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ImportanceVariation in attitudes between health care professionals involved in the counseling of parents facing extremely preterm birth (ObjectiveTo explore the attitudes of health care professionals involved in the counseling of parents facing preterm birth on the treatment of extremely preterm infants.Design, Setting, and ParticipantsThis qualitative study used Q methods to explore the attitudes of neonatal nurses, neonatologists, midwives, and obstetricians involved in the care of extremely preterm infants in 4 UK National Health Service perinatal centers between February 10, 2020, and April 30, 2021. Each participating center had a tertiary level neonatal unit and maternity center. Individuals volunteered participation through choosing to complete the study following a presentation by researchers at each center. A link to the online Q study was emailed to all potential participants by local principal investigators. Participants ranked 53 statements about the treatment of extremely preterm infants in an online quasi-normal distribution grid from strongly agree (6) to strongly disagree (−6).Main Outcomes and MeasuresDistinguishing factors per professional group (representing different attitudes) identified through by-person factor analysis of Q sort-data were the primary outcome. Areas of shared agreement (consensus) between professional groups were also explored. Q sorts achieving a factor loading of greater than 0.46 (P ResultsIn total, 155 health care professionals volunteered participation (128 [82.6%] women; mean [SD] age, 41.6 [10.2] years, mean [SD] experience, 14.1 [9.6] years). Four distinguishing factors were identified between neonatal nurses, 3 for midwives, 5 for neonatologists, and 4 for obstetricians. Analysis of factors within and between professional groups highlighted significant variation in attitudes of professionals toward parental engagement in decision-making, the perceived importance of potential disability in decision-making, and the use of medical technology. Areas of consensus highlighted that most professionals disagreed with statements suggesting disability equates to reduced quality of life. The statement suggesting the parents’ decision was considered the most important when considering neonatal resuscitation was placed in the neutral (middistribution) position by all professionals.Conclusions and RelevanceThe findings of this qualitative study suggest that parental counseling at extremely low gestations is a complex scenario further complicated by the differences in attitudes within and between professional disciplines toward treatment approaches. The development of multidisciplinary training encompassing all professional groups may facilitate a more consistent and individualized approach toward parental engagement in decision-making.

Objective Genomics is increasingly used for diagnostic testing in children. This study describes the expectations of parents whose child received genomic testing and whether or not they were met. Methods A diverse stratified, purposive sample of parents of 22 children in New York City was interviewed using a semi-structured guide. Genomic test results were positive, negative, or uncertain. Results Parents expressed their expectations in narrative and numeric fashion. Parents expected that their child’s test would have a direct effect on their child’s diagnosis. Some believed that results would be definitive, while others recognized testing limitations. Expectations reflected parents’ hope to find a diagnosis and led to disappointment when results were uninformative or did not impact clinical management. Conclusion Results suggest pre-test genetic counseling emphasize the low likelihood of actionable results; however, parents’ expectations of genomics’ diagnostic capabilities are strongly rooted in their need to end the diagnostic odyssey and may be difficult to manage. Practice Implications Parents’ hope for a resolution and effective treatment for their child is a powerful context in which genetic counseling is heard. Clinicians who provide genomic testing should continue to acknowledge parents’ preconceptions. Additional research in other settings will help understand how to best address and manage parent expectations of genomic medicine.

OBJECTIVE To explore the concepts and strategies parents employ when considering maternal-fetal surgery (MFS) as an option for the management of spina bifida (SB) in their fetus, and how this determines the acceptability of the intervention. METHODS A two-centre interview study enrolling parents whose fetuses with SB were eligible for MFS. To assess differences in acceptability, parents opting for MFS (n = 24) were interviewed at three different moments in time: prior to the intervention, directly after the intervention and 3-6 months after birth. Parents opting for termination of pregnancy (n = 5) were interviewed only once. Themes were identified and organised in line with the framework of acceptability. RESULTS To parents opting for MFS, the intervention was perceived as an opportunity that needed to be taken. Feelings of parental responsibility drove them to do anything in their power to improve their future child's situation. Expectations seemed to be realistic yet were driven by hope for the best outcome. None expressed decisional regret at any stage, despite substantial impact and, at times, disappointing outcomes. For the small group of participants, who decided to opt for termination of pregnancy (TOP), MFS was not perceived as an intervention that substantially could improve the quality of their future child's life. CONCLUSION Prospective parents opting for MFS were driven by their feelings of parental responsibility. They recognise the fetus as their future child and value information and care focusing on optimising the child's future health. In the small group of parents opting for TOP, MFS was felt to offer insufficient certainty of substantial improvement in quality of life and the perceived severe impact of SB drove their decision to end the pregnancy.

PurposeUse of genomic sequencing is increasing at a pace that requires technological solutions to effectively meet the needs of a growing patient population. We developed GUÍA, a web-based application, to enhance the delivery of genomic results and related clinical information to patients and families.MethodsGUÍA development occurred in 5 phases: formative research, content development, user interface design, stakeholder/community member input, and web application development. Development was informed by qualitative research involving parents (N=22) whose children underwent genomic testing. Participants enrolled in the NYCKidSeq pilot study (N=18) completed structured feedback interviews post-result disclosure using GUÍA. Genetic specialists, researchers, patients, and community stakeholders provided their perspectives on GUÍA’s design to ensure technical, cultural, and literacy appropriateness.ResultsNYCKidSeq participants responded positively to the use of GUÍA to deliver their children’s results. All participants (N=10) with previous experience with genetic testing felt GUÍA improved result disclosure, and 17 (94%) participants said the content was clear.ConclusionsGUÍA communicates complex genomic information in an understandable and personalized manner. Initial piloting demonstrated GUÍA’s utility for families enrolled NYCKidSeq pilot study. Findings from the NYCKidSeq clinical trial will provide insight into GUÍA’s effectiveness in communicating results among diverse, multilingual populations.

ImportanceGlobally accepted recommendations suggest that a woman should be between 19 weeks and 25 weeks plus 6 days of pregnancy to be considered eligible for fetal closure of open spina bifida. A fetus requiring emergency delivery during surgery is therefore potentially considered viable and thus eligible for resuscitation. There is little evidence, however, to support how this scenario is addressed in clinical practice.ObjectiveTo explore current policy and practice for fetal resuscitation during fetal surgery for open spina bifida in centers undertaking fetal surgery.Design, Setting, and ParticipantsAn online survey was designed to identify current policies and practices in place to support fetal surgery for open spina bifida, exploring experiences and management of emergency fetal delivery and fetal death during surgery. The survey was emailed to 47 fetal surgery centers in 11 countries where fetal spina bifida repair is currently performed. These centers were identified through the literature, the International Society for Prenatal Diagnosis center repository, and an internet search. Centers were contacted between January 15 and May 31, 2021. Individuals volunteered participation through choosing to complete the survey.Main Outcomes and MeasuresThe survey comprised 33 questions of mixed multiple choice, option selection, and open-ended formats. Questions explored policy and practice supporting fetal and neonatal resuscitation during fetal surgery for open spina bifida.ResultsResponses were obtained from 28 of 47 centers (60%) in 11 countries. Twenty cases of fetal resuscitation during fetal surgery during the last 5 years were reported across 10 centers. Four cases of emergency delivery during fetal surgery after maternal and/or fetal complications during the last 5 years were reported across 3 centers. Fewer than half the 28 centers (n = 12 [43%]) had policies in place to support practice in the event of either imminent fetal death (during or after fetal surgery) or the need for emergency fetal delivery during fetal surgery. Twenty of 24 centers (83%) reported preoperative parental counseling on the potential need for fetal resuscitation prior to fetal surgery. The gestational age at which centers would attempt neonatal resuscitation after emergency delivery varied from 22 weeks and 0 days to more than 28 weeks.ConclusionsIn this global survey study of 28 fetal surgical centers, there was no standard practice about how fetal resuscitation or subsequent neonatal resuscitation was managed during open spina bifida repair. Further collaboration between professionals and parents is required to ensure sharing of information to support knowledge development in this area.

BackgroundThe provision of neonatal care is variable and commonly lacks adequate evidence base; strategic development of methodologically robust clinical trials is needed to improve outcomes and maximise research resources. Historically, neonatal research topics have been selected by researchers; prioritisation processes involving wider stakeholder groups have generally identified research themes rather than specific questions amenable to interventional trials.ObjectiveTo involve stakeholders including parents, healthcare professionals and researchers to identify and prioritise research questions suitable for answering in neonatal interventional trials in the UK.DesignResearch questions were submitted by stakeholders in population, intervention, comparison, outcome format through an online platform. Questions were reviewed by a representative steering group; duplicates and previously answered questions were removed. Eligible questions were entered into a three-round online Delphi survey for prioritisation by all stakeholder groups.ParticipantsOne hundred and eight respondents submitted research questions for consideration; 144 participants completed round one of the Delphi survey, 106 completed all three rounds.ResultsTwo hundred and sixty-five research questions were submitted and after steering group review, 186 entered into the Delphi survey. The top five ranked research questions related to breast milk fortification, intact cord resuscitation, timing of surgical intervention in necrotising enterocolitis, therapeutic hypothermia for mild hypoxic ischaemic encephalopathy and non-invasive respiratory support.ConclusionsWe have identified and prioritised research questions suitable for practice-changing interventional trials in neonatal medicine in the UK at the present time. Trials targeting these uncertainties have potential to reduce research waste and improve neonatal care.

We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in two neonatal intensive care units. The coding framework was developed from a qualitative analysis of the recordings using the method of conversation analysis (CA). Codes underpinned by our qualitative analysis had in the main moderate to strong agreement (inter-rater reliability) between coders; three codes had lower agreement reflecting the use of euphemisms for death and disability. Coding these interactions confirmed the significance of the doctors' talk in terms of parental involvement in decision-making, whilst highlighting areas warranting further qualitative analysis. This quantifiable representation provides a novel outcome based on evidence that is internal to the conversation rather than influenced by other factors related to the baby's care or outcome.

ObjectiveTo understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments.DesignFormal conversations were recorded, transcribed and analysed according to the conventions and methods of conversation analysis.SettingTwo tertiary neonatal intensive care units.ParticipantsConsultant neonatal specialists and families.Main outcome measuresWe used conversation analysis and developed an inductive coding scheme for conversations based on the introduction of limiting life-sustaining treatments and on the parental responses.ResultsFrom recordings with 51 families, we identified 27 conversations about limiting life support with 20 families and 14 doctors. Neonatologists adopted three broad strategies: (1) ‘recommendations’, in which one course of action is presented and explicitly endorsed as the best course of action, (2) a ‘single-option choice’ format (conditional: referring to a choice that should be made, but without specifying or listing options), and (3) options (where the doctor explicitly refers to or lists options). Our conversation analysis-informed coding scheme was based on the opportunities available for parents to ask questions and assert their preference with minimal interactional constraint or pressure for a certain type of response. Response scores for parents presented with conditional formats (n=15, median 5.0) and options (n=10, median 5.0) were significantly higher than for those parents presented with ‘recommendations’ (n=16, median 3.75; p=0.002) and parents were more likely to express preferences (p=0.005).ConclusionEncouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement and less misalignment between the conversational partners.

Background Open spina bifida (OSB) is one of the most common congenital central nervous system defects and leads to long-term physical and cognitive disabilities. Open fetal surgery for OSB improves neurological outcomes and reduces the need for ventriculoperitoneal shunting, compared to postnatal surgery, but is associated with a significant risk of prematurity and maternal morbidity. Fetoscopic surgery comes with less maternal morbidity, yet the question remains whether the procedure is neuroprotective and reduces prematurity. Comparison of outcomes between different treatment options is challenging due to inconsistent outcome reporting. We aim to develop and disseminate a core outcome set (COS) for fetal OSB, to ensure that outcomes relevant to all stakeholders are collected and reported in a standardised fashion in future studies. Methods The COS will be developed using a validated Delphi methodology. A systematic literature review will be performed to identify outcomes previously reported for prenatally diagnosed OSB. We will assess maternal (primary and subsequent pregnancies), fetal, neonatal and childhood outcomes until adolescence. In a second phase, we will conduct semi-structured interviews with stakeholders, to ensure representation of additional relevant outcomes that may not have been reported in the literature. We will include patients and parents, as well as health professionals involved in the care of these pregnancies and children (fetal medicine specialists, fetal surgeons, neonatologists/paediatricians and allied health). Subsequently, an international group of key stakeholders will rate the importance of the identified outcomes using three sequential online rounds of a modified Delphi Survey. Final agreement on outcomes to be included in the COS, their definition and measurement will be achieved through a face-to-face consensus meeting with all stakeholder groups. Dissemination of the final COS will be ensured through different media and relevant societies. Discussion Development and implementation of a COS for fetal OSB will ensure consistent outcome reporting in future clinical trials, systematic reviews and clinical practice guidelines. This will lead to higher quality research, better evidence-based clinical practice and ultimately improved maternal, fetal and long-term childhood outcomes. Trial registration International Prospective Register of Systematic Reviews (PROSPERO) CRD42018104880. Registered on December 5, 2018. Core Outcome Measures in Effectiveness Trials (COMET): 1187

Background The COVID-19 pandemic has resulted in significant changes and restrictions to neonatal care. The aim of this study was to explore the impact of these changes on neonatal nurses globally. Methods We conducted a thematic analysis on written reflections by neonatal nurses worldwide, exploring their experiences of COVID-19. Twenty-two reflections were analysed from eleven countries. Results Thematic analysis revealed 4 main themes relating to the nurses’ role: 1) protector 2) challenges to human quality of care 3) vulnerability and 4) resilience. The measures taken as protector were described as compromising the human qualities of care fundamental to their role. This tension, together with other new challenges, heightened feelings of vulnerability. Concurrently, nurses identified role resilience, including resourcefulness and peer support, which allowed them to navigate the global pandemic. Conclusion By identifying global challenges and strategies to overcome these, neonatal nurses may be better equipped as the pandemic continues. The reflections underscore the importance of family integrated care and the tension created when it is compromised.

Genomic sequencing results need to be effectively communicated across all populations and practice settings. Projects in the Clinical Sequencing Evidence-Generating Research (CSER) consortium enroll diverse racial/ethnic and medically underserved participants across various clinical contexts. This article explores a set of CSER results disclosure cases to expand the evidence base on experiences returning genomic results. Case details were collected using a structured set of questions. We identified common themes in the case set, and assessed challenges and strategies in achieving six relevant results disclosure objectives. CSER-affiliated patient/community stakeholder impressions of the findings were solicited via video conference calls. Seventeen cases across six CSER projects were included. Case themes sorted into four categories: (1) factors influencing participant understanding, (2) participant emotional response, (3) disease burden, and (4) logistical challenges. Challenges meeting results disclosure objectives included a lack of dialogue, health literacy level, unexpected findings, and complex concepts. Strategies were consistent with traditional genetic counseling practice, but also highlighted approaches being evaluated in CSER projects. Patient/community stakeholders supported the identified themes and provided additional suggestions to improve patient understanding and engagement. These experiences add valuable insights into adapting genomic results disclosure practices to best serve all patient populations.

Background Increasingly, genomics is informing clinical practice, but challenges remain for medical professionals lacking genetics expertise, and in access to and clinical utility of genomic testing for minority and underrepresented populations. The latter is a particularly pernicious problem due to the historical lack of inclusion of racially and ethnically diverse populations in genomic research and genomic medicine. A further challenge is the rapidly changing landscape of genetic tests and considerations of cost, interpretation, and diagnostic yield for emerging modalities like whole-genome sequencing. Methods The NYCKidSeq project is a randomized controlled trial recruiting 1130 children and young adults predominantly from Harlem and the Bronx with suspected genetic disorders in three disease categories: neurologic, cardiovascular, and immunologic. Two clinical genetic tests will be performed for each participant, either proband, duo, or trio whole-genome sequencing (depending on sample availability) and proband targeted gene panels. Clinical utility, cost, and diagnostic yield of both testing modalities will be assessed. This study will evaluate the use of a novel, digital platform (GUÍA) to digitize the return of genomic results experience and improve participant understanding for English- and Spanish-speaking families. Surveys will collect data at three study visits: baseline (0 months), result disclosure visit (ROR1, + 3 months), and follow-up visit (ROR2, + 9 months). Outcomes will assess parental understanding of and attitudes toward receiving genomic results for their child and behavioral, psychological, and social impact of results. We will also conduct a pilot study to assess a digital tool called GenomeDiver designed to enhance communication between clinicians and genetic testing labs. We will evaluate GenomeDiver’s ability to increase the diagnostic yield compared to standard practices, improve clinician’s ability to perform targeted reverse phenotyping, and increase the efficiency of genetic testing lab personnel. Discussion The NYCKidSeq project will contribute to the innovations and best practices in communicating genomic test results to diverse populations. This work will inform strategies for implementing genomic medicine in health systems serving diverse populations using methods that are clinically useful, technologically savvy, culturally sensitive, and ethically sound. Trial registration ClinicalTrials.govNCT03738098. Registered on November 13, 2018 Trial Sponsor: Icahn School of Medicine at Mount Sinai Contact Name: Eimear Kenny, PhD (Principal Investigator) Address: Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Pl., Box 1003, New York, NY 10029 Email: eimear.kenny@mssm.edu

Background: Methodological and reporting assessment tools have been developed which allow us to investigate the core outcome set development process Objective: To characterise core outcome sets relevant to women’s and newborn health and assess methodological and reporting quality. Search Strategy: Systematic search using the Core Outcome Measures in Effectiveness Trials (COMET) and the Core Outcomes in Women’s and Newborn Health (CROWN) Initiative databases from inception to March 2020. Selection Criteria: Registered, progressing, and completed core outcome sets. Data Collection and analysis: Descriptive summaries of characteristics and results. Published protocols were assessed using the Core Outcome Set-STAndardised Protocol Items (COS-STAP). Completed core outcome sets were evaluated using COS-STAD (standards for development) and COS-STAR (standards for reporting). Main Results: Eighty studies were identified. Twenty-four studies had published a protocol; four (17%) met all COS-STAP criteria. This was primarily due to poorly defined steering groups and lack of discussion around the potential impact of attrition. Thirty-nine systematic reviews characterized inconsistency in outcome reporting. Twenty studies published a core outcome set development process with four (20%) and three (15%) meeting COS-STAD and COS-STAR recommendations respectively, largely due to variation in patient involvement, outcome selection and the Delphi process Conclusions: Future core outcome set developers should actively engage with the methodological and reporting criteria to enhance the quality of their studies. Clarity is also required within the assessment guidelines as to how these issues should be adequately addressed. We have identified 5 key areas for improvement for future core outcome set developers and wider stakeholders

Objective To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. Method Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher’s exact test. Results When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use ‘recommendations’ or ‘single-option’ choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030). Conclusion Aligning parents to the trajectory of the news about their baby’s poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making. Practice implications Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.

Summary: Genetic counselors are trained to deliver complicated genomic test results to parents of pediatric patients. However, there is limited knowledge on how parents perceive this information and what they understand about the results. This research aims to qualitatively explore parents’ experiences receiving genomic test results for their children. As part of formative research for the NYCKidSeq Study, we recruited a purposive sample of parents of 22 children stratified by child race/ethnicity and test result classification (positive, uncertain, or negative) and conducted in-depth interviews using a semi-structured guide. Analysis was conducted using grounded theory’s constant comparative method across cases and themes. Parents described different elements of understanding: genetics knowledge; significance and meaning of positive, uncertain, or negative results; and implications for the health of their child and family. Parents reported challenges understanding technical details and significance of their child’s results but gladly allowed their providers to be custodians of this information. However, of the different elements of understanding described, parents cared most deeply about being able to understand implications for their child’s and family’s health. These findings suggest that a counseling approach that primarily addresses parents’ desire to understand how to best care for their child and family may be more appropriate than an information-heavy approach focused on technical details. Further research is warranted to confirm these findings in larger parent cohorts and to explore ways genetic counseling can support parents’ preferences without sacrificing important components of parent understanding and overall satisfaction with their experiences with genomic medicine.

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: ‘making recommendations’ and ‘providing options’. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. ‘Making recommendations’ led to misalignment and reduced opportunities for questions and collaboration; ‘providing options’ led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance. A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/watch?v=MyuymxDNupk&feature=youtu.be

The aim of this study was to explore how often the participation of parents in their infants' care and professionals' support for parents was documented in the clinical records and to determine how such participation and support were documented.Comprehensive documentation can facilitate collaboration between parents and healthcare professionals, supporting family-centred care, yet little is known about how this is reflected in practice.A prospective, mixed methods approach was used to analyse the clinical records of newborns.The study was carried out in a large tertiary Neonatal Unit in the United Kingdom, from 2013 - 2014. We analysed the clinical records of 24 critically ill newborns using content analysis and thematic analysis, enabling us to determine the frequency of documented support and participation and how support and participation were documented.We identified four categories of support in the clinical records: "emotional", "spiritual", "social" and "practical support". We also identified instances where parents were encouraged to participate in their infant's care. Frequency differences in the documentation of support between infants facing a redirection of care decision and infants receiving active treatment were found. Two organisational themes were identified: "task focused documentation" and "minimal documentation of parental role". These were grouped together under the global theme "professional accountability". The perspectives and experiences of parents were minimally documented throughout.Documentation of support towards parents and parents' participation in their infants' care was limited in terms of frequency and content. Encouraging regular, detailed documentation of these aspects of care may facilitate family-centred care.

Background Neonatal mortality accounts for nearly three quarters of all infant deaths in Vietnam. The nursing team are the largest professional group working with newborns, however do not routinely receive neonatal training and there is a lack of research into the impact of educational provision. This study explored changes in nursing perceptions towards their role following a neonatal educational intervention. Parents perceptions of nursing care were explored to determine any changes as nurses gained more experience. Method Semi-Structured qualitative interviews were conducted every 6 months over an 18 month period with 16 nurses. At each time point, parents whose infant was resident on the neonatal unit were invited to participate in an interview to explore their experiences of nursing care. A total of 67 parents participated over 18 months. Interviews were conducted and transcribed in Vietnamese before translation into English for manifest content analysis facilitated by NVivo V14. Results Analysis of nursing transcripts identified 14 basic categories which could be grouped (23) into 3 themes: (1) perceptions of the role of the neonatal nurse, (2) perception of the parental role and (3) professional recollections. Analysis of parent transcripts identified 14 basic categories which could be grouped into 3 themes: (1) information sharing, (2) participation in care, and (3) personal experience. Conclusions Qualitative interviews highlighted the short term effect that the introduction of an educational intervention can have on both nursing attitudes towards and parental experience of care in one neonatal unit in central Vietnam. Nurses shared a growing awareness of their role along with its ethical issues and challenges, whilst parents discussed their overall desire for more participation in their infants care. Further research is required to determine the long term impact of the intervention, the ability of nurses to translate knowledge into clinical practice through assessment of nursing knowledge and competence, and the impact and needs of parents. A greater understanding will allow us to continue to improve the experiences of nurses and parents, and highlight how these areas may contribute towards the reduction of infant mortality and morbidity in Vietnam. Electronic supplementary material The online version of this article (doi:10.1186/s12887-017-0909-6) contains supplementary material, which is available to authorized users.

ObjectiveTo explore the experiences of parents of infants admitted to the neonatal intensive care unit towards interaction with healthcare professionals during their infants critical care.DesignSemi-structured interviews were conducted with parents of critically ill infants admitted to neonatal intensive care and prospectively enrolled in a study of communication in critical care decision making. Interviews were transcribed verbatim and uploaded into NVivo V.10 to manage and facilitate data analysis. Thematic analysis identified themes representing the data.ResultsNineteen interviews conducted with 14 families identified 4 themes: (1) initial impact of admission affecting transition into the neonatal unit; (2) impact of consistency of care, care givers and information giving; (3) impact of communication in facilitating or hindering parental autonomy, trust, parental expectations and interactions; (4) parental perception of respect and humane touches on the neonatal unit.ConclusionFactors including the context of infant admission, interprofessional consistency, humane touches of staff and the transition into the culture of the neonatal unit are important issues for parents. These issues warrant further investigation to facilitate individualised family needs, attachment between parents and their baby and the professional team.

Background Adolescence is a common time for the onset of anorexia nervosa (AN), a condition associated with long-term medical and hormonal consequences.

Background: Peptide YY (PYY) is an intestinally derived anorexigen that acts via the Y2 receptor, and Y2 receptor deletion in rodents increases bone formation. Anorexia nervosa (AN) is associated with a deliberate reduction in food intake and low bone density, but endocrine modulators of food intake in AN are not known. In addition, known regulators of bone turnover, such as GH, cortisol, and estrogen, explain only a fraction of the variability in bone turnover marker levels.Hypotheses: We hypothesized that PYY may be elevated in AN compared with controls and may contribute to decreased food intake and bone formation.Methods: Fasting PYY was examined in 23 AN girls and 21 healthy adolescents 12–18 yr old. We also examined GH, cortisol, ghrelin, and leptin (overnight frequent sampling) and fasting IGF-I, estradiol, total T3, and bone markers. Macronutrient intake and resting energy expenditure (REE) were measured.Results: AN girls had higher PYY levels compared with controls (17.8 ± 10.2 vs. 4.8 ± 4.3 pg/ml; P < 0.0001). Predictors of log PYY were nutritional markers, including body mass index (r = −0.62; P < 0.0001), fat mass (r = −0.55; P = 0.0003), and REE (r = −0.51; P = 0.0006), and hormones, including GH (r = 0.38; P = 0.004) and T3 (r = −0.59; P = 0.0001). Body mass index, fat mass, REE, GH, and T3 explained 68% of the variability of log PYY. Log PYY predicted percentage of calories from fat (r = −0.56; P = 0.0002) and independently predicted osteocalcin (r = −0.45; P = 0.003), bone-specific alkaline phosphatase (r = −0.46; P = 0.003), N-telopeptide/creatinine (r = −0.55; P = 0.0003), and deoxypyridinoline/creatinine (r = −0.52; P = 0.001) on regression modeling.Conclusion: Elevated PYY may contribute to reduced intake and decreased bone turnover in AN.