Background:The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to (...) be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years?Research question:The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation.Participants:Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.Ethical considerations:Ethical processes and procedures have been adhered to by the researchers.Findings:A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field.Conclusion:Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)

Improved life sustaining technology in the neonatal intensive care unit (NICU) has resulted in an increased probability of survival in extremely premature babies. Miracle baby stories in the popular press are a regular occurrence and these reports are often the first source from which the general public learn about extremely premature babies. The research from which this paper is drawn sought to explore the care‐giving and ethical dilemmas of neonatal nurses when caring for extremely premature babies 24 weeks gestation and (...) less. This current paper aims to outline the views of neonatal nurses on miracle baby stories in the media. Data were collected via a questionnaire to 760 Australian neonatal nurses with 414 returned, representing a response rate of 54.4%. Narrative was collected from semi‐structured interviews with 24 experienced neonatal nurses in NSW, Australia. A qualitative approach utilising thematic analysis was utilised to analyse the data. The theme the myth of the miracle baby is seen as generating myths and unrealistic expectations on the part of vulnerable families and the public. Neonatal nurses, as the primary caregivers for tiny babies and their families, viewed popular media publications with suspicion, believing published reports to be incomplete, inaccurate and biased towards the positive. (shrink)

Background: Nurses and midwives have a professional obligation to promote health and prevent disease, and therefore they have an essential role to play in vaccination. Despite this, some nurses and midwives have been found to take an anti-vaccination stance and promulgate misinformation about vaccines, often using Facebook as a platform to do so. Research question: This article reports on one component and dataset from a larger study – ‘the positives, perils and pitfalls of Facebook for nurses’. It explores the specific (...) issue of nurses and midwives who take an anti-vaccination stance, deemed to be unprofessional by crossing professional boundaries and by providing medical information on Facebook that is not within their scope of practice. Participants: Data were collected via an online worldwide survey from nurse and midwife participants, distributed and ‘snowballed’ through relevant nursing and midwifery groups on Facebook. In total, 1644 Registered Nurses and Midwives, and Enrolled Nurses worldwide attempted the online survey. There were 1100 completed surveys and 54 partially completed surveys. Semi-structured interviews were also conducted online using Skype® with 17 participants in Australia. Ethical considerations: Ethical processes and procedures have been adhered to relating to privacy, confidentiality and anonymity of the participants. Findings/results: A mixed-methods approach was used, including descriptive and content analysis of the quantitative survey data and thematic analysis of the qualitative interview data. The main theme ‘blurred boundaries’ was generated, which comprised three sub-themes: ‘follow the science, ‘abuse of power and erosion of trust’ and ‘the moral and ethical responsibility to safeguard public health’. The results offer an important and unique understanding of how nurses and midwives interpret the conduct of fellow health professionals as unprofessional and crossing the professional boundary if they used Facebook to promulgate anti-vaccination messages and/or give medical advice online. Conclusion: There are many positives and negatives for nurses and midwives associated with using Facebook for personal and professional communication, which is in keeping with the results of the larger study from which this article is taken. Professional behaviour is a key theme in the larger research as is the ethical construct of ‘every act has a consequence’; however, in this article, the theme ‘blurred boundaries’ offers an overall understanding of how nurses and midwives interpret the behaviour of their colleagues who espouse anti-vaccination sentiment and/or give medical advice online that is outside their scope of practice and education. (shrink)