Support for rural families of hospitalized infants: the parents' perspective.

The provision of family-centered care in the hospital arena has become a national commitment. Recognizing and supporting the family's role means evaluating whether attitudes, policies, and practices address the immediate and the long-term needs of the total family rather than just the current needs of the child. Results of a study to determine parents' perceptions of supportive services available in the hospital immediately following the birth of their child with special health care needs are reported. In-depth interviews with mothers living in rural areas were conducted. Mothers emphasized the importance of access to their child; the need for timely, honest, straightforward information about their child's condition and progress; the intense emotional reaction to the intensive care environment; and the importance of an early link to community-based early intervention services. Overall, parents conveyed the importance of recognizing the family as an integral part of the child. Implications and recommendations for family-centered services are discussed.