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.

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This article describes both ideological and theoretical studies of support systems available to handicapped, low-birth weight, and high-risk newborns and their families within the hospital setting. Attention is focused on the time-frame immediately following the birth of the infant. Medical, social service, and educational/ developmental factors influencing the family-unit are addressed. The article discusses extant strengths and weaknesses in each system from a parent's as well as a professional's perspective, along with models of "best practice" and an overview of implications for viable support.

The basic components of genetic counseling are informational and educational. The patient's cognitive and emotional presentation and the needs and concerns of the patient are seldom addressed. Females who carry the FMR1 pre and full gene mutation may present with learning, cognitive, and/or emotional difficulties and family members of those diagnosed with fragile X syndrome have ongoing needs and concerns. As a result, genetic counseling for fragile X syndrome offers a unique opportunity within which to expand the role of the genetic counselor. Q‐methodology, by using the q‐sort, is centered on the family to reproduce the needs and concerns that are consistent with the patient's own experience. Used for sociological research, the q‐methodology with specially constructed q‐sort items is easily adapted to the genetic counseling setting © 1995 Flynn & Gane and can be used for directly assessing the patient's needs and concerns. For our pilot study, 16 items were physically sorted and ranked interdependently by the patient (subject). Thirty‐seven patients (29 females and 8 males) participated in our pilot study. Preliminary results show that the age of the proband, length of time of the diagnosis, and parental sex at the time the q‐sort is administered impacts the ranking of items thus differentiating needs and concerns. Results have shown that specific items are missing from the lives of subjects. From the information obtained from the q‐sort, the genetic counselor can identify needs and concerns of the patient and combine this information with the clinical presentation to work with the patient in a more effective manner. © 1996 Wiley‐Liss, Inc.

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