Original Manuscript Quality versus quantity: The complexities of quality of life determinations for neonatal nurses Janet Green University of Technology Sydney, Australia Philip Darbyshire Monash University, Australia; Flinders University of South Australia, Australia; Philip Darbyshire Consulting Ltd, Australia Anne Adams Retired Debra Jackson Oxford Brookes University, UK; Oxford University Hospitals NHS Foundation Trust, UK Abstract 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 Corresponding author: Janet Green, Faculty of Health, University of Technology Sydney, PO Box 123, Broadway, Ultimo, NSW 2070, Australia. Email: Janet.Green@uts.edu.au Nursing Ethics 1–19 ª The Author(s) 2016 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733015625367 nej.sagepub.com by guest on January 26, 2016 nej.sagepub.com Downloaded from