April Monthly Scoping Review

Bereavement support Boyle, F. M., D. Horey, P. F. Middleton and V. Flenady (2020). "Clinical practice guidelines for perinatal bereavement care - An overview." Women Birth 33(2): 107-110.Stillbirth Centre of Research Excellence, Mater Research Institute, The University of Queensland, Brisbane, Australia. Electronic address: f.boyle@uq.edu.au. Stillbirth Centre of Research Excellence, Mater Research Institute, The University of Queensland, Brisbane, Australia; La Trobe University, Melbourne, Australia. Stillbirth Centre of Research Excellence, Mater Research Institute, The University of Queensland, Brisbane, Australia; South Australian Health and Medical Research Institute, Adelaide, Australia. Stillbirth Centre of Research Excellence, Mater Research Institute, The University of Queensland, Brisbane, Australia. BACKGROUND: High quality perinatal bereavement care is critical for women and families following stillbirth or newborn death. It is a challenging area of practice and a difficult area for guideline development due to a sparse and disparate evidence base. AIM: We present an overview of the newly updated Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Excellence guideline for perinatal bereavement care. The guideline aims to provide clear guidance for maternity health care providers and their services to support the provision of care that meets the needs of bereaved parents. DISCUSSION: The Guideline for Respectful and Supportive Perinatal Bereavement Care is underpinned by a review of current research combined with extensive stakeholder consultation that included parents and their organisations and clinicians from a variety of disciplines. The Guideline contains 49 recommendations that reflect five fundamental goals of care: good communication; shared decisionmaking; recognition of parenthood; effective support; and organisational response. CONCLUSION: Best available research, parents' lived experiences and maternity care providers' insights have contributed to a set of implementable recommendations that address the needs of bereaved parents. Camacho Avila, M., I. M. Fernandez Medina, F. R. Jimenez-Lopez, J. Granero-Molina, J. M. Hernandez-Padilla, E. Hernandez Sanchez and C. Fernandez-Sola (2020). "Parents' Experiences About Support Following Stillbirth and Neonatal Death." Advances in Neonatal Care 20(2): 151-160.Gynaecology and Obstetrics Unit, Hospital de Torrevieja, Alicante, Spain (Mr Camacho Avila); Department of Nursing, Physiotherapy and Medicine, University of Almeria, Spain (Drs Fernandez Medina, Jimenez-Lopez, Granero-Molina, Hernandez-Padilla, and Fernandez-Sola); Department of Nursing, University Catolica de San Antonio, Murcia, Spain, and Gynaecology and Obstetrics Unit, Hospital de Torrevieja, Alicante, Spain (Dr Hernandez Sanchez); and Faculty of Health Sciences, Universidad Autonoma de Chile, Temuco, Chile (Dr Fernandez-Sola). BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of this study was to describe and understand the experiences of parents in relation to professional and social support following stillbirth and neonatal death. METHODS: This was a qualitative study based on Gadamer's hermeneutic phenomenology. Twenty-one semistructured interviews were carried out. Inductive analysis was used to find themes based on the data. RESULTS: Twenty-one parents (13 mothers and 8 fathers) from 6 families participated in the study. The analysis identified 2 main themes: (1) "professional care in dealing with parents' grief," with the subthemes "important aspects of professional care," "continuing of pathways of care"; and (2) "effects of social support in parental grief," including the subthemes "the silence that surrounds grieving parents," "family and other children: a key element," and "perinatal loss support groups: a reciprocal help." IMPLICATIONS FOR PRACTICE: Counseling and support according to parents' requirements by an interdisciplinary team of professionals educated in perinatal loss and ethical family-centered care is needed. A social support system for families is necessary to avoid negative emotional consequences. IMPLICATIONS FOR RESEARCH: Further research is needed to analyze midwives' and nurses' experience as facilitators to improve parental grief and the difficulties experienced by the family, other children, and friends of parents with perinatal loss in providing support. Duncan, D. A. (2020). "Death and dying: A systematic review into approaches used to support bereaved children." Review of Education.[Duncan, David A.] Univ Strathclyde, 16 Richmond St, Glasgow G1 1XQ, Lanark, Scotland. Duncan, DA (reprint author), Univ Strathclyde, 16 Richmond St, Glasgow G1 1XQ, Lanark, Scotland. david.duncan@strath.ac.uk Supporting, caring for and working with bereaved children is both daunting and challenging, yet not much is known about how schools can help children to cope with death and dying. The main objective of this study was to identify approaches used to support children who are grieving, and to explore implications for teachers. The use of retrospective autoethnography sets out this review as a practitioner enquirybased project. A systematic review of literature involving school-aged children was undertaken. The focus of these studies was on approaches to death and dying taken by children, parents and teachers-which helped recently bereaved children to cope. The studies all relate to children aged 3-18. Four databases were searched, up to and including the spring of 2019: British Education Index; Child Development & Adolescent Studies; ERIC; and PsycINFO. The included studies were analysed using a qualitative enquiry model which draws on metaethnography. Abstracts and titles of 765 articles were examined. Following the selection process, 15 studies were included. All of the studies were peer-reviewed, published after 2000 and used qualitative methods of data collection (interviews, ethnographies, a case study and observations). Encouraging children to openly communicate, find comfort in various ways and express emotion regularly were the most common approaches. The results indicate that if the correct approaches are taken, children can feel supported during a challenging and fearful time in their lives. Future research is required on the effects of specific teacher-led approaches in schools. Garten, L., M. Globisch, K. von der Hude, K. Jakel, K. Knochel, T. Krones, T. Nicin, F. Offermann, M. Schindler, U. Schneider, B. Schubert and T. Strahleck (2020). "Palliative Care and Grief Counseling in Peri- and Neonatology: Recommendations From the German PaluTiN Group." Front Pediatr 8: 67.Department of Neonatology, Palliative Neonatology Team, Charite-Universitatsmedizin Berlin, Berlin, Germany. Department for Content and Development, German Children's Hospice Association, Olpe, Germany. Association of Premature and At-Risk Born Children, Regional group of Rhineland-Palatinate, Mainz, Germany. Center for Pediatric Palliative Care, University Children's Hospital, Ludwig Maximilian University of Munich, Munich, Germany. University Hospital Zurich/Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland. Department of Obstetrics, Klinikum Hanau, Hanau, Germany. Federal Association of Orphaned Parents and Mourning Siblings in Germany, Leipzig, Germany. Department of Neonatology and Paediatric Intensive Care, Universitatsklinikum Mannheim, Mannheim, Germany. Department of Obstetrics, Universitatsklinikum Jena, Jena, Germany. Roman-Catholic Diocese of Rottenburg-Stuttgart, Department Pastoral Care in Health Care, Universitatsklinikum Tubingen, Tubingen, Germany. Department of Neonatology and Neonatal Intensive Care, Klinikum Stuttgart, Olgahospital, Stuttgart, Germany. Hoven, E., J. Hagstrom, U. Poder, H. Gronqvist and L. von Essen (2020). "Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study." Acta Oncologica 59(3): 351- 357.Clinical Psychology in Healthcare, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden. Caring Sciences, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden. Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement.Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child's death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS).Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p = .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p 14 days. From a gestational age (GA) and birth weightmatched retrospective cohort, 57 control infants were selected. Data were also analysed for subgroup under 30 weeks GA (n=20).Infants in the IFDC group were discharged earlier: median corrected GA (36(+0) (IQR 35(+0)-38(+0)) vs 37(+1) (IQR 36(+3)-38(+4)) weeks; p=0.003), with shorter median LOS (41 (32-63) vs 55 (41-73) days; p=0.022). This was also evident in the subgroup <30 weeks GA (61 (39-82) vs 76 (68-84) days; p=0.035). Special care days were significantly lower in the IFDC group (30 (21-41) vs 40 (31-46); p=0.006). The subgroup of infants (<30 weeks) reached full suck feeding earlier (median: 47 (37-76) vs 72 (66-82) days; p=0.006). CONCLUSION: This is the first reported study from a UK tertiary neonatal unit demonstrating significant benefits of family integrated care programme. The IFDC programme has significantly reduced LOS, resulted in the earlier achievement of full enteral and suck feeds. Barnes, S., Z. Jordan and M. Broom (2020). "Health professionals' experiences of grief associated with the death of pediatric patients: a systematic review." JBI Evid Synth 18(3): 459-515.JBI, Faculty of Health and Medical Sciences, The University of Adelaide, Adelaide, Australia. CQUniversity, Noosaville, Australia. Neonatal Intensive Care Unit, Centenary Hospital for Women and Children, ACT Health, Canberra, Australia. Australian Catholic University, Canberra, Australia. OBJECTIVE: The objective of this review was to synthesize the experiences of health professionals who have experienced grief as a result of a pediatric patient dying. INTRODUCTION: There has been some research into health professionals' grief experiences associated with the death of pediatric patients, but there has not been a review that synthesizes the findings of these experiences. Other related reviews have focused on prenatal, perinatal or adult deaths or the coping strategies employed by health professionals. This review highlights the complexities of experiences faced by pediatric health professionals. INCLUSION CRITERIA: Qualitative studies involving pediatric health professionals working in any healthcare setting who had experienced grief from the death of a patient were considered for inclusion. Studies were conducted in any country, at any time and published in English. METHODS: The search was conducted in PubMed, CINAHL, Embase, PsycINFO, Scopus and ProQuest Dissertations and Theses. The search was completed in January 2019. The review followed principles of meta-aggregation in line with the JBI approach. Methodological quality assessment was based on representation of participants' voices and congruence between research methodology and both research question and analysis of data. RESULTS: Meta-aggregation led to three synthesized findings from 12 qualitative studies that met the inclusion and methodological quality criteria. Studies predominantly included nurses working in a hospital, with sample sizes ranging from six to 25 participants. The synthesized findings were physical, behavioral, psychological or spiritual symptoms; compounding grief; and alleviating grief. Physical, behavioral, psychological, or spiritual symptoms highlighted the various characteristics of grief experiences by health professionals. Compounding grief was the largest synthesized finding and incorporated the various factors that contributed to a poorer experience of grief. Alleviating grief showed the limited identified factors that improved the experience of grief. Methodological quality led to synthesized findings receiving a ConQual rating of low or moderate. CONCLUSIONS: The synthesized findings from this review highlight the varied reported experiences of grief in health professionals. The methodological quality and reporting of studies, however, led to decreased confidence in the synthesized findings and recommendations arising from this review. Healthcare professionals should be aware of the potential for experiencing grief when a patient dies and the compounding and alleviating factors associated with this. Further research could expand participant and language limitations, and improve methodological quality and reporting. Baughcum, A. E., C. A. Fortney, A. M. Winning, Z. D. O. Dunnells, L. M. Humphrey and C. A. Gerhardt (2020). "Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU." Advances in Neonatal Care 20(2): 118-126.Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio (Drs Baughcum and Gerhardt); Department of Pediatrics, College of Medicine, The Ohio State University, Columbus (Drs Baughcum, Humphrey, and Gerhardt); The Martha S. Pitzer Center for Women, Children and Youth, College of Nursing, The Ohio State University, Columbus (Dr Fortney); Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio (Dr. Fortney, Ms Winning, Mr Dunnells, and Dr Gerhardt); and Department of Psychology, The Ohio State University, Columbus (Dr Gerhardt). BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment. Bibler, T. M., D. Stahl, S. Fantus, A. Lion and K. B. Brothers (2020). "A Process-Based Approach to Responding to Parents or Guardians Who Hope for a Miracle." Pediatrics 145(3).[Bibler, Trevor M.] Baylor Coll Med, Ctr Biomed Eth & Hlth Policy, 1 Baylor Plaza, Houston, TX 77030 USA. [Bibler, Trevor M.] Houston Methodist Hosp, Houston, TX 77030 USA. [Stahl, Devan] Baylor Univ, Waco, TX 76798 USA. [Fantus, Sophia] Univ Texas Arlington, Arlington, TX 76019 USA. [Lion, Alex] Indiana Univ, Sch Med, Indianapolis, IN USA. [Brothers, Kyle B.] Univ Louisville, Louisville, KY 40292 USA. Bibler, TM (reprint author), Baylor Coll Med, Ctr Biomed Eth & Hlth Policy, 1 Baylor Plaza, Houston, TX 77030 USA. bibler@bcm.edu When parents or guardians hope for a miracle for their child who is critically ill, ethical and professional challenges can arise. Often, although not always, the parent or guardian's hope for a miracle entails a request for continued life-sustaining interventions. Striking a balance between the pediatrician's conception of good medicine and the parent or guardian's authority requires a response that is sensitive, practical, and ethically sound. In this article, we recommend 3 cumulative steps that promote such a response. First, we recommend ways of exploring essential issues through open inquiry, interdisciplinary dialogue, and self-reflection. As part of this exploration, pediatricians will discover that parents or guardians often have unique ideas about what a miracle might be for their child. The second step includes analyzing this diversity and seeking understanding. We classify the hope for a miracle into 3 distinct categories: integrated, seeking, and adaptive. After the pediatrician has categorized the parent or guardian's hope, they can consider specific recommendations. We detail context-specific responses for each kind of hope. By attending to these nuances, not only will the parent or guardian's perspective be heard but also the pediatrician's recommendation can strike a balance between advocating for their conception of good medicine and respecting the parent or guardian's beliefs. Bonafide, C. P., J. M. Miller, A. R. Localio, A. Khan, A. C. Dziorny, M. Mai, S. Stemler, W. X. Chen, J. H. Holmes, V. M. Nadkarni and R. Keren (2020). "Association Between Mobile Telephone Interruptions and Medication Administration Errors in a Pediatric Intensive Care Unit." Jama Pediatrics 174(2): 162-169.[Bonafide, Christopher P.; Stemler, Shannon; Keren, Ron] Childrens Hosp Philadelphia, Sect Pediat Hosp Med, Philadelphia, PA 19104 USA. [Bonafide, Christopher P.; Miller, Jeffrey M.; Khan, Amina; Dziorny, Adam C.; Mai, Mark] Childrens Hosp Philadelphia, Dept Biomed & Hlth Informat, Philadelphia, PA 19104 USA. [Bonafide, Christopher P.; Keren, Ron] Childrens Hosp Philadelphia, Ctr Pediat Clin Effectiveness, Philadelphia, PA 19104 USA. [Bonafide, Christopher P.; Keren, Ron] Univ Penn, Dept Pediat, Perelman Sch Med, Philadelphia, PA 19104 USA. [Localio, A. Russell; Holmes, John H.] Univ Penn, Perelman Sch Med, Dept Biostat Epidemiol & Informat, Philadelphia, PA 19104 USA. [Khan, Amina; Keren, Ron] Childrens Hosp Philadelphia, Ctr Healthcare Qual & Analyt, Philadelphia, PA 19104 USA. [Dziorny, Adam C.; Mai, Mark; Nadkarni, Vinay M.] Childrens Hosp Philadelphia, Div Pediat Crit Care Med, Philadelphia, PA 19104 USA. [Dziorny, Adam C.; Mai, Mark; Nadkarni, Vinay M.] Univ Penn, Perelman Sch Med, Dept Anesthesiol & Crit Care, Philadelphia, PA 19104 USA. [Stemler, Shannon] Christiana Care Hlth Syst, Dept Nursing, Newark, DE USA. [Chen, Wanxin] Temple Univ, Dept Math, Philadelphia, PA 19122 USA. Bonafide, CP (reprint author), Childrens Hosp Philadelphia, Buerger Ctr Adv Pediat Care, Sect Pediat Hosp Med, 3500 Civ Ctr Blvd, Philadelphia, PA 19104 USA. bonafide@email.chop.edu Question Are mobile telephone interruptions temporally associated with pediatric intensive care unit nurses' errors during medication administration? Findings In this cohort study of 257 nurses and 3308 patients in a pediatric intensive care unit, incoming calls on nurses' institutional mobile telephones occurring in the 10 minutes before medication administration were significantly associated with increased risk of error. The risk was higher during night shifts and among nurses with fewer than 6 months' experience, and it also varied by nurse to patient ratio and level of patient care required. Meaning This study's findings suggest that, although communication-related interruptions cannot be eliminated, interventions to reduce the frequency and adverse consequences of interruptions should include consideration of time of day, nurse experience, nurse to patient ratio, and level of patient care required. This cohort study assesses whether interruptions by incoming calls and messages on hospital telecommunication devices are associated with errors in the medication process among nurses administering medications in a pediatric intensive care unit. Importance Incoming text messages and calls on nurses' mobile telephones may interrupt medication administration, but whether such interruptions are associated with errors has not been established. Objective To assess whether a temporal association exists between mobile telephone interruptions and subsequent errors by pediatric intensive care unit (PICU) nurses during medication administration. Design, Setting, and Participants A retrospective cohort study was performed using telecommunications and electronic health record data from a PICU in a children's hospital. Data were collected from August 1, 2016, through September 30, 2017. Participants included 257 nurses and the 3308 patients to whom they administered medications. Exposures Primary exposures were incoming telephone calls and text messages received on the institutional mobile telephone assigned to the nurse in the 10 minutes leading up to a medication administration attempt. Secondary exposures were the nurse's PICU experience, work shift (day vs night), nurse to patient ratio, and level of patient care required. Main Outcomes and Measures Primary outcome, errors during medication administration, was a composite of reported medication administration errors and bar code medication administration error alerts generated when nurses attempted to give medications without active orders for the patient whose bar code they scanned. Results Participants included 257 nurses, of whom 168 (65.4%) had 6 months or more of PICU experience; and 3308 patients, of whom 1839 (55.6%) were male, 1539 (46.5%) were white, and 2880 (87.1%) were non-Hispanic. The overall rate of errors during 238540 medication administration attempts was 3.1% (95% CI, 3.0%-3.3%) when nurses were uninterrupted by incoming telephone calls and 3.7% (95% CI, 3.4%-4.0%) when they were interrupted by such calls. During day shift, the odds ratios (ORs) for error when interrupted by calls (compared with uninterrupted) were 1.02 (95% CI, 0.92-1.13; P = .73) among nurses with 6 months or more of PICU experience and 1.22 (95% CI, 1.00-1.47; P = .046) among nurses with less than 6 months of experience. During night shift, the ORs for error when interrupted by calls were 1.35 (95% CI, 1.16-1.57; P < .001) among nurses with 6 months or more of PICU experience and 1.53 (95% CI, 1.16-2.03; P = .003) among nurses with less than 6 months of experience. Nurses administering medications to 1 or more patients receiving mechanical ventilation and arterial catheterization while caring for at least 1 other patient had an increased risk of error (OR, 1.21; 95% CI, 1.03-1.42; P = .02). Incoming text messages were not associated with error (OR, 0.97; 95% CI, 0.92-1.02; P = .22). Conclusions and Relevance This study's findings suggest that incoming telephone call interruptions may be temporally associated with medication administration errors among PICU nurses. Risk of error varied by shift, experience, nurse to patient ratio, and level of patient care required. Bowen, R., K. M. Lally, F. R. Pingitore, R. Tucker, E. C. McGowan and B. E. Lechner (2020). "A simulation based difficult conversations intervention for neonatal intensive care unit nurse practitioners: A randomized controlled trial." PloS One 15(3): e0229895.Department of Neonatology, Women & Infants Hospital, Providence, RI, United States of America. Program in Palliative Care, Care New England Health System, Providence, RI, United States of America. Warren Alpert Medical School of Brown University, Providence, RI, United States of America. Department of Pediatrics, Hasbro Children's Hospital, Providence, RI, United States of America. BACKGROUND: Neonatal nurse practitioners are often the front line providers in discussing unexpected news with parents. This study seeks to evaluate whether a simulation based Difficult Conversations Workshop for neonatal nurse practitioners leads to improved skills in conducting difficult conversations. METHODS: We performed a randomized controlled study of a simulation based Difficult Conversations Workshop for neonatal nurse practitioners (n = 13) in a regional level IV neonatal intensive care unit to test the hypothesis that this intervention would improve communication skills. A simulated test conversation was performed after the workshop by the intervention group and before the workshop by the control group. Two independent blinded content experts scored each conversation using a quantitative communication skills performance checklist and by assigning an empathy score. Standard statistical analysis was performed. RESULTS: Randomization occurred as follows: n = 5 to the intervention group, n = 7 to the control group. All participants were analyzed in each group. Participation in the simulation based Difficult Conversations Workshop increases participants' empathy score (p = 0.015) and the use of communication skills (p = 0.013) in a simulated clinical encounter. CONCLUSIONS: Our study demonstrates that a lecture and simulation based Difficult Conversations Workshop for neonatal nurse practitioners improves objective communication skills and empathy in conducting difficult conversations. Bowman, T. (2020). "Poetry, playlists and perspectives: Prompts for grieving a grandson’s death." Journal of Poetry Therapy.Bowman, Ted Grieving work as a professional is one thing; it is another when the loss is personal. This essay interweaves a personal writing-in-grief process with reflections by a grief educator who uses literary resources as prompts for his professional grief support processes. Specifically, the essay addresses the death of a grandson to a drug overdose and his grandfather’s grieving process, augmented by commentary and reflections from poetry, song lyrics, and the literatures of grief, bereavement and bibliotherapy. The metaphors of thresholds or liminal spaces and their ambiguity for grieving persons will also be continuing threads. (PsycINFO Database Record (c) 2020 APA, all rights reserved) Boyden, J. Y., D. L. Hill, K. W. Carroll, W. E. Morrison, V. A. Miller and C. Feudtner (2020). "The Association of Perceived Social Support with Anxiety over Time in Parents of Children with Serious Illnesses." Journal of Palliative Medicine 23(4): 527-534.Department of Biobehavioral Health Sciences, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania. Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania. Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses. Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time. Design: Prospective cohort study. Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia. Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months. Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling. Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes. Broden, E. G., J. Deatrick, C. Ulrich and M. A. Q. Curley (2020). "Defining a "Good Death" in the Pediatric Intensive Care Unit." American Journal of Critical Care 29(2): 111-121.Elizabeth G. Broden is a doctoral student, University of Pennsylvania School of Nursing, and a registered nurse, Pediatric Intensive Care Unit, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. Janet Deatrick is a professor emerita, Department of Family and Community Health, University of Pennsylvania School of Nursing. Connie Ulrich is a professor, Department of Biobehavioral Health, School of Nursing, and a professor of bioethics, School of Medicine, University of Pennsylvania. Martha A.Q. Curley is the Ruth M. Colket Endowed Chair in Pediatric Nursing, Children's Hospital of Philadelphia, and a professor, Department of Family and Community Health, School of Nursing and Department of Anesthesia and Critical Care, Perelman School of Medicine, University of Pennsylvania. BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely. OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents. METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches. RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept. CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child. Cawley, P. and E. Chakkarapani (2020). "Fifteen-minute consultation: Therapeutic hypothermia for infants with hypoxic ischaemic encephalopathy-translating jargon, prognosis and uncertainty for parents." Archives of Disease in Childhood: Education and Practice Edition 105(2): 75-83.Neonatal Intensive Care Unit, Southmead Hospital, Bristol, UK. Neonatal Intensive Care Unit, St Michael's Hospital, University Hospitals Bristol NHS Foundation Trust, Bristol, UK. School of Clinical Sciences, University of Bristol, Bristol, UK. Hypoxic ischaemic encephalopathy may lead to death or severe long-term morbidity. Therapeutic hypothermia (TH) increases survival without impairments in childhood, but prognostic uncertainty may remain for years after birth. Clear and accurate communication is imperative but challenging. This article explores the predictive value of routinely performed assessments during TH, as well as the qualitative research relating to parental experience. This article will benefit paediatric trainees, consultants and nurse practitioners in providing: (1) the background information needed for initiating a conversation with parents regarding outcome and (2) optimising their communication with parents in translating jargon, prognosis and uncertainty. Chen, C. F., F. L. Huang, Y. C. Chen, I. F. Wang and Y. P. Huang (2020). "Maternal caregiving for children newly diagnosed with acute lymphoblastic leukemia: Traditional Chinese mothering as the double-edged sword." Journal of Pediatric Nursing.Department of Nursing, HungKuang University, No. 1018, Sec. 6, Taiwan Boulevard, Shalu District, Taichung City 43302, Taiwan. Electronic address: a0919066803@gmail.com. Division of Oncology, Department of Pediatrics, Taichung Veterans General Hospital, 1650 Taiwan Boulevard Sect. 4, Taichung 40705, Taiwan; Department of Physical Therapy, HungKuang University, No. 1018, Sec. 6, Taiwan Boulevard, Shalu Dostrict, Taichung City 43302, Taiwan. Electronic address: flhuang.ped@gmail.com. HungKuang University, No. 1018, Sec. 6, Taiwan Boulevard, Shalu Dostrict, Taichung City 43302, Taiwan. Electronic address: ychichen@ntu.edu.tw. Department of Nursing, National Taipei University of Nursing and Health Sciences, No. 365, Ming-te Road, Peitou District, Taipei City 11219, Taiwan. Electronic address: g102bonita@gmail.com. School of Nursing, National Quemoy University, No. 1, Dasyue Rd., Jinning Township, Kinmen County 89250, Taiwan. Electronic address: yup@nqu.edu.tw. AIMS AND OBJECTIVES: To explore the meaning of maternal caregiving in the Chinese culture for children newly diagnosed with acute lymphocytic leukemia (ALL). BACKGROUND: Recurrence of and death associated with ALL remain the main concerns for mothers. Mothers experience guilt and anxiety towards their child's cancer. DESIGN: Descriptive phenomenological study. METHODS: Twelve mothers were recruited from a medical centre in Central Taiwan. The mothers were primary caregivers for their child diagnosed as having ALL in the past 3 months to 1 year. Data were collected through semi-structured interviews and analysed using Colaizzi's method. RESULTS: Four main themes emerged: feeling this world crashing by knowing the diagnosis, feeling the double-edged sword of mothering, worrying about potential risks for their vulnerable child, and passing through difficulties with power of support. CONCLUSIONS: Most mothers felt this world crashing due to potential loss of their child and seeing their child's suffering. The mother was blamed for her child's cancer but was also required to shoulder all caregiving for their child. The mothers needed to compromise their lives to protect their child from potential infection. Perceived power of support helped the mothers overcome difficulties. RELEVANCE TO CLINICAL PRACTICE: Findings support that nurses encouraging mothers to tell their stories, regardless of culture, will facilitate healing. Establishing trust and providing support from nurses, physicians, psychologists and social workers will lead mothers' readiness to deal with care of their sick child. Increasing visiting time for parental support for children hospitalized in the PICU is suggested as well. Chen, Y., C. U. Lehmann, L. D. Hatch, E. Schremp, B. A. Malin and D. J. France (2020). "Modeling Care Team Structures in the Neonatal Intensive Care Unit through Network Analysis of EHR Audit Logs." Methods of Information in Medicine.Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee, United States. Department of Electrical Engineering and Computer Science, School of Engineering, Vanderbilt University, Nashville, Tennessee, United States. Departments of Pediatrics, Bioinformatics, and Population & Data Sciences, University of Texas Southwestern Medical Center, Dallas, Texas, United States. Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee, United States. Department of Anesthesiology, Center for Research and Innovation in Systems Safety, Vanderbilt University Medical Center, Nashville, Tennessee, United States. Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee, United States. BACKGROUND: In the neonatal intensive care unit (NICU), predefined acuity-based team care models are restricted to core roles and neglect interactions with providers outside of the team, such as interactions that transpire via electronic health record (EHR) systems. These unaccounted interactions may be related to the efficiency of resource allocation, information flow, communication, and thus impact patient outcomes. This study applied network analysis methods to EHR audit logs to model the interactions of providers beyond their core roles to better understand the interaction network patterns of acuity-based teams and relationships of the network structures with postsurgical length of stay (PSLOS). METHODS: The study used the EHR log data of surgical neonates from a large academic medical center. The study included 104 surgical neonates, for whom 9,206 unique actions were performed by 457 providers in their EHRs. We applied network analysis methods to model EHR provider interaction networks of acuity-based teams in NICU postoperative care. We partitioned each EHR network into three subnetworks based on interaction types: (1) interactions between known core providers who were documented in scheduling records (core subnetwork); (2) interactions between core and noncore providers (extended subnetwork); and (3) interactions between noncore providers (extended subnetwork). For each core subnetwork, we assessed its capability to replicate predefined core-provider relations as documented in scheduling records. We further compared each EHR network, as well as its subnetworks, using standard network measures to determine its differences in network topologies. We conducted a case study to learn provider interaction networks taking care of 15 neonates who underwent gastrostomy tube placement surgery from EHR log data and measure the effectiveness of the interaction networks on PSLOS by the proportional-odds model. RESULTS: The provider networks of four acuity-based teams (two high and two low acuity), along with their subnetworks, were discovered. We found that beyond capturing the predefined core-provider relations, EHR audit logs can also learn a large number of relations between core and noncore providers or among noncore providers. Providers in the core subnetwork exhibited a greater number of connections with each other than with providers in the extended subnetworks. Many more providers in the core subnetwork serve as a hub than those in the other types of subnetworks. We also found that high-acuity teams exhibited more complex network structures than low-acuity teams, with high-acuity team generating 6,416 interactions between 407 providers compared with 931 interactions between 124 providers, respectively. In addition, we discovered that high-acuity and lowacuity teams shared more than 33 and 25% of providers with each other, respectively, but exhibited different collaborative structures demonstrating that NICU providers shift across different acuity teams and exhibit different network characteristics. Results of case study show that providers, whose patients had lower PSLOS, tended to disperse patient-related information to more colleagues within their network than those who treated higher PSLOS patients (p = 0.03). CONCLUSION: Network analysis can be applied to EHR log data to model acuity-based NICU teams capturing interactions between providers within the predesigned core team as well as those outside of the core team. In the NICU, dissemination of information may be linked to reduced PSLOS. EHR log data provide an efficient, accessible, and researchfriendly way to study provider interaction networks. Findings should guide improvements in the EHR system design to facilitate effective interactions between providers. Choi, H. and S. M. Cho (2020). "Posttraumatic stress disorder and complicated grief in bereaved parents of the Sewol Ferry disaster exposed to injustice following the loss." International Journal of Social Psychiatry 66(2): 163- 170.Department of Psychology, Chungbuk National University, Cheongju, South Korea. Department of Psychiatry and Behavioral Sciences, School of Medicine, Ajou University, Suwon, South Korea. BACKGROUND: Perceived justice after man-made disaster bereavement may involve as a protective factor in the recovery process. However, perceived justice related to posttraumatic stress disorder (PTSD) or complicated grief (CG) after disaster bereavement has not been sufficiently discussed in previous studies. AIMS: This study aims to assess PTSD and CG in bereaved parents of Sewol disaster and to explore whether perceived justice is related with the diagnostic groups. METHODS: Bereaved parents of Sewol disaster (N = 122) were interviewed approximately 2 years after the incident. Structured interviews for PTSD and CG were assessed, and perceived institutional justice surrounding the incident was measured. Symptom groups were identified, and multinomial logistic regression was conducted to find whether perceived justice was related with PTSD or CG. RESULTS: Participants showed high rates of CG and PTSD, and were classified into the both PTSD and CG group, the CG-only group and the resilient group. The analysis revealed that less perceived justice and being a mother increased the likelihood of having both PTSD and CG. Less perceived justice also showed a tendency to be associated with having CG without PTSD. CONCLUSION: Parents bereaved by the Sewol disaster had high PTSD and CG related to lower levels of perceived justice surrounding the post-disaster period. Post-disaster environment seeking justice may facilitate the natural grieving process or encourage access to effective individual interventions. Consales, A., B. L. Crippa, J. Cerasani, D. Morniroli, M. Damonte, M. E. Bettinelli, D. Consonni, L. Colombo, L. Zanotta, E. Bezze, P. Sannino, F. Mosca, L. Plevani and M. L. Gianni (2020). "Overcoming Rooming-In Barriers: A Survey on Mothers' Perspectives." Front Pediatr 8: 53.Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, NICU, Milan, Italy. Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy. Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Epidemiology Unit, Milan, Italy. Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Direzione Professioni Sanitarie, Milan, Italy. Background: The importance of rooming-in in promoting breastfeeding initiation and continuation within the 10 Steps for Successful Breastfeeding is widely acknowledged. However, adherence to this practice by healthcare facilities is lower than that of other Steps. A deeper knowledge of maternal rooming-in experience has been advocated to identify the most effective rooming-in policies, thus enabling mothers to have a positive experience when practicing it in the postpartum period. Aim: To investigate maternal knowledge of rooming-in and the most frequently encountered barriers and possible facilitators of adherence to the practice, according to their experience. Study Design and Methods: We enrolled mothers who delivered healthy term or late preterm infants during the month of January 2019 in a tertiary referral center for neonatal care in Milan, Italy. At discharge, a structured interview about mothers' rooming-in experience was administered by healthcare professionals. Basic subjects' characteristics and mode of feeding were recorded. Results: The enrolled population included 328 mothers and 333 neonates. The great majority of mothers knew of rooming-in and 48.2% practiced it continuously. The 86.3% of mothers was aware of the beneficial effects of rooming-in; promotion of mother-infant bonding, increased confidence in taking care of the baby and ability to recognize baby's feeding cues were the most frequently cited, whereas improving breastfeeding was reported by a limited number of mothers, unless they were asked a specific question about it. The main reported obstacles were fatigue (40.5%) and cesarean section related difficulties (15.5%); night was the most critical time of the day for rooming-in. Strategies suggested by mothers for improving rooming-in were increased assistance to the dyad, organizational and structural changes and the possibility to have a family member during the night. Additionally, mothers who adhered to rooming-in practice continuously during hospital stay had a higher exclusive breastfeeding rate at discharge compared to mothers who did not. Conclusions: Our study contributes to a deeper knowledge of maternal rooming-in experience in an Italian tertiary maternity. We underline the importance of providing a tailored support to the mother-infant dyad in order to overcome rooming-in barriers perceived by mothers and promote a positive rooming-in experience. Cronin, R. S., B. F. Bradford, V. Culling, J. M. D. Thompson, E. A. Mitchell and L. M. E. McCowan (2020). "Stillbirth research: Recruitment barriers and participant feedback." Women Birth 33(2): 153-160.Department of Obstetrics and Gynaecology, University of Auckland, New Zealand. Electronic address: r.cronin@auckland.ac.nz. Department of Obstetrics and Gynaecology, University of Auckland, New Zealand. Vicki Culling Associates, Wellington, New Zealand. Department of Paediatrics: Child Health and Youth Health, University of Auckland, New Zealand. BACKGROUND: Prioritisation of stillbirth research in high-income countries is required to address preventable stillbirth. However, concern is raised by ethics committees, maternity providers and families, when pregnant and bereaved women are approached to participate. Our aim was to 1) assess factors influencing recruitment in a multicentre case-control stillbirth study and 2) gain insight into how women felt about their participation. METHODS: Eligible women were contacted through maternity providers from seven New Zealand health regions in 2011-2015. Cases had a recent singleton non-anomalous late stillbirth (>/=28 weeks' gestation). Controls were randomly selected and matched for region and gestation. Participants were interviewed by a research midwife and given a feedback form asking their views about participation. Feedback was evaluated using thematic analysis. RESULTS: 169 (66.5%) of 254 eligible cases and 569 (62.2%) of 915 eligible controls were recruited. Non-participants consisted of 263 (22.5% of eligible) women who declined, 108 (9.2% of eligible) uncontactable women, and 60 (5.1% of eligible) women declined by the maternity provider, with no significant differences between the proportion of non-participating cases and controls in each of these three categories. The majority (63.2%) of women did not provide a specific reason for non-participation. Written feedback was provided by 111 participants (cases 15.3%, controls 14.9%) and all described their involvement positively. Feedback themes identified were 'motivation to participate,' 'ease of participation,' and 'post-participation positivity.' CONCLUSION: Identification of recruitment barriers and our reassuring participant feedback may assist women's participation in future research and support progress towards stillbirth prevention. da Silva Knihs, N., J. D. Santos, S. M. Schuantes Paim, A. L. Pestana Magalhaes, J. L. Erbs Pessoa, S. F. Ramos, J. Schirmer, I. Bittencourt, H. C. Albuquerque Bezerra, M. L. D. Reis Bellaguarda and E. Lima da Silva (2020). "Communication of Death in the Context of Infant-Child Donation: Best Practices for Creating Family Interview for Organ and Tissue Donation." Transplantation Proceedings.Federal University of Santa Catarina, Florianopolis, Santa Catarina, Brazil. Electronic address: neide.knihs@ufsc.br. Federal University of Santa Catarina, Florianopolis, Santa Catarina, Brazil. State Center of Transplant of Sao Paulo, Sao Paulo, Brazil. Federal University of Sao Paulo, Sao Paulo, Brazil. Sao Jose Hospital, Joinville, Santa Catarina, Brazil. Federal University of Amazonas, Manaus, Amazonas, Brazil. Federal University of Maranhao, Maranhao, Bahia, Brazil. OBJECTIVE: To analyze evidence capable of supporting best practices available in the literature to create dialogues about organ and tissue donation with parents of deceased children and adolescents. METHODS: An integrative literature review performed using Scopus, Cochrane, PsycINFO, PubMed/MEDLINE, Web of Science database, and SciELo electronic libraries from November of 2013 to November of 2018, using keyword syntax for each database. The categories were developed using the Alicante model. RESULTS: A total of 745 articles were identified, with 7 selected for analysis. The information obtained was grouped into 3 categories: death communication, which indicates the importance of using simple and clear words; emotional support, which reveals the need to respect family time and the importance of empathy and compassion; and donation information, which punctuates the importance of dissociating communication about the death from that regarding organ donation. CONCLUSIONS: Evidence shows that best practices are the use of simple language, respect for the family during the grieving process, and the importance of establishing different situations in which to communicate about the death and the donation process. Dahan, S., C. Jung, G. Dassieu, X. Durrmeyer and L. Caeymaex (2020). "Trust and consent: a prospective study on parents' perspective during a neonatal trial." Journal of Medical Ethics.Neonatal intensive care unit, Centre hospitalier intercommunal de Creteil, Creteil, Ile-de-France, France soniadahan1979@gmail.com. Faculte de Medecine, Universite Paris Est Creteil Val de Marne, Faculte de Medecine, Creteil, Ile-de-France, France. Pediatrics, Centre hospitalier Intercommunal de Creteil Val-de-Marne, Creteil, Ile-de-France, France. Neonatal intensive care unit, Centre hospitalier intercommunal de Creteil, Creteil, Ile-de-France, France. CEDITEC, Universite Paris-Est Creteil Val de Marne, Creteil, France. OBJECTIVE: This study aimed to describe how parents and physicians experienced the informed consent interview and to investigate the aspects of the relationship that influenced parents' decision during the consent process for a randomised clinical trial in a tertiary neonatal intensive care unit (NICU). The secondary objective was to describe the perspectives of parents and physicians in the specific situation of prenatal informed consent. SETTING: Single centre study in NICU of the Centre Hospitalier Intercommunal de Creteil, France, using a convenience period from February to May 2016. DESIGN: Ancillary study to a randomised clinical trial: Prettineo. Records of interviews for consent. POPULATION: parents and physicians. Mixed study including qualitative and quantitative interview data about participants' recall and feelings about the consent process. Interviews were reviewed using thematic discourse analysis. RESULTS: Parents' recall and understanding of the study's main goal and design was good. Parents and physicians had a positive experience, and trust was one of the main reasons for parents to consent. Misunderstanding (bad comprehension) was the main reason for refusal.Before birth, three situations can compromise parents' consent: the mother already consented to participate in other studies, the absence of the father during the interview and the feeling that the baby's birth is not an imminent possibility. CONCLUSIONS: Confronting parents and physicians' perspectives in research can help us reach answers to sensitive issues such as content and timing of information. Each different types of study raises different ethical dilemmas for consent that might be discussed in a more individual way. Delgado-Corcoran, C., S. E. Wawrzynski, E. E. Bennett, D. Green, S. Bodily, D. Moore, L. J. Cook and L. M. Olson (2020). "Palliative Care in Children With Heart Disease Treated in an ICU." Pediatric Critical Care Medicine.Division of Critical Care, Department of Pediatrics, University of Utah, Salt Lake City, UT. Pediatric Critical Care Services, Primary Children's Hospital, Intermountain Healthcare, Salt Lake City, UT. Division of Inpatient Medicine, Department of Pediatrics, University of Utah, Salt Lake City, UT. OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied. Dombrecht, L., J. Cohen, F. Cools, L. Deliens, L. Goossens, G. Naulaers, K. Beernaert and K. Chambaere (2020). "Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses." Palliative Medicine 34(3): 430-434.End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel (VUB), Ghent, Belgium. Department of Public Health and Primary Care, Ghent University, Ghent, Belgium. Department of Neonatology, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel (VUB), Brussels, Belgium. Department of Neonatology, Ghent University Hospital, Ghent, Belgium. Department of Development and Regeneration, KU Leuven, Leuven, Belgium. BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support. Dombrecht, L., V. Piette, L. Deliens, F. Cools, K. Chambaere, L. Goossens, G. Naulaers, L. Cornette, K. Beernaert and J. Cohen (2020). "Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study." Journal of Pain and Symptom Management 59(3): 599-608.e592.End-ofLife Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium; Department of Public Health and Primary Care, Ghent University, Ghent, Belgium. Electronic address: laure.dombrecht@ugent.be. End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium. End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium; Department of Public Health and Primary Care, Ghent University, Ghent, Belgium. Department of Neonatology, Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel (VUB), Brussels, Belgium. Department of Neonatology, Ghent University Hospital, Ghent, Belgium. Department of Development and Regeneration, KU Leuven, Leuven, Belgium. Department of Neonatology, AZ Sint-Jan Brugge-Oostende, Bruges, Belgium. Ghent University Hospital, Brussels University Hospital, Leuven University Hospital, Antwerp University Hospital, Hospital Oost-Limburg Genk, Hospital GZA St Augustinus, AZ St Jan Brugge, ZNA Middelheim, Belgium. CONTEXT: Making end-of-life decisions (ELDs) in neonates involves ethically difficult and distressing dilemmas for health care providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. OBJECTIVES: This study aimed to identify barriers to and facilitators of the ELD-making process as perceived by neonatologists and nurses. METHODS: We conducted semistructured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous ELD-making processes. Two researchers independently analyzed the data, using thematic content analysis to extract and summarize barriers and facilitators. RESULTS: Barriers and facilitators were found at three distinct levels: the case-specific context (e.g., uncertainty of the diagnosis and specific characteristics of the child, parents, and health care providers, which make decision making more difficult), decision-making process (e.g., multidisciplinary consultations and advance care planning, which make decision making easier), and overarching structure (e.g., lack of privacy and complex legislation making decision making more challenging). CONCLUSION: Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex ELD-making process. Recommendations include establishing regular multidisciplinary meetings to include all health care providers and reduce unnecessary uncertainty, routinely implementing advance care planning in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents, and reviewing the complex legal framework of perinatal ELD making. Dorner, R. A., R. D. Boss, V. J. Burton, K. Raja and M. E. Lemmon (2020). "Parent preferences for neurodevelopmental screening in the neonatal intensive care unit." Developmental Medicine and Child Neurology 62(4): 500-505.Division of Perinatal-Neonatal Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA. Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA. Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD, USA. Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, USA. Johns Hopkins University, Baltimore, MD, USA. Department of Pediatrics, Division of Pediatric Neurology, Duke University School of Medicine, Durham, NC, USA. Duke-Margolis Center for Health Policy, Durham, NC, USA. AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. METHOD: This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. RESULTS: Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. INTERPRETATION: Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. WHAT THIS PAPER ADDS: Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation. Eche, I. J., I. M. Eche and T. Aronowitz (2020). "An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer." Journal of Pediatric Oncology Nursing: 1043454220909805.DanaFarber Cancer Institute, Boston, MA, USA. Beth Israel Deaconess Medical Center, Boston, MA, USA. University of Massachusetts Boston, Boston, MA, USA. Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptomspain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed. El-Jawahri, A., A. M. Nelson, T. F. Gray, S. J. Lee and T. W. LeBlanc (2020). "Palliative and End-of-Life Care for Patients With Hematologic Malignancies." Journal of Clinical Oncology 38(9): 944-953.Massachusetts General Hospital, Boston, MA. Harvard Medical School, Boston, MA. Dana-Farber Cancer Institute, Boston, MA. Fred Hutchinson Cancer Research Center, Seattle, WA. Duke University School of Medicine, Durham, NC. Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, posttreatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patientreported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population. Falciglia, G. H., K. Murthy, J. L. Holl, H. L. Palac, D. M. Woods and D. T. Robinson (2020). "Low prevalence of clinical decision support to calculate caloric and fluid intake for infants in the neonatal intensive care unit." Journal of Perinatology 40(3): 497-503.Department of Pediatrics, Northwestern University, Feinberg School of Medicine, Chicago, IL, USA. gustave-falciglia@northwestern.edu. Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, USA. gustave-falciglia@northwestern.edu. Department of Pediatrics, Northwestern University, Feinberg School of Medicine, Chicago, IL, USA. Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, USA. Children's Hospital Neonatal Consortium, Kansas City, MO, USA. Center for Health Services & Outcomes Research, Northwestern University, Feinberg School of Medicine, Chicago, IL, USA. nPhase, Inc, Encinitas, CA, USA. BACKGROUND: Clinical decision support (CDS) improves nutrition delivery for infants in the neonatal intensive care unit (NICU), however, the prevalence of CDS to support nutrition is unknown. METHODS: Online surveys, with telephone and email validation of responses, were administered to NICU clinicians in the Children's Hospital Neonatal Consortium (CHNC). We determined and compared the availability of CDS to calculate calories and fluid received in the prior 24 h, stratified by enteral and parenteral intake, using McNemar's test. RESULTS: Clinicians at all 34 CHNC hospitals responded with 98 of 108 (91%) surveys completed. NICUs have considerably less CDS to calculate enteral calories received than enteral fluid received (32% vs. 82%, p < 0.001) and less CDS to calculate parenteral calories received than parenteral fluid received (29% vs. 82%, p < 0.001). DISCUSSION: Most CHNC NICUs are unable to reliably and consistently monitor caloric intake delivered to critically ill infants at risk for growth failure. Farrales, L. L., J. Cacciatore, C. Jonas-Simpson, S. Dharamsi, J. Ascher and M. C. Klein (2020). "What bereaved parents want health care providers to know when their babies are stillborn: a community-based participatory study." BMC Psychol 8(1): 18.Department of Family Practice, University of British Columbia, Vancouver, Canada. Still Life Canada: Stillbirth and Neonatal Death Education, Research and Support Society, Vancouver, Canada. International Stillbirth Alliance, Bristol, UK. Arizona State University West, 4701 W Thunderbird Road, Glendale, AZ, USA. joanne.cacciatore@asu.edu. York University School of Nursing, Toronto, Canada. College of Health Sciences, Peter De Wetter Distinguished Professor of Health Sciences, The University of Texas at El Paso, El Paso, USA. Emeritus Professor Family Practice & Pediatrics, Department of Family Practice, University of British Columbia, Vancouver, Canada. Senior Scientist Emeritus, BC Children's Hospital Research Institute, Vancouver, Canada. BACKGROUND: Bereaved parents experience higher rates of depressive and post-traumatic stress symptoms after the stillbirth of a baby than after live-birth. Yet, these effects remain underreported in the literature and, consequently, insufficiently addressed in health provider education and practice. We conducted a participatory based study to explore the experiences of grieving parents during their interaction with health care providers during and after the stillbirth of a baby. METHODS: This community-based participatory study utilized four focus groups comprised of twenty-seven bereaved parents (44% fathers). Bereaved parents conceptualized the study, participating at all stages of research, analyses, and drafting. Data were reduced into a main theme and subthemes, then broad-based member checked to ensure fidelity and nuances within themes. RESULTS: The major theme that emerged centered on provider acknowledgement of the baby as an irreplaceable individual. Subthemes reflected 1) acknowledgement of parenthood and grief, 2) recognition of the traumatic nature of stillbirth, and 3) acknowledgement of enduring grief coupled with access to support. It was important that providers realized how grief was experienced within health care and social support systems, concretized by their desire for long-term, specialized support. CONCLUSIONS: Both mothers and fathers feel that acknowledgement of their baby as an individual, their parenthood, and their enduring traumatic grief by healthcare providers are key elements required in the process of initiating immediate and ongoing care after the stillbirth of a baby. Fernandez-Basanta, S., M. J. Movilla-Fernandez, C. Coronado, H. Llorente-Garcia and T. Bondas (2020). "Involuntary Pregnancy Loss and Nursing Care: A Meta-Ethnography." International Journal of Environmental Research and Public Health 17(5).Department of Health Sciences, Faculty of Nursing and Podiatry, University of A Coruna, Naturalista Lopez Seoane s/n, 15471 Ferrol, Spain. University Hospital Complex of Ferrol, Galician Health Service (SERGAS), Av. da Residencia, S/N, 15405 Ferrol, Spain. Faculty of Health Sciences, University of Stavanger, PO Box 8600, Forus, Stavanger, Norway. Healthcare professionals find the care of parents following an involuntary pregnancy loss stressful and challenging. They also feel unprepared to support bereaved parents. The challenging nature of this support may have a personal impact on health professionals and the care provided to parents. The aim of this meta-ethnography is to synthesise nurses' and midwives' experiences of caring for parents following an involuntary pregnancy loss. A meta-ethnography of ten studies from five countries was carried out. GRADE CERQual was assessed to show the degree of confidence in the review findings. An overarching metaphor, caring in darkness, accompanied by five major themes provided interpretive explanations about the experiences of nurses and midwives in caring for involuntary pregnancy losses: (1) Forces that turn off the light, (2) strength to go into darkness, (3) avoiding stumbling, (4) groping in darkness, and (5) wounded after dealing with darkness. Nursing staff dealt with organizational difficulties, which encouraged task-focused care and avoidance of encounters and emotional connection with parents. However, nurses and midwives might go beyond in their care when they had competencies, support, and a strong value base, despite the personal cost involved. Ferrell, B., C. A. Thaxton and H. Murphy (2020). "Preparing Nurses for Palliative Care in the NICU." Advances in Neonatal Care 20(2): 142-150.Division of Nursing Research and Education, City of Hope National Medical Center, Duarte, California (Dr Ferrell); Medical City McKinney, McKinney, Texas (Dr Thaxton); ELNEC Faculty, City of Hope, Duarte, California (Dr Thaxton); and Children's Hospital of the King's Daughters, Norfolk, Virginia (Ms Murphy). BACKGROUND: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care. PURPOSE: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings. METHODS: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-thetrainer educational program and evidence-based curriculum. FINDINGS/RESULTS: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families. IMPLICATIONS FOR RESEARCH: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care. IMPLICATIONS FOR PRACTICE: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change. Fu, F., L. Chen, W. Sha, C. L. W. Chan, A. Y. M. Chow and V. W. Q. Lou (2020). "Mothers' Grief Experiences of Losing Their Only Child in the 2008 Sichuan Earthquake: A Qualitative Longitudinal Study." Omega (Westport) 81(1): 3-17.Department of Social Work, 12478 Fudan University , Shanghai, China. Department of Social Work and Social Administration, 25809 University of Hong Kong , Hong Kong, China. The purpose of this study is to explore bereaved mothers' 2-year experiences of losing their only child in the 2008 Sichuan earthquake. Taking an interpretative phenomenological approach, this study interviewed six bereaved mothers four times (6 months, 12 months, 18 months, and 24 months) in Dujiangyan area in Sichuan Province. The findings suggest that these mothers' personal grief experiences evolved: initially, anger toward the cause of their children's deaths, following despair of meaningless life, guilt and regret, and finally yearning. Although their yearning and missing ebbed after 2 years, these mothers still had unresolved grief. These mothers also faced strained marital relationships and additional pressure from social interactions. This study illuminates that these mothers' personal grief experiences and their coping strategies corresponded to Chinese family and sociocultural context. Gilroy, H., D. Salley, L. Hanning, A. Krawacki, L. Schafer and K. Mattran (2020). "Developing the WATCh nurse: A qualitative approach to understanding a pediatric rapid response role." Journal of Pediatric Nursing 52: 64- 69.Children's Memorial Hermann Hospital, 4311 Fannin St, Houston, TX 77030, United States of America. Electronic address: heidi.gilroy@memorialhermann.org. Children's Memorial Hermann Hospital, 4311 Fannin St, Houston, TX 77030, United States of America. PURPOSE: The objective of this study was to identify the characteristics and tasks vital for individuals to successfully navigate a proactive rapid response role at a quaternary children's hospital. DESIGN AND METHODS: A qualitative thematic analysis of open-ended interviews was utilized to define the essential characteristics and functions of a WATCh (Watch, Assess, Triage for Children) nurse. The sample included both WATCh nurses and other healthcare providers that work with WATCh nurses. RESULTS: Effective WATCh nurses are excellent communicators with advanced skills who are experienced, confident, and visible. They work as an extension of the nurse and as a care facilitator for high-risk children, advocate, and educator. CONCLUSIONS: A more proactive approach is essential for successful pediatric rapid response teams in hospital settings to prevent patient decompensation and code blue events. This study has identified that a successful program requires defined tasks and essential role characteristics. PRACTICE IMPLICATIONS: Implications for integration into practice include a defined selection process and training program for the WATCh nurse role to provide standardization and consistency. Experience was identified as an essential characteristic for the role but an exact amount was not defined. Strong communication skills are also necessary and while training can help supplement the characteristic, a certain level of personality and confidence should be identified in potential candidates. Training will need to include not only practice skills, but also personal skills to be an effective role in the institution. Gougoulis, A., R. Trawber, K. Hird and G. Sweetman (2020). "'Take 10 to talk about it': Use of a scripted, postevent debriefing tool in a neonatal intensive care unit." Journal of Paediatrics and Child Health.Medical Education Unit, Fiona Stanley Hospital, Perth, Western Australia, Australia. School of Medicine, Notre Dame University, Fremantle, Western Australia, Australia. AIM: This study assessed the impact of a scripted, post-event debriefing tool in identifying logistical, procedural, personnel and performance obstacles and successes in a clinical setting. It was predicted that the debriefing tool would highlight the importance of routine debriefing following challenging clinical events. METHODS: The study was conducted in a 22-bed neonatal intensive care unit at a tertiary hospital and involved all staff members in the perinatal service. The debriefing tool, a two-page form providing a structured, scripted approach, was used at the earliest opportunity after acute clinical deteriorations, emergency caesarean sections and any other critical events as decided by the neonatal team. Sessions were facilitated by either a nursing or medical member of the neonatal team. Following a 2-month trial, impact was measured via the comparison of before and after survey questions as well as review of a database of issues raised, subsequent actions and outcomes. RESULTS: Significant, positive changes were observed for survey questions specific to the frequency of debriefing, team communication, provision of learning opportunities and identification of logistical, equipment and procedural issues. In addition, the database highlighted the significant positive impact in day-to-day practice as a result of changes initiated by the debriefing tool. All participants requested the unit to continue using the tool. CONCLUSION: Scripted, post-event debriefing is achievable and valuable in the clinical setting. It encourages a supportive workplace culture and empowers team members to initiate practical change in their organisations. Guttmann, K., J. Flibotte, S. B. DeMauro and H. Seitz (2020). "A Mixed Methods Analysis of Parental Perspectives on Diagnosis and Prognosis of Neonatal Intensive Care Unit Graduates With Cerebral Palsy." Journal of Child Neurology 35(5): 336-343.Division of Newborn Medicine, Department of Pediatrics, Icahn School of Medicine at Mount Sinai, NY, USA. Department of Pediatrics, Division of Neonatology, The Children's Hospital of Philadelphia, PA, USA. University of Pennsylvania Perelman School of Medicine, PA, USA. Department of Communication, Mississippi State University, MS, USA. This study aimed to evaluate how parents of former neonatal intensive care unit patients with cerebral palsy perceive prognostic discussions following neuroimaging. Parent members of a cerebral palsy support network described memories of prognostic discussions after neuroimaging in the neonatal intensive care unit. We analyzed responses using Linguistic Inquiry and Word Count, manual content analysis, and thematic analysis. In 2015, a total of 463 parents met eligibility criteria and 266 provided free-text responses. Linguistic Inquiry and Word Count analysis showed that responses following neuroimaging contained negative emotion. The most common components identified through the content analysis included outcome, uncertainty, hope/hopelessness, and weakness in communication. Thematic analysis revealed 3 themes: (1) Information, (2) Communication, and (3) Impact. Parents of children with cerebral palsy report weakness in communication relating to prognosis, which persists in parents' memories. Prospective work to develop interventions to improve communication between parents and providers in the neonatal intensive care unit is necessary. Hallman, M. L. and L. M. Bellury (2020). "Communication in Pediatric Critical Care Units: A Review of the Literature." Critical Care Nurse 40(2): e1-e15.Melissa Hallman is a senior instructor at Emory University, Atlanta, Georgia. She founded NP2ME, LLC. Lanell M. Bellury is an associate professor at Georgia Baptist College of Nursing, Mercer University, Atlanta, Georgia. TOPIC: Current communication styles in pediatric critical care units do not often consider the needs of providers, patients, or family members. CLINICAL RELEVANCE: The Child Hospital Consumer Assessment of Healthcare Providers and Systems score has begun real-world testing and soon will be mandatory and tied to reimbursement. Poor communication in pediatric critical care units can lead to reduced continuity of care, escalated or unnecessary care, and poor outcomes for patients and hospitals. Improving communication in pediatric critical care units is imperative. PURPOSE OF PAPER: Extant literature was reviewed to assess communication in pediatric critical care from the provider, parent, and patient perspectives. Communication tools were also reviewed. CONTENT COVERED: Twenty-eight articles met inclusion criteria and were analyzed according to study focus (provider, parent/caregiver, patient, or tool). This review links communication to outcomes related to providers, parents, and patients. Current tools are reviewed to evaluate their effectiveness in addressing communication barriers and to guide future research in communication. Findings indicate that effective communication is challenging in intensive care units despite robust evidence that effective communication improves patient outcomes and quality metrics. Repeated and varied forms of communication, especially written reinforced with verbal communication, seem to have the strongest effect and show promising results. Common barriers nurses face on their units are identified, and solutions are suggested. This review adds to current knowledge by linking communication to measurable outcomes and examining communication barriers and needs specific to pediatric critical care populations from the provider, parent, and patient perspectives. Hayden, D., M. E. Villanueva-Uy, M. K. Mendoza and D. Wilkinson (2020). "Resuscitation of preterm infants in the Philippines: a national survey of resources and practice." Archives of Disease in Childhood: Fetal and Neonatal Edition 105(2): 209-214.Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK. Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia. Institute of Child Health and Human Development, National Institute of Health, Manila, Philippines. Kangaroo Mother Care Foundation, Manila, Philippines. John Radcliffe Hospital, Oxford, UK. OBJECTIVE: There is a high incidence of preterm birth in low-income and middle-income countries where healthcare resources are often limited and may influence decision making. We aimed to explore the interplay between resource limitations and resuscitation practices for extremely preterm infants (EPIs) in neonatal intensive care units (NICUs) across the Philippines. METHODS: We conducted a national survey of NICUs in the Philippines. Institutions were classified according to sector (private/public), region and level. Respondents were asked about unit capacity, availability of ventilators and surfactant, resuscitation practices and estimated survival rates for EPIs of different gestational ages. RESULTS: Respondents from 103/228 hospitals completed the survey (response rate 45%). Public hospitals reported more commonly experiencing shortages of ventilators than private hospitals (85%vs23%, p<0.001). Surfactant was more likely to be available in city hospitals than regional/district hospitals (p<0.05) and in hospitals classified as Level III/IV than I/II (p<0.05). The financial capacity of parents was a major factor influencing treatment options. Survival rates for EPIs were estimated to be higher in private than public institutions. Resuscitation practice varied; active treatment was generally considered optional for EPIs from 25 weeks' gestation and usually provided after 27-28 weeks' gestation. CONCLUSION: Our survey revealed considerable disparities in NICU resource availability between different types of hospitals in the Philippines. Variation was observed between hospitals as to when resuscitation would be provided for EPIs. National guidelines may generate greater consistency of care yet would need to reflect the variable context for decisions in the Philippines. Hein, K., K. Knochel, V. Zaimovic, D. Reimann, A. Monz, N. Heitkamp, G. D. Borasio and M. Fuhrer (2020). "Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study." Palliative Medicine 34(3): 300-308.Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany. Palliative Care Service, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland. BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks. RESULTS: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. CONCLUSION: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process. Hully, M., C. Barnerias, D. Chabalier, S. Le Guen, V. Germa, E. Deladriere, C. Vanhulle, J. M. Cuisset, B. Chabrol, C. Cances, C. Vuillerot, C. Espil, M. Mayer, M. C. Nougues, P. Sabouraud, J. Lefranc, V. Laugel, F. Rivier, U. W. Louvier, J. Durigneux, S. Napuri, C. Sarret, M. Renouil, A. Masurel, M. L. Viallard and I. Desguerre (2020). "Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports." Front Pediatr 8: 4.Pediatric Neurology Department, Necker-Enfants Malades Hospital, APHP, Paris, France. Physical Rehabilitation Department, Necker-Enfants Malades Hospital, APHP, Paris, France. Clinical Research Department, Necker-Enfants Malades Hospital, APHP, Paris, France. Neonatal Department, Charles Nicolle Hospital, Rouen, France. Pediatric Neurology Department and Neuromuscular Diseases Reference Center, CHU, Lille, France. Pediatric Neurology Department, La Timone Hospital, APHM, Marseille, France. Pediatric Neurology Department, Enfants Hospital, Toulouse, France. Pediatric Physical Rehabilitation Department, Femme Mere Enfants Hospital, Bron, France. Pediatric Neurology Department, Pellegrin Hospital, Bordeaux, France. Pediatric Neurology Department, Armand Trousseau Hospital, APHP, Paris, France. Pediatric Department, American Memorial Hospital, Reims, France. Pediatric Neurology Department, Morvan Hospital, Brest, France. Pediatric Neurology Department, Hautepierre Hospital, Strasbourg, France. Pediatric Neurology Department & Neuromuscular Diseases Reference Center AOC, CHU Montpellier, PhyMedExp, University of Montpellier, INSERM, CNRS, Montpellier, France. Pediatric Neurology Department & Neuromuscular Diseases Reference Center AOC, CHU Montpellier, Montpellier, France. Pediatric Neurology Department, University Hospital, Angers, France. Pediatric Department, South Hospital, Rennes, France. Pediatric Department, CHU Clermont-Ferrand, Clermont-Ferrand, France. Pediatric Department, St-Pierre Hospital, Saint-Denis, France. Genetic Department, Children Hospital, CHU Dijon, Dijon, France. Palliative Care Team, Necker-Enfants Malades Hospital, APHP, Paris, France. Research Team "ETRES", UMR des Cordeliers, Universite de Paris, Paris, France. Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recently been developed that may modify SMA-1 natural history and thus raise ethical concerns about the appropriate level of care for patients. The national Hospital Clinical Research Program (PHRC) called "Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA-1)" was a multicenter prospective study conducted in France between 2012 and 2016 to report palliative practices in SMA-1 in real life through prospective caregivers' reports about their infants' management. Thirty-nine patients were included in the prospective PHRC (17 centers). We also studied retrospective data regarding management of 43 other SMA-1 patients (18 centers) over the same period, including seven treated with nusinersen, in comparison with historical data from 222 patients previously published over two periods of 10 years (1989-2009). In the latest period studied, median age at diagnosis was 3 months [0.6-10.4]. Seventy-seven patients died at a median 6 months of age[1-27]: 32% at home and 8% in an intensive care unit. Eighty-five percent of patients received enteral nutrition, some through a gastrostomy (6%). Sixteen percent had a non-invasive ventilation (NIV). Seventy-seven percent received sedative treatment at the time of death. Over time, palliative management occurred more frequently at home with increased levels of technical supportive care (enteral nutrition, oxygenotherapy, and analgesic and sedative treatments). No statistical difference was found between the prospective and retrospective patients for the last period. However, significant differences were found between patients treated with nusinersen vs. those untreated. Our data confirm that palliative care is essential in management of SMA-1 patients and that parents are extensively involved in everyday patient care. Our data suggest that nusinersen treatment was accompanied by significantly more invasive supportive care, indicating that a re-examination of standard clinical practices should explicitly consider what treatment pathways are in infants' and caregivers' best interest. This study was registered on clinicaltrials.gov under the reference NCT01862042 (https://clinicaltrials.gov/ct2/show/study/NCT01862042?cond=SMA1&rank=8). Hulsey, E. G., R. M. Hill, C. M. Layne, D. A. Gaffney and J. B. Kaplow (2020). "Calculating the incidence rate of sibling bereavement among children and adolescents across the United States: A proposed method." Death Studies 44(5): 303-311.[Hulsey, Eric G.] Univ Pittsburgh, Grad Sch Publ Hlth, 737 South Braddock Ave, Pittsburgh, PA 15221 USA. [Hulsey, Eric G.] Off Data Anal Res & Evaluat, Allegheny Cty Dept Human Serv, Pittsburgh, PA USA. [Hill, Ryan M.; Kaplow, Julie B.] Baylor Coll Med, Dept Pediat, Houston, TX 77030 USA. [Hill, Ryan M.; Kaplow, Julie B.] Texas Childrens Hosp, Houston, TX 77030 USA. [Layne, Christopher M.] Univ Calif Los Angeles, Duke Univ, Natl Ctr Child Traumat Stress, Los Angeles, CA USA. [Layne, Christopher M.] Univ Calif Los Angeles, Dept Psychiat & Biobehav Sci, Los Angeles, CA 90024 USA. [Gaffney, Donna A.] Arizona State Univ, Family Bereavement Program, Tempe, AZ USA. Hulsey, EG (reprint author), Univ Pittsburgh, Grad Sch Publ Hlth, 737 South Braddock Ave, Pittsburgh, PA 15221 USA. eric.hulsey@gmail.com This study proposes a method for calculating the annual incidence rate of sibling bereavement among US youth using national epidemiological data. The proposed model combines data on family household size with national death statistics to calculate the number of siblings affected by the death of a child annually. From 2012 to 2015, an average of 61,389 children per year experienced the death of a sibling, resulting in an estimate of 0.0832% of children bereaved by the death of a sibling annually. Data indicate a need for greater awareness and dialog concerning the frequency with which children experience the death of a sibling. Humberg, A., C. Hartel, T. K. Rausch, G. Stichtenoth, P. Jung, C. Wieg, A. Kribs, A. von der Wense, U. Weller, T. Hohn, D. M. Olbertz, U. Felderhoff-Muser, R. Rossi, N. Teig, F. Heitmann, S. Schmidtke, B. Bohnhorst, M. Vochem, H. Segerer, J. Moller, J. G. Eichhorn, J. Wintgens, R. Bottger, M. Hubert, M. Dordelmann, G. Hillebrand, C. Roll, R. Jensen, M. Zemlin, M. Mogel, C. Werner, S. Schafer, T. Schaible, A. Franz, M. Heldmann, S. Ehlers, O. Kannt, T. Orlikowsky, H. Gerleve, K. Schneider, R. Haase, K. Bockenholt, K. Linnemann, E. Herting and W. Gopel (2020). "Active perinatal care of preterm infants in the German Neonatal Network." Archives of Disease in Childhood: Fetal and Neonatal Edition 105(2): 190-195.Paediatrics, University of Lubeck, Lubeck, Germany. Institute for Medical Biometry and Statistics Lubeck, Lubeck, Germany. Pediatrics, University Hospital Schleswig-Holstein, Lubeck, Germany. Children's Hospital Aschaffenburg-Alzenau, Aschaffenburg, Germany. Neonatology and Pediatric Intensive Care, University Hospital of Cologne, Cologne, Germany. Department of Neonatology, Children's Hospital Hamburg-Altona, Hamburg, Germany. Department of Paediatrics, Evangelical Klinikum Bethel, Bielefeld, Germany. Department of Paediatrics, University of Dusseldorf, Dusseldorf, Germany. Department of Neonatology, Klinikum Sudstadt Rostock, Rostock, Germany. Department of Neonatology, University Hospital of Essen, Essen, Germany. Vivantes Klinikum Neukolln, Berlin, Germany. Paediatrics, University Hospital, Bochum, Germany. Department of Paediatrics, Klinikum Dortmund, Dortmund, Germany. Department of Neonatology, Asklepios Hospital Hamburg-Barmbek, Hamburg-Barmbek, Germany. Pediatric Pulmonology and Neonatology, Hannover Medical School, Hannover, Germany. Department of Neonatology, Olgahospital Stuttgart, Stuttgart, Germany. Neonatology, Krankenhaus Barmherzige Bruder, Regensburg, Germany. Department of Paediatrics, Saarbrucken General Hospital, Saarbrucken, Germany. Department of Paediatrics, Klinikum Leverkusen gGmbH, Leverkusen, Germany. Department of Paediatrics, Hospital Monchengladbach, Monchengladbach, Germany. Department of Neonatology, Universitatsklinikum Magdeburg, Magdeburg, Germany. Department of Neonatology and Pediatric Intensive Care, DRK Children's Hospital, Siegen, Germany. Department of Paediatrics, Diakonissen Hospital Flensburg, Flensburg, Germany. Department of Paediatrics, Hospital Itzehoe, Itzehoe, Germany. Neonatology and Paediatric Intensive Care, Vest Children's Hospital Datteln, University Witten-Herdecke, Datteln, Germany. Department of Paediatrics, Westkustenklinikum Heide, Heide, Germany. General Pediatrics and Neonatology, Saarland University, Homburg/Saar, Germany. Department of Neonatology and Pediatric Intensive Care, University Hospital Carl Gustav Carus, Dresden, Germany. Department of Paediatrics, University of Munster, Munster, Germany. Children's Hospital (Stadtisches Klinikum) Nurnberg, Nurnberg, Germany. Department of Paediatrics, University Medical Center Mannheim, Mannheim, Germany. Neonatology, University of Tubingen, Tubingen, Germany. HELIOS Children's Hospital Wuppertal, Witten/Herdecke University, Wuppertal, Germany. Department of Neonatology, Burgerhospital Frankfurt, Frankfurt, Germany. Helios Klinik Schwerin, Schwerin, Germany. Neonatology, University of Aachen, Aachen, Germany. Department of Paediatrics, Christophorus Kliniken Coesfeld, Coesfeld, Germany. Department of Paediatrics, GFO Hospitals Bonn, Bonn, Germany. Children's Hospital, University of Halle, Halle/Saale, Germany. Children's Hospital of the City of Cologne, Koln, Germany. Department of Paediatrics, University of Greifswald, Greifswald, Germany. OBJECTIVE: To determine if survival rates of preterm infants receiving active perinatal care improve over time. DESIGN: The German Neonatal Network is a cohort study of preterm infants with birth weight <1500 g. All eligible infants receiving active perinatal care are registered. We analysed data of patients discharged between 2011 and 2016. SETTING: 43 German level III neonatal intensive care units (NICUs). PATIENTS: 8222 preterm infants with a gestational age between 22/0 and 28/6 weeks who received active perinatal care. INTERVENTIONS: Participating NICUs were grouped according to their specific survival rate from 2011 to 2013 to high (percentile >P75), intermediate (P25-P75) and low (9 out of 10 and were all ranked top 10 communicators. CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication. Many simple core behaviors described by parents and clinicians can be emulated to improve communication with parents before, during, and after resuscitations in pediatrics. Marsh, R., D. D. Matlock, J. A. Maertens, A. Rutebemberwa, M. A. Morris, T. C. Hankinson and T. D. Bennett (2020). "Parental involvement in decision making about intracranial pressure monitor placement in children with traumatic brain injury." Journal of Neurosurgery-Pediatrics 25(2): 183-191.[Marsh, Rebekah; Matlock, Daniel D.; Maertens, Julie A.; Morris, Megan A.; Hankinson, Todd C.; Bennett, Tellen D.] Univ Colorado, Sch Med, Dept Med, Adult & Child Consortium Hlth Outcomes Res & Deli, Aurora, CO USA. [Matlock, Daniel D.] Univ Colorado, Dept Med, Div Geriatr Med, Sch Med, Aurora, CO USA. [Rutebemberwa, Alleluiah] Childrens Hosp, Colorado Res Inst, Denver, CO 80218 USA. [Hankinson, Todd C.] Univ Colorado, Sch Med, Pediat Neurosurg, Aurora, CO USA. [Bennett, Tellen D.] Univ Colorado, Sch Med, Pediat Crit Care, Aurora, CO USA. [Matlock, Daniel D.] VA Eastern Colorado Geriatr Res Educ & Clin Ctr, Denver, CO USA. [Hankinson, Todd C.] Childrens Hosp, Colorado Ctr Res Outcomes Childrens Surg, Aurora, CO USA. Bennett, TD (reprint author), Univ Colorado, Sch Med, Childrens Hosp Colorado, Aurora, CO 80045 USA. tell.bennett@ucdenver.edu OBJECTIVE Little is known about how parents of children with traumatic brain injury (TBI) participate or feel they should participate in decision making regarding placing an intracranial pressure (ICP) monitor. The objective of this study was to identify the perspectives and decisional or information needs of parents whose child sustained a TBI and may require an ICP monitor. METHODS This was a qualitative study at one US level I pediatric trauma center. The authors conducted in-depth semistructured interviews with 1) parents of critically injured children who have sustained a TBI and 2) clinicians who regularly care for children with TBI. RESULTS The authors interviewed 10 parents of 7 children (60% were mothers and 80% were white) and 28 clinicians (17 ICU clinicians and 11 surgeons). Overall, the authors found concordance between and among parents and clinicians about parental involvement in ICP monitor decision making. Parents and clinicians agreed that decision making about ICP monitoring in children who have suffered TBI is not and should not be shared between the parents and clinicians. The concordance was represented in 3 emergent themes. Parents wanted transparency, communication, and information (theme 2), but the life-threatening context of this decision (theme 1) created an environment where all involved reflected a clear preference for paternalism (theme 3). CONCLUSIONS The clear and concordant preference for clinician paternalistic decision making coupled with the parents' needs to be informed suggests that a decision support tool for this decision should be clinician facing and should emphasize transparency in collaborative decision making between clinicians. McLaughlin, S. N., M. K. Song, V. Hertzberg and A. J. Piazza (2020). "Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital." Advances in Neonatal Care 20(2): 136- 141.Emory University, Atlanta, Georgia (Drs McLaughlin, Song, and Piazza); Center for Nursing Excellence in Palliative Care (Dr Song) and Center for Data Science (Dr Hertzberg), Nell Hodgson Woodruff School of Nursing, Atlanta, Georgia; and Children's Healthcare of Atlanta at Egleston, Georgia (Dr Piazza). BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or lifethreatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. METHODS: This was a retrospective medical record review. FINDINGS: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. IMPLICATIONS FOR PRACTICE: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. IMPLICATIONS FOR RESEARCH: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms. McMahon, E. and Y. S. Chang (2020). "From Surviving to Thriving - Parental Experiences of Hospitalised Infants with Congenital Heart Disease Undergoing Cardiac Surgery: A Qualitative Synthesis." Journal of Pediatric NursingNursing Care of Children & Families 51: 32-41.[McMahon, Emma; Chang, Yan-Shing] Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Pall, Dept Child & Family Hlth, London, England. Chang, YS (reprint author), Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Pall, Dept Child & Family Hlth, London, England. yan-shing.chang@kcl.ac.uk Problem: Congenital heart disease (CHD) is the most common congenital abnormality in infants and over one third of these infants will require surgical intervention in the neonatal period. This qualitative synthesis aimed to explore parental experiences of surgery and hospitalisation in the intensive care environment for the treatment of their infant's CHD in the first year of life in order to inform practice. Eligibility criteria: Qualitative primary research and qualitative elements of mixed methods studies published in English between January 2009 and February 2019 were eligible if they addressed the experiences and perspectives of parents whose infants had CHD undergoing cardiac surgery in the first year of life. Sample: Three hundred and forty-nine papers were screened. Six papers, with three of them from the same larger study, were included. Results: Five themes were developed from thematic synthesis. They are (1) intense conflicting emotions from heartbreak to joy, (2) the helplessness and uncertainty of waiting, (3) making sense of it all, (4) the power of relationships, and (5) parenting despite the challenges. Conclusion: Parents experienced intense and fluctuating emotions, and found ways of coping. The integral role of healthcare professionals/nurses during this period was also evident. (C) 2019 Elsevier Inc. All rights reserved. McManus, K. and P. S. Robinson (2020). "A thematic analysis of the effects of compassion rounds on clinicians and the families of NICU patients." Journal of Health Care Chaplaincy: 1-12.AdventHealth Research Institute, Orlando, FL, USA. The correlation between spiritual wellness and clinical outcomes is widely established in the literature. This thematic analysis illuminates the experiences of clinicians, chaplains, and parents of Neo-natal Intensive Care Unit (NICU) patients who participated in Compassion Rounds, spiritual care interventions that focus solely on emotional and spiritual well-being, rather than physical diagnoses. Clinicians and families participated in semi-structured interviews and focus groups. The results showed that Compassion Rounds had positive effects on spiritual wellness for NICU parents and their health care providers, while also allowing chaplains to model and provide spiritual care for physicians. Compassion Rounds enabled physicians to learn from chaplains and deliver effective spiritual wellness interventions within their limited available time. Compassion Rounds had a restorative effect on caregivers and have the potential to prevent or overcome burnout, return meaning to the work of clinicians, and create trust within multidisciplinary care teams. Mekelenkamp, H., A. C. Lankester, M. B. Bierings, F. J. W. Smiers, M. C. de Vries and M. C. Kars (2020). "Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"." Pediatric Blood & Cancer 67(5): e28229.Department of Pediatrics, Pediatric Stem Cell Transplantation, Leiden University Medical Centre, Leiden, The Netherlands. Department of Medical Ethics and Health Law, Leiden University Medical Centre, Leiden, The Netherlands. Pediatric Stem Cell Transplantation Program, Princess Maxima Centre and University Medical Centre, Utrecht, The Netherlands. Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, The Netherlands. BACKGROUND: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT. METHODS: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed. RESULTS: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decisionmaking" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival. DISCUSSION: Parents experienced EOL decisionmaking mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care. Mesukko, J., S. Turale, U. Jintrawet and S. Niyomkar (2020). "Palliative Care Guidelines for Physicians and Nurses Caring for Children and Their Families in the Pediatric Intensive Care Units: A Participatory Action Research Study." Pacific Rim International Journal of Nursing Research 24(2): 202-218.[Mesukko, Jutarat; Turale, Sue; Jintrawet, Usanee; Niyomkar, Srimana] Chiang Mai Univ, Fac Nursing, Chiang Mai, Thailand. [Turale, Sue] Int Council Nurses, Geneva, Switzerland. Mesukko, J (reprint author), Chiang Mai Univ, Fac Nursing, Chiang Mai, Thailand. jutarat.m@cmu.ac.th; panchoandharley@hotmail.com; ujjusanee@gmail.com; srimana.n@cmu.ac.th Pediatric palliative care in intensive care units entails challenging tasks for healthcare professionals, and distressing times for parents and families of children around the world. It is vital that care is of the highest quality and is focused on the needs of the child and family members. Guidelines for such care were urgently needed in Thailand for physicians and nurses caring for the children and their families to enhance their quality of life, provide a good death for children, and appropriate support for families. A 5-phase participatory action research study was conducted in a university hospital in northern Thailand, and findings from the first three phases are reported here. Forty-four healthcare professionals, consisting of physicians, registered nurses and practical nurses, working at two pediatric intensive care units in a university hospital in northern Thailand were purposively recruited. In-depth interviews and focused group discussions were the primary means of collecting data. Data were analyzed by content analysis Findings revealed five critical components that needed to be included in the Palliative Care Guidelines for Physicians and Nurses in Pediatric Intensive Care: Breaking bad news, Decision making, Care before death, Imminent death care, and Care after death. Nurses and physicians can use the guidelines to ensure a dignified death and quality of palliative care for a child in a pediatric intensive care unit. The benefit of the guidelines can be extended to support a child's family members through their difficult times and experiences. Our findings also help to inform the international community of nurses and physicians caring for children in palliation. The guidelines will distributed to different locations for testing to ensure relevancy for practice and may be adapted for contextual and cultural relevancy elsewhere. Michie, M. (2020). "Is preparation a good reason for prenatal genetic testing? Ethical and critical questions." Birth Defects Res 112(4): 332-338.Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio. As prenatal genetic testing technologies have become both easier and more accessible, women are increasingly choosing prenatal genetic testing for a reason that is largely unexamined in the clinical literature: preparation. This reasoning, offered not only from pregnant women but frequently from testing laboratories and health care providers, reflects long-held assumptions that prenatal genetic results-properly delivered and followed with information, clinical surveillance, and/or social supportsprepare families for a child with a genetic condition, and even improve health and social outcomes for children and families. But these assumptions remain unexamined, since there are no clear definitions or recommendations for prenatal preparation. Preparation may refer to several overlapping ways in which prenatal information may change parents' approach to the rest of the pregnancy, including: (a) clinical activities, including surveillance, interventions, and delivery planning; (b) social and informational support, such as interacting with patient support groups and gathering information about quality of life; and (c) psychological "coping" or adjustments to the reality of raising a child with a genetic condition. These meanings and activities intersect and influence one another and form a foundation for postnatal family adaptation, but they are rarely parsed out in studies examining the impact of prenatal diagnosis. Based on previous work delineating conceptual models as middle terms between theory and reality, we are building a conceptual model that incorporates an empirical understanding of meanings and actions encompassed by prenatal preparation. Comparing diverse families' expectations with the resources they are offered can identify (mis)matches between priorities and approaches. Mohammadi, F., K. Oshvandi and H. K. Med (2020). "Male nursing students' perception of dignity in neonatal intensive care units." Nursing Ethics 27(2): 381-389.Mother and Child Care Research Center,Hamadan University of Medical Sciences, Hamadan, Iran. University of the West of Scotland, Scotland. INTRODUCTION: Maintaining dignity is one of the most important human rights. However, maintaining and promoting the dignity of nursing students as an important caregiver group has scarcely been considered. Dignity can be viewed as an abstract concept particularly in relation to the perspective of male nursing student perspective. Therefore, more investigation is required to explore the male students' understanding of the concept of dignity. OBJECTIVES: The purpose of this study is to define and explain the concept of dignity among male nursing students in the neonatal intensive care unit. RESEARCH DESIGN: This is a qualitative content analysis study. The data were collected through semi-structured individual interviews. The data were analyzed by conventional content analysis method. PARTICIPANTS AND RESEARCH CONTEXT: Twenty male nursing students in public health centers in Iran were selected by targeted sampling to achieve data saturation between February 2017 and November 2017. FINDINGS: The findings of this study were presented in three main themes, including "extensive support," "belief in ability," and "participation in decision making," and 7 sub-categories of data were extracted. ETHICAL CONSIDERATIONS: The study's protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and the ethical principles were followed throughout the study. DISCUSSION AND CONCLUSION: According to the findings of the study, male nursing students required extensive support, and their academic and practical skills required to be respected; in addition, they should be involved in decision making, because in such an environment, the dignity of these students will be maintained and promoted. Therefore, it is suggested that a cultural, professional, and institutional background in which all components of the male nursing student's dignity are protected and emphasized should be provided. Morrison, W. and V. Madrigal (2020). "We Still Round the Next Day." Pediatrics 145(3).Departments of Anesthesiology and Critical Care Medicine and Palliative Care, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and morrisonw@email.chop.edu. Division of Critical Care Medicine, Department of Pediatrics, Children's National Health Systems, Washington, DC. Mrelius, E., K. Kling, E. Haraldsson and S. Alehagen (2020). "You can't flight, you need to fight - a qualitative study of mothers' experiences of feeding extremely preterm infants." Journal of Clinical Nursing.School of Nursing and Midwifery, Edith Cowan University, 270 Joondalup Drive, Joondalup, Western Australia, Australia. Perth Children's Hospital, Nedlands, Western Australia, Australia. Division of Nursing Sciences and Reproductive Health, Department of Health, Medicine and Caring Sciences, Faculty of Health Sciences, Linkoping University, 581 83, Linkoping, Sweden. AIM: To describe mother's experiences of feeding their extremely preterm infant. BACKGROUND: When an infant is born extremely preterm, there is a long rocky road for the mother if she wants to breastfeed. Some manage to reach their goals, others do not. Studies of feeding extremely preterm infants in the neonatal intensive care unit (NICU) are scarce. DESIGN: A qualitative method with an inductive approach. METHODS: Nine mothers giving birth to extremely preterm infants were interviewed by telephone after discharge from the NICU. The interviews were transcribed verbatim and analysed with qualitative content analysis. The COREQ checklist was followed. Findings The overall theme was "you can't flight, you need to fight". The theme reflects the mothers will to do the best for their infants even if the struggle with milk expression and breastfeeding practice evoked feelings of helplessness, exposure, worry, and disappointment. The categories forming the theme were: The wish to provide own breastmilk; For the infant's best; Loss of control; Help to reach the goals. CONCLUSION: The mothers had a strong will to provide breastmilk to their infants but requested more support in order to be successful. RELEVANCE TO CLINICAL PRACTICE: There is a need for evidence based support programs for mothers of extremely preterm infants to encourage them to persevere with milk expression and breastfeeding over time. O'Hare, V. (2020). "The plight of the well sibling: A psychoanalytic reflection on a counselling relationship with the ‘healthy child’ in crisis, in a family living with chronic disease." Psychodynamic Practice: Individuals, Groups and Organisations 26(1): 34-46.O'Hare, Veronica This paper is a case study that is the result of a research project that involved using psychoanalytic observation to reflect on a series of counselling sessions. It provides a description of the work and shares some of the psychoanalytically-informed themes that emerged from the experience. The subject of the case is David, a boy who had lost one brother to cystic fibrosis and who had another brother with the disease. David was free from the condition but in crisis. The themes that emerge from reflecting on the sessions helped to illuminate the use of defences to manage the anxiety inherent in the situation for David and the experience of living with the constant, unrelenting theme of death in a young life. (PsycINFO Database Record (c) 2020 APA, all rights reserved) Orovou, E., M. Dagla, G. Iatrakis, A. Lykeridou, C. Tzavara and E. Antoniou (2020). "Correlation between Kind of Cesarean Section and Posttraumatic Stress Disorder in Greek Women." International Journal of Environmental Research and Public Health 17(5).Department of Midwifery, University of West Attica, 12243 Athens, Greece. National and Kapodistrian University of Athens, Faculty of Medicine, 15784 Athens, Greece. A birth experience with cesarean section (CS) can be a cause of the development of post-traumatic stress disorder after a cesarean (PTSD-AC) or profile PTSD, for a percentage of women. So far, there is no data on the frequency of PTSD-AC in Greece and this syndrome is often associated with other mental disorders of the postpartum period. The purpose of this research is to associate the kind of CS with PTSD-AC for Greek mothers and the combination of factors that make them less resistant to trauma. A sample of ahundred and sixty-six mothers who gave birth with emergency cesarean section (EMCS) and elective cesarean section (ELCS) at a Greek University hospital have consented to participate in the two phases of the survey, in the 2nd day postpartum and a follow-up in the 6th week postpartum. Medical/demographic data and a life events checklist (LEC-5) with Criterion A and post-traumatic stress checklist (PCL-5) were used to diagnose PTSD and PTSD Profile. Out of166 mothers enrolled, 160 replied to the follow-up (96.4%), ELCS 97 (97%) and EMCS 63 (95%). Twenty (31.7%) EMCS had PTSD and nine (14.3%) had Profile. One (1%) ELCS had PTSD and 4 (4.1%) had Profile. This survey shows a high prevalence rate of PTSD after EMCS with additional risk factors of preterm labor, inclusion in the Neonatal Intensive Care Unit (NICU), a lack of breastfeeding, and a lack of support from the partner. Padula, A. M., S. Shariff-Marco, J. Yang, J. Jain, J. Liu, S. M. Conroy, S. L. Carmichael, S. L. Gomez, C. Phibbs, J. Oehlert, J. B. Gould and J. Profit (2020). "Multilevel social factors and NICU quality of care in California." Journal of Perinatology.Department of Obstetrics, Gynecology and Reproductive Sciences, University of California, San Francisco, San Francisco, CA, USA. Amy.Padula@ucsf.edu. Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, CA, USA. Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, San Francisco, CA, USA. Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, USA. Health Economics Resource Center, VA Palo Alto Health Care System, Menlo Park, CA, USA. OBJECTIVE: Our objective was to incorporate social and built environment factors into a compendium of multilevel factors among a cohort of very low birth weight infants to understand their contributions to inequities in NICU quality of care and support providers and NICUs in addressing these inequities via development of a health equity dashboard. STUDY DESIGN: We examined bivariate associations between NICU patient pool and NICU catchment area characteristics and NICU quality of care with data from a cohort of 15,901 infants from 119 NICUs in California, born 2008-2011. RESULT: NICUs with higher proportion of minority racial/ethnic patients and lower SES patients had lower quality scores. NICUs with catchment areas of lower SES, higher composition of minority residents, and more household crowding had lower quality scores. CONCLUSION: Multilevel social factors impact quality of care in the NICU. Their incorporation into a health equity dashboard can inform providers of their patients' potential resource needs. Pellikka, H. K., T. Polkki, U. Sankilampi and M. Kangasniemi (2020). "Finnish parents' responsibilities for their infant's care when they stayed in a single family room in a neonatal intensive care unit." Journal of Pediatric Nursing.Kuopio University Hospital, Department of Paediatrics, P.O. Box 100, 70029 KYS, Finland. Electronic address: hanna-kaisa.pellikka@kuh.fi. Department of Children and Women, Oulu University Hospital, P.O. Box 23, FIN-90029 Oulu, Finland. Electronic address: tarja.polkki@ppshp.fi. Kuopio University Hospital, Department of Paediatrics, P.O. Box 100, 70029 KYS, Finland. Department of Nursing Science, Faculty of Medicine, University of Turku, 20014, Finland. PURPOSE: To describe parents' perceptions of their responsibilities for their infant's care during admission to a single family room in a neonatal intensive care unit (NICU). DESIGN AND METHODS: A qualitative study with semi-structured individual interviews conducted at a family-centered level III Finnish NICU in late 2016 and early 2017. The participants were 10 mothers and nine fathers of infants aged from six days to eight months. The data were analyzed with inductive content analysis. RESULTS: The parents wanted to take responsibility for their infant's care during their stay in a single family room in the NICU, because it prepared them for their infant's discharge. The mothers and fathers reported that their responsibilities supported them as they grew into parenthood and enabled their infants' rights. On the other hand, the parents needed nurses to empower them to commit to, and take, responsibility for their infant's care and share decision making. The nurses also taught the parents caring skills. CONCLUSIONS: Empowering parents to take responsibility enabled their infant's rights during their stay in a single family room in the NICU. More research is needed about how nurses transfer these responsibilities to parents and how those are connected to the infant's rights and well-being. PRACTICE IMPLICATIONS: Organizations who provide single family rooms in NICUs need to develop guidelines that facilitate the responsibilities that parents and nurses have to care for the infants. Although parents are the infant's primary caregivers, they depend on nurses to ensure their infant is safely cared for. Pineda, R., M. Wallendorf and J. Smith (2020). "A pilot study demonstrating the impact of the supporting and enhancing NICU sensory experiences (SENSE) program on the mother and infant." Early Human Development 144: 105000.Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, United States of America; Department of Pediatrics, Washington University School of Medicine, St. Louis, MO, United States of America; University of Southern California, Chan Division of Occupational Science and Occupational Therapy, United States of America; Keck School of Medicine, Department of Pediatrics, United States of America. Electronic address: bobbi.pineda@chan.usc.edu. Division of Biostatistics, Washington University, St. Louis, MO, United States of America. St. Louis Children's Hospital, Department of Quality, Safety, and Practice Excellence, St Louis, MO, United States of America. AIM: To explore differences in maternal mental health and infant neurobehavioral outcome among infants who received and did not receive the Supporting and Enhancing NICU Sensory Experiences (SENSE) program. STUDY DESIGN: Eighty preterm infants (50 receiving standard-of-care and 30 receiving the SENSE program) born 0.05). In multivariable analyses, shared decision-making, education and health literacy related to less decision regret (p's < 0.05). CONCLUSIONS: These data suggest the importance of shared decision-making during NICU stays. Studies should identify ways to support parents through NICU decision-making. Stanak, M. (2020). "Neonatology in Austria: ethics to improve practice." Medicine, Health Care, and Philosophy.Austrian Institute for Health Technology Assessment, Garnisongasse 7/20, Vienna, 1090, Austria. michal.stanak@hta.lbg.ac.at. Faculty of Philosophy and Education, University of Vienna, Vienna, Austria. michal.stanak@hta.lbg.ac.at. In the world of Austrian neonatal intensive care units, the role of ethics is recognized only partially. The normatively tense cases that are at the backdrop of this essay concern the situations around the limit of viability (weeks 22 + 0 days to 25 + 6 days of gestation), which is the point in the development of an extremely preterm infant at which there are chances of extra-uterine survival. This essay first outlines the key explicit ethical challenges that are mainly concerned with notions of uncertainty and best interest. Then, it attempts to elucidate the less explicit ethical challenges related to the notion of nudging in the neonatal practice and argue that the role of ethics needs to be recognized more-with the focus on the role of virtue ethics-in order to improve the practice of neonatal medicine. Stub, T., A. E. Kristoffersen, G. Overvag and M. C. Jong (2020). "An integrative review on the information and communication needs of parents of children with cancer regarding the use of complementary and alternative medicine." BMC Complement Med Ther 20(1): 90.National Research Center in Complementary and Alternative Medicine (NAFKAM), Department of Community Medicine, Faculty of Health Sciences, UiT The Arctic University of Norway, Hansine Hansens veg 19, 9019, Tromso, Norway. trine.stub@uit.no. National Research Center in Complementary and Alternative Medicine (NAFKAM), Department of Community Medicine, Faculty of Health Sciences, UiT The Arctic University of Norway, Hansine Hansens veg 19, 9019, Tromso, Norway. Science and Health Library, UiT The Arctic University of Norway, Hansine Hansens veg 19, 9019, Tromso, Norway. BACKGROUND: Parents often choose Complementary and Alternative Medicine (CAM) as a supportive agent with the aim to reduce cancer treatment-related symptoms in their children. Therefore, it is necessary to understand parents information and communication needs regarding CAM. The aim of the present study was to review the research literature as to identify the information and communication needs of parents of children with cancer, and the children themselves, regarding the use of CAM. METHODS: An integrative systematic review design was chosen. Searches were performed in AMED, CAMbase, CINAHL (Ebsco), EMBASE, PubMed and PsycInfo, Theme eJournals and Karger. The search was limited to studies published in English, German, Dutch, and the Scandinavian languages. Using predefined inclusion and exclusion criteria, two reviewers independently screened the title and abstracts of the relevant papers. A data extraction form and critical appraisal checklists were used to extract data for analysis, and a mixed methods synthesis was applied. RESULTS: Out of 24 studies included, 67% were of quantitative and 33% of qualitative study design. Five main themes emerged from the analysis of 21 studies: Information on CAM, sources of CAM information, communication about CAM, informed decision-making on CAM, and Risk/benefit of CAM. The majority of the parents did not disclose the CAM use of their children because they feared negative reactions from the attending oncologist. To make informed treatment decisions for their children, parents wanted unbiased information about CAM and would act accordingly. They demand open communication about these modalities and respect for the family's autonomy when choosing CAM for their children. CONCLUSION: There is an urgent need for parents of children with cancer for high quality information on CAM from reliable and scientific sources. Development of authoritative evidence-based decision tools is thus warranted to enable health care professionals and parents of children with cancer to make well informed, individual decisions concerning CAM. Sullivan, A. and C. Cummings (2020). "Historical Perspectives: Shared Decision Making in the NICU." Neoreviews 21(4): e217-e225.Department of Newborn Medicine, Boston Children's Hospital, Boston, MA. The ethical dilemmas and predominant frameworks surrounding decision making for critically ill newborns have evolved substantially over the last 40 years. A shared decision-making approach is now favored, involving an exchange of information between parents and clinicians that emphasizes parental values and preferences, resulting in a personalized approach to decision making. In this review, we summarize the history of clinical decision making with a focus on the NICU, highlight different models of decision making, describe the advantages and current limitations of shared decision making, and discuss the ongoing and future challenges of decision making in the NICU amidst medical innovations and emerging technologies. Sullivan, J. E., L. H. Gillam and P. T. Monagle (2020). "After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child." Journal of Paediatrics and Child Health.The Children's Bioethics Centre, The Royal Children's Hospital, Melbourne, Victoria, Australia. Centre for Health Equity, The University of Melbourne, Melbourne, Victoria, Australia. Department of Clinical Haematology, The Royal Children's Hospital, Melbourne, Victoria, Australia. Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia. Critical Care and Neurosciences Theme, Murdoch Children's Research Institute, Melbourne, Victoria, Australia. AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. METHODS: A qualitative methodology was used. Semistructured interviews were conducted with parents who had discussed ELDs for their child who had a lifelimiting condition and had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decisionmaker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-oflife decision-making knowledge is confirmed and extended, and clinical support for parents informed. Tete, C., A. Grellier and V. Lefevre (2020). "Children's literature for hospitalised child." Medecine Palliative 19(1): 48-51.[Tete, Caroline] Ctr Natl Soins Palliatifs & Fin Vie, 35 Rue Plateau, F-75019 Paris, France. [Grellier, Anne; Lefevre, Viviane] Fondat Oeuvre Croix St Simon, Pole Hospitalisat Domicile, Pediatrie, 35 Rue Plateau, F-75019 Paris, France. Tete, C (reprint author), Ctr Natl Soins Palliatifs & Fin Vie, 35 Rue Plateau, F-75019 Paris, France. c.tete@spfv.fr The book is undeniably associated to childhood, to the bedtime ritual where parents often begin by "Once upon a time". The purpose of this article is to show the role that children's literature can play for children of all ages, hospitalized, seriously ill or at the end of their lives, as well as their siblings. The child appropriates the book differently according to his/her age: if an infant will have a sensory relation to the book (essentially the touch and the hearing), the child will be carried away by the history, forgetting for a time the care-related pain. As for adolescents and young adults, their identification with a character who understands them, who lives the same thing, will enable them to face the end of life at an age where everything is possible. (C) 2020 Elsevier Masson SAS. All rights reserved. Teti, S. L. (2020). "A Listening Tour: Pediatric Clinical Ethics Rounds." Journal of Clinical Ethics 31(1): 27-41.Core Faculty and Lecturer on Global Health and Social Medicine; Director of the Writing Support Program; Executive Editor of the Harvard Medical School Bioethics Journal; and Executive Editor of Pediatric Ethicscope at the Center for Bioethics, Harvard Medical School, Boston, Massachusetts USA. Stowe_Teti@hms.harvard.edu. A two-year rounding program was initiated by the clinical ethics consult service (CECS) to improve ethics program integration and utilization at our 323-bed tertiary care pediatric hospital. Two critical variables were identified for improvement. One: identification of cases in which an ethics consult would have benefited clinical care but was not requested. Two: earlier detection of cases for which the medical team and/or family eventually sought ethics consultation but that worsened during the delay. Improvement relied on eliciting dialogue with the CECS by the medical team and/or patients and families, when it had either not occurred before or had not occurred when it would have been most beneficial. The indirect nature of the improvements sought posed a specific challenge: how does one elicit such action from others? How does a small program with less than one full-time equivalent position that is dedicated to clinical ethics, and little funding, effect such a process change across an organization with more than 600 physicians, 2,000 nurses, 600 medical students, and thousands of other clinicians and staff? The following accounts such an effort and the accompanying two-year study undertaken to document the results. The data presented demonstrate improvement in both identified variables: increased overall utilization of the CECS and earlier detection of cases in which the CECS is typically engaged. Tian, X. and D. H. Solomon (2020). "Grief and Post-traumatic Growth Following Miscarriage: The Role of Meaning Reconstruction and Partner Supportive Communication." Death Studies 44(4): 237-247.[Tian, Xi; Solomon, Denise Haunani] Penn State Univ, Dept Commun Arts & Sci, University Pk, PA 16802 USA. Tian, X (reprint author), Penn State Univ, Dept Commun Arts & Sci, University Pk, PA 16802 USA. xpt5003@psu.edu This study used the meaning reconstruction model of bereavement and the theory of conversationally induced reappraisals to investigate factors that influence the association between grief following a miscarriage and post-traumatic growth. Participants included 298 women who had experienced a miscarriage within the previous year. As predicted, a moderate level of grief corresponded with the most post-traumatic growth among bereaved mothers and meaning reconstruction and partner supportive communication moderated this association. The results clarify how grief is integral to post-traumatic growth in the aftermath of a miscarriage and how intrapersonal and interpersonal coping resources can foster post-traumatic growth in the face of grief. Walters, A. and J. Grosse (2020). "Is This My Home? A Palliative Care Journey Through Life and Death in the NICU: A Case Report." Advances in Neonatal Care 20(2): 127-135.Neonatal Intensive Care Unit, Children's Hospital Colorado, Aurora. BACKGROUND: With advancements in neonatology, patients in the neonatal intensive care unit (NICU) are living in the hospital with complex life-limiting illnesses until their first birthday or beyond. As palliative care (PC) becomes a standard of care in neonatology, a level IV NICU developed an interdisciplinary PC team with the mission to ease the physical, mental, and moral distress of the patients, families, and staff. This case report highlights the teamwork and long-term palliative care and ultimately end-of-life care that an infant received by this dedicated NICU palliative care team. CLINICAL FINDINGS: This case discusses a premature ex-27-week gestation male infant who initially presented to the emergency department at 5 months of age with significant tachypnea, increased work of breathing, and poor appetite. PRIMARY DIAGNOSIS: The primary diagnosis was severe pulmonary vein stenosis resulting in severe pulmonary hypertension. INTERVENTIONS: The severity of the infant's pulmonary vein stenosis was incurable. He required substantial life-extending surgical procedures and daily intensive care interventions. In addition to his life-extending therapies, the infant and his family received palliative care support by the NICU PC team and the hospital-wide PC team (REACH team) throughout his admission. This was specialized care that focused on easing pain and suffering while also addressing any social/emotional needs in the infant, his family, and in the hospital staff. The PC teams also focused on protecting the families' goals of care, memory making, and providing a positive end-of-life experience for the infant and his family. The infant's end-of-life care involved providing adequate pain and symptom management, education, and communication to his family about the dying process and allowing unlimited family time before and after his death. OUTCOMES: After 11 months in the NICU and despite aggressive therapies, he required more frequent trips to the cardiac catheterization laboratory for restenosis of his pulmonary veins. He was dependent on iNO to treat his pulmonary hypertension and he continued to require an ICU ventilator. His parents ultimately decided to pursue comfort care. He died peacefully in his mother's arms. PRACTICE RECOMMENDATIONS: The American Academy of Pediatrics and the National Association of Neonatal Nurses both have statements recommending that palliative care be standard of care in NICUs. Establishing a NICU-dedicated interdisciplinary PC team can improve outcomes for infants and families living in the NICU with complex life-limiting illnesses. Weigl, M., M. Heinrich, J. Keil, J. Z. Wermelt, F. Bergmann, J. Hubertus and F. Hoffmann (2020). "Team performance during postsurgical patient handovers in paediatric care." European Journal of Pediatrics 179(4): 587-596.Institute and Outpatient Clinic for Occupational, Social, and Environmental Medicine, LudwigMaximilians-University Munich, Ziemssenstrasse 1, D-80336, Munich, Germany. matthias.weigl@med.lmu.de. Institute and Outpatient Clinic for Occupational, Social, and Environmental Medicine, Ludwig-MaximiliansUniversity Munich, Ziemssenstrasse 1, D-80336, Munich, Germany. Dr. von Hauner University Children's Hospital, Ludwig-Maximilians-University Munich, Munich, Germany. Department of Anaesthesiology, Ludwig-Maximilians-University Munich, Munich, Germany. Department of Pediatric Surgery, Dr. von Hauner University Children's Hospital, Ludwig-Maximilians-University Munich, Munich, Germany. Postsurgical handover of paediatric patients from operating rooms to intensive care units is a critical moment. This process is susceptible to errors and inefficiencies particularly if poor teamwork in this multidisciplinary and ad hoc collaboration occurs. Through combining provider- and observer-rated team performance, we aimed to determine agreement levels on team performance and associations with mental demands, disruptions, and stress. An observational and multisource study of provider and concomitant expert-observer ratings was established. In an Academic Paediatric Hospital, we conducted standardized observations of postsurgical handovers to PICU. We applied established observational and self-reported teamwork tools. Nested fixed and mixed models were established to estimate agreement within teams, between providers' and observer's ratings, as well as for estimations between team performance and mental demands, disruptions, and stress outcomes. Thirty-one postsurgical patient handovers were included with overall 109 ratings of involved providers. Provider-perceived team performance was rated high. Within the receiving sub-team, situation awareness was perceived lower compared to the handoff sub-team [F(df = 1) = 4.41, p = .04]. Inter-provider agreement on handover team performance was low for the overall team yet higher within handover sub-teams. We observed that high level of distractions during the handover was associated with inferior team performance rated by observers (B = - 0.72, 95% CI = - 1.44, - 0.01).Conclusion: We observed substantial disagreements on how involved professionals as well as observers rated teamwork during patient transfers. Investigations into paediatric teamwork and particular team-based handovers should carefully consider if concurrent provider and observer assessments are a valid and reliable way to evaluate teamwork in paediatric care. Common handover language should be established and mandatory before jointly evaluating this process. Our findings advocate also that handovers should be performed under low levels of distractions.What is Known:* Efficient teamwork during transfers of critically ill children is fundamental to quality and safety of handover practice.* Postoperative handovers are often performed by ad hoc teams of caregivers with multiple backgrounds and are prone to suboptimal team performance, communication, and information transfer.What is New:* Our provider and expert evaluations of team performance during OR-PICU handovers showed poor agreement for team performance. Our findings challenge previous results drawing upon single source assessments and inform future studies to carefully consider what approach of team performance assessments is required.* We further demonstrate that high levels of disruptions are associated with poor team performance during patient handovers and that efforts to ensure undisrupted handover practices in clinical care are necessary. Wilkinson, D. and G. Moore (2020). "The genetic crystal ball: new answers and new questions for infants with neuromuscular disorders and respiratory failure." Archives of Disease in Childhood 105(4): 313-314.Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK dominic.wilkinson@philosophy.ox.ac.uk. Newborn Care Unit, John Radcliffe Hospital, Oxford, UK. Murdoch Children's Research Institute, Melbourne, Victoria, Australia. Division of Neonatology, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada. Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada. Division of Newborn Care, The Ottawa Hospital, Ottawa, Ontario, Australia. Williams, L., J. I'Anson, M. Malarkey, A. Purcell, N. de Vries and C. McKinlay (2020). "Information sharing in neonatal intensive care: Parental perceptions and preferences." Journal of Paediatrics and Child Health.Kidz First Neonatal Care, Counties Manukau Health, Auckland, New Zealand. Liggins Institute, University of Auckland, Auckland, New Zealand. Paediatrics, MidCentral District Health Board, Palmerston North, New Zealand. AIM: Information sharing is a key component of family-centred care, which has traditionally occurred through patient information leaflets. Although patients' access to health information is rapidly changing with internet and mobile technologies, there are few data on parents' perception and preferences for information sharing. Our aim was to evaluate parents' perception of information sharing in neonatal care, to determine parents' preferred medium for health information and to identify priority content for inclusion in a smartphone application. METHODS: Parents at Kidz First Neonatal Care (KFNC) were eligible to take part in our survey, which comprised five sections: (i) demographics, (ii) information in neonatal care, (iii) printed information in neonatal care, (iv) parental views about development of a neonatal smartphone application and (v) general feedback. Parental satisfaction with information sharing in KFNC was assessed with a modified version of the Empowerment of Parents in the Intensive Care-neonatology questionnaire. Descriptive and summary statistics were calculated, and free text data were analysed by content analysis. RESULTS: Forty-one surveys were received, with 62% completed by mothers. Parents were supportive of electronic information, with 88% highly scoring the question 'I would download and use a free neonatal care app'. However, parental views on the need to continue printed material if a neonatal care smartphone application was provided were mixed. Of those parents who provided free-text recommendations, priority content included information about neonatal conditions, preparing for discharge and available supports. CONCLUSION: Parents had positive perceptions of information sharing in neonatal care and were strongly supportive of the introduction of a neonatal phone application. Wilson, B. A. (2020). "Similarities and differences between bereaved parents and parents of a person with a very severe brain injury: what can we do to help?" Neuropsychological Rehabilitation 30(2): 163-165 Wooldridge, A. R., P. Carayon, P. Hoonakker, B. Z. Hose, B. Eithun, T. Brazelton, 3rd, J. Ross, J. E. Kohler, M. M. Kelly, S. M. Dean, D. Rusy and A. P. Gurses (2020). "Work system barriers and facilitators in inpatient care transitions of pediatric trauma patients." Applied Ergonomics 85: 103059.Department of Industrial and Enterprise Systems Engineering, University of Illinois at Urbana-Champaign, Urbana, IL, USA. Electronic address: arwool@illinois.edu. Department of Industrial and Systems Engineering, University of Wisconsin-Madison, Madison, WI, USA; Wisconsin Institute for Healthcare Systems Engineering, University of Wisconsin-Madison, Madison, WI, USA. Wisconsin Institute for Healthcare Systems Engineering, University of Wisconsin-Madison, Madison, WI, USA. American Family Children's Hospital, University of Wisconsin School of Medicine and Public Health, School of Nursing, University of Wisconsin-Madison, Madison, WI, USA. Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA. Department of Emergency Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA. Department of Surgery, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA. Wisconsin Institute for Healthcare Systems Engineering, University of Wisconsin-Madison, Madison, WI, USA; Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA. Department of Anesthesiology, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA. Center for Health Care Human Factors, Armstrong Institute for Patient Safety and Quality, Johns Hopkins University, Baltimore, MD, USA; Division of Health Sciences Informatics, School of Medicine, Johns Hopkins University, Baltimore, MD, USA; Bloomberg School of Public Health and Whiting School of Engineering, Johns Hopkins University, Baltimore, MD, USA. Hospital-based care of pediatric trauma patients includes transitions between units that are critical for quality of care and patient safety. Using a macroergonomics approach, we identify work system barriers and facilitators in care transitions. We interviewed eighteen healthcare professionals involved in transitions from emergency department (ED) to operating room (OR), OR to pediatric intensive care unit (PICU) and ED to PICU. We applied the Systems Engineering Initiative for Patient Safety (SEIPS) process modeling method and identified nine dimensions of barriers and facilitators - anticipation, ED decision making, interacting with family, physical environment, role ambiguity, staffing/resources, team cognition, technology and characteristic of trauma care. For example, handoffs involving all healthcare professionals in the OR to PICU transition created a shared understanding of the patient, but sometimes included distractions. Understanding barriers and facilitators can guide future improvements, e.g., designing a team display to support team cognition of healthcare professionals in the care transitions. Wright-Sexton, L. A., C. E. Compretta, C. Blackshear and C. M. Henderson (2020). "Isolation in Parents and Providers of Children With Chronic Critical Illness." Pediatric Critical Care Medicine.Division of Pediatric Critical Care, University of Mississippi Medical Center, Jackson, MS. Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson, MS. Department of Data Science, University of Mississippi Medical Center, Jackson, MS. OBJECTIVES: An increasing number of children with medical complexity spend months or more in PICUs, lending to isolation for their parents and providers. We sought to better describe the experiences of parents and providers of children with chronic critical illness specifically around isolation during PICU admission. DESIGN: In-person interviews and surveys of pediatric critical care providers and parents of children with chronic critical illness. Interview transcripts were analyzed for themes. SETTING: Academic institution; PICU. SUBJECTS: Seven PICU physicians, eight nurse practitioners, and 12 parents of children with chronic critical illness. INTERVENTIONS: Surveys and semi-structured interviews. MEASUREMENTS AND MAIN RESULTS: PICU providers acknowledge feeling medically isolated from children with chronic critical illness, fueled by a lack of chronic critical illness training and burnout. Providers also perceive medical isolation in parents of children with chronic critical illness manifesting as a declining level of parental engagement. Parents did not feel medically isolated in our study. Providers also perceive social isolation in families of children with chronic critical illness, identifying the child's protracted disease and lack of tangible support systems as contributing factors. Parents self-reported adequate social supports but scored high on depression scales suggesting a disconnect between perceived and actual support. Both parents and providers acknowledge that the child's chronic critical illness could be a source of support. CONCLUSIONS: PICU providers perceived social and medical isolation in parents of children with chronic critical illness; however, parents did not endorse either directly. A majority of parents showed signs of depression despite reporting good social support. Providers reported feeling medically isolated from children with chronic critical illness and their families related to burnout and insufficient training. Novel methods to address these issues are needed. Yakobson, D., S. Arnon, C. Gold, C. Elefant, I. Litmanovitz and B. Daniels Beck (2020). "Music Therapy for Preterm Infants and Their Parents: A Cluster-Randomized Controlled Trial Protocol." Journal of Music Therapy.Department of Communication and Psychology, Aalborg University, Aalborg, Denmark. Neonatal Department, Meir Medical Center, Kfar-Saba, IsraelTel-Aviv University, Tel-Aviv, Israel. GAMUT, Uni Research Health, Uni Research, Bergen, Norway. School for Creative Arts Therapies, University of Haifa, Haifa, Israel. Music therapy (MT) interventions and skin-to-skin care (SSC) both aim to address the varied needs of preterm infants, including sensory regulation and stress reduction, inclusion of parents in their infant's care, support of parents' emotional state, and enhancing the parent-infant attachment process. Few studies have investigated the combination of both modalities through randomized controlled trials. Evidence of longer-term effects is missing. This article presents a study protocol that will investigate the effects of combined family-centered MT intervention and SSC on preterm-infants' autonomic nervous system (ANS) stability, parental anxiety levels, and parent-infant attachment quality. 12 clusters with a total of 72 preterm infants, with their parents, will be randomized to one of two conditions: MT combined with SSC or SSC alone. Each parent-infant dyad will participate in 3 sessions (2 in the hospital and a 3- month follow-up). The primary outcome of preterm infants' ANS stability will be measured by the high frequency power of their heart rate variability. Secondary outcomes will be physiological measures and behavioral states in infants and anxiety and attachment levels of parents. This trial will provide important, evidence-based knowledge on the use of the "First Sounds: Rhythm, Breath, and Lullaby" model of MT in neonatal care, through an intervention that is in line with the Newborn Individualized Developmental Care and Assessment Program model for supportive developmental care of preterm infants and their parents. Ethical approval (no. 0283-15) was granted from the local Institutional Review Board in April 2017. This trial is registered in ClinicalTrials.gov, NCT03023267. Zhang, H., Z. Shang, L. Wu, Z. Sun, F. Zhang, L. Sun, Y. Zhou, Y. Wang and W. Liu (2020). "Prolonged grief disorder in Chinese Shidu parents who have lost their only child." Eur J Psychotraumatol 11(1): 1726071.Shanghai Yangpu Mental Health Center, Shanghai University of Medicine & Health Sciences Teaching Hospital, Shanghai, China. The Emotion & Cognition Lab, Faculty of Psychology and Mental Health, Naval Medical University, Shanghai, China. Background: China has the largest population of '"loss-of-only-child' parents, that are also known as Shidu parents in Chinese society; however, little is known about their unresolved grief. Objective: This is the first study to examine the grief symptoms, prevalence, comorbidity and potential predictors of prolonged grief disorder (PGD) in such parents, taking into consideration that the new PGD diagnostic criteria ICD-11 will soon be implemented in China. Methods: 149 Shidu parents completed assessments of PGD (PG-13), PTSD (PCL-C), depression (CES-D) and general psychiatric morbidity (GHQ-12) via in-person interviews. Results: Of the 149 Shidu parents, 22.2% met the PGD criteria, with a mean of 7.59 years post-loss, and 62.4% experienced daily longing or yearning. Regression analysis indicated that fewer years since loss, subjective perception of poor economic situation, female gender and more hospital visits were prominent risk factors for the development of PGD. Older age of the parents at the time of child loss was also associated with PGD. Parents with PGD had higher comorbidity of PTSD or depression compared with those without PGD. Conclusions: There is a high prevalence of PGD and a high rate of comorbidity between PGD and PTSD or depression in Shidu parents in China, which highlights the need of timely developing effective assessments and interventions to prevent PGD in this population, particularly in female, recently bereaved, low-income and aged parents who lost their only child. Zinns, L. E., P. C. Mullan, K. J. O'Connell, L. M. Ryan and A. T. Wratney (2020). "An Evaluation of a New Debriefing Framework: REFLECT." Pediatric Emergency Care 36(3): 147-152.From the Department of Emergency Medicine, The Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, New York, NY. Division of Emergency Medicine, Children's Hospital of the King's Daughters, Norfolk, VA. Division of Emergency Medicine, Children's National Medical Center, Washington, DC. Division of Pediatric Emergency Medicine, Johns Hopkins University School of Medicine, Baltimore, MD. Division of Critical Care Medicine, Children's National Medical Center, Washington, DC. BACKGROUND: Postresuscitation debriefing (PRD) is recommended by the American Heart Association guidelines but is infrequently performed. Prior studies have identified barriers for pediatric emergency medicine (PEM) fellows including lack of a standardized curriculum. OBJECTIVE: Our objective was to create and assess the feasibility of a time-limited, structured PRD framework entitled REFLECT: Review the event, Encourage team participation, Focused feedback, Listen to each other, Emphasize key points, Communicate clearly, and Transform the future. METHODS: Each PEM fellow (n = 9) at a single center was a team leader of a pre-intervention and post-intervention videotaped, simulated resuscitation followed by a facilitated team PRD. Our intervention was a 2-hour interactive, educational workshop on debriefing and the use of the REFLECT debriefing aid. Videos of the pre-intervention and post-intervention debriefings were blindly analyzed by video reviewers to assess for the presence of debriefing characteristics contained in the REFLECT debriefing aid. PEM fellow and team member assessments of the debriefings were completed after each pre-intervention and post-intervention simulation, and written evaluations by PEM fellows and team members were analyzed. RESULTS: All 9 PEM fellows completed the study. There was an improvement in the pre-intervention and post-intervention assessment of the REFLECT debriefing characteristics as determined by fellow perception (63% to 83%, P < 0.01) and team member perception (63% to 82%, P < 0.001). All debriefings lasted less than 5 minutes. There was no statistical difference between pre-intervention and post-intervention debriefing time (P = 1.00). CONCLUSIONS: REFLECT is a feasible debriefing aid designed to incorporate evidence-based characteristics into a PRD.