Neonatal nurses’ experiences of caring for high-risk infants involved in research
Although attention has been given to parental attitudes regarding enrollment of their high-risk infants in research, there is a paucity of knowledge in the literature, which investigates nurses’ experiences of caring for high-risk infants involved in research. Consequently, there is little understanding of how caring for these infants impacts nursing care. The purpose of this research was to arrive at an increased understanding of neonatal nurses' experiences in caring for high-risk infants involved in research. Attention was given to exploring neonatal intensive care unit (NICU) nurses’ perspectives towards neonatal research and the notion of risk to involving high-risk infants in research, their perceived roles and responsibilities with regards to high-risk infants in research, and the impact of research on caring for high-risk infants. This study was built on the research program of the student’s supervisor that seeks to increase the knowledge base of the nature of risk in child health research. An exploratory descriptive study within the qualitative paradigm was used. Seven semi-structured interviews, one focus group interview, and field notes were used to obtain information from seven NICU nurses. All of the qualitative data that emerged was analyzed using the constant comparative data analysis technique. Data analysis revealed that safeguarding their patients, or being a “safety net”, was the essence of nurses’ experiences of caring for high-risk infants involved in research. The nurses described their main role was the provision of a safe environment, regardless of the infants’ involvement in research. Acting as a “safety net” involved the nurses always being on guard and knowledgeable about their patients’ care. The following three themes further depicting the safeguarding experience emerged: feelings within, keeping it near and dear, and making it safer. The first theme, feelings within, uncovered nurses’ mixed emotions when caring for infants involved in research, which ranged from positive feelings to feelings of moral distress. The second theme, keeping it near and dear, referred to the uncomfortable feelings and memories that nurses held about situations in which they felt infants enrolled in research had suffered because of their inability of not being able to fully safeguard them. Some of the nurses expressed regretting their choices, such as not speaking up on a patient’s behalf, while others described it as a learning process, which eventually contributed to their abilities to safeguard infants. The third theme, making it safer, was based on the nurses’ enthusiasm about the future of neonatal research. The nurses identified many ways in which child health researchers, bedside nurses, REB members, and parents could minimize the risks of involving high-risk infants in research. This study yielded new insights about how NICU nurses care for high-risk infants involved in research that may be used to improve the protection of high-risk infants in research and ultimately contribute to the quality of care for these infants. Recommendations for nursing practice, education, and research are suggested.