Abstract
OBJECTIVE: To better understand preferred approaches that health care professionals could use when caring for parents who are at risk of giving birth to an extremely premature infant. METHODS: Women who were at high risk of having a periviable birth were recruited from three tertiary care hospitals with level 3 neonatal intensive care units. These women, as well as their partners, physicians, and nurses underwent structured interviews both before and after delivery. Interviews were analyzed for advice that was provided to health care professionals who could be involved in the future counseling of antenatal patients at high risk of periviable delivery. RESULTS: Forty women, 14 fathers, and 52 health care providers participated in the interview process. Two main themes were identified--namely, the fundamental importance of information provision and support. Nevertheless, although all participants agreed about the importance of these actions, several areas of discordance among participants were noted. Nearly one third of parents emphasized the importance of "hope"; 60% and 45% recommended the provision of supplementary written and Internet materials, respectively. In contrast, most health care providers expressed the importance of "objectivity," and only 15% and 5% thought written or Internet materials, respectively, were desirable, given the concern that supplementary information sources could be misleading. CONCLUSION: Both patients and providers agree about the centrality of information provision and emotional support for women at risk of periviable delivery. This study not only elucidates preferred approaches and methods by which this information and support could be optimized, but also shows pitfalls that, if not avoided, may impair the relationship between provider and patient.