Prenatal consultation with a neonatologist for congenital anomalies: parental perceptions.

OBJECTIVES: To investigate parental expectations of a prenatal consultation with a neonatologist for a prenatally diagnosed congenital anomaly, to identify parents' values and unmet needs, and to obtain recommendations for improving physician-parent communication in a prenatal consultation. METHODS: Parents referred to neonatology for prenatal consultation after the diagnosis of a congenital anomaly. Completed 2 qualitative interviews: the first within 1 week of the consultation and the second 1 week after delivery. Interviews were analyzed for themes by using the constant comparative method associated with the grounded theory method. RESULTS: Thematic saturation was achieved after 42 interviews (22 women); only mothers participated. Five main themes emerged: (1) preparation; (2) knowledgeable physician; (3) caring providers; (4) allowing hope; and (5) time. Mothers believed that a consultation with a neonatologist helped them prepare for the perinatal course. They wished to know the management plan and all possible outcomes. Mothers wanted information specific to their situation and tailored to their knowledge base. Receiving conflicting information from physicians increased anxiety and eroded confidence. Seeing the NICU during the consultation was emotionally difficult but valuable. Mothers wanted realistic information, regardless of how grim, yet wanted to retain hope. All mothers would recommend a prenatal consultation with a neonatologist. CONCLUSIONS: Mothers perceived that a consultation with a neonatologist, which included a NICU tour, prepared them for the perinatal course. Parents want realistic medical information, specific to their situation, provided in an empathetic manner and want to be allowed to hope for the best possible outcome.

Convalescent care of infants in the neonatal intensive care unit in community hospitals: risk or benefit?

OBJECTIVE: To compare very low birth weight (VLBW) infants transported to a community hospital (CH) before discharge with infants who received convalescent care in a regional-referral NICU (RR-NICU) on 4 parameters: health indicators at the time of hospital discharge, health care use during the 4 months after discharge to home, parent satisfaction with hospital care, and cost of hospitalization. PATIENTS AND METHODS: VLBW infants cared for in 2 RR-NICUs during 2004-2006 were enrolled in the study. One RR-NICU transfers infants to a CH for convalescent care and the other discharges infants directly home. Infants were followed prospectively. Information was gathered from medical charts, parent interviews, and hospital business offices. RESULTS: A total of 255 VLBW infants were enrolled in the study, and 148 were transferred to 15 CHs. Nineteen percent of transferred infants were readmitted to a higher level of care before discharge from the hospital. Preventative health measures and screening examinations were more frequently missed, readmission within 2 weeks of discharge from the hospital was more frequent, parents were less satisfied with hospital care, and duration of hospitalization was 12 days longer, although not statistically different, if infants were transferred to a CH for convalescence rather than discharged from the RR-NICU. Total hospital charges did not differ significantly between the groups. CONCLUSION: Transfer of infants to a CH from an RR-NICU for convalescent care has become routine but may place infants at risk. Our study indicates room for improvement by both CHs and RR-NICUs in the care of transferred VLBW infants.

Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns.

OBJECTIVE: The aim of this study was to characterize parental decision-making regarding delivery room resuscitation for infants born extremely prematurely or with potentially lethal congenital anomalies. METHODS: This was a qualitative multicenter study. We identified English-speaking parents at 3 hospitals whose infants had died as a result of extreme prematurity or lethal congenital anomalies in 1999-2005. Parents were interviewed about their prenatal decision-making. Maternal medical charts were reviewed for documented discussions regarding delivery room resuscitation. Subject enrollment was stopped when saturation of themes was achieved. RESULTS: Twenty-six mothers of infants were interviewed. All parents wanted to participate to some degree in decisions regarding delivery room resuscitation. Few parents recalled discussing options for delivery room resuscitation with physicians, and even fewer recalled being offered the option of comfort care, even when these discussions were documented in the medical chart. Parents did not report physicians' predictions of morbidity and death to be central to their decision-making. Religion, spirituality, and hope guided decision-making for most parents. Some parents felt that they had not made any decisions regarding resuscitation and instead "left things in God's hands." These parents typically were documented by staff members to "want everything done." CONCLUSIONS: The values that parents find most important during decision-making regarding delivery room resuscitation may not be addressed routinely in prenatal counseling. Parents and physicians may have different interpretations of what is discussed and what decisions are made. Future work should investigate whether physicians can be trained to address effectively parents' values during the decision-making process and whether addressing these values may improve physician-parent communication and lead to better postdecision outcomes for parents.