A Look at the Decisions Hispanic Families Make
After the Diagnosis of Deafness

By Annie Steinberg, M.D., Lisa Bain, M.A., Yuelin Li, Ph.D.,
Louise Montoya, M.A., N.C.C., C.S.C., and Vivian Ruperto, B.A.,
of the Children's Seashore House at The Children's Hospital of Philadelphia

Posted December 2002

Annie Steinberg, M.D., is the director of Psychiatry and director of The Deafness & Family Communication Center at the Children's Seashore House of The Children's Hospital of Philadelphia. She is fluent in American Sign Language and has spent the past 15 years providing direct services to individuals who are deaf and to their families. In her research, she utilizes ethnographic and microethnographic methodologies to examine the experiences of illness and disability in our culture. Recent projects have included a four-year prospective study of parental decision making for families of children who are deaf and an exploration of the experience of oral deafness.

Lisa Bain, M.A., is a research project manager at The Deafness & Family Communication Center at the Children's Seashore House of The Children's Hospital of Philadelphia. As the project manager for a four-year prospective study of parental decision making in families of children who are deaf, she has interviewed more than 20 families, some as many as seven times, about their experiences raising a child with a hearing loss. She has worked as a science and medical writer and editor for 17 years and is the author of three books about parenting children with health problems.

Yuelin Li, Ph.D., is a research assistant professor in the Department of Anesthesiology at the University of Pennsylvania and an active member of the Center for Outcomes Research at The Children's Hospital of Philadelphia. His research involves the use of decision aids to explore the influence of values and beliefs on decision making. He also provides expertise in statistical analysis.

Louise Montoya, M.A., N.C.C., C.S.C., is a therapist, researcher, and nationally certified counselor and sign language interpreter who has worked with deaf and hard of hearing people for the past 18 years. She directed two community-based centers for deaf and hard of hearing people, one of which (the El Paso Center for the Deaf, Inc.) served primarily deaf and hard of hearing Mexican Americans and immigrants and their families.

Vivian Ruperto, B.A., was a research assistant at The Deafness & Family Communication Center at the Children's Seashore House of The Children's Hospital of Philadelphia. She contributed to both the data collection and analysis phases of this research.

The contents of this report were developed under a cooperative agreement with Gallaudet University. However, the contents herein do not represent the policy of Gallaudet University, and endorsement by Gallaudet or the U.S. Department of Education should not be assumed.

The following individuals contributed to the research effort as community facilitators, interviewers, and translators: Rocio Aguirre, Ada Brainsky, Maria Campos, the Clerc Center's Interpreting and Translation Services team, Donald and Marilú Couch, Kathy DiPasquale, Madlyn Garcia, M.D., Silvia Golocovsky, Eneida Gomez, M.D., Leo Hidalgo, Adela Llumpo, Marta Ordaz, Minnie Ponce de Leon, Linda I. Rosa-Lugo, Ed.D., Aracely Rosales, Jesse Sandoval-Barrett, M.D., Marina Simon, Hugh Sommers, Nellie Torres, and Leticia Tumax.

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