The culture of research communication in neonatal intensive care units: key stakeholder perspectives

Abstract

Objective To assess the perspectives of neonatologists, neonatal nurses, and parents on research-related education and communication practices in the neonatal intensive care unit (NICU). Study design Questionnaire circulated through interest groups and administered using the internet. Results 323 respondents responded to the survey. 52 were neonatologists, 188 were neonatal nurses, and 83 were parents of NICU graduates. Analysis was descriptive. Differences were noted between stakeholder groups with respect to whether current medications meet the needs of sick neonates, research as central to the mission of the NICU, availability of appropriate education/training for all members of the research team, and adequacy of information provided to parents before, during, and after a research study is completed. Conclusion Engagement of nurses and parents at all stages of NICU research is currently suboptimal; relevant good practices, including education, should be shared among neonatal units.

Nurses' Knowledge, Communication Needs, and Future Directions in Neonatal Research

“…Nurses are the members of the care team who administer medicines in the NICU to sick infants and monitor their effect. Yet, previously reported5 survey results revealed that only half of the nurse respondents perceive a need for additional neonatal drug therapies, despite the widespread use of off-label medications 11. Nurses may have little experience with regulatory processes and product approvals, as relatively few new medications have been approved for neonates in the last decade.…”

“…The survey was conducted in English. Detailed methods and overall findings were previously published 5…”

“…The survey was created to address 3 stakeholder groups simultaneously (physicians, nurses, and parent advocates) with a set of questions specifically designed for each group. Nurse representatives participated in all stages of the survey development process, as well as data acquisition and analysis, and coauthored the primary article 5. The article5 provided perspectives of all stakeholder groups on research-related education and communication practices in the NICU.…”

“…Differences were noted with respect to the unmet needs of sick neonates, research mission of the NICU, education/training of the research team, and research communication provided to parents. Authors concluded that engagement of nurses and parents at all stages of NICU research is currently suboptimal 5. Silberstein,6 in an editorial on the article,5 discussed the differences in those perspectives despite the unanimity across the groups, in support of the principle that research should be an important component of an NICU's work.…”

Nurses' and Parents' Roles in Drug Development

“…Yet, ironically nurses when asked whether they feel prepared to play this role, nurses reveal they are not as confident and do not feel as well informed sufficiently to facilitate or support the parental decisionmaking process. 6 Of course, the nurse can refer them back to the research team but some families will not follow through since they are not as familiar with the research team members or feel comfortable to do so. Their participation may be lost at this point due primarily to the lack of support or lack of "understanding" of what it is all about.…”