Ward, R. M. (2005).Neonatal Network-The Journal of Neonatal Nursing, 24(3), 25-33.
This comprehensive review article of 20 studies summarized parent and professional perspectives of communication in the NICU within the context of decision making around ethical issues, research enrollment, and treatment choices. The author searched for articles written in English and published since 1983 in the United States, Europe, Norway, and Canada. While 60 articles were found to address the topic of interest, only 20 met study criteria and included both qualitative and quantitative designs. All of the studies concluded that direct communication between parents and NICU providers is necessary and critical when ethical decisions are made. This same finding held regardless of geographical setting, type of research design, sample size, or ethnicity of sample participants. Parents want to be actively involved in treatment decisions, and need to receive timely and complete information. Several studies noted a "temporal gap" where parents need time to assimilate the amount and details of information provided. In treatment choices involving ethical decision making, some providers did not give full and accurate information to parents, believing that not all parents were able to understand or cope with the medical complexities of the decisions. When parents were asked about treatment decisions, or to enroll their infants in research protocols, most parents felt they were not given adequate information to make decisions. Other parents, however, reported that they wanted information but did not feel competent to make decisions related to research participation. Both parents and providers agreed that there was rarely enough time to make ethical decisions in the NICU. The author concluded that while research on parental input into treatment and research decision making is facilitated by direct and open communication between parents and providers, the research is less definitive on best practices of communication in ethical decision making in the NICU. What does seem clear, however, is that as nurses become aware of parental beliefs about decision making, they may be able to be more supportive to parents in facilitating a more collaborative process.
Comment by Judy Beal