Guided by Newman's theory of health as expanding consciousness, this study explored the pattern of nurse-parent interaction in families with children who were medically fragile by applying the hermeneutic, dialectic method of interviewing and analysis. Living with children who are medically fragile was manifested by continual uncertainity. Families changed from trying to gain control of their uncertainty to learning to live in the uncertainty, as they evolved through an initial p[eriod of disruption and disorganization to organization at another level. This required new ways of relating to friends, family, healthcare providers, and the community, expanding the consciousness of the family.

As children and adults with developmental disabilities and special health care needs are integrated into home, school, and community life, nurses are being required to provide leadership, advocacy, and training in community settings to a much greater extent than in the past. To assess the school and community need for formal graduate preparation for nurses who work with individuals with developmental disabilities and/or special health care needs, 25 nurses in leadership positions representing urban and rural health agencies throughout Minnesota took part in a 5-hour focus group discussion. Analysis of data summarized from this process shows five features of the recommended curriculum necessary for advanced practitioners in this specialty area: (a) discipline-specific core competencies, (b) discipline-specific specialty competencies, (c) genetic competencies not specific to nursing but necessary to function in nursing roles, (d) interdisciplinary and intradisciplinary learning experiences, and (e) clinical experiences with preceptors. The authors recommend the development of interdisciplinary graduate programs designed to prepare nurses to assume leadership roles in school health, public health, home health care, and systems management that will affect public policy and, ultimately, promote change in the systems charged with responsibility to serve this population.