Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath (Disorders of Human Learning, Behavior, and Communication) - Tapa blanda

More than 10 years ago, with funding from the Connecticut State Depart­ ment of Education and the encouragement of its consultant on early child­ hood special education, Virginia Volk, we began our studies offamilies of infants who were hospitalized on the newborn intensive care unit of the John Dempsey Hospital located at the University of Connecticut Health Center. BettyJo McGrade, Deborah Allen, and Maria McQueeney played pivotal roles in the early years ofthis research program. Additional funding from the National March of Dimes Foundation, the University of Con­ necticut Research Foundation, and the National Institute ofMental Health prepared the ground for the study we describe in this book. The study began in 1984 through a National Institute of Disability and Rehabilitation Research center grant to the University of Connecticut Pediatric Research and Training Center, directed by Robert Greenstein and then by Mary Beth Bruder. LindaWalkercoordinated the project and conducted the interviews with families before hospital discharge. Pamela Higgins conducted all follow-up interviews and assisted with data manage­ ment and analysis. Elizabeth Trueb Roscher provided support services to a portion of the fanrilies who were studied. Deborah Begin transcribed interviews and handled the administrative details of the project. Richard Mendola was theconsultanton data analysis and the selectionofcomputer software and hardware.

The emotional impact of having a newborn hospitalized in an intensive care unit is immense. The parents' perceptions of the child's fragility and of their role in the vulnerable child's life represent important facts of the crisis in which the infant and the parents are involved. Such early stress marks the child's later development which may include chronic ailments and learning disabilities. This book explores a whole spectrum of psychological questions raised by the birth of medically fragile infants, from the parents' ability to restore a sense of meaning and mastery in the face of the profound challenges confronting them, to the importance of social support and coping strategies, and finally, to the crisis of newborn intensive care in the context of the marital relationship.