Patient experiences of codesigned rehabilitation interventions in hospitals: a rapid review.

BACKGROUND: Codesign strengthens partnerships between healthcare workers and patients. It also facilitates collaborations supporting the development, design and delivery of healthcare services. Prior rehabilitation reviews have focused mainly on the clinical and organisational outcomes of codesign with less focus on the lived experience of rehabilitation patients. OBJECTIVE: To explore patient experiences of codesigned hospital rehabilitation interventions. DESIGN: Rapid review and evidence synthesis of the literature. DATA SOURCES: CINAHL, MEDLINE, Embase and Cochrane were searched from 1 January 2000 to 25 April 2022. STUDY SELECTION: Studies reporting patient experiences of codesigned rehabilitation interventions in hospitals. RESULTS: 4156 studies were screened, and 38 full-text studies were assessed for eligibility. Seven studies were included in the final rapid review. Five out of the seven studies involved neurological rehabilitation. All eligible studies used qualitative research methods. The main barriers to codesign were related to staffing and dedicated time allocated to face-to-face patient-therapist interactions. High-quality relationships between patients and their therapists were a facilitator of codesign. Thematic synthesis revealed that codesigned rehabilitation interventions can enable a meaningful experience for patients and facilitate tailoring of treatments to align with individual needs. Personalised rehabilitation increases patient involvement in rehabilitation planning, delivery and decision-making. It also promotes positive feelings of empowerment and hope. CONCLUSION: This rapid review supports the implementation of codesigned rehabilitation interventions to improve patient experiences in hospitals. PROSPERO REGISTRATION NUMBER: CRD42021264547.

Psychological safety between pediatric residents and nurses and the impact of an interdisciplinary simulation curriculum.

BACKGROUND: Effective teamwork in interdisciplinary healthcare teams is necessary for patient safety. Psychological safety is a key component of effective teamwork. The baseline psychological safety on pediatric inpatient healthcare teams is unknown. The purpose of this study is to determine the baseline psychological safety between pediatric nurses and residents and examine the impact of an interdisciplinary nighttime simulation curriculum. METHODS: A convergent, multistage mixed methods approach was used. An interprofessional simulation curriculum was implemented fall 2020 to spring 2021. Qualitative focus group data and quantitative survey data on team psychological safety were collected and compared, both pre- and post-intervention and across nurses and residents. Thematic analysis of the qualitative data was conducted, and themes integrated with survey findings. RESULTS: Data were collected from 30 nurses and 37 residents pre-intervention and 32 and 38 post-intervention, respectively. Residents and nurses negatively rated psychological safety (pre-intervention mean = 3.40 [SD = 0.72]; post-intervention mean = 3.35 [SD = 0.81]). At both times psychological safety was rated significantly lower for residents (pre-intervention mean = 3.11 [SD = 0.76], post-intervention mean = 2.98 [SD = 0.84]) than nurses (pre-intervention mean = 3.76 [SD = 0.45], post-intervention mean = 3.79 [SD = 0.50]), all P < .001. Qualitative analysis identified six integrated themes: (1) influence of existing relationships on future interactions, (2) unsatisfactory manner and frequency of communication, (3) unsatisfactory resolution of disagreements (4) overwhelming resident workload impairs collaboration, (5) interpersonal disrespect disrupts teamwork, and (6) interprofessional simulation was useful but not sufficient for culture improvement. CONCLUSION: Resident-nurse team psychological safety ratings were not positive. While interprofessional simulation curriculum shows promise, additional efforts are needed to improve psychological safety among residents and nurses.

Creation of an Electronic Resource Repository for Differences of Sex Development (DSD): Collaboration Between Advocates and Clinicians in the DSD-Translational Research Network.

INTRODUCTION: People with differences of sex development (DSD) and their families need education about these conditions while receiving emotional and peer support to participate in shared decision-making, reduce social isolation, and optimize physical and psychosocial outcomes. Barriers to education and support include limited knowledge and awareness by healthcare providers, tension among patient and medical communities, varied quality of educational resources, and the sensitive nature of DSD. We aimed to create an electronic repository of vetted quality online resources about DSD. METHODS: The electronic resource repository (e-RR) was a collaboration between affected individuals and advocates and healthcare providers in the DSD-Translational Research Network (DSD-TRN), an NIH-supported consortium of US teams committed to standardizing and optimizing care in DSD. The e-RR development and ongoing growth involved: (1) identification of resources by the project team (3 advocates and 1 physician), (2) evaluation and feedback by DSD-TRN clinical teams, (3) creation of the e-RR, and (4) review and revision. Twitter-like descriptions accompanied each entry; resources were categorized by target age, audience, and condition. RESULTS: Thirty-seven web-based educational, peer and advocacy support, and clinician-oriented resources were reviewed. Eight of 10 DSD-TRN teams responded to a survey regarding resource inclusion. Awareness of individual resources varied widely. Consensus was achieved when opinions differed; 30 resources were included. The e-RR is available online and as a downloadable booklet at http://www.accordalliance.org/resource-guide/. CONCLUSION: The e-RR increases awareness of and access to vetted educational and support resources for those with DSD and healthcare providers. It represents important collaboration between advocates and providers.

'Blurred boundaries': When nurses and midwives give anti-vaccination advice on Facebook.

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 (66.9%) completed surveys and 54 partially (33.1%) 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.

Patient experiences of co-designed rehabilitation interventions: protocol for a rapid review.

INTRODUCTION: Patient-centred care can be facilitated by co-design, which refers to collaboration between healthcare professionals and consumers in producing and implementing healthcare. Systematic reviews on co-design have mainly focused on the effectiveness of co-produced healthcare interventions. Less attention has been directed towards the experiences of patients in co-designed interventions. This rapid review aims to explore patient experiences of co-designed rehabilitation interventions and inform rehabilitation decision-making. METHODS AND ANALYSIS: A rapid review will expedite timely information on co-design experiences for stakeholders. Four electronic databases, including Cochrane CENTRAL, MEDLINE, Embase and CINAHL, will be searched for papers published from 1 January 2000 to 1 January 2022. The Cochrane Risk of Bias tool will be used for randomised trials. Critical appraisal checklists from The Joanna Briggs Institute shall evaluate the risk of bias of non-randomised trials and qualitative studies. A narrative synthesis will be provided for the quantitative studies. Thematic synthesis will be conducted on qualitative findings. The overall strength of the evidence will be measured using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) framework for quantitative investigations and the GRADE-Confidence in Evidence from Reviews of Qualitative Research for qualitative studies. The results will be presented using narrative summaries, identified themes, summary tables, flow charts and quantitative statistical analyses. ETHICS AND DISSEMINATION: Ethics approval is not required for the review. The protocol and rapid review will be submitted to an online, open access and peer-reviewed journal for publication. The review findings will be rapidly translated to consumers, clinicians, healthcare leaders, organisations, researchers and policy makers via publications, evidence summaries, conferences, workshops, websites, social media and online events. PROSPERO REGISTRATION NUMBER: CRD42021264547.

Exploring the knowledge of community-based nurses in supporting parents of preterm babies at home: A survey-based study.

AIM: This study aimed to investigate the confidence levels, knowledge base and learning needs of community-based nurses relating to the care of preterm babies and parents, to explore what education is required and in what format. DESIGN: An online survey methodology was used. METHODS: A 32-item questionnaire was distributed via social media platforms to community-based nurses in Australia. RESULTS: Descriptive analysis was undertaken relating to knowledge base, confidence levels, previous training, learning and resource needs and barriers to education. It was deemed vital to expand confidence and knowledge in this area. Gaps in learning resources were identified and a need for more training in topics such as developmental outcomes, feeding, expected milestones, weight gain, growth trajectories and supporting parents. Online resources were the preferred format to teach key knowledge to community-based health professionals, tailored to the specific features of preterm babies and support needs of parents.

Breastfeeding in the context of the COVID-19 pandemic: A discussion paper.

Breastfeeding offers one of the most fundamental global health benefits for babies. Breastmilk is lifesaving, providing not only nutrition but immunologic benefits and as such is strongly supported by the World Health Organization and leading healthcare associations worldwide. When the COVID-19 pandemic started in 2020, the impact of the restrictions to prevent the spread of the disease created challenges and questions about provision of safe, quality care, including breastfeeding practices, in a new 'normal' environment. Mothers were temporarily separated from their babies where infection was present or suspected, parents were prevented from being present on neonatal units and vital breastfeeding support was prevented. This discussion paper provides an overview of essential areas of knowledge related to practice for neonatal nurses and midwives who care for breastfeeding mothers and babies, in the context of the COVID-19 pandemic and the latest global guidance. Three areas will be discussed; the protective benefits of breastfeeding, keeping breastfeeding mothers and babies together and supporting mothers to breastfeed their babies. Finally, care recommendations are presented to serve as a summary of key points for application to practice for neonatal nurses and midwives.

Exploring modifiable risk-factors for premature birth in the context of COVID-19 mitigation measures: A discussion paper.

During the COVID-19 pandemic, parents with sick or premature babies have faced challenges following admission to a neonatal unit due to the imposed lock-down restrictions on social contact, hospital visitation and the wearing of personal protective equipment. The negative short-term impact on neonatal care in relation to the prevention of close proximity, contact and bonding between parents and babies is potentially significant. However, an interesting finding has been reported of a reduction in premature birth admissions to the neonatal intensive care unit during the pandemic, raising important questions. Why was this? Was it related to the effect of the modifiable risk-factors for premature birth? This discussion paper focuses on an exploration of these factors in the light of the potential impact of COVID-19 restrictions on neonatal care. After contextualising both the effect of premature birth and the pandemic on neonatal and parental short-term outcomes, the discussion turns to the modifiable risk-factors for premature birth and makes recommendations relevant to the education, advice and care given to expectant mothers.

The implications of face masks for babies and families during the COVID-19 pandemic: A discussion paper.

COVID-19 has changed the way that newborn babies are cared for within the neonatal setting due to the introduction of social distancing and wearing of face masks to limit the spread of the infection. Potential implications exist related to the normal development of bonding and connections with others. This paper discusses the importance of face to face interactions for early attachment between babies and parents within the context of relevant underpinning developmental theory. Mask wearing can also potentially impact relational communication, requiring us to change our current ways of working. Decreasing face to face interactions and relational communication, along with key recommendations for both parents and health professionals are further highlighted to mitigate the potential negative effects of masks on long-term development related to human connection and attachment.

Functional Assessment of Fatigue and Other Patient-Reported Outcomes in Patients Enrolled in the Global aHUS Registry.

INTRODUCTION: Atypical hemolytic uremic syndrome (aHUS) is a progressive and potentially life-threatening disease characterized by complement-mediated thrombotic microangiopathy. Patients with aHUS may experience fatigue, which can negatively impact their lives, but there is a knowledge gap regarding disease burden in these patients. METHODS: In this longitudinal study, patients with aHUS from the Global aHUS Registry who completed patient-reported outcome assessments (Functional Assessment of Chronic Illness Therapy-Fatigue scale [FACIT-Fatigue], general health status, and work status) at ≥2 time points were assessed relative to treatment status: (i) never treated with eculizumab; (ii) on eculizumab at registry enrollment and continued therapy; and (iii) started eculizumab after registry enrollment. RESULTS: Patients who started eculizumab after the baseline visit (n = 23) exhibited improvements in fatigue (nearly 75% achieved clinically meaningful improvement), improved general health status (55%), and 25% to 30% rate reduction in symptoms of fatigue, weakness, irritability, nausea/vomiting, and swelling at last follow-up. Among patients already on eculizumab at registry enrollment (n = 295) and those never treated (n = 233), these parameters changed minimally relative to the baseline. Emergency room visits and hospital admissions were similar between groups. The number of health care provider visits and work days missed were higher in patients who started eculizumab after registry enrollment. CONCLUSION: These real-world findings confirm the detrimental effects of aHUS on patients' daily lives, including high levels of fatigue and impairments in general health status. The results suggest clinically meaningful improvement in fatigue, other patient-reported outcomes, and symptoms with eculizumab initiation after enrollment into the aHUS registry.

COVID-19 in babies: Knowledge for neonatal care.

Infection is a leading cause of death worldwide in babies under one month of age who are more susceptible to sepsis due to immature host defence mechanisms. Usually, babies may become acutely unwell from infective pathogens due to specific differences in their respiratory and immune systems. However, with the COVID-19 virus, the focus of this paper, it appears that the neonatal population is not significantly affected in the same way as adults. That said, knowledge about this novel virus is rapidly emerging. Therefore, it is vital that neonatal nurses, midwives and other healthcare professionals are adequately informed and educated about the potential impact on neonatal practice. This review paper draws upon key findings and themes from a selection of recent literature to provide an overview of current knowledge on COVID-19 and the implications for care within the neonatal field. The discussion focuses on the nature of COVID-19, its pathophysiology and transmission relevant to maternal and neonatal care. This is followed by implications for practice; namely, maternal issues, the importance of human breast milk, neonatal care relating to parenting and specific management before a final review of the current World Health Organization guidance.

From Bimodal Hearing to Sequential Bilateral Cochlear Implantation in Children-A Within-Subject Comparison.

OBJECTIVE: To evaluate the performance changes after sequential bilateral cochlear implantation in a pediatric population of bimodal cochlear implant (CI) users. To evaluate the factors which influence the parental and recipient decision to discontinue hearing aid use and seek a second implant. STUDY DESIGN: Retrospective case review, within-subject comparison. SETTING: Tertiary referral center. PATIENTS: Thirty-one pediatric (<18 yr) bimodal CI users who underwent sequential bilateral CI. INTERVENTIONS: Sequential bilateral CI. MAIN OUTCOME MEASURES: Parental and/or recipient's reasons for discontinuing their hearing aid and pursuing a second implant, device usage from datalogs, speech understanding in the bimodal and bilateral CI condition. RESULTS: Parents/patients were motivated to pursue sequential bilateral CI based on their positive performance with CI1, the expectation of further improvement with a second CI, and the prospect of having a second independently functional ear. In the bimodal condition, mean word recognition score (WRS), sentence recognition in quiet (SIQ), and sentence recognition in noise (SIN) scores were 87.4, 97.3, and 92.9% respectively. At 1-year post-sequential bilateral CI, the mean WRS, SIQ, and SIN score were 92.7, 98.7, and 97.7%, respectively. The improvement in bilateral CI speech scores compared with bimodal scores was statistically significant for WRS (p = 0.015). A ceiling effect limited the ability to detect further meaningful differences on speech perception testing. CONCLUSIONS: The bilateral CI condition demonstrates equivalent or slightly superior performance compared with the bimodal condition. Several non-speech benefits were elicited from parents as reasons for pursuing a second implant. Close monitoring of the residual acoustic hearing, inquiring about the perceived benefits provided by the HA, and early counseling regarding the potential for sequential bilateral CI are important aspects in determining if and when a second implant is indicated.

Care of the adolescent patient with congenital adrenal hyperplasia: Special considerations, shared decision making, and transition.

The care of infants with congenital adrenal hyperplasia has recently been examined and principles of shared decision making are being used to aid families at that crucial stage of care. Although there is no rigorous data to support delay of surgery, some families are choosing to wait until the patient can participate in choosing the course of care. Whether patients undergo reconstructive procedures or not in the newborn period, they may need or desire revision or primary surgeries as an adolescent or young adult. The first priority for one of these young, now more autonomous, patients is to help them take charge of their own care and develop an understanding of their medical needs. In the process of providing that education, providers and teams can connect to the patient, their caregivers and advocates in a way that allows further investigation into possible medical and surgical needs in a less pressurized situation.

Development of the Halifax Visual Scanning Test: A New Measure of Visual-Spatial Neglect for Personal, Peripersonal, and Extrapersonal Space.

OBJECTIVES: Visual-spatial neglect is a common attentional disorder after right-hemisphere stroke and is associated with poor rehabilitation outcomes. The presence of neglect symptoms has been reported to vary across personal, peripersonal, and extrapersonal space. Currently, no measure is available to assess neglect severity equally across these spatial regions and may be missing subsets of symptoms or patients with neglect entirely. We sought to provide initial construct validity for a novel assessment tool that measures neglect symptoms equally for these spatial regions: the Halifax Visual Scanning Test (HVST). METHODS: In Study I, the HVST was compared to conventional measures of neglect and functional outcome scores (wheelchair navigation) in 15 stroke inpatients and 14 healthy controls. In Study II, 19 additional controls were combined with the control data from Study I to establish cutoffs for impairment. Patterns of neglect in the stroke group were examined. RESULTS: In Study I, performance on all HVST subtests were correlated with the majority of conventional subtests and wheelchair navigation outcomes. In Study II, neglect-related deficits in visual scanning showed dissociations across spatial regions. Four inpatients exhibited symptoms of neglect on the HVST that were not detected on conventional measures, one of which showed symptoms in personal and extrapersonal space exclusively. CONCLUSIONS: The HVST appears a useful measure of neglect symptoms in different spatial regions that may not be detected with conventional measures and that correlates with functional wheelchair performance. Preliminary control data are presented and further research to add to this normative database appears warranted.

The forgotten mothers of extremely preterm babies: A qualitative study.

AIMS AND OBJECTIVES: To explore the experiences of mothers of extremely premature babies during their Neonatal Intensive Care Unit stay and transition home. BACKGROUND: Mothers of extremely preterm infants (28 weeks' gestation or less) experience a continuum of regular and repeated stressful and traumatic events, during the perinatal period, during the Neonatal Intensive Care Unit stay, and during transition home. METHOD: An interpretive description method guided this study. Ten mothers of extremely premature infants who had been at home for less than six months were recruited via a Facebook invitation to participate in semi-structured telephone interviews exploring their experiences in the Neonatal Intensive Care Unit and the transition home. The data were examined using a six-phase thematic analysis approach. The COREQ checklist has been used. RESULTS: Two main themes emerged: (a) things got a bit dire; and (b) feeling a failure as a mother. Participants had a heightened risk of developing a mental disorder from exposure to multiple risk factors prior to and during birth, as well as during the postnatal period in the Neonatal Intensive Care Unit and their infant's transition to home. Mothers highlighted the minimal support for their mental health from healthcare professionals, despite their regular and repeated experience of traumatic events. CONCLUSION: The mothers were at high risk of developing post-traumatic stress symptoms and/or other mental health issues. Of note, study participants relived the trauma of witnessing their infant in the Neonatal Intensive Care Unit, demonstrated hypervigilance behaviour and identified lack of relevant support needed when their infant was at home. RELEVANCE TO CLINICAL PRACTICE: This study highlights the need for nurses to include a focus on the mothers' psychosocial needs. Supporting maternal mental health both improves maternal well-being and enables mothers to be emotionally available and responsive to their extremely preterm infant.

Temporal Modulation Detection in Children and Adults With Cochlear Implants: Initial Results.

OBJECTIVES: The auditory experience of early deafened pediatric cochlear implant (CI) users is different from that of postlingually deafened adult CI users due to disparities in the developing auditory system. It is therefore expected that the auditory psychophysical capabilities between these two groups would differ. In this study, temporal resolving ability was investigated using a temporal modulation detection task to compare the performance outcomes between these two groups. DESIGN: The minimum detectable modulation depth of amplitude modulated broadband noise at 100 Hz was measured for 11 early deafened children with a CI and 16 postlingually deafened adult CI users. RESULTS: Amplitude modulation detection thresholds were significantly lower (i.e., better) for the pediatric CI users than for the adult CI users. Within each group, modulation detection thresholds were not significantly associated with chronologic age, age at implantation, or years of CI experience. CONCLUSIONS: Early implanted children whose auditory systems develop in response to electric stimulation demonstrate better temporal resolving abilities than postlingually deafened adult CI users. This finding provides evidence to suggest that early implanted children might benefit from sound coding strategies emphasizing temporal information.

Parents' views on preparation to care for extremely premature infants at home.

AIM: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for extremely premature infants at home. METHOD: A narrative approach was drawn on to facilitate data collection, through face-to-face semi-structured interviews with 14 parents of extremely premature infants. FINDINGS: Constant comparative analysis was used to allow the emergence of five key research themes - emotional and mental health of parents, uncertain outcomes, ongoing health needs of the baby, educational needs of health professionals, and parental support and preparation for transition home. CONCLUSION: Parental experience of being discharged home with a premature baby can be emotionally challenging and necessitates a range of support mechanisms to help them to cope with this period of transition. Health professionals can direct parents to appropriate counselling services, resources and peer support groups. Tailored education is needed for community-based health professionals, such as health visitors, to equip them to support parents practically and emotionally during the transition home and beyond. In addition, health professionals can learn much from parents about what is needed to support them.

Neonatal nurses' response to a hypothetical premature birth situation: What if it was my baby?

BACKGROUND:: Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities. RESEARCH QUESTION:: The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks' gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of 'what if it was me and my baby', or what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby. 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:: Relevant ethical approvals have been obtained by the researchers. FINDINGS:: A qualitative approach was used to analyse the data. The theme 'imagined futures' was generated which comprised three sub-themes: 'choice is important', 'not subjecting their own baby to treatment' and 'nurses and outcome predictions'. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies. CONCLUSION:: The theme 'imagined futures' offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses' past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks' gestation or less.

Nurses' online behaviour: lessons for the nursing profession.

Social networking is popular online activity; however, like many activities on the internet, there are some privacy risks and concerns associated with its use. Recently, an increasing number of nurses have been censured or asked to appear before regulatory or registering authorities for unprofessional behaviour on social media sites. Problem behaviours identified include: inappropriate content and postings, crossing professional boundaries and breaching patient privacy and confidentiality. This discussion paper aims to give the nursing profession an understanding of how their online behaviour can impact on their professionalism, and how they can avoid problematic situations when using social media (Facebook). This exploratory discussion paper will inform a study researching nurses' online behaviour. Social media is here to stay and nurses need to navigate the complexities of the boundaries between the personal and the professional. Nurses need to learn to balance the growing usefulness of social media, with the legalities and etiquette of the online environment.

Quality versus quantity: The complexities of quality of life determinations for neonatal nurses.

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.