancer When Cure is Not Likely." NEH grants are awarded on a highly competitive basis. Since its inception in 1965 as an independent federal agency, the National Endowment for the Humanities has supported blockbuster exhibitions such as “Treasures of Tutankhamen”; landmark documentaries like Ken Burns’ “The Civil War”; and 15 Pulitzer Prize-winning books, including those by James M. McPherson, Louis Menand, Joan D. Hedrick, and Bernard Bailyn.

Bluebond-Langner’s book will examine the daily lives, meetings, discussions, and decisions surrounding 80 children with cancer, their parents and physicians, that she observed at two major pediatric hospitals in the US and England who care for children with cancer. The Rutgers-Camden researcher aims to offer a better understanding of how medical alternatives are being chosen; what roles children, parents and physicians individually play in the process; and how parents and ill children can more actively participate.

Although many professional medical organizations, like the American Academy of Pediatrics, recommend involving parents and children in the decision-making process, there are no clear guidelines on just how to do this. The decision-making process itself, Bluebond-Langner says, is not clearly defined. “My hope is to provide a rich and detailed description of the entire decision-making process –- all of its complexity –- that would serve as a basis for improved socio-cultural and ethical understanding, as well as recommendations for policy and practice,” says Bluebond-Langner.

During her research, Bluebond-Langner coordinated with co-investigators and consultants Jean Belasco, clinical associate professor of pediatrics, and Jeffrey Silber, associate professor of pediatrics, both from the Children’s Hospital of Philadelphia; and Ann Goldman, director of supportive care team at Great Ormond Street Hospital for Children.

A longtime advocate for children with chronic diseases, Bluebond-Langner is the 1997 winner of the Charles A. Corr Lifetime Achievement Award in Literature on Children and Death, which is given by the Children’s Hospice International for authors who write about children with chronic, life-threatening or fatal conditions. Her books, "The Private World of Dying Children" (1978, Princeton University Press) and "In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child" (1996, Princeton University Press), have established Bluebond-Langner as a leader in her field. The former tome was awarded the 1987 Margaret Mead Award, a singular honor presented jointly by the American Anthropological Association and the Society for Applied Anthropology. Her research has led to invitations to deliver papers at the world’s preeminent universities.

This is her second NEH Fellowship; she received her first in 1981. Bluebond-Langner joined the Rutgers-Camden campus in 1974. She is a graduate of Temple University and earned her advanced degrees at the University of Illinois. -30-