May Monthly Scoping Review

Bereavement support

Falke, M. and L. B. Rubarth (2020). "Implementation of a Perinatal Hospice Program." Adv Neonatal Care.Neonatology, Nebraska Medicine, Omaha (Dr Falke); School of Nursing, Creighton University, Omaha, Nebraska (Drs Falke and Rubarth); and NNP Coordinator, Creighton University, College of Nursing, Omaha, Nebraska (Dr Rubarth).

              BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Kenny, M., S. Darcy-Bewick, A. Martin, J. Eustace-Cook, C. Hilliard, F. Clinton, L. Storey, I. Coyne, K. Murray, K. Duffy, G. Fortune, O. Smith, A. Higgins and G. Hynes (2020). "You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer." J Psychosoc Oncol: 1-21.School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.

Research Support, Library, Trinity College Dublin, Dublin, Ireland.

Nursing Practice Development Unit, Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.

Nursing, Haematology Oncology - National Paediatric Centre, Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.

Socail Work, Haematology Oncology - National Paediatric Centre, Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.

Psychology Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.

Medical Haematology Oncology - National Paediatric Centre Children's Health Ireland (CHI) at Crumlin, Dublin, Ireland.

              Problem Identification: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs.Literature Search: The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria.Data Evaluation/Synthesis: Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category "Needs." This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying childRest in peace: Parent needs during the child's deathFeeling abandoned: Parent needs for contact after the child's deathSearching for Meaning: Parents needs when making sense of lossConclusion: Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).

Lappeman, M. and L. Swartz (2020). "‘i don't want to see that the people are suffering’: Nurses in an impoverished community talk about caring for women following stillbirths." British Journal of Psychotherapy

              This article explores the way in which nurses working in a high‐risk and dangerous environment understand and speak about their work caring for mothers following stillbirths. As far as we are aware, it is the first study of its kind from a low‐ or middle‐income country, and the first on this topic to apply the theoretical insights of Menzies Lyth in such contexts. In order to obtain rich exploratory data, a qualitative research methodology was used. The primary data source was interviews with nurses about their practices with women who have stillbirths. Reflecting on the findings from these interviews, we believe that the nurses’ disclosures followed an overarching narrative that connected their cultural identity and personal suffering to the care that they administer. These connections between identity and profession perpetuate a healthcare system where the nurse often gives, not only out of duty and selflessness, but also out of her own sense of vulnerability. As hospitals in low‐income countries seek to improve their capacity to heal and support those in need of medical attention, nurses should be a focus of research. While their role is generally seen as a support to the doctors, in the case of stillbirths, they are far more central and often ill‐equipped for their role as grieving partner. Nurses need to be acknowledged and adequately supported. (PsycInfo Database Record (c) 2020 APA, all rights reserved)

Lin, C. H., Y. C. Liu and H. H. Chiang (2020). "From self-compassion to compassionate action: reflecting on ending life of stillbirth care in nursing." Scand J Caring Sci.Kang Ning University of Nursing, School of Nursing, Yang-Ming University, Taipei, Taiwan, R.O.C.

School of Nursing, National Defense Medical Center, Taipei, Taiwan, R.O.C.

School of Nursing, Institute of Clinical Nursing, National Yang-Ming University, Taipei, Taiwan, R.O.C.

              Nurses' distress in response to the professional experience of the neonatal loss and stillbirth care is poorly addressed in nursing practice; therefore, the purpose of this study is to explore nurses' experiences of labour of a stillborn baby. A qualitative approach with ten Registered Nurses from hospital birth units in northern Taiwan was used to investigate the stillbirth care experiences of nurses. Research data analysed by interpretative phenomenological analysis (IPA) were collected from eight digital recorded sessions of group dialogues, nurses' responses and feedbacks. Three main themes extracted from data include unfolding the suffering, engrossing in stillborn parents and demonstrating compassionate actions for the stillborn baby. Unfolding the suffering includes shame, guilt and disenfranchised grief. Engrossing in stillborn parents includes perceiving the mother's suppress sadness and empathising with the father's anger. Finally, demonstrating compassionate actions includes fulfilling the parents' needs to say goodbye to their stillborn baby and saying a personal goodbye to the dead baby. The finding of this study shows that the reflective group provided the space for nurses to unfold their suffering, share their emotion, and develop practical wisdom in caring for stillborn baby and the parents. The experience of nurse group conducting the reflecting dialogues could be a expository strategy to promote the nurse to provide the compassionate care actions.

Raharjo, C. V., K. Hetherington, L. Donovan, J. E. Fardell, V. Russell, R. J. Cohn, N. L. Morgan, J. Siddiqui and C. E. Wakefield (2020). "An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer." J Pain Symptom Manage 59(6): 1278-1286.School of Women's and Children's Health, UNSW Sydney, Kensington, New South Wales, Australia; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.

School of Women's and Children's Health, UNSW Sydney, Kensington, New South Wales, Australia; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia. Electronic address: k.hetherington@unsw.edu.au.

School of Women's and Children's Health, UNSW Sydney, Kensington, New South Wales, Australia; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia; Paediatric Palliative Care Service, Lady Cilento Children's Hospital, Brisbane, Queensland, Australia.

Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.

School of Women's and Children's Health, UNSW Sydney, Kensington, New South Wales, Australia; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.

Redkite, Brisbane, Queensland, Australia.

              CONTEXT: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge. OBJECTIVES: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side. DESIGN: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data. SETTING/PARTICIPANTS: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side. RESULTS: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.

Schaefer, M. R., S. T. Wagoner, M. E. Young, A. Madan-Swain, M. Barnett and W. N. Gray (2020). "Healing the hearts of bereaved parents: Impact of legacy artwork on grief in pediatric oncology." J Pain Symptom Manage.Auburn University, Department of Psychology; Auburn, AL. Electronic address: mrs0053@auburn.edu.

Auburn University, Department of Psychology; Auburn, AL.

University of Alabama at Birmingham, Division of Pediatric Hematology and Oncology; Birmingham, AL.

University of Alabama at Birmingham, Center for Palliative and Supportive Care; Birmingham, AL.

Children's Hospital of Orange County, Department of Pediatric Psychology; Orange, CA.

              CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child prior to his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semi-structured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork: 1) allows for family bonding and opens communication regarding the child's impending death; 2) provides opportunities for parents to engage in life-review and meaning-making; 3) is often displayed in the parents' home following the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; 4) can ameliorate parents' grief following their child's death; and 5) may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSIONS: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents prior to and following their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.

Sedig, L. K., J. L. Spruit, T. K. Paul, M. K. Cousino, H. McCaffery, K. Pituch and R. Hutchinson (2020). "Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents." Am J Hosp Palliat Care: 1049909120922973.Division of Pediatric Hematology Oncology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

Wayne State University College of Nursing, Detroit, MI, USA.

Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA.

Division of Pediatric Psychology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

Center for Human Growth and Development, University of Michigan, Ann Arbor, MI, USA.

Pediatric Palliative Care Program, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

              BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

Shakespeare, C., A. Merriel, D. Bakhbakhi, H. Blencowe, F. M. Boyle, V. Flenady, K. Gold, D. Horey, M. Lynch, T. A. Mills, M. M. Murphy, C. Storey, M. Toolan and D. Siassakos (2020). "The RESPECT Study for consensus on global bereavement care after stillbirth." Int J Gynaecol Obstet 149(2): 137-147.Department of Women and Children's Health, School of Population Health sciences, Bristol Medical School, The Chilterns, Southmead Hospital, University of Bristol, Bristol, UK.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene and Tropical Medicine, London, UK.

Stillbirth Centre for Research Excellence, Mater Research Institute, University of Queensland, Brisbane, Australia.

Department of Family Medicine, Department of Obstetrics and Gynaecology, University of Michigan, Ann Arbor, MI, USA.

Division of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.

School of Nursing and Midwifery, University College Cork, Cork, Ireland.

International Stillbirth Alliance, Bristol, UK.

University College London, London, UK.

              OBJECTIVE: To develop global consensus on a set of evidence-based core principles for bereavement care after stillbirth. METHODS: A modified policy-Delphi methodology was used to consult international stakeholders and healthcare workers with experience in stillbirth between September 2017 and October 2018. Five sequential rounds involved two expert stakeholder meetings and three internet-based surveys, including a global internet-based survey targeted at healthcare workers in a wide range of settings. RESULTS: Initially, 23 expert stakeholders considered 43 evidence-based themes derived from systematic reviews, identifying 10 core principles. The global survey received 236 responses from participants in 26 countries, after which nine principles met a priori criteria for inclusion. The final stakeholder meeting and internet-based survey of all participants confirmed consensus on eight core principles. Highest quality bereavement care should be enabled through training of healthcare staff to reduce stigma and establish respectful care, including acknowledgement and support for grief responses, and provision for physical and psychologic needs. Women and families should be supported to make informed choices, including those concerning their future reproductive health. CONCLUSION: Consensus was established for eight principles for stillbirth bereavement care. Further work should explore implementation and involve the voices of women and families globally.

Steffen, E. M., L. Timotijevic and A. Coyle (2020). "A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support." Eur J Cardiovasc Nurs: 1474515120922347.Department of Psychology, University of Roehampton, London, UK.

School of Psychology, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.

Department of Psychology, Kingston University London, UK.

              BACKGROUND: Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members' psychosocial support needs are often unmet. PURPOSE: This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs. METHODS: The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members (N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis. RESULTS: Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning. CONCLUSIONS: YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.

Testoni, I., E. Tronca, G. Biancalani, L. Ronconi and G. Calapai (2020). "Beyond the Wall: Death Education at Middle School as Suicide Prevention." Int J Environ Res Public Health 17(7).[Testoni, Ines; Tronca, Elisa; Biancalani, Gianmarco; Ronconi, Lucia] Univ Padua, Dept Philosophy Sociol Educ & Appl Psychol FISPPA, Via Venezia 14, Padua 35131, Italy. [Calapai, Giovanna] Alma Thi Assoc, Thiene 36016, Italy.

Testoni, I (reprint author), Univ Padua, Dept Philosophy Sociol Educ & Appl Psychol FISPPA, Via Venezia 14, Padua 35131, Italy.

ines.testoni@unipd.it; tronca.elisa@gmail.com; gianmarco.biancalani@unipd.it; l.ronconi@unipd.it; giovanna.calapai@gmail.com

              This study investigates the psychological effects of participation in Death Education (DeEd) by middle school children in two towns in northeast Italy in which suicides occur to a greater extent than in the rest of the region. The aims of the project "Beyond the Wall" were inherent to the prevention of suicide, address existential issues and enhance the meaning of life through positive intentions for the future and reflection on mortality. It involved eight classes (150 students in four classes in the experimental group; 81 in four classes in the control group) engaging with films, workgroup activities, photovoice and psychodrama. The constructs of resilience, emotional competency and psychological well-being were monitored with the Resilience Scale for Adolescents, the Hopelessness Scale for Children, the Alexithymia Questionnaire for Children and the Stirling Children's Well-being Scale. The DeEd intervention was found to be significantly related to some of the variables investigated, improving the students' ability to recognise emotions and communicate them verbally while maintaining stable initial characteristics, such as psychological well-being and positive expectations for the future.

Thornton, R., P. Nicholson and L. Harms (2020). "Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia." J Pediatr Nurs 53: 29-35.Department of Social Work, Alan Gilbert Building, The University of Melbourne, 3010, Victoria, Australia; Deakin University, Building W, 221 Burwood Hwy, Burwood, 3125, Victoria, Australia. Electronic address: r.thornton@deakin.edu.au.

School of Nursing and Midwifery, Centre of Quality and Safe Patient Research, Deakin University, Geelong, Victoria, Australia.

Department of Social Work, Alan Gilbert Building, The University of Melbourne, 3010, Victoria, Australia.

              PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss. DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept. RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit. CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement. PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.

Xiu, D., L. He, C. Killikelly and A. Maercker (2020). "Prolonged Grief Disorder and Positive Affect Improved by Chinese Brush Painting Group in Bereaved Parents: A Pilot Study." J Soc Work End Life Palliat Care: 1-17.Division of Psychopathology and Clinical Intervention, Department of Psychology, University of Zurich, Zurich, Switzerland.

Department of Social Work & Social Administration, The University of Hong Kong, Pok Fu Lam, Hong Kong.

Teachers' college of Beijing, Union University, Beijing, China.

              Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.

Zuniga-Villanueva, G., K. Widger, C. Medeiros, M. Trenholm and J. C. Streuli (2020). "Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review." Am J Perinatol.Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.

Pediatric Advanced Care Team, The Hospital for Sick Children, Toronto, Ontario, Canada.

Department of Pediatrics, University Children's Hospital Zurich, Zurich, Switzerland.

OBJECTIVE:  The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. STUDY DESIGN:  MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. RESULTS:  From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. CONCLUSION:  Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.

Other

Agra-Tuñas, C., E. Rodriguez-Ruiz and E. Rodríguez Merino (2020). "How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain." Pediatr Crit Care Med.Paediatric Critical, Intermediate and Palliative Care Division, University Clinical Hospital of Santiago de Compostela, Santiago de Compostela, Spain.

Intensive Care Medicine Department, University Clinical Hospital of Santiago de Compostela, Santiago de Compostela, Spain.

Paediatric Intensive Care Unit, University Hospital of Cruces, Bilbao, Spain.

              OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediátrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSIONS: Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.

Aktas, M., G. Randhawa and J. Brierley (2020). "Children, organ donation, and Islam: A report of an engagement day of Islamic scholars, young Muslims and pediatric transplant and donation professionals." Pediatr Transplant 24(3): e13677.University of Newcastle Medical School, Newcastle, UK.

Institute for Health Research, University of Bedfordshire, Luton, UK.

PICU & Bioethics; Great Ormond St Hospital for Sick Children, National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre, London, UK.

Baumann, I., J. Künzel, L. Goldbeck, D. Tutus and M. Niemitz (2020). "Prolonged Grief, Posttraumatic Stress, and Depression Among Bereaved Parents: Prevalence and Response to an Intervention Program." Omega (Westport): 30222820918674.Department of Child and Adolescent Psychiatry/Psychotherapy, Ulm University.

Psychosocial department, Family-Oriented Rehabilitation Clinic Tannheim, Tannheim, Germany.

Beck, C. T. and T. Vo (2020). "Fathers' stress related to their infants' NICU hospitalization: A mixed research synthesis." Archives of Psychiatric Nursing 34(2): 75-84.Beck, Cheryl Tatano, School of Nursing, University of Connecticut, 231 Glenbrook Road, Storrs, CT, US, 06269-4026

              Prematurity is the most common reason for a Neonatal Intensive Care Unit (NICU) admission. In 2014 the estimated international preterm birth rate was 10.6%. Regionally the estimated preterm birth prevalence for 2014 ranged from 8.7% in Europe to 13.4% in North Africa. In 2017 the United States (U.S.) preterm birth rate increased to 9.93% which indicated a 1% rise from 2016 and the third year in a row of an increase from 9.57% in 2014. In a mixed methods research synthesis of mothers' stress while their preterm infants were in the NICU, Beck and Woynar reported that mothers' experiences included five themes: stark contrast to images of joyous motherhood, cultural overlay, issues of ownership and control, support, and learning to be a NICU mother. Nine of the 12 studies included in Beck and Woynar's synthesis that tested interventions to decrease mothers' stress related to their NICU experiences found significant results. The international prevalence rate of elevated stress symptoms in mothers ranged from 18% in the United States (U.S.) to 81% in Turkey. To date there has not been published a mixed methods research review focusing on fathers' experiences while their infants were hospitalized in the NICU. Therefore, the purpose of this study was to conduct a mixed research synthesis of studies of fathers' NICU experiences published since 2015 to guide nurses' clinical practice to ensure fathers' mental health across the globe. (PsycInfo Database Record (c) 2020 APA, all rights reserved)

Black, B. P. (2020). "Stillbirth at Term: Grief Theories for Care of Bereaved Women and Families in Intrapartum Settings." J Midwifery Womens Health.University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

              Death in intrapartum settings poses a paradox for providers, whose expertise may be limited in assisting bereaved women and families facing the trauma of stillbirth. Many providers are familiar with Kübler-Ross' stage theory of grief; however, more recent theories augment her early work in care of bereaved persons. Through an evolving case study of a couple for whom pregnancy ends in stillbirth at term, 4 theories of grief-loss of the assumptive world, the dual process model, continuing bonds, and complicated grief-are presented to assist intrapartum care providers toward more comprehensive understanding of the complexities of grief responses not fully explained by simple stage theory. These 4 theories are not prescriptive, nor are they comprehensive; however, they are highly relevant and foundational for current understanding of responses and needs of bereaved women and families for whom pregnancy ends in death.

Bright, K. S., C. Mannion, D. White and S. R. Bouchal (2020). "Transitioning Into the Role of Mother Following the Birth of a Very Low-Birth-Weight Infant A Grounded Theory Pilot Study." Journal of Perinatal & Neonatal Nursing 34(2): 125-133.[Bright, Katherine Stuart; Mannion, Cynthia; Raffin Bouchal, Shelley] Univ Calgary, Fac Nursing, 2500 Univ Dr NW, Calgary, AB T2N 1N4, Canada. [White, Deborah] Univ Calgary Qatar, Fac Nursing, Doha, Qatar.

Bright, KS (reprint author), Univ Calgary, Fac Nursing, 2500 Univ Dr NW, Calgary, AB T2N 1N4, Canada. ksbright@ucalgary.ca

              This qualitative grounded theory pilot study investigated the concerns and coping mechanisms of mothers of very low-birth-weight (VLBW; <1500 g) infants following discharge from the neonatal intensive care unit in Alberta, Canada. In-depth, semistructured, face-to-face, audio-recorded interviews were conducted with women of VLBW infants. Interviews lasting 75 to 90 minutes were transcribed verbatim and coded using grounded theory methodology. Data saturation and theoretical redundancy were achieved in interviews with 6 mothers of VLBW infants. The core variable of "reconstructing normal" emerged from the interview data. Women indicated that mothering a VLBW infant is an unfolding experience that is continuously being revised, creating a new sense of normal. The construct consists of 4 categories; mother-infant relationship, maternal development, maternal caregiving and role-reclaiming strategies, and infant developmental milestones. Findings from this study suggest that women found the transition into motherhood following the birth of a VLBW infant as a multidimensional and dynamic process. Further research is warranted to confirm these results and to further explore mothering issues with VLBW infants.

Buhagiar, T. M., M. H. Schoenlein and D. S. Smith (2020). "Ethical Decision Making in Critical Care: Communication, Coordination of Care, and the Practice of the Clinical Nurse Specialist." Clin Nurse Spec 34(3): 93-95.Author Affiliations: Inpatient Palliative Care (Ms Buhagiar), Kaiser Permanente Santa Rosa, California; Senior Nursing Student (Mr Schoenlein), Pacific Lutheran University, Tacoma, Washington; and Inpatient Palliative Care Team (Ms Smith), Kaiser Permanente Redwood City, California.

Chiotos, K., M. Hayes, D. W. Kimberlin, S. B. Jones, S. H. James, S. G. Pinninti, A. Yarbrough, M. J. Abzug, C. E. MacBrayne, V. L. Soma, D. E. Dulek, S. B. Vora, A. Waghmare, J. Wolf, R. Olivero, S. Grapentine, R. L. Wattier, L. Bio, S. J. Cross, N. O. Dillman, K. J. Downes, K. Timberlake, J. Young, R. C. Orscheln, P. D. Tamma, H. T. Schwenk, P. Zachariah, M. Aldrich, D. L. Goldman, H. E. Groves, G. S. Lamb, A. C. Tribble, A. L. Hersh, E. A. Thorell, M. R. Denison, A. J. Ratner, J. G. Newland and M. M. Nakamura (2020). "Multicenter initial guidance on use of antivirals for children with COVID-19/SARS-CoV-2." J Pediatric Infect Dis Soc.Department of Anesthesia and Critical Care Medicine, Division of Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, United States.

Department of Pediatrics, Division of Infectious Diseases, Children's Hospital of Philadelphia, Philadelphia, United States.

Antimicrobial Stewardship Program, Children's Hospital of Philadelphia, Philadelphia, United States.

Department of Pediatrics, Division of Pediatric Infectious Diseases, University of Alabama at Birmingham, Birmingham, United States.

Department of Pharmacy, Boston Children's Hospital, Boston, United States.

Antimicrobial Stewardship Program, Boston Children's Hospital, Boston, United States.

Department of Pharmacy, Children's of Alabama, Birmingham, United States.

Department of Pediatrics, Division of Infectious Diseases, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, United States.

Department of Pharmacy, Children's Hospital Colorado, Aurora, United States.

Department of Pediatrics, Division of Infectious Diseases, New York University Grossman School of Medicine and Hassenfeld Children's Hospital, New York, United States.

Department of Pediatrics, Division of Infectious Diseases, Vanderbilt University and Monroe Carell Jr. Children's Hospital, Nashville, United States.

Department of Pediatrics, Division of Pediatric Infectious Diseases, University of Washington, Seattle Children's Hospital, Seattle, United States.

Vaccine and Infectious Diseases Division, Fred Hutchinson Cancer Research Center, Seattle, United States.

Department of Infectious Diseases, St. Jude Children's Research Hospital, Memphis, United States.

Department of Pediatrics and Human Development, Section of Infectious Diseases, Helen DeVos Children's Hospital of Spectrum Health, Michigan State College of Human Medicine, Grand Rapids, United States.

Department of Pharmacy, UCSF Benioff Children's Hospital, San Francisco, United States.

Department of Pediatrics, Division of Infectious Diseases and Global Health, University of California, San Francisco, San Francisco, United States.

Department of Pharmacy, Lucile Packard Children's Hospital Stanford, Stanford, United States.

Department of Pharmaceutical Sciences, St. Jude Children's Research Hospital, Memphis, United States.

Department of Pharmacy, CS Mott Children's Hospital, Ann Arbor, United States.

Department of Pharmacy, The Hospital for Sick Children, Toronto, Canada.

Department of Pharmacy, St. Louis Children's Hospital, St. Louis, United States.

Department of Pediatrics, Division of Infectious Diseases, Washington University and St. Louis Children's Hospital, St. Louis, United States.

Department of Pediatrics, Division of Infectious Diseases, Johns Hopkins University School of Medicine, Baltimore, United States.

Department of Pediatrics, Division of Infectious Diseases, Stanford University School of Medicine and Lucile Packard Children's Hospital Stanford, Stanford, United States.

Department of Pediatrics, Division of Infectious Diseases, Columbia University, New York, United States.

Department of Pediatrics, Division of Infectious Diseases, Children's Hospital at Montefiore, New York, United States.

Department of Pediatrics, Division of Infectious Diseases, Hospital for Sick Children, Toronto, Canada.

Department of Pediatrics, Division of Infectious Diseases, Boston Children's Hospital, Boston, United States.

Department of Pediatrics, Division of Infectious Diseases, University of Michigan and CS Mott Children's Hospital, Ann Arbor, United States.

Department of Pediatrics, Division of Infectious Diseases, University of Utah and Primary Children's Hospital, Salt Lake City, United States.

Department of Microbiology, New York University Grossman School of Medicine, New York, United States.

              BACKGROUND: Although Coronavirus Disease 2019 (COVID-19) is mild in nearly all children, a small proportion of pediatric patients develops severe or critical illness. Guidance is therefore needed regarding use of agents with potential activity against severe acute respiratory syndrome coronavirus 2 in pediatrics. METHODS: A panel of pediatric infectious diseases physicians and pharmacists from 18 geographically diverse North American institutions was convened. Through a series of teleconferences and web-based surveys, a set of guidance statements was developed and refined based on review of best available evidence and expert opinion. RESULTS: Given the typically mild course of pediatric COVID-19, supportive care alone is suggested for the overwhelming majority of cases. The panel suggests a decision-making framework for antiviral therapy that weighs risks and benefits based on disease severity as indicated by respiratory support needs, with consideration on a case-by-case basis of potential pediatric risk factors for disease progression. If an antiviral is used, the panel suggests remdesivir as the preferred agent. Hydroxychloroquine could be considered for patients who are not candidates for remdesivir or when remdesivir is not available. Antivirals should preferably be used as part of a clinical trial if available. CONCLUSIONS: Antiviral therapy for COVID-19 is not necessary for the great majority of pediatric patients. For those rare children who develop severe or critical disease, this guidance offer an approach for decision-making regarding antivirals, informed by available data. As evidence continues to evolve rapidly, the need for updates to the guidance is anticipated.

Cifra, C. L., C. R. Tigges, S. L. Miller, L. A. Herwaldt and H. Singh (2020). "Updates to referring clinicians regarding critically ill children admitted to the pediatric intensive care unit: a state-wide survey." Diagnosis (Berl) 7(2): 123-128.Division of Pediatric Critical Care, Department of Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA,USA.

Department of Emergency Medicine, University of Iowa Carver College of Medicine, Iowa City, IA, USA.

Department of Internal Medicine, University of Iowa Carver College of Medicine, Iowa City, IA, USA.

Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA, USA.

Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center and Baylor College of Medicine, Houston, TX, USA.

              Background Front-line clinicians are expected to make accurate and timely diagnostic decisions before transferring patients to the pediatric intensive care unit (PICU) but may not always learn their patients' outcomes. We evaluated the characteristics of post-transfer updates received by referring clinicians regarding PICU patients and determined preferences regarding content, delivery, and timing of such updates. Methods We administered an electronic cross-sectional survey to Iowa clinicians who billed for ≥5 pediatric patients or referred ≥1 patient to the University of Iowa (UI) PICU in the year before survey administration. Results One hundred and one clinicians (51 non-UI, 50 UI-affiliated) responded. Clinicians estimated that, on average, 8% of pediatric patients they saw over 1 year required PICU admission; clinicians received updates on 40% of patients. Seventy percent of UI clinicians obtained updates via self-initiated electronic record review, while 37% of non-UI clinicians relied on PICU communication (p = 0.013). Clinicians indicated that updates regarding diagnoses/outcomes will be most relevant to their practice. Among clinicians who received updates, 13% received unexpected information; 40% changed their practice as a result. Conclusions Clinicians received updates on less than half of the patients they referred to a PICU, although such updates could potentially influence clinical practice. Study findings will inform the development of a formal feedback system from the PICU to referring clinicians.

Crilly, C. J., S. Haneuse and J. S. Litt (2020). "Predicting the outcomes of preterm neonates beyond the neonatal intensive care unit: What are we missing?" Pediatr Res.Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.

Department of Biostatistics, Harvard TH Chan School of Public Health, Boston, MA, USA.

Department of Pediatrics, Harvard Medical School, Boston, MA, USA. jlitt@bidmc.harvard.edu.

Department of Social and Behavioral Sciences, Harvard TH Chan School of Public Health, Boston, MA, USA. jlitt@bidmc.harvard.edu.

Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, MA, USA. jlitt@bidmc.harvard.edu.

              Preterm infants are a population at high risk for mortality and adverse health outcomes. With recent improvements in survival to childhood, increasing attention is being paid to risk of long-term morbidity, specifically during childhood and young-adulthood. Although numerous tools for predicting the functional outcomes of preterm neonates have been developed in the past three decades, no studies have provided a comprehensive overview of these tools, along with their strengths and weaknesses. The purpose of this article is to provide an in-depth, narrative review of the current risk models available for predicting the functional outcomes of preterm neonates. A total of 32 studies describing 43 separate models were considered. We found that most studies used similar physiologic variables and standard regression techniques to develop models that primarily predict the risk of poor neurodevelopmental outcomes. With a recently expanded knowledge regarding the many factors that affect neurodevelopment and other important outcomes, as well as a better understanding of the limitations of traditional analytic methods, we argue that there is great room for improvement in creating risk prediction tools for preterm neonates. We also consider the ethical implications of utilizing these tools for clinical decision-making. IMPACT: Based on a literature review of risk prediction models for preterm neonates predicting functional outcomes, future models should aim for more consistent outcomes definitions, standardized assessment schedules and measurement tools, and consideration of risk beyond physiologic antecedents.Our review provides a comprehensive analysis and critique of risk prediction models developed for preterm neonates, specifically predicting functional outcomes instead of mortality, to reveal areas of improvement for future studies aiming to develop risk prediction tools for this population.To our knowledge, this is the first literature review and narrative analysis of risk prediction models for preterm neonates regarding their functional outcomes.

Cuervo-Suarez, M. I., A. Claros-Hulbert, R. Manzano-Nunez, M. Muñoz and X. García (2020). "Pediatric Palliative Care During End of Life: A Privilege of a Few in a Tertiary Referral Hospital From Colombia." Am J Hosp Palliat Care: 1049909120920542.Fundación Valle de Lili, Pediatric Palliative Care Program, Cali, Colombia.

Universidad Icesi, Facultad de Medicina, Cali, Colombia.

Clinical Research Center, Fundación Valle del Lili, Cali, Colombia.

              BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution. METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients. RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03). CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.

Curran, J. A., S. Breneol and J. Vine (2020). "Improving transitions in care for children with complex and medically fragile needs: a mixed methods study." BMC Pediatr 20(1): 219.School of Nursing, Dalhousie University, Halifax, Canada. jacurran@dal.ca.

Strengthening Transitions in Care Research Lab, IWK Health Centre, 8th Floor, Children's Site, 5850/5980 University Avenue, P.O. Box 9700, Halifax, NS, B3K 6R8, Canada. jacurran@dal.ca.

School of Nursing, Dalhousie University, Halifax, Canada.

Strengthening Transitions in Care Research Lab, IWK Health Centre, 8th Floor, Children's Site, 5850/5980 University Avenue, P.O. Box 9700, Halifax, NS, B3K 6R8, Canada.

              BACKGROUND: Children with medical complexity are a small yet resource intensive population in the Canadian health care system. The process for discharging these children from hospital to home is not yet optimal. The overall goal of this project was to develop recommendations to be included in a provincial strategy to support transitions in care for children with complex and medically fragile needs. METHODS: A wide assortment of stakeholders participated in this mixed method, multiphase project. During Phase 1, data was gathered from a range of sources to document families' experiences transitioning from an inpatient hospital stay back to their home communities. In Phase 2, pediatricians, nurses, and health administrators participated in key stakeholder interviews to identify barriers and facilitators to a successful transition in care for children and families with complex care needs. A multi-sector consensus meeting was held during Phase 3 to discuss study findings and refine key recommendations for inclusion in a provincial strategy. RESULTS: Six case studies were developed involving children and families discharged home with a variety of complex care needs. Children ranged in age from 15 days to 9 years old. Nine telephone interviews were conducted in Phase 2 with pediatricians, nurses, and administrators from across the province. A variety of inter-institutional communication challenges were described as a major barrier to the transition process. A consistent message across all interviews was the need for improved coordination to facilitate transitions in care. The consensus meeting to review study findings included physicians, nurses, paramedics, senior administrators, and policy analysts from different health and government sectors and resulted in six recommendations for inclusion in a provincial strategy. CONCLUSIONS: This project identified policy and practice gaps that currently exist related to transitions in care for children with complex and medically fragile needs and their families. Our collaborative patient-centred approach to understanding how children and families currently navigate transitions in care provided a foundation for developing recommendations for a provincial wide strategy.

Dagla, M., V. Petousi and A. Poulios (2020). "Bioethical Decisions in Neonatal Intensive Care: Neonatologists' Self-Reported Practices in Greek NICUs." Int J Environ Res Public Health 17(10).Department of Midwifery, University of West Attica, 122 41 Athens, Greece.

Department of Sociology, University of Crete, 741 00 Rethymno, Greece.

Department of Psychology, National and Kapodistrian University of Athens, 157 72 Athens, Greece.

              This study presents, for the first time, empirical data on practices regarding bioethical decision-making in treatment of preterm and ill newborns in Greece. The aim of the study was to: a) record self-reported practices and involvement of Greek physicians in decisions of withholding and withdrawing neonatal intensive care, and b) explore the implication of cultural, ethical, and professional parameters in decision-making. Methods: 71 physicians, employed fulltime in all public Neonatal Intensive Care Units (NICUs) (n = 17) in Greece, completed an anonymous questionnaire between May 2009 and May 2011. Results: One-third of the physicians in our sample admitted that they have, at least once in the past, decided the limitation of intensive care of a newborn close to death (37.7%) and/or a newborn with unfavorable neurological prognosis (30.8%). The higher the physicians' support towards the value of quality of human life, the more probable it was that they had taken a decision to withhold or withdraw neonatal intensive care (p <0.05). Conclusions: Our research shows that Greek NICU physicians report considerably lower levels of ethical decision-making regarding preterm and ill newborns compared to their counterparts in other European countries. Clinical practices and attitudes towards ethical decision-making appear to be influenced mainly by the Greek physicians' values.

Dahan, S., C. J. Bourque, M. Reichherzer, J. Prince, G. Mantha, M. Savaria and A. Janvier (2020). "Peer support groups for families in Neonatology: Why and how to get started?" Acta Paediatr.CHU Sainte-Justine Research Center, Montréal, QC, Canada.

Unité d'éthique clinique, CHU Sainte-Justine, Montréal, QC, Canada.

Division of Neonatology, CHU Sainte-Justine, Montréal, QC, Canada.

Unité de recherche en éthique clinique et partenariat famille (UREPAF), Montréal, QC, Canada.

Department of Pediatrics, Université de Montréal, Montréal, QC, Canada.

Bureau de l'Éthique Clinique (BEC), Université de Montréal, Montréal, QC, Canada.

Parent Representative, Montréal, QC, Canada.

Préma-Québec, Association for Preterm Infants, Longueuil, QC, Canada.

Unité de soins palliatifs, CHU Sainte-Justine, Montréal, QC, Canada.

              AIM: To describe the development of peer-to-peer support meetings between parents of children in neonatal intensive care unit (NICU) and veteran resource parents who had a previous NICU experience. METHODS: The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods. RESULTS: One hundred and fifty-three parents were participated. NICU parents (89%) wished to meet resource parents to discuss: their parental role, normalising their experience and emotions, adapting to their new reality, control, guilt, trust and coping. Practical aspects of the meetings were tested/finalised. Resource parent moderators reported that the presence of more than one moderator per meeting was essential. A checklist of topics to discuss was developed. Having a diversity of moderators (fathers, diagnoses other than prematurity, for example) was judged important. The name of the meeting had an impact on attendance: there were less participants when the word "support" was used. The best location (central, parents' kitchen) and optimal time/duration of meetings, selection of parent moderators and compensation were also determined. CONCLUSION: Peer support meetings moderated by resource parents provide a unique and useful means to support NICU parents. Future investigations will explore whether these meetings will improve clinical outcomes.

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." Pediatr Crit Care Med 21(5): 423-429.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.

Doede, M. and A. M. Trinkoff (2020). "Emotional Work of Neonatal Nurses in a Single -Family Room NICU." Jognn-Journal of Obstetric Gynecologic and Neonatal Nursing 49(3): 283-292.[Doede, Megan; Trinkoff, Alison M.] Univ Maryland, Sch Nursing, Dept Family & Community Hlth, 655 West Lombard St,Room 632, Baltimore, MD 21201 USA.

Doede, M (reprint author), Univ Maryland, Sch Nursing, Dept Family & Community Hlth, 655 West Lombard St,Room 632, Baltimore, MD 21201 USA. mdoede@umaryland.edu

              Objective: To describe the emotional work of neonatal nurses in a single-family room NICU. Design: Qualitative interpretive description. Setting: A single-family room NICU in the mid-Atlantic region of the United States. Participants: Fifteen nurses who worked in the single-family room NICU. Methods: Data were collected from 110 hours of direct observation and 11 interviews over a 6-month period. We focused on emotional demands using triangulation between interviews and observations to identify themes. Conceptualization of emotional work informed interpretation. Results: Four themesemerged: Parents Living on theUnit, Isolation of Infants inRooms, Nurses' Ability toFormBonds and Establish Trust With Parents, and Sheltering Nurses and Parents From Stressful Events on the Unit. Parents living on the unit and the isolation of infants in private rooms increased the emotional work of nurses. Forming trust and bonds with parents and sheltering parents and themselves from stressful events on the unit decreased nurses' emotional work. Conclusion: Care should be taken in NICU design because unit layout can affect the emotional work of nurses. Understanding how neonatal nursing practice is affected by unit layout can help nurses and those who design NICUs to create and promote optimal practice environments.

Domogalla, J. S., J. McCord and R. Morse (2020). "Rural Perinatal Loss: A Needs Assessment." Omega (Westport): 30222820926296.Department of Thanatology, Marian University, Fond du Lac, Wisconsin, United States.

              The purpose of this research was to ascertain the availability and depth of services of bereavement care for mothers who live rurally. The specific focus is on those who experienced early losses including pregnancy, stillbirth, neonatal, and young children who were born with fetal anomalies or neonatal disease that resulted in death. The convenience (nonprobability) sample originated from a population of mothers who lived in rural east central Minnesota. Participants were interviewed in a 60-minute interval. All data were coded confidential. Common themes, incidence of resources, or lack of bereavement resources for the participants' lived experiences were considered using a descriptive phenomenological approach. Our appreciation of the continuing bond between mother and child compels us to believe that there is an ethical obligation to reduce and remove these barriers and inequalities in bereavement support services for those who live rurally and have experienced perinatal and infant loss. Results of this study indicate the need for further study and establishment of bereavement resources in rural outreach for perinatal and early childhood loss.

Drach, L. L., D. A. Hansen, T. M. King and E. M. S. Sibinga (2020). "Communication between neonatologists and parents when prognosis is uncertain." J Perinatol.Division of Pediatric Palliative Care, Johns Hopkins All Children's Hospital, St. Petersburg FL, 501 6th Ave So, St. Petersburg, FL, 33701, USA. Ldrach1@jhmi.edu.

Department of Psychiatry, Dartmouth-Hitchcock Medical Center, Lebanon, NH, 100 Hitchcock Way, Manchester, NH, 03104, USA.

Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, 6710B Rockledge Dr. Room 2227D, MSC 7002, Bethesda, MD, 20892-7002, USA.

Division of General Pediatrics and Adolescent Medicine, Johns Hopkins School of Medicine, Suite 4200 Mason F. Lord Center Tower, 5200 Eastern Ave., Baltimore, MD, 21224, USA.

              OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover qualities which may enhance or impede parent-clinician partnership under such difficult circumstances. STUDY DESIGN: Guided by the National Cancer Institute (NCI) Patient Centered Communication framework, semi-structured individual interviews were conducted and analyzed regarding neonatologist and parent perceptions of their communication. Subjects consisted of nine dyads of neonatologists and English-speaking parents whose infant had an uncertain prognosis. RESULTS: Parents were overall satisfied with neonatologists' communications concerning their infant's uncertain trajectory. Nonetheless, both experienced challenges and distress during communication, impeding collaboration and engagement. CONCLUSIONS: Families and neonatologists value principles of patient centered communication but report challenges implementing this practice. Incorporating a multidisciplinary approach in settings of prognostic uncertainty to foster patient centered communication, may enhance communication surrounding NICU care.

Dunham, M. M. and T. Marin (2020). "NICU Maternal-Infant Bonding Virtual Visitation as a Bonding Enhancement Tool." Journal of Perinatal & Neonatal Nursing 34(2): 171-177.[Dunham, Melissa M.; Marin, Terri] Augusta Univ, Augusta, GA USA.

Dunham, MM (reprint author), 130 Stafford Green Way, Greenville, SC 29615 USA. mdunham@augusta.edu

              The admission of an infant to the neonatal intensive care unit (NICU) presents specialized barriers to the maternal-infant bonding (MIB) process. Virtual visitation (VV) provides a mother with the opportunity to have continual access to her hospitalized infant via a one-way live Web camera. While increasingly used in the NICU, VV remains a novel concept. The objective of this study was to introduce a conceptual model that incorporates the use of VV into the NICU MIB process. Adapted from the Model of Mother-Infant Bonding After Antenatal HIV Diagnosis, a newly developed model of MIB using VV as a bonding enhancement tool is offered. A Model of NICU Maternal-Infant Bonding Incorporating Virtual Visitation presents the NICU bonding process in a chronological manner, with 5 primary propositions and an explanation of their related themes. Virtual visitation is introduced into the bonding process and is shown to act as a moderated variable. A Model of NICU Maternal-Infant Bonding Incorporating Virtual Visitation introduces VV as a tool to enhance the MIB process that occurs in the NICU. The model provides the basis for the development of a research program to examine the multiple potential effects of VV in the NICU.

Dutta, O., G. Tan-Ho, P. Y. Choo, X. C. Low, P. H. Chong, C. Ng, S. Ganapathy and A. H. Y. Ho (2020). "Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore." BMC Palliat Care 19(1): 46.Psychology Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore.

HCA Hospice Care, Singapore, Singapore.

Children's Cancer Foundation, Singapore, Singapore.

Portland Institute for Loss and Transition, Portland, Oregon, USA.

Club Rainbow Singapore, Singapore, Singapore.

Psychology Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore. andyhyho@ntu.edu.sg.

Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore. andyhyho@ntu.edu.sg.

Palliative Care Centre for Excellence in Research and Education, Singapore, Singapore. andyhyho@ntu.edu.sg.

              BACKGROUND: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. METHODS: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. RESULTS: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). CONCLUSION: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Einav, M. and M. Margalit (2020). "Hope, Loneliness and Sense of Coherence among Bereaved Parents." Int J Environ Res Public Health 17(8).Behavioral Sciences Department, Peres Academic Center, Rechovot 7610202, Israel.

Behavioral Sciences Department, The Academic College of Tel-Aviv-Yaffa, Tel-Aviv 6818218, Israel.

School of Education, Tel Aviv University, Tel-Aviv 6997505, Israel.

              Coping with the loss of a child is a challenging and difficult experience that disrupts the lives of the surviving parents and the fabric of the family. Our goal is to identify the factors that help bereaved parents cope with this loss and introduce hope and future perspectives into their lives. Our sample consisted of 81 parents (30 fathers and 51 mothers), who completed questionnaires on the following topics: family climate, loneliness, sense of coherence and hope. In addition, interviews were conducted with six parents to further clarify the quantitative results. A moderated mediation model revealed that increased levels of loneliness among the parents predicted lower levels of hope. However, their emotional resources in terms of their sense of coherence mediated this relationship. In addition, the number of years since the loss moderated the negative relationship between loneliness and the parents' emotional resources. It can be concluded that the negative impact of loneliness on parents' sense of coherence declined over time. The interviews conducted extend the understanding of these results, as parents described their ability to continue with their lives and identified their goals in terms of the hope theory, alongside their ongoing pain. Finally, the therapeutic implications of the results we obtained are discussed.

Fan, J., M. Zhou, L. Wei, L. Z. Fu, X. H. Zhang and Y. Shi (2020). "A Qualitative Study on the Psychological Needs of Hospitalized Newborns' Parents During COVID-19 Outbreak in China." Iranian Journal of Pediatrics 30(2).[Fan, Juan; Zhou, Mei; Wei, Lu; Fu, Lizhen; Zhang, Xianhong; Shi, Yuan] Chongqing Med Univ, China Int Sci & Technol Cooperat Base Child Dev &, Chongqing Key Lab Pediat,Childrens Hosp, Dept Neonatol,Minist Educ,Key Lab Child Dev & Dis, Chongqing, Peoples R China.

Fu, LZ (reprint author), Chongqing Med Univ, Dept Neonatol, Childrens Hosp, 136 Zhongshan Er Rd, Chongqing 400014, Peoples R China. 1050932890@qq.com

              Background: As the 2019 novel coronavirus disease (COVID-19) emerged in China, the parents of hospitalized neonatal patients commonly endure more psychological stress compared to the general population, which probably originated from not staying with their children, inconvenience of daily life, and financial crisis. Objectives: We investigated the psychological needs of hospitalized newborns' parents during the COVID-19 outbreak in Chongqing, China. Methods: The phenomenological method was used to conduct this qualitative research. In-depth interviews were carried out on 14 parents of hospitalized newborns by the same interview based on a semi-structured interview outlines. The interviews were audiotaped, transcribed, and analyzed using Colaizzi's 7-step analysis method. Results: All the subjects' children were admitted to a neonatal ward within the first two weeks of initiating the first-level response to COVID-19 in Chongqing, China. The in-depth interviews identified five themes regarding the parents' primary psychological needs, which included urgent demand for timely up-to-date information about the children's condition, demand for psychological and emotional support, reducing the inconvenience caused by the epidemic outbreak, claim for protective information after discharge, demand for financial support. Conclusions: Based on the parents' needs, the medical staff should actively communicate with the parents, effectively provide emotional and financial support, and convenience. Such support could be helpful to relieve the parents' psychological stress.

Feng, Y. Y., S. Korale-Liyanage, A. Jarde and S. D. McDonald (2020). "Psychological or educational ehealth interventions on depression, anxiety or stress following preterm birth: A systematic review." J Reprod Infant Psychol.McDonald, Sarah D.

              Objective: To determine the efficacy and characteristics of psychological or educational eHealth interventions on reducing symptoms of mental illness in parents of preterm or low birthweight infants.Background: Many parents suffer psychological disorders after preterm birth. Computer or mobile application-based interventions are a promising alternative.Methods: We searched seven electronic databases up to January 2020 and included randomised and quasi-randomised controlled trials assessing psychological or educational eHealth interventions in parents of infants born very preterm <32 weeks or with very low birthweight <1500g (primary question), or preterm <37 weeks or with low birthweight <2500g (secondary question). Primary outcomes were measures of depression, anxiety, acute stress disorder or post-traumatic stress disorder. Secondary outcomes included other indicators of mental health, quality of life and intervention characteristics. We had planned random-effects meta-analysis in our protocol (CRD42018105731).Results: Of 9768 records, no study reported our primary outcomes. Three studies showed potential benefits for parental self-efficacy, discharge preparedness, parental satisfaction and family satisfaction with the neonatal intensive care unit.Conclusions: We found scarce evidence on the efficacy of psychological or educational eHealth interventions on reducing mental illness in parents of preterm or low birthweight infants, highlighting the need for more research. (PsycInfo Database Record (c) 2020 APA, all rights reserved)

Fernández-Sola, C., M. Camacho-Ávila, J. M. Hernández-Padilla, I. M. Fernández-Medina, F. R. Jiménez-López, E. Hernández-Sánchez, M. B. Conesa-Ferrer and J. Granero-Molina (2020). "Impact of Perinatal Death on the Social and Family Context of the Parents." Int J Environ Res Public Health 17(10).Department of Nursing, Physiotherapy and Medicine, University of Almeria, 04120 La Cañada de San Urbano, Spain.

Faculty of Health Sciences, Universidad Autónoma de Chile, Temuco 01090, Chile.

Hospital La Inmaculada, 04600 Huércal-Overa, Spain.

Hospital de Torrevieja, 03186 Torrevieja, Spain.

School of Health and Education, Middlesex University, London NW4 4BH, UK.

Faculty of Health Sciences, Universidad Católica de San Antonio de Murcia, 30107 Guadalupe de Maciascoque, Spain.

Faculty of Health Sciences, Universidad de Murcia, 30003 Murcia, Spain.

              BACKGROUND: Perinatal death (PD) is a painful experience, with physical, psychological and social consequences in families. Each year, there are 2.7 million perinatal deaths in the world and about 2000 in Spain. The aim of this study was to explore, describe and understand the impact of perinatal death on parents' social and family life. METHODS: A qualitative study based on Gadamer's hermeneutic phenomenology was used. In-depth interviews were conducted with 13 mothers and eight fathers who had suffered a perinatal death. Inductive analysis was used to find themes based on the data. RESULTS: Seven sub-themes emerged, and they were grouped into two main themes: 1) perinatal death affects family dynamics, and 2) the social environment of the parents is severely affected after perinatal death. CONCLUSIONS: PD impacts the family dynamics of the parents and their family, social and work environments. Parents perceive that society trivializes their loss and disallows or delegitimizes their grief. IMPLICATIONS: Social care, health and education providers should pay attention to all family members who have suffered a PD. The recognition of the loss within the social and family environment would help the families to cope with their grief.

Fernando, S. M., D. Qureshi, P. Tanuseputro, S. Dhanani, A. M. Guerguerian, S. D. Shemie, R. Talarico, E. Fan, L. Munshi, B. Rochwerg, D. C. Scales, D. Brodie, K. Thavorn and K. Kyeremanteng (2020). "Long-term survival and costs following extracorporeal membrane oxygenation in critically ill children-a population-based cohort study." Crit Care 24(1): 131.Division of Critical Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada. sfern014@uottawa.ca.

Department of Emergency Medicine, University of Ottawa, Ottawa, ON, Canada. sfern014@uottawa.ca.

ICES, Toronto, ON, Canada.

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.

Bruyere Research Institute, Ottawa, ON, Canada.

School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.

Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada.

Department of Pediatrics, University of Ottawa, Ottawa, ON, Canada.

Division of Critical Care, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.

Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, ON, Canada.

Department of Critical Care Medicine, The Hospital for Sick Children, Toronto, ON, Canada.

Department of Pediatrics, McGill University, Montreal, QC, Canada.

Division of Critical Care, Montreal Children's Hospital, Montreal, QC, Canada.

Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada.

Department of Medicine, Sinai Health System, Toronto, ON, Canada.

Department of Medicine, Division of Critical Care, McMaster University, Hamilton, ON, Canada.

Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada.

Department of Critical Care Medicine, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.

Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada.

Division of Pulmonary, Allergy, and Critical Care Medicine, Department of Medicine, Columbia University College of Physicians and Surgeons and New York-Presbyterian Hospital, New York, NY, USA.

Division of Critical Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada.

Institut du Savoir Montfort, Ottawa, ON, Canada.

              BACKGROUND: Extracorporeal membrane oxygenation (ECMO) is used to provide temporary cardiorespiratory support to critically ill children. While short-term outcomes and costs have been evaluated in this population, less is known regarding long-term survival and costs. METHODS: Population-based cohort study from Ontario, Canada (October 1, 2009 to March 31, 2017), of pediatric patients (< 18 years of age) receiving ECMO, identified through the use of an ECMO procedural code. Outcomes were identified through linkage to provincial health databases. Primary outcome was survival, measured to hospital discharge, as well as at 1 year, 2 years, and 5 years following ECMO initiation. We evaluated total patient costs in the first year following ECMO. RESULTS: We analyzed 342 pediatric patients. Mean age at ECMO initiation was 2.9 years (standard deviation [SD] = 5.0). Median time from hospital admission to ECMO initiation was 5 days (interquartile range [IQR] = 1-13 days). Overall survival to hospital discharge was 56.4%. Survival at 1 year, 2 years, and 5 years was 51.5%, 50.0%, and 42.1%, respectively. Among survivors, 99.5% were discharged home. Median total costs among all patients in the year following hospital admission were $147,957 (IQR $70,571-$300,295). Of these costs, the large proportion were attributable to the inpatient cost from the index admission (median $119,197, IQR $57,839-$250,675). CONCLUSIONS: Children requiring ECMO continue to have a significant in-hospital mortality, but reassuringly, there is little decrease in long-term survival at 1 year. Median costs among all patients were substantial, but largely reflect inpatient hospital costs, rather than post-discharge outpatient costs. This information provides value to providers and health systems, allowing for prognostication of short- and long-term outcomes, as well as long-term healthcare-related expenses for pediatric ECMO survivors.

Fishman, M., E. T. Paquette, R. Gandhi, T. R. Pendergrast, M. Park, E. Flanagan and L. F. Ross (2020). "Surrogate Decision Making for Children: Who Should Decide?" J Pediatr 220: 221-226.Boston Children's/Boston Medical Center, Boston, MA.

Northwestern University Feinberg School of Medicine, Chicago, IL; Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.

Advocate Children's Hospital, Chicago, IL.

Department of Pediatrics, University of Chicago, Chicago, IL.

Department of Pediatrics, University of Chicago, Chicago, IL. Electronic address: Lross@uchicago.edu.

              OBJECTIVE: To identify caregivers' views on preferred surrogate decision makers for their children. STUDY DESIGN: A respondent-anonymous survey was distributed to a convenience sample of adults who accompanied a child to general and subspecialty pediatric care at 2 different institutions or were at the bedside of a child in the pediatric intensive care unit at a third institution in Chicago. RESULTS: We collected 462 valid surveys. The average age of the legal guardian and accompanying child was 36.8 years and 6.6 years, respectively. Most legal guardians designated "other parent with legal authority" as their first choice surrogate decision maker (70%). Respondent's sex, respondent's age, child's age, and child's ethnicity had no effect on first choice surrogate decision maker. "Other parent with legal authority" was less likely to be first choice surrogate if respondents had Medicaid insurance, less than a college degree, or lived in a non-nuclear household (P<.01 for all factors). The surrogacy ladder selected by 31% of legal guardians was "other parent with legal authority," "child's grandparent(s)," and "child's aunt(s) or uncle(s)." No other sequence received more than 10% designation. Study site had no effect on surrogate preference (P = .30). CONCLUSIONS: A surrogacy priority ladder for minors needs to include relatives who are often not included in state surrogacy statutes (eg, grandparents, aunts and uncles). The most popular surrogacy ladder will not be ideal for many families. Parents need to be informed and empowered to choose alternate surrogates, and documented preferences must be easily and widely accessible.

Fortney, C. A., A. E. Baughcum, E. L. Moscato, A. M. Winning, M. C. Keim and C. A. Gerhardt (2020). "Bereaved Parents' Perceptions of Infant Suffering in the NICU." J Pain Symptom Manage 59(5): 1001-1008.Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA; Martha S. Pitzer Center for Women, Children, and Youth, College of Nursing, The Ohio State University, Columbus, Ohio, USA. Electronic address: fortney.19@osu.edu.

Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio, USA; Department of Pediatrics, College of Medicine, The Ohio State University, Columbus, Ohio, USA.

Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA.

Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA; Department of Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, Ohio, USA; Department of Pediatrics, College of Medicine, The Ohio State University, Columbus, Ohio, USA; Department of Psychology, The Ohio State University, Columbus, Ohio, USA.

              CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.

Franck, L. S., C. Waddington and K. O'Brien (2020). "Family Integrated Care for Preterm Infants." Crit Care Nurs Clin North Am 32(2): 149-165.Department of Family Health Care Nursing, School of Nursing, University of California, San Francisco, Box 0606, San Francisco, CA 94143, USA. Electronic address: linda.franck@ucsf.edu.

School of Nursing, University of British Columbia, T201-2211 Wesbrook Mall, Vancouver, British Columbia V6T1Z7, Canada.

Department of Pediatrics, Sinai Health System, Toronto, Ontario, Canada; Department of Paediatrics, University of Toronto, 19-231A -600 University Avenue, Toronto, Ontario M5G 1X5, Canada.

              Parent-infant separation is a major source of stress for parents of hospitalized preterm infants and has negative consequences for infant health and development. Family Integrated Care (FICare) uses a strengths-based approach, based on family-centered care principles to promote parental empowerment, learning, shared decision making, and positive parent-infant caregiving experiences. Outcomes of FICare include increased self-efficacy upon discharge and improved parent-infant relationships and infant developmental outcomes. In this article, the authors describe the FICare model and emerging evidence regarding outcomes of FICare for infants and families and discuss challenges and opportunities in implementing and maintaining high-quality FICare.

Frechette, J., M. Lavoie-Tremblay, K. Kilpatrick and V. Bitzas (2020). "When the paediatric intensive care unit becomes home: A hermeneutic-phenomenological study." Nurs Crit Care 25(3): 140-148.McGill University Ingram School of Nursing, Montreal, Quebec, Canada.

Quebec Integrated University Centre for Health and Social Services of Western Central Montreal Island, Montreal, Quebec, Canada.

              BACKGROUND: Family-centred care is the dominant model for providing nursing care in paediatrics. Unit layout has been shown to impact nurses' ability to provide family-centred care. Little is known about the meanings and experiences of paediatric intensive care unit nurses concerning the care they provide to families within their unique physical setting. AIM: This study examined paediatric intensive care unit nurses' lived experience of caring for families following a major hospital transformation project, which included the construction of a new unit and quality improvement changes. STUDY DESIGN: A hermeneutic-phenomenological design was selected to study a paediatric intensive care unit in a large Canadian paediatric teaching hospital. METHODS: Data were collected over a 6-month period through individual interviews, photographs, participant observation, and document review. The sample consisted of 15 paediatric intensive care unit nurses who experienced the unit both pre- and post-transformation. Data were analysed in an ongoing fashion using the method described by Benner to identify common and divergent meanings. RESULTS: Despite pride in offering a family-friendly environment, nurses' practice prejudiced a family focus in favour of patient-centred care. Nurses in this study negotiated physical and practice spaces with families by interpreting that nurses do not belong in the home-like patient room and exhibiting gatekeeping comportments. CONCLUSION: Although similar nurse comportments have been identified in prior works, no previous studies have identified these as forming a pattern of negotiating spaces with families. RELEVANCE TO CLINICAL PRACTICE: This study provides insights into the lived experience of paediatric intensive care unit nurses in relation to family care, which can stimulate reflections at an organizational level about creating environments where nurses and families can both feel at home.

Gaelle, S., L. Dany, R. Vialet, L. Thomachot, S. Hassid, F. Michel and B. Tosello (2020). "How doctors communicated with parents in a neonatal intensive care: communication and ethical issues." Acta Paediatr.Aix-Marseille University/ EFS, CNRS, UMR 7268 ADÉS, Espace Éthique Méditerranéen, Hospital La Timone, 13005, Marseille, France.

Department of Neonatal Medicine, North Hospital, Assistance Publique-Hôpitaux de Marseille, 13015, Marseille, France.

Aix-Marseille University, LPS EA 849, 13621, Aix-en-Provence, France.

Department of Oncology, Assistance Publique-Hôpitaux de Marseille, Hospital La Timone, 13005, Marseille, France.

Department of Pediatric Intensive Care Unit, Assistance-Publique des Hôpitaux de Marseille, Hospital La Timone, 13005, Marseille, France.

              AIM: Doctors have a moral and legal obligation to keep patients and their families informed and this is an integral part of care. We explored the communication strategies used by doctors when they spoke to parents in a French neonatal intensive care unit (NICU). METHODS: This was a single-centre qualitative pilot study carried out from October 2015 to January 2016. We asked five doctors (three female) to audiotape their discussions with the parents of newborn infants during their NICU stay. The doctors' mean age was 43 and they had a mean of 14 years of NICU experience. Each discussion was subjected to thematic content analysis. RESULTS: We analysed 40 discussions carried out between doctors on 26 newborn infants. Five communication strategy themes emerged: building understanding, how the communication was constructed, the role of the doctor, and of the parents, in the overall care of the newborn infant and how the information given to the parents developed over time. CONCLUSION: Analysing the content of the information discussed with parents provided us with the opportunity to understand the communication and ethical issues surrounding the delivery of information in a NICU. This could be used to improve future discussions between doctors and parents.

Gaetani, M., H. Frndova, W. Seto and C. Parshuram (2020). "Pharmacotherapy in Critically Ill Children: A Retrospective Review of 17,199 Admissions." Pediatric Critical Care Medicine 21(4): E170-E176.[Gaetani, Melany; Frndova, Helena; Seto, Winnie; Parshuram, Christopher] Hosp Sick Children, Res Inst, Child Hlth Evaluat Sci, Toronto, ON, Canada. [Gaetani, Melany; Frndova, Helena; Seto, Winnie; Parshuram, Christopher] Hosp Sick Children, Dept Crit Care Med, Toronto, ON, Canada. [Parshuram, Christopher] Univ Toronto, Interdept Div Crit Care Med, Fac Med, Toronto, ON, Canada. [Frndova, Helena; Parshuram, Christopher] Hosp Sick Children, Ctr Safety Res, Toronto, ON, Canada. [Seto, Winnie; Parshuram, Christopher] Univ Toronto, Dept Hlth Policy Management & Evaluat, Toronto, ON, Canada. [Seto, Winnie; Parshuram, Christopher] Hosp Sick Children, Dept Pharm, Toronto, ON, Canada. [Parshuram, Christopher] Univ Toronto, Inst Med Sci, Fac Med, Toronto, ON, Canada. [Parshuram, Christopher] Univ Toronto, Fac Med, Dept Paediat, Toronto, ON, Canada.

Parshuram, C (reprint author), Hosp Sick Children, Res Inst, Child Hlth Evaluat Sci, Toronto, ON, Canada.; Parshuram, C (reprint author), Hosp Sick Children, Dept Crit Care Med, Toronto, ON, Canada.; Parshuram, C (reprint author), Univ Toronto, Interdept Div Crit Care Med, Fac Med, Toronto, ON, Canada.; Parshuram, C (reprint author), Hosp Sick Children, Ctr Safety Res, Toronto, ON, Canada.; Parshuram, C (reprint author), Univ Toronto, Dept Hlth Policy Management & Evaluat, Toronto, ON, Canada.; Parshuram, C (reprint author), Hosp Sick Children, Dept Pharm, Toronto, ON, Canada.; Parshuram, C (reprint author), Univ Toronto, Inst Med Sci, Fac Med, Toronto, ON, Canada.; Parshuram, C (reprint author), Univ Toronto, Fac Med, Dept Paediat, Toronto, ON, Canada.

christopher.parshuram@sick-kids.ca

              Objectives: Despite the ubiquitous role of pharmacotherapy in the care of critically ill children, descriptions of the extent of pharmacotherapy in critical illness are limited. Greater understanding of drug therapy can help identify clinically important associations and assist in the prioritization of efforts to address knowledge gaps. The objectives of this study were to describe the diversity, volume, and patterns of pharmacotherapy in critically ill children. Design: A retrospective cohort study was performed with patient admissions to the ICU between July 31, 2006, and July 31, 2015. Setting: The study took place at a single, free-standing, pediatric, quaternary center. Patients: Eligible patient admissions were admitted to the ICU for more than 6 hours and received one or more drug administration. There were a total 17,482 patient-admissions and after exclusion of 283 admissions (2%) with no documented enteral or parenteral drug administration, 17,199 eligible admissions were studied. Interventions: None. Measurements and Main Results: The 17,199 eligible admissions were admitted to the ICU for 2,208,475 hours and received 515 different drugs. The 1,954,171 administrations were 894,709 (45%) enteral administrations, 998,490 (51%) IV injections and 60,972 (3%) infusions. Infusions were administered for 4,476,538 hours. Twelve-thousand two-hundred seventy-three patients (71%) were administered five or more different drugs on 80,943 of patient days (75%). The 10 most commonly administered drugs comprised of 834,441 administrations (43%). Conclusions: Drug administration in the ICU is complex, involves many medications, and the potential for drug interaction and reaction is compounded by the volume and diversity of therapies routinely provided in ICU. Further evaluation of polytherapy could be used to improve outcomes and enhance the safety of pharmacotherapy in critically ill children.

Gerrish, N. J. and S. Bailey (2020). "Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer." Omega (Westport) 81(2): 197-241.Clinical Psychologist, Private Practice.

Kind Spaces Consultancy, Institute of Agriculture, University of Western Australia, Perth Australia.

              This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis-guided by meaning-making theories of loss-revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.

Gong, C. L., A. Y. Song, R. Horak, P. S. Friedlich, A. Lakshmanan, J. D. Pruetz, L. Yieh, S. Ram Kumar and R. G. Williams (2020). "Impact of Confounding on Cost, Survival, and Length-of-Stay Outcomes for Neonates with Hypoplastic Left Heart Syndrome Undergoing Stage 1 Palliation Surgery." Pediatr Cardiol.Division of Neonatology, Department of Pediatrics, Fetal & Neonatal Institute, Children's Hospital Los Angeles, 4650 Sunset Boulevard, MS #31, Los Angeles, CA, 90027, USA. gongc@usc.edu.

Leonard D. Schaeffer Center for Health Policy and Economics, School of Pharmacy, Los Angeles, USA. gongc@usc.edu.

Keck School of Medicine, University of Southern California, Los Angeles, CA, 90027, USA. gongc@usc.edu.

Division of Neonatology, Department of Pediatrics, Fetal & Neonatal Institute, Children's Hospital Los Angeles, 4650 Sunset Boulevard, MS #31, Los Angeles, CA, 90027, USA.

Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, USA.

Keck School of Medicine, University of Southern California, Los Angeles, CA, 90027, USA.

Department of Anesthesia and Critical Care, Children's Hospital Los Angeles, Los Angeles, USA.

Leonard D. Schaeffer Center for Health Policy and Economics, School of Pharmacy, Los Angeles, USA.

Division of Cardiology, Department of Pediatrics, Heart Institute, Children's Hospital Los Angeles, Los Angeles, USA.

Division of Cardiothoracic Surgery, Department of Surgery, Heart Institute, Children's Hospital Los Angeles, Los Angeles, USA.

              The objective of this analysis was to update trends in LOS and costs by survivorship and ECMO use among neonates with hypoplastic left heart syndrome (HLHS) undergoing stage 1 palliation surgery using 2016 data from the Healthcare Cost and Utilization Project Kids' Inpatient Database. We identified neonates ≤ 28 days old with HLHS undergoing Stage 1 surgery, defined as a Norwood procedure with modified Blalock-Taussig (BT) shunt, Sano modification, or both. Multivariable regression with year random effects was used to compare LOS and costs by hospital region, case volume, survivorship, and ECMO vs. no ECMO. An E-value analysis, an approach for conducting sensitivity analysis for unmeasured confounding, was performed to determine if unmeasured confounding contributed to the observed effects. Significant differences in total costs, LOS, and mortality were noted by hospital region, ECMO use, and sub-analyses of case volume. However, other than ECMO use and mortality, the maximum E-value confidence interval bound was 1.71, suggesting that these differences would disappear with an unmeasured confounder 1.71 times more associated with both the outcome and exposure (e.g., socioeconomic factors, environment, etc.) Our findings confirm previous literature demonstrating significant resource utilization among Norwood patients, particularly those undergoing ECMO use. Based on our E-value analysis, differences by hospital region and case volume can be explained by moderate unobserved confounding, rather than a reflection of the quality of care provided. Future analyses on surgical quality must account for unobserved factors to provide meaningful information for quality improvement.

Govindaswamy, P., S. M. Laing, D. Waters, K. Walker, K. Spence and N. Badawi (2020). "Fathers' needs in a surgical neonatal intensive care unit: Assuring the other parent." PLoS One 15(5): e0232190.Grace Centre for Newborn Care, Children's Hospital at Westmead, Westmead, Australia.

Sydney Medical School, University of Sydney, Sydney, Australia.

Western Sydney University, Sydney, Australia.

Sydney Nursing School, University of Sydney, Sydney, Australia.

              OBJECTIVES: Fathers of infants admitted to Neonatal Intensive Care Unit (NICU) play an important role and have individual needs that are often not recognised. While there is considerable evidence regarding mothers' needs in the NICU, information about fathers' is particularly limited. This study identifies the needs of fathers of newborns admitted to NICU for general surgery of major congenital anomalies, and whether health-care professionals meet these needs. METHODS: Forty-eight fathers of infants admitted for surgery between February 2014 and September 2015 were enrolled in a prospective cohort study. Fathers completed the Neonatal Family Needs Inventory comprising 56 items in 5 subscales (Support, Comfort, Information, Proximity, Assurance) at admission and discharge and whether these needs were met; as well as the Social Desirability Scale. RESULTS: Responses showed Assurance was the most important subscale (M 3.8, SD .26). Having questions answered honestly (M 3.9, SD .20) and knowing staff provide comfort to their infant (M 3.94, SD .24) were fathers' most important needs. By discharge, fathers expressed a greater importance on being recognised and more involved in their infant's care. More than 91% indicated their ten most important needs were met by the NICU health-care professionals, with no significant changes at discharge. Clergical visits (M 2.08, SD 1.21) were least important. CONCLUSIONS: Reassurance is a priority for fathers of neonates in a surgical NICU, particularly regarding infant pain management and comfort. It is important that health-care professionals provide reliable, honest information and open-access visiting. Notably, fathers seek greater recognition of their role in the NICU-beyond being the 'other' parent.

Gray, M. M., A. A. Thomas, B. Burns and R. A. Umoren (2020). "Evacuation of Vulnerable and Critical Patients: Multimodal Simulation for Nurse-Led Patient Evacuation." Simul Healthc.From the Division of Neonatology (M.M.G., R.A.U.), Department of Pediatrics; Division of Pediatric Emergency Medicine (A.A.T.), Department of Pediatrics, University of Washington and Seattle Children's Hospital; and Division of Pediatric Emergency Medicine (B.B.), Seattle Children's Hospital, Seattle, WA.

              INTRODUCTION: Virtual simulation (VS) is an adaptable medium for teaching critical disaster management skills such as efficient hospital evacuation. We aimed to compare VS and prerecorded narrated multimedia lecture-based training of pediatric nurses for evacuation of a sick newborn in the neonatal intensive care unit and pediatric emergency department (ED) using live evacuation simulations. METHODS: Thirty neonatal intensive care unit and 30 ED nurses enrolled with 30 randomized to multimedia lecture and 30 randomized to VS, with equal block distribution of nurses from each unit. Pretraining/posttraining surveys were administered, and live evacuation simulations were scored for time to evacuation, items collected, and communication. RESULTS: Overall, disaster preparation and communication improved within the VS group as compared with the multimedia lecture group. Virtual simulation rated more immersive (P < 0.001), better at safety threat identification (P < 0.05), and better at evacuation preparation compared with multimedia lecture (P < 0.01). Virtual simulation participants felt more prepared in disaster response (P < 0.001) and patient evacuation (P < 0.001). Both groups packed equal essential items, but VS participants packed more equipment (mean, 19 vs. 15, P < 0.01) with no significant evacuation time difference between the VS group (145 ± 58 seconds) and multimedia lecture group (152 ± 59 seconds, P = not significant). Virtual simulation participants had better communication ratings with the charge nurse (P < 0.05) and family (P < 0.001). CONCLUSIONS: Virtual simulation was well received by nurses compared with multimedia lecture and may be an effective adjunct for training nurses on infant patient evacuation during a disaster.

Griffiths, N., K. James-Nunez, K. Spence, C. Crowle, J. Pettigrew and A. Loughran-Fowlds (2020). "The Evolution of an Interdisciplinary Developmental Round in a Surgical Neonatal Intensive Care Unit." Adv Neonatal Care.Australasian NIDCAP Training Centre (Ms Griffiths, Ms James-Nunez, Ms Spence, Dr Crowle, Ms Pettigrew, Dr Loughran-Fowlds), Grace Centre for Newborn Intensive Care (Ms Spence, Dr Loughran-Fowlds, Ms Griffiths, Ms James-Nunez and Dr Crowle) and Speech Pathology Department (Ms Pettigrew), The Children's Hospital at Westmead, Sydney, New South Wales, Australia.

              BACKGROUND: Developmentally supportive environments are known to improve medical outcomes for hospitalized neonates and are considered the overarching philosophy for practice in the neonatal setting. Developmental rounds are a strategy incorporated by multidisciplinary teams to support development within and beyond the neonatal unit. Typically, they consist of bedside consultations and individualized developmentally supportive recommendations for families and clinicians. Globally, the use of developmental rounds has been described since the early 1990s. They are viewed as a measure to counter some of the barriers to developmental care implementation while buffering against the effect of an intensive care admission. To date, their use in the surgical neonatal intensive care unit (sNICU) has been minimally reported in literature. PURPOSE: This article describes the focus and work of a developmental round team and strategy in the sNICU. METHOD: A retrospective audit of developmental round key performance criteria undertaken over a 4-year period (2015-2018). FINDINGS/RESULTS: More than 300 developmental consults and 2000 individualized developmental recommendations occurred annually. Parental presence during the developmental round increased by 10%, from 48% to 58%, during the audit period. IMPLICATIONS FOR PRACTICE/IMPLICATIONS FOR RESEARCH: Literature has supported the use of developmental round interventions; however, minimal data have been reported to date. This article provides retrospective audit data of a developmental round intervention in the sNICU with a focus on data over 4 years to highlight key areas, including the structure and process, recommended educational standards for team members, and parental engagement, as key markers for developmental round efficacy. Future research should focus on the link between the developmental round intervention and long-term neonatal outcomes.

Hamamra, B. T. (2020). "The bereavement of martyred Palestinian children: gendered, religious, national perspectives." Psychodynamic Practice.[Hamamra, Bilal Tawfiq] An Najah Natl Univ, Dept English Language & Literature, Nablus, Palestine.

Hamamra, BT (reprint author), An Najah Natl Univ, Dept English Language & Literature, Nablus, Palestine. bilalhamamra@najah.edu

Hansson, L., J. Wrigstad and A. M. Wangel (2020). "Challenges in the handover process of the new-born with congenital heart disease." Intensive Crit Care Nurs 59: 102855.Skane University Hospital, Clinical Departments of Childrens Surgery, Heart Surgery and Neonatology, PICU, Getingev. 4, SE-221 85 Lund, Sweden. Electronic address: linda.hansson@skane.se.

Department of Clinical Sciences Lund, Lund University, SE-221 00 Lund, Sweden. Electronic address: jonas.wrigstad@med.lu.se.

Malmo University, Faculty of Health and Society, Institution of Care Science, Jan Waldenstroms Gata 25, SE-205 06 Malmo, Sweden. Electronic address: anne-marie.wangel@mau.se.

              INTRODUCTION: A new-born with congenital heart disease requires care that involves numerous specialists. Such care can be provided at tertiary referral hospitals and transportation is often needed. A crucial factor is the handover process, when the child is born at a distance, with transfer of both professional responsibility and continued care from one healthcare professional to another. AIM: The aim of this study was to identify crucial factors for the receiving healthcare professionals that influence the handover process of the new-born with congenital heart disease. METHOD: A cross-sectional questionnaire study with 53 receiving healthcare professionals at a paediatric intensive care unit at a tertiary referral university hospital in Sweden. The response rate was 48/53. Numerical variables were computed and a content analysis was performed. FINDINGS: The handover process of the new-born with heart disease transferred to a tertiary referral hospital is complicated. A clear majority of the respondents identified one or more flaws in this process. Crucial factors identified were: relevant and structured information, clear communication, adequate patient knowledge and an enabling environment. CONCLUSION: A standardised procedure in the different phases of the handover process could improve communication, the working situation for healthcare professionals and thereby increase patient safety.

Harhay, M. O., J. D. Casey, M. Clement, S. P. Collins, É. Gayat, M. N. Gong, S. Jaber, P. F. Laterre, J. C. Marshall, M. A. Matthay, R. E. Monroe, T. W. Rice, E. Rubin, W. H. Self and A. Mebazaa (2020). "Contemporary strategies to improve clinical trial design for critical care research: insights from the First Critical Care Clinical Trialists Workshop." Intensive Care Med 46(5): 930-942.Palliative and Advanced Illness Research (PAIR) Center, Perelman School of Medicine, University of Pennsylvania, 304 Blockley Hall, 423 Guardian Drive, Philadelphia, PA, 19104-6021, USA. mharhay@pennmedicine.upenn.edu.

Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. mharhay@pennmedicine.upenn.edu.

Division of Allergy, Pulmonary, and Critical Care Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.

Hôpital Privé Jacques Cartier, Massy, France.

Department of Emergency Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.

Department of Anesthesia, Burn and Critical Care, University Hospitals Saint-Louis - Lariboisière, AP-HP, Paris, France.

UMR-S 942 'MASCOT', Inserm, Paris, France.

Université de Paris, Paris, France.

Division of Critical Care Medicine, Department of Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA.

Department of Anaesthesiology and Critical Care Medicine B (DAR B), Saint-Eloi Teaching Hospital, PhyMed Exp, INSERM U1046, University of Montpellier, Montpellier, France.

Department of Intensive Care, Cliniques St-Luc, Université Catholique de Louvain, Brussels, Belgium.

Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health, Toronto, Canada.

Cardiovascular Research Institute, University of California-San Francisco, San Francisco, CA, USA.

Heart Failure Society of America (HFSA), HFSA Patient Committee, Rockville, MD, USA.

ARDS Foundation, Northbrook, IL, USA.

              BACKGROUND: Conducting research in critically-ill patient populations is challenging, and most randomized trials of critically-ill patients have not achieved pre-specified statistical thresholds to conclude that the intervention being investigated was beneficial. METHODS: In 2019, a diverse group of patient representatives, regulators from the USA and European Union, federal grant managers, industry representatives, clinical trialists, epidemiologists, and clinicians convened the First Critical Care Clinical Trialists (3CT) Workshop to discuss challenges and opportunities in conducting and assessing critical care trials. Herein, we present the advantages and disadvantages of available methodologies for clinical trial design, conduct, and analysis, and a series of recommendations to potentially improve future trials in critical care. CONCLUSION: The 3CT Workshop participants identified opportunities to improve critical care trials using strategies to optimize sample size calculations, account for patient and disease heterogeneity, increase the efficiency of trial conduct, maximize the use of trial data, and to refine and standardize the collection of patient-centered and patient-informed outcome measures beyond mortality.

Helps, A., S. Leitao, R. Greene and K. O'Donoghue (2020). "Perinatal mortality audits and reviews: Past, present and the way forward." Eur J Obstet Gynecol Reprod Biol 250: 24-30.Pregnancy Loss Research Group, Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland; National Perinatal Epidemiology Centre (NPEC), University College Cork, Cork, Ireland; The Irish Centre for Maternal and Child Health Research (INFANT), University College Cork, Cork, Ireland. Electronic address: Aenne.helps@ucc.ie.

Pregnancy Loss Research Group, Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland; National Perinatal Epidemiology Centre (NPEC), University College Cork, Cork, Ireland.

National Perinatal Epidemiology Centre (NPEC), University College Cork, Cork, Ireland.

Pregnancy Loss Research Group, Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland; The Irish Centre for Maternal and Child Health Research (INFANT), University College Cork, Cork, Ireland.

              Perinatal deaths are devastating for families and staff involved. Failure to examine perinatal deaths for substandard care prevents learning and may lead to recurrence of events, as well as prolonged morbidity in bereaved families and hospital staff. Perinatal mortality reviews can identify factors contributing to suboptimal care. An integrative literature review was carried out to study the different types of perinatal mortality reviews currently being done internationally, establishing a comparison and examining promising new developments. We start by outlining issues with the classification of perinatal deaths and the different types of perinatal mortality reviews carried out in high-income countries. We reflect on the challenges that are encountered in the current processes and we then comment on how these may be overcome. Current literature shows that differences in classifications of perinatal deaths continue to impede important international comparisons. National perinatal mortality audits can provide reliable high-quality data to facilitate national and international benchmarking. Confidential enquiries give expert assessment on anonymised information to initiate system-wide improvements, but to provide local information on perinatal deaths unit-based multi-disciplinary team reviews are required. Additionally, there is a need to shift from a blame-culture to a focus on achieving best practice by learning from mistakes. Review tools and processes have been implemented in some countries to standardize perinatal mortality reviews, but there is still more work to be done. Involving the bereaved parents in the perinatal mortality review process is important and ways to achieve this are progressing. A structured approach to the perinatal mortality review process should be developed to facilitate sharing of experiences and challenges at national (or international) level. To achieve a reduction in the number of stillbirths and neonatal deaths, it is crucial to ensure that the perinatal mortality audit and review cycle is completed with implementation and re-evaluation of recommended changes in maternity services.

Hurst, D. J., L. A. Padilla, W. Walters, J. M. Hunter, D. K. C. Cooper, D. M. Eckhoff, D. Cleveland and W. Paris (2020). "Paediatric xenotransplantation clinical trials and the right to withdraw." J Med Ethics 46(5): 311-315.Family & Community Medicine, UAB, Birmingham, Alabama, USA djhurst@uab.edu.

Epidemiology, UAB, Birmingham, Alabama, USA.

Clinical Ethics, UAB, Birmingham, Alabama, USA.

Anesthesiology and Critical Care, UAB, Birmingham, Alabama, USA.

Co-Director, UAB Xenotransplant Program, UAB, Birmingham, Alabama, USA.

Director, Division of Transplantation, UAB, Birmingham, Alabama, USA.

Surgery, UAB, Birmingham, Alabama, USA.

Social Work, Abilene Christian University, Abilene, Texas, USA.

              Clinical trials of xenotransplantation (XTx) may begin early in the next decade, with kidneys from genetically modified pigs transplanted into adult humans. If successful, transplanting pig hearts into children with advanced heart failure may be the next step. Typically, clinical trials have a specified end date, and participants are aware of the amount of time they will be in the study. This is not so with XTx. The current ethical consensus is that XTx recipients must consent to lifelong monitoring. While this presents challenges to the right to withdraw in the adult population, additional and unanswered questions also linger in the paediatric population. In paediatric XTx, parents or guardians consent not only to the initial treatment of the child but also to lifelong monitoring, thus making a decision whose consequences will remain present as the child develops the capacity for assent, and finally the capacity for informed consent or refusal. This article presents and evaluates unanswered paediatric ethical questions in regard to the right to withdraw from XTx follow-up in the paediatric population.

Huth, K., L. Amar-Dolan, J. M. Perez, D. Luff, A. P. Cohen, L. Glader, A. Leichtner and L. R. Newman (2020). "Visiting Jack: Mixed methods evaluation of a virtual home visit curriculum with a child with medical complexity." Acad Pediatr.Department of Pediatrics, Boston Children's Hospital, Boston MA. Electronic address: kathleen.huth@childrens.harvard.edu.

Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, MA.

Institute for Professionalism and Ethical Practice, Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, MA.

Department of Health Policy and Management, Harvard Chan School of Public Health, Boston MA.

Department of Pediatrics, Boston Children's Hospital, Boston MA.

Department of Education, Boston Children's Hospital, Boston, MA.

              BACKGROUND: There are limited training opportunities for pediatricians in caring for children with medical complexity (CMC) in the home and community. Prior studies have described a lack of comfort caring for CMC among pediatric residents. OBJECTIVE: 1) To evaluate the impact of participation in a virtual home visit curriculum on pediatric residents' confidence, knowledge, and application of knowledge in complex care; 2) to explore changes in perspectives relating to the care of CMC after participation in the curriculum. METHODS: This was a prospective pre-post intervention study in 2019 with first-year pediatric residents, using quantitative and qualitative methods. The intervention, co-created with a family partner, was an online video-based curriculum followed by an in-person seminar. Pre- and post-assessments were compared using paired t-tests. Follow-up interviews and focus groups were performed 5-8 weeks after training. Transcripts were analyzed using inductive thematic analysis. RESULTS: Twenty-four residents (100%) participated. Residents reported increased confidence in all aspects of complex care presented in the curriculum​, with significant increase in knowledge and application of knowledge (all p<0.001). Twelve residents (50%) participated in a follow-up interview or focus group. Four themes were identified: 1) recognizing prior attitudes toward complexity, 2) new mental framework for complex care at home, 3) drivers of behavior change, 4) commitment to change practice. CONCLUSIONS: Participation in this curriculum was associated with increased confidence, knowledge, and application of knowledge in complex care outside of the hospital. Qualitative findings align with transformative learning theory, lending insight into effective approaches to complex care training.

Jager, S., K. Kavanaugh, S. Hoffman, T. Laitano, E. Jeffries and B. T. Edmonds (2020). "Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery." Journal of Perinatal & Neonatal Nursing 34(2): 178-185.[Jager, Shannon] Indiana Univ Sch Med, Indianapolis, IN 46202 USA. [Kavanaugh, Karen] Childrens Hosp Wisconsin, Milwaukee, WI 53201 USA. [Kavanaugh, Karen] Univ Illinois, Coll Nursing, Chicago, IL USA. [Hoffman, Shelley; Laitano, Tatiana; Jeffries, Erin; Tucker Edmonds, Brownsyne] Indiana Univ Sch Med, Dept Obstet & Gynecol, 410 W 10th St, Indianapolis, IN 46202 USA.

Edmonds, BT (reprint author), Indiana Univ Sch Med, Dept Obstet & Gynecol, 410 W 10th St, Indianapolis, IN 46202 USA. btuckere@iupui.edu

              During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.

Janvier, A., K. J. Barrington and A. Payot (2020). "A time for hope: guidelines for the perinatal management of extremely preterm birth." Arch Dis Child Fetal Neonatal Ed 105(3): 230-231.Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada anniejanvier@hotmail.com.

Bureau de l'Éthique Clinique, University of Montreal, Montreal, Quebec, Canada.

Division of Neonatology, CHU Sainte-Justine, Montreal, Quebec, Canada.

Clinical Ethics Unit, Bureau du Partenariat Patients-Familles-Soignants, Unité de recherche en éthique clinique et partenariat famille, CHU Sainte-Justine, Montreal, Quebec, Canada.

Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada.

Johnston, E. E., J. Molina, I. Martinez, J. N. Dionne-Odom, E. R. Currie, T. Crowl, L. Butterworth, L. J. Chamberlain, S. Bhatia and A. R. Rosenberg (2020). "Bereaved parents' views on end-of-life care for children with cancer: Quality marker implications." Cancer.Division of Pediatric Hematology/Oncology, Department of Pediatrics, Stanford University, Stanford, California, USA.

Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama, USA.

School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA.

Jacob's Heart Children's Cancer Support Services, Watsonville, California, USA.

Division of General Pediatrics, Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA.

Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.

Cancer and Blood Disorders Center, Seattle Children's Hospital, Seattle, Washington, USA.

Treuman Katz Center for Pediatric Bioethics, Department of Pediatrics, Seattle Children's Research Institute, Seattle, Washington, USA.

              BACKGROUND: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. METHODS: This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer ≥6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). RESULTS: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. CONCLUSIONS: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.

Kaye, E. C., A. Kiefer, L. Blazin, H. Spraker-Perlman, L. Clark and J. N. Baker (2020). "Bereaved Parents, Hope, and Realism." Pediatrics 145(5).St Jude Children's Research Hospital, Memphis, Tennessee; and erica.kaye@stjude.org.

Children's Hospital New Orleans, New Orleans, Louisiana.

St Jude Children's Research Hospital, Memphis, Tennessee; and.

Kecir, K. A., S. Rothenburger, O. Morel, E. Albuisson and F. Ligier (2020). "Experiences of fathers having faced with termination of pregnancy for foetal abnormality." J Gynecol Obstet Hum Reprod: 101818.Psychiatrist in Pole de Psychiatrie et de Psychologie Clinique, Psychotherapeutic Centre of Nancy, Laxou, France. Electronic address: kahina.KECIR@cpn-laxou.com.

Child and adolescent psychiatrist in PUPEA, Psychotherapeutic Centre of Nancy, Laxou, France. Electronic address: sophie.rothenburger@cpn-laxou.com.

Maternity department at CHRU Nancy, France. Electronic address: olivier.morel@chru-nancy.fr.

Methodologist Biostatistician, Pôle S²R, PARC, UMDS, CHRU Nancy - InSiDens, University of Lorraine, France. Electronic address: e.albuisson@chru-nancy.fr.

Child and adolescent psychiatrist in PUPEA, Psychotherapeutic Centre of Nancy, Laxou, France; APEMAC EA 4360, University of Lorraine, France. Electronic address: fabienne.ligier@cpn-laxou.com.

              The development of medical ultrasound techniques and progress in prenatal diagnosis allows foetus malformations to be discovered during pregnancy. These outcomes may force parents to be faced with the decision of termination of pregnancy for foetal abnormality (TOP). According to the literature, some parents will develop somatic or psychological troubles during and after the TOP, differently depending on sex. Moreover, fathers feel sometimes isolated during TOP. It seems important to propose a specific support for fathers throughout this event. Aim of this qualitative study is to describe how fathers perceive the TOP, their feelings about caregivers and their strategies for coping. Our study was performed in the Maternity Department of the Nancy University Hospital, between April and December 2016 and concerns TOP beyond 22 weeks of amenorrhea. Semi-structured interview was offered to the father the day after the TOP. These semi-structured interviews were transcribed, and text thus obtained were subjected to inductivethematicanalysis. Eight men agreed to participate in this study. Results show that fathers have gone through intense emotional strain throughout the TOP. They experienced a fear of losing their partner, feelings of anger, loneliness and exclusion. They used internalisation, minimisation and avoidance by distraction. In addition, they all insisted on their desire to be beside their partners throughout the TOP. As found in recent literature, the midwives and other caregivers have a role to play in supporting the couple: during the TOP and after the procedure, because consequences may appear after several months.a.

Kenaley, K. M., A. L. Rickolt, D. A. Vandersteur, J. D. Ryan and J. L. Stefano (2020). "An intervention to decrease time to parents' first hold of infants in the Neonatal Intensive Care Unit requiring respiratory support." J Perinatol 40(5): 812-819.Pediatrics/Neonatology, Christiana Care Health System, Newark, DE, USA. Kaitlin.Kenaley@ChristianaCare.org.

Pediatrics/Neonatology, Christiana Care Health System, Newark, DE, USA.

              BACKGROUND: There are many barriers to parental skin-to-skin contact for critically ill neonates. Our aims were to decrease median time to first parental hold of neonates requiring respiratory support from 6.4 to 3 days, and to increase the percentage of neonates held within the first 24 h after birth from 6 to 75%. METHODS: Lean Six Sigma methodology was used to identify barriers to holding and opportunities for improvement. INTERVENTION: A multifactorial improvement bundle was implemented to reduce the time to first parental hold of critically ill neonates. RESULTS: Median time to first parental hold was reduced from 6.4 to 1.2 days (p < 0.01). Infants held within the first 24 h after birth increased from 6 to 35%. There was no increase in adverse events associated with parental holding. CONCLUSIONS: Implementation of an improvement bundle resulted in a significant reduction in time to first parental hold of infants requiring respiratory support.

Kett, J. C., M. L. Cunningham and A. Wightman (2020). "The legacy of language: Disfigurement bias in the NICU." Acta Paediatr 109(5): 880-882.Department of Pediatric Palliative Care, Mary Bridge Children's Hospital, Tacoma, WA, USA.

Department of Pediatrics, University of Washington, Seattle, WA, USA.

Seattle Children's Hospital Craniofacial Center, Seattle, WA, USA.

Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.

Divisions of Nephrology and Bioethics and Palliative Care, Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.

Killien, E. Y., B. Mills, N. A. Errett, V. Sakata, M. S. Vavilala, F. P. Rivara, N. Kissoon and M. A. King (2020). "Prediction of Pediatric Critical Care Resource Utilization for Disaster Triage." Pediatr Crit Care Med.Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington, Seattle, WA.

Harborview Injury Prevention and Research Center, University of Washington, Seattle, WA.

Department of Environmental and Occupational Health Sciences, University of Washington School of Public Health, Seattle, WA.

Northwest Healthcare Response Network, Tukwila, WA.

Pediatric Emergency Medicine, Mary Bridge Children's Hospital, Tacoma, WA.

Department of Anesthesiology and Pain Medicine, University of Washington, Seattle, WA.

Division of General Pediatrics, Department of Pediatrics, University of Washington, Seattle, WA.

Department of Pediatrics, BC Children's Hospital, Vancouver, BC, Canada.

Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA.

              OBJECTIVES: Pediatric protocols to guide allocation of limited resources during a disaster lack data to validate their use. The 2011 Pediatric Emergency Mass Critical Care Task Force recommended that expected duration of critical care be incorporated into resource allocation algorithms. We aimed to determine whether currently available pediatric illness severity scores can predict duration of critical care resource use. DESIGN: Retrospective cohort study. SETTING: Seattle Children's Hospital. PATIENTS: PICU patients admitted 2016-2018 for greater than or equal to 12 hours (n = 3,206). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We developed logistic and linear regression models in two-thirds of the cohort to predict need for and duration of PICU resources based on Pediatric Risk of Mortality-III, Pediatric Index of Mortality-3, and serial Pediatric Logistic Organ Dysfunction-2 scores. We tested the predictive accuracy of the models with the highest area under the receiver operating characteristic curve (need for each resource) and R (duration of use) in a validation cohort of the remaining one of three of the sample and among patients admitted during one-third of the sample and among patients admitted during surges of respiratory illness. Pediatric Logistic Organ Dysfunction score calculated 12 hours postadmission had higher predictive accuracy than either Pediatric Risk of Mortality or Pediatric Index of Mortality scores. Models incorporating 12-hour Pediatric Logistic Organ Dysfunction score, age, Pediatric Overall Performance Category, Pediatric Cerebral Performance Category, chronic mechanical ventilation, and postoperative status had an area under the receiver operating characteristic curve = 0.8831 for need for any PICU resource (positive predictive value 80.2%, negative predictive value 85.9%) and area under the receiver operating characteristic curve = 0.9157 for mechanical ventilation (positive predictive value 85.7%, negative predictive value 89.2%) within 7 days of admission. Models accurately predicted greater than or equal to 24 hours of any resource use for 78.9% of patients and greater than or equal to 24 hours of ventilation for 83.1%. Model fit and accuracy improved for prediction of resource use within 3 days of admission, and was lower for noninvasive positive pressure ventilation, vasoactive infusions, continuous renal replacement therapy, extracorporeal membrane oxygenation, and length of stay. CONCLUSIONS: A model incorporating 12-hour Pediatric Logistic Organ Dysfunction score performed well in estimating how long patients may require PICU resources, especially mechanical ventilation. A pediatric disaster triage algorithm that includes both likelihood for survival and for requiring critical care resources could minimize subjectivity in resource allocation decision-making.

Kim, A. R., Y. R. Tak, Y. S. Shin, E. H. Yun, H. K. Park and H. J. Lee (2020). "Mothers' Perceptions of Quality of Family-Centered Care and Environmental Stressors in Neonatal Intensive Care Units: Predictors of and Relationships with Psycho-emotional Outcomes and Postpartum Attachment." Matern Child Health J 24(5): 601-611.School of Nursing & The Graduate School of Information and Clinical Nursing, Hanyang University, 222 Wangsimni-ro, Seongdong-gu, Seoul, 04763, South Korea.

School of Nursing & The Graduate School of Information and Clinical Nursing, Hanyang University, 222 Wangsimni-ro, Seongdong-gu, Seoul, 04763, South Korea. yrtak@hanyang.ac.kr.

Research Institute of Nursing Science, Hanyang University, Seoul, South Korea. yrtak@hanyang.ac.kr.

Research Institute of Nursing Science, Hanyang University, Seoul, South Korea.

Division of Cancer Contorl & Policy, National Cancer Control Institute, National Cancer Center, Goyang, South Korea.

College of Medicine, Hanyang University, Seoul, South Korea.

              OBJECTIVES: Maternal attachment to promote role development in mothers of preterm infants is critical for babies' optimal growth and development. However, few models specify how neonatal intensive care units (NICUs) and their environments work to foster postpartum attachment (PPA) after preterm birth. We investigated relationships of quality of family-centered care and NICU environmental stressors with maternal PPA, to determine whether these are mediated by mothers' psycho-emotional response and whether pathways to PPA are moderated by developmental immaturity (gestation, birthweight). METHODS: A cross-sectional study using structural equation modeling was conducted on 294 mothers of premature infants with experience in NICUs in over 49 tertiary hospitals in 12 cities or provinces of South Korea. Data were collected using Korean versions of instruments including the Quality of Family-centered Care, Parental Stressor Scale: NICU, and Maternal Postpartum Attachment Scale. RESULTS: Maternal self-representation was a key predictor of PPA (β = .68), accounting for 42.2% of variance. Multi-group analysis indicated that NICU environmental stressor sensitivity (β = .26) and maternal self-representation (β = .67) were predictive of PPA in mothers of moderately preterm and low birthweight (32-36 weeks' gestation, 1500-2499 g birthweight) infants. Quality of family-centered developmental care (β = .11) and NICU environmental stressor sensitivity (β = - .16) had significant indirect effects on PPA through psycho-emotional responses. CONCLUSIONS FOR PRACTICE: Healthcare professionals should be aware of the importance of family-centered interventions focusing on psychosocial support and family participation in baby care, based on their environmental role in promoting PPA.

Klugman, D., K. Melton, P. O. Maynord, A. Dawson, G. Madhavan, V. L. Montgomery, M. Nock, A. Lee and A. Lyren (2020). "Assessment of an Unplanned Extubation Bundle to Reduce Unplanned Extubations in Critically Ill Neonates, Infants, and Children." JAMA Pediatr: e200268.Divisions of Cardiac Critical Care Medicine and Cardiology, Children's National Hospital, The George Washington University School of Medicine, Washington, DC.

Division of Neonatology, Department of Pediatrics, Cincinnati Children's Hospital, University of Cincinnati College of Medicine, Cincinnati, Ohio.

Pediatric Critical Care Medicine, Department of Pediatrics, Monroe Carell Jr Children's Hospital at Vanderbilt, Vanderbilt University School of Medicine, Nashville, Tennessee.

James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital, Cincinnati, Ohio.

Pediatric Critical Care Medicine, Department of Pediatrics, Norton Children's Hospital, University of Louisville, Louisville, Kentucky.

Division of Neonatology, Department of Pediatrics, UH Rainbow Babies and Children's Hospital, Case Western Reserve University School of Medicine, Cleveland, Ohio.

Division of Critical Care Medicine, Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University College of Medicine, Columbus.

Departments of Pediatrics and Bioethics, UH Rainbow Babies and Children's Hospital, Case Western Reserve University School of Medicine, Cleveland, Ohio.

              IMPORTANCE: Unplanned extubations (UEs) in children contribute to significant morbidity and mortality, with an arbitrary benchmark target of less than 1 UE per 100 ventilator days. However, there have been no multicenter initiatives to reduce these events. OBJECTIVE: To determine if a multicenter quality improvement initiative targeting all intubated neonatal and pediatric patients is associated with a reduction in UEs and morbidity associated with UE events. DESIGN, SETTING, AND PARTICIPANTS: This multicenter quality improvement initiative enrolled patients from pediatric, neonatal, and cardiac intensive care units (ICUs) in 43 participating children's hospitals from March 2016 to December 2018. All patients with an endotracheal tube requiring mechanical ventilation were included in the study. INTERVENTIONS: Participating hospitals implemented a quality improvement bundle to reduce UEs, which included standardized anatomic reference points and securement methods, protocol for high-risk situations, and multidisciplinary apparent cause analyses. MAIN OUTCOMES AND MEASURES: The main outcome measures for this study included bundle compliance with each factor tested and UE rates on the center level and on the cohort level. RESULTS: Among the 43 children's hospitals, the quality improvement initiative was associated with an aggregate 24.1% reduction in UE events, from a baseline rate of 1.135 UEs per 100 ventilator days to 0.862 UEs per 100 ventilator days. Across ICU settings studied, the pediatric ICU and neonatal ICU demonstrated centerline shifts, with an absolute reduction in events of 20.6% (from a baseline rate of 0.729 UEs per 100 ventilator days to 0.579 UEs per 100 ventilator days) and 17.6% (from a baseline rate of 1.555 UEs per 100 ventilator days to 1.282 UEs per 100 ventilator days), respectively. Most UEs required reintubation within 1 hour (mean of 120 of 206 events per month [58.3%]), followed by UEs that did not require reintubation (mean of 78 of 206 events per month [37.9%]) and UEs that resulted in cardiovascular collapse (mean of 8 of 206 events per month [3.9%]). Cardiovascular collapse events represented the most significant consequence of UE studied, and the collaborative reduced these UE events by 36.6%, from a study baseline rate of 0.041 UEs per 100 ventilator days to 0.026 UEs per 100 ventilator days. CONCLUSIONS AND RELEVANCE: This multicenter quality improvement initiative was associated with a reduction in UEs across different pediatric populations in diverse settings. A significant reduction in event rate and rate of harm (cardiovascular collapse) was observed, which was sustained over the time course of the intervention. This quality improvement process and UE bundle may be considered standard of care for pediatric hospitals in the future.

Köneş, M. and H. Yıldız (2020). "The level of grief in women with pregnancy loss: a prospective evaluation of the first three months of perinatal loss." J Psychosom Obstet Gynaecol: 1-10.Department of Obstetrics and Gynecology Nursing, Istanbul Faculty of Medicine Hospital, Istanbul University, Istanbul, Turkey.

Department of Obstetrics and Gynecology Nursing, Division of Nursing, Faculty of Health Sciences, Marmara University, Istanbul, Turkey.

              Objective: To prospectively investigate perinatal grief in women with pregnancy loss.Methods: A total of 215 women (mean (SD) age: 30.7 (5.9) years) who experienced pregnancy loss were included. Data on sociodemographic, marital and obstetric characteristics and Perinatal Grief Scale (PGS) (first 48 h, 1 week, 1 month and 3 months after the loss) were recorded.Results: Active grief scores were lower (p ranged  < .05 to <.01), while difficulty coping (p < .05 for each) and despair (p < .05 for each) scores were higher in the 3rd month as compared with prior assessments. All PGS scores at the 48 h and 3rd month assessments were significantly higher in assisted and planned pregnancies (p < .01 for each). Maternal age was positively correlated with 48 h active grief (r = 0.19, p < .001), despair (r = 0.13, p < .05) and total PGS (r = 0.13, p < .05) scores. Parity and the number of children were negatively correlated (r ranged from -0.35 to -0.20, p < .01 for each) with all PGS scores.Conclusion: Our findings revealed decrease in active grief levels, whereas gradual increase in difficulty coping and despair in women with pregnancy loss within the first 3 months of losing a child. Our finding indicate association of older maternal age, primiparity, assisted and planned pregnancies with regular antenatal follow up with higher total PGS scores as well as active grief, difficulty coping and despair scores in women regardless of the time of assessment within 3 months after the pregnancy loss.

Kouo, T., K. Kleinman, H. Fujii-Rios, O. Badaki-Makun, J. Kim, L. Falco and T. L. Canares (2020). "A Resident-Led QI Initiative to Improve Pediatric Emergency Department Boarding Times." Pediatrics.Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland; tkouo1@jhmi.edu.

Divisions of Pediatric Emergency Medicine and.

Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland.

Department of Emergency Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; and.

General Pediatrics and Adolescent Medicine.

Department of Emergency Medicine, Phoenix Children's Hospital, Phoenix, Arizona.

              BACKGROUND: Pediatric emergency department (PED) overcrowding and prolonged boarding times (admission order to PED departure) decrease quality of care. Timely transfer of patients from the PED to inpatient units is a key driver that relieves overcrowding. In 2015, PED boarding time at our hospital was 10% longer than the national benchmark. We described a resident-led quality-improvement initiative to decrease PED mean boarding times by 10% (from 173 to 156 minutes) within 6 months among general pediatric admissions. METHODS: We applied Plan-Do-Study-Act (PDSA) methodology. PDSA 1 (October 2016) interventions were bundled to include streamlined mobile communications, biweekly educational presentations, and reminder signs. PDSA 2 (August 2017) provided alternative workflows for senior residents. Outcomes were mean PED boarding times for general pediatrics admissions. The proportion of PICU transfers within 12 hours of admission served as a balancing measure. Statistical process control charts were used to analyze boarding times and PICU transfer rates. RESULTS: Leading up to PDSA 1, monthly mean boarding times decreased from 173 to 145 minutes and were sustained throughout the study period and up to 1 year after study completion. The X-bar chart demonstrated a shift with 57 consecutive months of mean boarding times below the preintervention mean. There were no changes in PICU transfer rates within 12 hours of admission. CONCULSIONS: Resident-led quality improvement efforts, including education and streamlined workflow, significantly improved PED boarding time without causing harm to patients.

Kyc, S. J., C. J. Bruno, V. Shabanova and A. M. Montgomery (2020). "Perceptions of Neonatal Palliative Care: Similarities and Differences between Medical and Nursing Staff in a Level IV Neonatal Intensive Care Unit." J Palliat Med 23(5): 662-669.Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut, USA.

Department of Pediatrics, Yale University School of Public Health, New Haven, Connecticut, USA.

              Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort. Objective: To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives. Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%. Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions. Results: Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics. Conclusions: Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers.

Lange, A. V., A. Rueschhoff, S. Terauchi, L. Cohen, J. Reisch, R. Jain and J. D. Finklea (2020). "End-of-Life Care in Cystic Fibrosis: Comparing Provider Practices Based on Lung Transplant Candidacy." J Palliat Med.Department of Internal Medicine, University of Texas Southwestern, Dallas, Texas, USA.

Division of Palliative Care Medicine, University of Texas Southwestern, Dallas, Texas, USA.

Division of Pulmonary and Critical Care Medicine, University of Texas Southwestern, Dallas, Texas, USA.

Department of Population and Data Science, University of Texas Southwestern, Dallas, Texas, USA.

              Background: The optimal timing to introduce palliative care (PC) and end-of-life (EOL) conversations into the lives of people with cystic fibrosis (CF) has not been established. Objective: Compare EOL care practices for people with CF who died without a lung transplant (LT), are living without an LT, and those who received an LT. Design: Retrospective chart review. Setting/Subjects: People with CF who received care from 2012 to 2017 at the University of Texas Southwestern Medical Center. Measurements: Primary outcomes were (1) EOL discussion with a pulmonologist, (2) time of EOL discussion before death or LT, (3) evaluation by PC, and (4) documentation of advanced directive or medical power of attorney. Results: Twenty-three patients died without LT, 40 patients received an LT, and 222 were living without an LT. Among LT recipients, 10% had EOL conversations compared with 74% of deceased patients and 5% of living patients without LT (p = 0.001). Among deceased patients, 39% had EOL conversations more than six months before death, while 5% of transplanted patients had EOL conversation more than six months before LT (p < 0.001). Deceased patients were more likely to have seen PC (57%) than either patients who received LT (2%) or those living without LT (3%, p = 0.0001). Conclusions: Patients who died without LT were more likely to have seen PC and had an EOL conversation than patients who received LT or who are living without LT. Further research should explore the optimal timing to discuss EOL care and the best timing to involve PC.

László, K. D., S. Johansson, M. Miao, J. Li, J. Olsen, W. Yuan and S. Cnattingius (2020). "Maternal Bereavement the Year Before or During Pregnancy and Total and Cause-Specific Infant Mortality: A Cohort Study from Denmark and Sweden." Psychosom Med.From the Department of Global Public Health, Karolinska Institutet, Stockholm, Sweden (László), Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska University Hospital and Karolinska Institutet, Stockholm, Sweden (Johansson, Cnattingius), NHC Key Laboratory of Reproduction Regulation, Shanghai Institute of Planned Parenthood Research, Fudan University, Shanghai, China (Miao, Yuan); and Department of Clinical Epidemiology, Aarhus University, Aarhus, Denmark (Li, Olsen).

              OBJECTIVE: We analyzed associations between maternal bereavement the year before or during pregnancy and total and cause-specific infant mortality (IM). METHODS: We studied live singleton births from the Danish (1978-2008) and Swedish Medical Birth Registers (1973-2006) (N=5,114,246). Information on maternal sociodemographic, pregnancy- and health-related factors and death of family members were obtained from nationwide registers. RESULTS: Among children of mothers with register links to family members and without the considered IM risk factors, 110,993 (2.76%) were exposed and 15,199 (0.4%) died in infancy. Death of an older child the year before or during pregnancy was associated with an increased IM risk [adjusted odds ratio (aOR), 95% confidence intervals (CI): 2.05 (1.44-2.92)]. Losing an older child the year before pregnancy or during pregnancy were associated with risks of prematurity-related IM [aOR (95% CI): 2.61 (1.44-4.72) and 3.08 (1.70-5.57)], and with infant death in term born children due to other causes than sudden infant death syndrome (SIDS), congenital malformations or asphyxia [aOR (95% CI): 3.31 (1.58-6.96) and 5.10 (1.27-20.43)]. Losing an older child during pregnancy was also associated with increased risks of SIDS [aOR (95% CI): 5.41 (1.34-21.83)]. Death of a partner during pregnancy was associated with IM [aOR 1.83 (1.01-3.32)]. The number of events were small and CIs wide in some sub-analyses and caution is needed when interpreting our results. CONCLUSIONS: Severe prenatal stress may increase the risk of several types of IM. Whether less severe, but more common maternal stressors shortly before or during pregnancy also increase IM risk warrants further investigation.

Leahy-Warren, P., C. Coleman, R. Bradley and H. Mulcahy (2020). "The experiences of mothers with preterm infants within the first-year post discharge from NICU: social support, attachment and level of depressive symptoms." BMC Pregnancy Childbirth 20(1): 260.School of Nursing and Midwifery, University College Cork, Brookfield Health Sciences Complex, College Road, Cork, T12 AK54, Ireland. Patricia.Leahy@ucc.ie.

School of Nursing and Midwifery, University College Cork, Brookfield Health Sciences Complex, College Road, Cork, T12 AK54, Ireland.

              BACKGROUND: The estimated global premature birth rate for 2014 was 10.6%, equating to an estimate of 14.84 million live premature births. The experience of premature birth does not impact solely on the infant and mother as individuals but occurs in the context of a critical point in time when they are developing a relationship with one another. The aim of this study was to investigate the relationships between social support, mother to infant attachment, and depressive symptoms of mothers with preterm infants within the first 12 months' post discharge from the Neonatal Intensive Care Unit (NICU). METHODS: A correlational cross-sectional study design was used. Data were collected using a four-part online survey which included the Perinatal Social Support Questionnaire (PICSS), Maternal Postnatal Attachment Scale (MPAS) and the Edinburgh Postnatal Depression Scale (EPDS) with mothers of preterm infants (n = 140). RESULTS: The prevalence of postnatal depression was 37.9% (95% CI: 29.8 to 46.4%). In univariable analyses, history of depression (p = 0.005), aged 35-39 years (p = 0.006), no formal social support (p = 0.040), less informal social supports (p = 0.018), lower overall maternal attachment (p < 0.001) and lower overall functional social support (p < 0.001) were significantly associated with a higher level of depressive symptoms. Lower scores on two of the maternal attachment subscales (quality of attachment and absence of hostility) and all four of the functional social support subscales were significantly associated with a higher level of depressive symptoms (p < 0.001 for all). In the multivariable analysis, prior history of depression (p = 0.028), lower score of maternal attachment (p < 0.001) and lower emotional functional social support (p = 0.030) were significantly associated with a higher level of depressive symptoms. CONCLUSION: Women who experience a premature birth, have a prior history of depression, poor infant attachment and poor emotional social support have a higher level of depressive symptoms. Results emphasise the need for professionals to encourage mobilisation of maternal formal and informal social supports. It is important to intervene early to address maternal emotional well-being and enhance the developing mother-preterm infant relationship.

Lee, J., G. B. Kim, M. K. Song, S. Y. Lee, M. S. Kim and E. J. Bae (2020). "End-of-Life Care of Hospitalized Children with Advanced Heart Disease." J Korean Med Sci 35(16): e107.Department of Pediatrics, Seoul National University Children's Hospital, Seoul National University School of Medicine, Seoul, Korea.

Department of Pediatrics, Seoul National University Children's Hospital, Seoul National University School of Medicine, Seoul, Korea. ped9526@snu.ac.kr.

              BACKGROUND: Despite improvements in palliative care for critically ill children, the characteristics of end-of-life care for pediatric patients with advanced heart disease are not well-known. We investigated these characteristics among hospitalized children with advanced heart disease in a tertiary referral center in Korea. METHODS: We retrospectively reviewed the records of 136 patients with advanced heart disease who died in our pediatric department from January 2006 through December 2013. RESULTS: The median age of patients at death was 10.0 months (range 1 day-28.3 years). The median duration of the final hospitalization was 16.5 days (range 1-690 days). Most patients (94.1%) died in the intensive care unit and had received mechanical ventilation (89.7%) and inotropic agents (91.2%) within 24 hours of death. The parents of 74 patients (54.4%) had an end-of-life care discussion with their physician, and the length of stay of these patients in the intensive care unit and in hospital was longer. Of the 90 patients who had been hospitalized for 7 days or more, the parents of 54 patients (60%) had a documented end-of-life care discussion. The time interval from the end-of-life care discussion to death was 3 days or less for 25 patients. CONCLUSION: Children dying of advanced heart disease receive intensive treatment at the end of life. Discussions regarding end-of-life issues are often postponed until immediately prior to death. A pediatric palliative care program must be implemented to improve the quality of death in pediatric patients with heart disease.

Leeb, R. T., R. A. Cree, L. Aird, R. L. DeBiasi, R. W. Driggers, E. Garbarczyk, L. M. Mofenson, S. Needle, J. Rodriguez, C. Curry, F. García, S. Godfred-Cato, D. Hawks, E. Rosenblum, E. Dziuban and M. Hudak (2020). "A Framework for Coordination between Obstetric and Pediatric Providers in Public Health Emergencies: Lessons Learned from the Zika Outbreak in the United States, 2015 to 2017." Am J Perinatol.National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.

Emerging Threats and Disaster Management, Pediatric Population Health, Department of Healthy Resilient Children, Youth and Families, American Academy of Pediatrics, Itasca, Illinois.

Division of Pediatric Infectious Diseases, Children's National Hospital/Children's National Research Institute, Immunology and Tropical Medicine, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia.

Johns Hopkins University School of Medicine, Sibley Memorial Hospital, Johns Hopkins Medicine, Washington, District of Columbia.

Division of State Coverage Programs, Center for Medicaid & CHIP Services, Centers for Medicare and Medicaid Services, Baltimore, Maryland.

Elizabeth Glaser Pediatric AIDS Foundation, Washington, District of Columbia.

Elica Health Centers, Sacramento, California.

National Association of Pediatric Nurse Practitioners, New York, New York.

Emory University Nell Hodgson Woodruff School of Nursing, Atlanta, Georgia.

University of Miami, Miller School of Medicine, Miami, Florida.

Community and Heath Services, Pima County, Tucson, Arizona.

Practice Activities, Obstetrics and Immunization, American College of Obstetricians and Gynecologists, Washington, District of Columbia.

Department of Family Medicine & Public Health, Universtiy of California San Diego, San Diego, California.

Center for Global Health, Centers for Disease Prevention and Control, Windhoek, Namibia.

Department of Pediatrics, University of Florida College of Medicine-Jacksonville, Jacksonville, Florida.

              Emergency response to emerging threats with the potential for vertical transmission, such as the 2015 to 2017 response to Zika virus, presents unique clinical challenges that underscore the need for better communication and care coordination between obstetric and pediatric providers to promote optimal health for women and infants. Published guidelines for routine maternal-infant care during the perinatal period, and models for transitions of care in various health care settings are available, but no broad framework has addressed coordinated multidisciplinary care of the maternal-infant dyad during emergency response. We present a novel framework and strategies to improve care coordination and communication during an emergency response. The proposed framework includes (1) identification and collection of critical information to inform care, (2) key health care touchpoints for the maternal-infant dyad, and (3) primary pathways of communication and modes of transfer across touchpoints, as well as practical strategies. This framework and associated strategies can be modified to address the care coordination needs of pregnant women and their infants with possible exposure to other emerging infectious and noninfectious congenital threats that may require long-term, multidisciplinary management. KEY POINTS: · Emerging congential threats present unique coordination challenges for obstetric and pediatric clinicians during emergency response.. · We present a framework to help coodinate care of pregnant women/infants exposed to congenital threats.. · The framework identifies critical information to inform care, health care touchpoints, and communication/information transfer pathways..

Leland, B. D. and L. D. Wocial (2020). "50 Years Ago in TheJournalofPediatrics: Residents Still Struggle When Children Die." J Pediatr 220: 138.Division of Pediatric Critical Care Medicine, Indiana University School of Medicine, Riley Hospital for Children at Indiana University Health.

Charles Warren Fairbanks Center for Medical Ethics at Indiana University Health, Indianapolis, Indiana.

Lelkes, E., A. Patel, A. Joong and J. G. Gossett (2020). "Should Decision Making Be Shared in High-Risk Pediatric Heart Donation?" AMA J Ethics 22(5): E401-407.Pediatric intensive care unit physician and palliative care specialist at the UCSF Benioff Children's Hospital San Francisco in California.

Pediatric and fetal cardiologist at the Ann and Robert H. Lurie Children's Hospital of Chicago in Illinois.

Pediatric heart failure and transplant physician at the Ann and Robert H. Lurie Children's Hospital of Chicago in Illinois.

Medical director of pediatric heart failure, mechanical circulatory support, and heart transplantation services at the UCSF Benioff Children's Hospital San Francisco in California.

              This article considers complexities of shared decision making in pediatric heart transplantation and suggests that decisions about pediatric heart transplantation should be shared between a clinical team and parents. This article also considers goals of shared decision making involving Public Health Service increased-risk donors and recommends policy changes to strengthen decision sharing.

Lemos, A., H. Soares and H. Guimarães (2020). "Decision-making at the limit of viability: an overview." Minerva Pediatr.Faculty of Medicine, University of Porto, Porto, Portugal - anamolemos@hotmail.com.

Faculty of Medicine, University of Porto, Porto, Portugal.

Neonatal Intensive Care Unit, Department of Pediatrics, Centro Hospitalar e Universitário de São João, Porto, Portugal.

Cardiovascular R&amp;D Unit of Faculty of Medicine, University of Porto, Porto, Portugal.

              Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit of viability. There are several interventions that can be applied before and after birth to increase the baby's survival with the least sequelae possible, but different countries make different recommendations on the gestational age that each treatment should be given. There is more consensus on the extremities of viability, being that, at the lower extremity, comfort care is preferred and active care in newborns with higher gestational age. The higher the gestational age at birth, the higher the survival and survival without morbidity rates. At all gestational ages, it is important to take into account the suffering of these babies and to provide them the best quality of life possible. Sometimes palliative care is the best therapeutic approach. The parents of these babies should be included in the decision-making process, if they wish, always respecting their needs and wishes. Nevertheless, the process of having such an immature child can be very painful for parents, so it is also important to take into account their suffering and provide them with all the necessary support. This support should be maintained even after the death of the newborn.

Linder, L. A., A. R. Newman, K. Stegenga, Y. S. Chiu, S. E. Wawrzynski, H. Kramer, C. Weir, S. Narus and R. Altizer (2020). "Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents." Support Care Cancer.College of Nursing, University of Utah, Salt Lake City, UT, USA. lauri.linder@nurs.utah.edu.

Center for Cancer and Blood Disorders, Primary Children's Hospital, Salt Lake City, UT, USA. lauri.linder@nurs.utah.edu.

College of Nursing, Marquette University, Milwaukee, WI, USA.

Children's Hospital Wisconsin, Milwaukee, WI, USA.

Children's Mercy Hospital, Kansas City, MO, USA.

College of Nursing, University of Utah, Salt Lake City, UT, USA.

Pediatric Critical Care Services, Primary Children's Hospital, Salt Lake City, UT, USA.

Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.

Medical Informatics, Intermountain Healthcare, Salt Lake City, UT, USA.

Population Health Sciences, Entertainment Arts & Engineering, University of Utah, Salt Lake City, UT, USA.

              BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.

Littlemore, J. and S. Turner (2020). "Metaphors in communication about pregnancy loss." Metaphor and the Social World 10(1): 45-75.[Littlemore, Jeannette] Univ Birmingham, Appl Linguist, Birmingham, W Midlands, England. [Turner, Sarah] Coventry Univ, Stylist, Coventry, W Midlands, England.

Littlemore, J (reprint author), Univ Birmingham, Dept English Language & Appl Linguist, 3 Elms Rd, Birmingham B15 2TT, W Midlands, England. j.m.littlemore@bham.ac.uk

              Pregnancy loss, encompassing miscarriage, stillbirth and termination for foetal abnormality, can be considered a particularly intense and unique form of bereavement, which engenders difficult or painful emotions. When people are talking about such emotions, they have been found to make extensive use of metaphor (Semino, 2011). In this paper, we use metaphor analysis of a small corpus of interviews with individuals in England who have suffered such losses, and people who support them, to explore the nature of the bereavement. In particular, we focus on the ways in which metaphor is used to describe the experience of the loss, the effects that this loss has on people's conceptions of themselves and their bodies, and the implications this has for recovery. We identify a number of characteristics that can lead the bereaved to conceptualise their realities in different ways, which have implications for the grieving process, the ways in which people respond to their grief, and ultimately their recovery.

Lotstein, D. S. (2020). "Concurrent care isn't enough: More hospice reforms are needed for children with serious illness." J Pediatr.Department of Anesthesia Critical Care Medicine, Division of Comfort and Palliative Care, Children's Hospital Los Angeles, Los Angeles, CA; Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles, CA. Electronic address: dlotstein@chla.usc.edu.

MacGregor, R. M., R. M. Antiel, T. Najaf, A. S. Said, B. W. Warner, M. V. Raval and B. Shakhsheer (2020). "Extracorporeal Membrane Oxygenation for Pediatric Patients With Coronavirus Disease 2019-Related Illness." Pediatr Crit Care Med.Division of Pediatric Surgery, Department of Surgery, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, MO.

Division of Neonatology, Department of Pediatrics, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, MO.

Division of Pediatric Critical Care, Department of Pediatrics, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, MO.

Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.

              OBJECTIVE: To describe current hospital guidelines and the opinions of extracorporeal membrane oxygenation leaders at U.S. children's hospitals concerning the use of extracorporeal membrane oxygenation for coronavirus disease 2019-positive pediatric patients. DESIGN: Confidential, self-administered questionnaire. SETTING: One hundred twenty-seven U.S. pediatric extracorporeal membrane oxygenation centers. SUBJECTS: Extracorporeal membrane oxygenation center program directors and coordinators. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: In March 2020, a survey was sent to 127 pediatric extracorporeal membrane oxygenation centers asking them to report their current hospital extracorporeal membrane oxygenation guidelines for coronavirus disease 2019-positive patients. Respondents were also asked their opinion on three ethical dilemmas including: prioritization of children over adults for extracorporeal membrane oxygenation use, institution of do-not-resuscitate orders, and the use of extracorporeal cardiopulmonary resuscitation for coronavirus disease 2019-positive patients. Forty-seven extracorporeal membrane oxygenation centers had enacted guidelines including 46 (100%) that offer venovenous-extracorporeal membrane oxygenation and 42 (89%) that offer venoarterial-extracorporeal membrane oxygenation for coronavirus disease 2019-positive pediatric patients. Forty-four centers (94%) stated that the indications for extracorporeal membrane oxygenation candidacy in coronavirus disease 2019 disease were similar to those used in other viral illnesses, such as respiratory syncytial virus or influenza. Most program directors (98%) did not endorse that children hospitalized with coronavirus disease 2019 should be made do-not-resuscitate and had variable opinions on whether children should be given higher priority over adults when rationing extracorporeal membrane oxygenation. Over half of program directors (60%) did not support the use of extracorporeal cardiopulmonary resuscitation for coronavirus disease 2019. CONCLUSIONS: The majority of pediatric extracorporeal membrane oxygenation centers have proactively established guidelines for the use of extracorporeal membrane oxygenation for coronavirus disease 2019-related illnesses. Further work is needed to help guide the fair allocation of extracorporeal membrane oxygenation resources and to determine the appropriateness of extracorporeal cardiopulmonary resuscitation.

Mactier, H., S. E. Bates, T. Johnston, C. Lee-Davey, N. Marlow, K. Mulley, L. K. Smith, M. To and D. Wilkinson (2020). "Perinatal management of extreme preterm birth before 27 weeks of gestation: a framework for practice." Arch Dis Child Fetal Neonatal Ed 105(3): 232-239.Neonatology, Princess Royal Maternity, Glasgow, UK Helen.Mactier@glasgow.ac.uk.

Women and Children's, Great Western Hospitals NHS Foundation Trust, Swindon, UK.

Department of Fetal and Maternal Medicine, Birmingham Women and Children's NHS Foundation Trust, Birmingham, UK.

Bliss, London, UK.

Institute for Women's Health, University College London, London, UK.

Sands, London, UK.

Health Sciences, University of Leicester, Leicester, UK.

King's College Hospital NHS Trust, London, UK.

Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK.

Majmudar, I. K., L. Engel, F. Muscara, C. Stevenson, M. McCarthy, V. Anderson and C. Mihalopoulos (2020). "Exploring health state utility values of parents of children with a serious illness." Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation.Majmudar, Ishani K.

              AbstractPurposeIn cost-utility analysis, outcomes are usually measured in terms of quality-adjusted life years, where length of life is adjusted by levels of health-related quality of life (HRQoL) using a single value, known as a health state utility value (HSUV). This study explores the HSUVs of parents of children with a serious illness admitted within three hospital departments (cardiology, oncology and paediatric intensive care) across four time points, compares HSUVs with Australian population norms and examines predictors of parental HSUVs.MethodsData were obtained from the Take a Breath study, where parental HSUVs were measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Descriptive statistics and t-tests compared the AQoL-8D scores with population norms, while repeated measures ANOVA was used to compare parental HSUVs of children treated across illness groups over time. Regression analysis was performed to determine predictors of parental HSUVs.ResultsParental HSUVs were not significantly different from the general Australian population norms (p = 0.939), as measured by the AQoL-8D. However, statistically significant differences were observed in the psychosocial super-dimension (p < 0.01) and in all eight AQoL-8D dimensions, except for senses and self-worth. No significant differences were observed across illness groups. Parental HSUVs were associated with psychosocial risk factors of trait anxiety (p < 0.001), depression (p < 0.001) and family beliefs (p = 0.024).ConclusionHaving a child with a severe illness has an impact on the psychosocial aspects of parental HRQoL regardless of the type of illness. Psychosocial health factors of trait anxiety, depression and family beliefs were important predictors of parental HSUV. (PsycInfo Database Record (c) 2020 APA, all rights reserved)

Maldonado, S. (2020). "I Am the Nurse." Nurs Womens Health

              A nurse explores the unique grief of losing a child.

Manning, J. C., J. M. Latour, M. A. Q. Curley, E. S. Draper, T. Jilani, P. R. Quinlan, R. S. Watson, J. E. Rennick, G. Colville, N. Pinto, A. Latif, E. Popejoy and J. Coad (2020). "Study protocol for a multicentre longitudinal mixed methods study to explore the Outcomes of ChildrEn and fAmilies in the first year after paediatric Intensive Care: the OCEANIC study." BMJ Open 10(5): e038974.Children and Young People Health Research, School of Health Sciences, University of Nottingham, Nottingham, Nottinghamshire, UK joseph.manning@nottingham.ac.uk.

Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, Nottinghamshire, UK.

Health Data Research UK, University of Nottingham, Nottingham, Nottinghamshire, UK.

School of Nursing and Midwifery, University of Plymouth, Plymouth, UK.

Nursing Department, Hunan Children's Hospital, Changsha, Hunan, China.

Department of Family and Community Health, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Anesthesia and Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

The Research Institute, Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Department of Health Sciences, University of Leicester, Leicester, Leicestershire, UK.

Advanced Data Analysis Centre, University of Nottingham, Nottingham, Nottinghamshire, UK.

Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington, Seattle, Washington, USA.

Centre for Child Health, Behaviour, and Development, Seattle Children's Research Institute, Seattle, Washington, USA.

Ingram School of Nursing, McGill University Faculty of Medicine, Montreal, Quebec, Canada.

Centre for Outcomes Research & Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

Paediatric Psychology Service, St Georges University Hospitals NHS Foundation Trust, London, UK.

Population Health Research Institute, University of London St George's, London, UK.

Section of Pediatric Critical Care, Department of Pediatrics, University of Chicago, Chicago, Illinois, USA.

School of Health Sciences, University of Nottingham, Nottingham, Nottinghamshire, UK.

Children and Young People Health Research, School of Health Sciences, University of Nottingham, Nottingham, Nottinghamshire, UK.

              INTRODUCTION: Annually in the UK, 20 000 children become very ill or injured and need specialist care within a paediatric intensive care unit (PICU). Most children survive. However, some children and their families may experience problems after they have left the PICU including physical, functional and/or emotional problems. It is unknown which children and families experience such problems, when these occur or what causes them. The aim of this mixed-method longitudinal cohort study is to understand the physical, functional, emotional and social impact of children surviving PICU (aged: 1 month-17 years), their parents and siblings, during the first year after a PICU admission. METHODS AND ANALYSIS: A quantitative study involving 300 child survivors of PICU; 300 parents; and 150-300 siblings will collect data (using self-completion questionnaires) at baseline, PICU discharge, 1, 3, 6 and 12 months post-PICU discharge. Questionnaires will comprise validated and reliable instruments. Demographic data, PICU admission and treatment data, health-related quality of life, functional status, strengths and difficulties behaviour and post-traumatic stress symptoms will be collected from the child. Parent and sibling data will be collected on the impact of paediatric health conditions on the family's functioning capabilities, levels of anxiety and social impact of the child's PICU admission. Data will be analysed using descriptive and inferential statistics. Concurrently, an embedded qualitative study involving semistructured interviews with 24 enrolled families at 3 months and 9 months post-PICU discharge will be undertaken. Framework analysis will be used to analyse the qualitative data. ETHICS AND DISSEMINATION: The study has received ethical approval from the National Health Services Research Ethics Committee (Ref: 19/WM/0290) and full governance clearance. This will be the first UK study to comprehensively investigate physical, functional, emotional and social consequences of PICU survival in the first-year postdischarge.Clinical Trials Registration Number: ISRCTN28072812 [Pre-results].

McCauley, C. J., J. A. Miles, B. W. Frush, G. L. Beck Dallaghan, S. Aliaga, M. Ferris and R. Hobbs (2020). "Reflections of an Integrated Maternal-Child Health Medical Student Assignment." Matern Child Health J 24(6): 679-686.University of North Carolina School of Medicine, Chapel Hill, NC, USA.

Medicine-Pediatrics Residency Program, Vanderbilt University, Nashville, TN, USA.

Office of Medical Education, University of North Carolina School of Medicine, 108 Taylor Hall, CB 7321, Chapel Hill, NC, 27599, USA. gary_beck_dallaghan@med.unc.edu.

Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, NC, USA.

              INTRODUCTION: Clinical experiences expose learners to the patient perspective, which can have a lasting impact on students' professional identity. However, in busy clinical settings where opportunities for reflection may be limited, listening to patients' stories is often neglected. We used a reflection assignment to augment a new maternal-child health integrated curriculum. METHODS: Medical students completed a brief assignment from their session in the neonatal intensive care unit (NICU), which included reflective writing, between fall 2016 and summer 2017. The Depth of Reflection rubric was used to score reflections on a scale: "Knowledge and Comprehension" (Level I), "Analysis" (Level II), and "Synthesis and Evaluation" (Level III). A constant comparison method based on grounded theory elicited prenatal and postnatal themes from medical students' reflective writing. RESULTS: All students completed narratives (n = 166); 70% (n = 116) achieved a Depth of Reflection of Level II or III. Six overarching themes emerged: (1) Conception, Pregnancy, and Delivery Experiences; (2) Positive Support Structures; (3) Barriers and Stressors to Care; (4) Future Plans; (5) Unexpected Complications; and (6) Student Career and Professional Considerations. DISCUSSION: Reflections from a novel and brief integrated maternal-child health experience demonstrated high levels on the Depth of Reflection scale. This experience exposed students to core themes central to a family's pregnancy and perinatal experience. Professional identity formation also emerged as a theme. Reflective writing assignments in a busy NICU can facilitate exploration of medical students' knowledge of maternal-child health patient experiences.

McNair, C., N. Chinian, V. Shah, M. McAllister, L. S. Franck, B. Stevens, L. Burry and A. Taddio (2020). "Metasynthesis of Factors That Influence Parents' Participation in Pain Management for Their Infants in the NICU." J Obstet Gynecol Neonatal Nurs 49(3): 263-271

              OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles published from 1976 through November 2019 using MeSH terminology in the following databases: MEDLINE, CINAHL Plus, EMBASE, PubMed, PsycINFO, Cochrane, Scopus, and Web of Science. All qualitative studies in which researchers explored parental participation and education in the NICU were included. STUDY SELECTION: A total of 29,937 articles were returned. Once we removed duplicates and limited results to qualitative studies, 48 articles remained. We excluded 41 articles because the studies reported were not conducted in NICUs, involved neonatal palliative care, or were review or opinion articles. We included seven articles for review. DATA EXTRACTION: Two authors reviewed all articles using the Critical Appraisal Skills Programme tool to assess study quality and independently scored each study. We reviewed and extracted authors, publication date, type of study, sample size, results, themes, and quotes and included these data elements in the analysis. DATA SYNTHESIS: We used a thematic synthesis technique to review the qualitative data, entered codes into NVivo software, and compared codes to create descriptive themes. From these descriptive themes, we generated four analytic themes: Learning to Parent a Hospitalized Infant, Stress and Anxiety, Health Care Providers as Gatekeepers, and NICU Environment. CONCLUSION: The four themes identified in this qualitative metasynthesis represent the factors that affect parents' abilities to participate in their infants' pain management. Further research is recommended to develop interventions that address these factors to optimize parents' participation in pain management for their infants during procedures in the NICU.

McNeil, M. J., E. Namisango, J. Hunt, R. A. Powell and J. N. Baker (2020). "Grief and Bereavement in Parents After the Death of a Child in Low- and Middle-Income Countries." Children (Basel) 7(5).University of Tennessee Health Science Center, Department of Hospice and Palliative Medicine, Memphis, TN 38103, USA.

St. Jude Children's Research Hospital, Division of Quality of Life and Palliative Care, Department of Oncology, Memphis, TN 38105, USA.

African Palliative Care Association, Kampala, P. O. Box 72518, Uganda.

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, WC2R 2LS, UK.

Avondale, P.O. Box A222 Harare, Zimbabwe.

MWAPO Health Development Group, Nairobi 00100, Kenya.

              While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.

Medeiros, C., L. Buckley, K. Metcalfe, U. G. Narayanan and K. Widger (2020). "Decision aids available for parents making end-of-life or palliative care decisions for children: A scoping review." J Paediatr Child Health 56(5): 692-703.Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.

Paediatric Intensive Care Unit, The Hospital for Sick Children, Toronto, Ontario, Canada.

Familial Breast Cancer Research Institute, Women's College Research Institute, Toronto, Ontario, Canada.

Department of Orthopaedic Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada.

Department of Surgery, University of Toronto, Toronto, Ontario, Canada.

Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.

Paediatric Advanced Care Team, The Hospital for Sick Children, Toronto, Ontario, Canada.

              AIM: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. METHODS: Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria. RESULTS: After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points. CONCLUSIONS: There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families.

Menon, A. P., Y. H. Mok, L. E. Loh and J. H. Lee (2020). "Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives." J Pediatr Intensive Care 9(2): 99-105.Children's Intensive Care Unit, Department of Pediatric Subspecialties, KK Women's and Children's Hospital, Singapore, Singapore.

Children's Hospital Emergency Transport Service, KK Women's and Children's Hospital, Singapore, Singapore.

              The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their child's transport experience. Over the study period, eight patients were transported from our pediatric ICU to their homes or hospice facilities. There were no intratransport adverse events. Parents who participated in the survey responded positively to the transport experience. The availability of a dedicated critical care transport service allowed for palliative transfers to be performed safely. Facilitating transport to allow withdrawal of life support at home is an acceptable option to families as part of holistic end-of-life care.

Miri, K. P., L. Osnat, S. Varda, B. Haya, A. L. Shanee, M. M. Ayala and S. Tzipora (2020). "Maternal self-efficacy mediates the association between spousal support and stress among mothers of NICU hospitalized preterm babies." Early Hum Dev 146: 105077.School of Social Work, Ariel University, Ariel 40700, Israel. Electronic address: mirikp@ariel.ac.il.

School of Social Work, Ariel University, Ariel 40700, Israel.

Department of Neonatology, Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan 52621, Israel. Electronic address: vardast@sheba.health.gov.il.

Department of Neonatology, Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan 52621, Israel. Electronic address: haya.bendett@sheba.health.gov.il.

Department of Neonatology, Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan 52621, Israel. Electronic address: shanee.alhalel@sheba.health.gov.il.

Department of Neonatology, Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan 52621, Israel. Electronic address: ayala.maayan@sheba.health.gov.il.

Department of Neonatology, Safra Children's Hospital, Sheba Medical Center, Tel Hashomer, Ramat Gan 52621, Israel. Electronic address: zipora.strauss@sheba.health.gov.il.

              The mediating effect of maternal self-efficacy on the association between spousal support and stress, among mothers of hospitalized babies in the Neonatal Intensive Care Unit (NICU) is examined. Findings confirmed partial mediation effect implying that professionals may contribute to the reduction of stress levels among preterm mothers.

Morray, B. H., B. M. Gordon, M. A. Crystal, B. H. Goldstein, A. M. Qureshi, A. J. Torres, S. M. Epstein, I. Crittendon, F. F. Ing and S. K. Sathanandam (2020). "Resource Allocation and Decision Making for Pediatric and Congenital Cardiac Catheterization During the Novel Coronavirus SARS-CoV-2 (COVID-19) Pandemic: A U.S. Multi-Institutional Perspective." J Invasive Cardiol 32(5): E103-e109.Le Bonheur Children's Hospital, 848 Adams Avenue, Memphis, TN 38103 USA. shyam@uthsc.edu.

              BACKGROUND: The novel coronavirus (COVID-19) pandemic has placed severe stress on healthcare systems around the world. There is limited information on current practices in pediatric cardiac catheterization laboratories in the United States (US). OBJECTIVES: To describe current practice patterns and make recommendations regarding potential resource allocation for congenital cardiac catheterization during the COVID-19 pandemic. METHODS: A web-based survey was distributed regarding case candidacy and catheterization laboratory preparedness. Centers were categorized based on the current degree of disease burden in that community (as of April 1, 2020). Data and consensus opinion were utilized to develop recommendations. RESULTS: Respondents belonged to 56 unique US centers, with 27 (48.2%) located in counties with a high number of COVID-19 cases. All centers have canceled elective procedures. There was relative uniformity (>88% agreement) among centers as to which procedures were considered elective. To date, only three centers have performed a catheterization on a confirmed COVID-19 positive patient. Centers located in areas with a higher number of COVID-9 cases have been more involved in a simulation of donning and doffing personal protective equipment (PPE) than low-prevalence centers (46.7% vs 10.3%, respectively; P<.001). Currently, only a small fraction of operators has been reassigned to provide clinical services outside their scope of practice. CONCLUSIONS: At this stage in the COVID-19 pandemic, pediatric/congenital catheterization laboratories have dramatically reduced case volumes. This document serves to define current patterns and provides guidance and recommendations on the preservation and repurposing of resources to help pediatric cardiac programs develop strategies for patient care during this unprecedented crisis.

Moullet, C., E. Schmutz, J. Laure Depeyre, M. H. Perez, J. Cotting and C. Jotterand Chaparro (2020). "Physicians' perceptions about managing enteral nutrition and the implementation of tools to assist in nutritional decision-making in a paediatric intensive care unit." Aust Crit Care 33(3): 219-227.Department of Nutrition and Dietetics, Geneva School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Rue des Caroubiers 25, 1227 Carouge, Geneva, Switzerland. Electronic address: clemence.moullet@hesge.ch.

HES-SO Master, University of Applied Sciences and Arts Western Switzerland, Avenue de Provence 6, 1007 Lausanne, University of Lausanne, Switzerland. Electronic address: elodie.schmutz@chuv.ch.

Department of Nutrition and Dietetics, Geneva School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Rue des Caroubiers 25, 1227 Carouge, Geneva, Switzerland. Electronic address: jocelyne.depeyre@hesge.ch.

Pediatric Intensive Care Unit, Lausanne University Hospital (CHUV/UNIL), Rue Du Bugnon 46, 1011 Lausanne, Switzerland. Electronic address: marie-helene.perez@chuv.ch.

Pediatric Intensive Care Unit, Lausanne University Hospital (CHUV/UNIL), Rue Du Bugnon 46, 1011 Lausanne, Switzerland. Electronic address: jacques.cotting@chuv.ch.

Department of Nutrition and Dietetics, Geneva School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Rue des Caroubiers 25, 1227 Carouge, Geneva, Switzerland. Electronic address: corinne.jotterand@hesge.ch.

              BACKGROUND: For critically ill children hospitalised in paediatric intensive care units, adequate nutrition reduces their risk of morbidity and mortality. Barriers may impede optimal nutritional support in this population. Moreover, physicians are usually responsible for prescribing nutrition, although they are not experts. Therefore, tools may be used to assist in nutritional decision-making, such as nutrition protocols. OBJECTIVES: The objective of this two-stage qualitative study was to explore the perceptions of physicians about their management of enteral nutrition in a paediatric intensive care unit and the implementation of a nutrition protocol and computerised system. METHODS: This study involved semistructured interviews with physicians at the Paediatric Intensive Care Unit of Lausanne University Hospital, Switzerland. Research dietitians conducted interviews before (stage one) and after (stage two) the implementation of a nutrition protocol and computerised system. During stage one, six junior physicians and five fellows were interviewed. At stage two, 12 junior physicians, 12 fellows, and five senior physicians were interviewed. Interviews were recorded, with data transcribed verbatim before a thematic analysis using a framework method. RESULTS: Three themes emerged from thematic analysis: "nutritional knowledge", "nutritional practices", and "resources to manage nutrition". During stage one, physicians, especially junior physicians, reported a lack of nutritional knowledge for critically ill children and stated that nutritional issues primarily depended on senior physicians, who themselves had various practices. All physicians were in favour of a nutrition protocol and computerised system. At stage two, interviewees stated that they used both tools regularly. They reported improved nutritional knowledge, more systematic and consistent nutritional practices, and increased attention to nutrition. CONCLUSIONS: The implementation of a nutrition protocol and computerised system by a multiprofessional team helped physicians in the paediatric intensive care unit to manage nutritional support and increase their attention to nutrition.

Nageswaran, S., Q. Banks, S. L. Golden, W. A. Gower and N. M. P. King (2020). "The role of religion and spirituality in caregiver decision-making about tracheostomy for children with medical complexity." Journal of Health Care Chaplaincy.[Nageswaran, Savithri; Banks, Quincy; Gower, W. Adam] Wake Forest Sch Med, Dept Pediat, 1 Med Ctr Blvd, Winston Salem, NC 27157 USA. [Golden, Shannon L.; King, Nancy M. P.] Wake Forest Sch Med, Dept Social Sci & Hlth Policy, Winston Salem, NC 27101 USA. [Gower, W. Adam] Univ N Carolina, Dept Pediat, Chapel Hill, NC 27515 USA.

Nageswaran, S (reprint author), Wake Forest Sch Med, Dept Pediat, 1 Med Ctr Blvd, Winston Salem, NC 27157 USA. snageswa@wakehealth.edu

              Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

Nooteboom, L. A., S. I. van den Driesschen, C. H. Z. Kuiper, R. Vermeiren and E. A. Mulder (2020). "An integrated approach to meet the needs of high-vulnerable families: a qualitative study on integrated care from a professional perspective." Child and Adolescent Psychiatry and Mental Health 14(1).[Nooteboom, L. A.; van den Driesschen, S., I; Vermeiren, R. R. J. M.; Mulder, E. A.] Curium Leiden Univ, Med Ctr, Dept Child & Adolescent Psychiat, Post Box 15, NL-2300 AA Leiden, Netherlands. [Kuiper, C. H. Z.] Leiden Univ Appl Sci, Zernikedreef 11, NL-2311 CK Leiden, Netherlands. [Kuiper, C. H. Z.] Horizon Youth Care & Special Educ, Mozartlaan 150, NL-3055 KM Rotterdam, Netherlands. [Vermeiren, R. R. J. M.] Youz Parnassia Grp, Dr van Welylaan 2, NL-2566 ER The Hague, Netherlands. [Mulder, E. A.] Intermetzo Pluryn, Post Box 53, NL-6500 AB Nijmegen, Netherlands. [Mulder, E. A.] Univ Amsterdam, Dept Child & Adolescent Psychiat, Med Ctr Locat VUMC, Meibergdreef 5, NL-1105 AZ Amsterdam, Netherlands.

Nooteboom, LA (reprint author), Curium Leiden Univ, Med Ctr, Dept Child & Adolescent Psychiat, Post Box 15, NL-2300 AA Leiden, Netherlands. l.a.nooteboom@curium.nl

              Background To meet the needs of high-vulnerable families with severe and enduring problems across several life domains, professionals must improve their ability to provide integrated care timely and adequately. The aim of this study was to identify facilitators and barriers professionals encounter when providing integrated care. Methods Experiences and perspectives of 24 professionals from integrated care teams in the Netherlands were gathered by conducting semi-structured interviews. A theory-driven framework method was applied to systematically code the transcripts both deductively and inductively. Results There was a consensus among professionals regarding facilitators and barriers influencing their daily practice, leading to an in depth, thematic report of what facilitates and hinders integrated care. Themes covering the facilitators and barriers were related to early identification and broad assessment, multidisciplinary expertise, continuous pathways, care provision, autonomy of professionals, and evaluation of care processes. Conclusions Professionals emphasized the need for flexible support across several life domains to meet the needs of high-vulnerable families. Also, there should be a balance between the use of guidelines and a professional's autonomy to tailor support to families' needs. Other recommendations include the need to improve professionals' ability in timely stepping up to more intensive care and scaling down to less restrictive support, and to further our insight in risk factors and needs of these families.

O'Donnell, A., A. Buffo, T. C. Campbell and W. J. Ehlenbach (2020). "The Critical Care Nurse Communicator Program: An Integrated Primary Palliative Care Intervention." Crit Care Nurs Clin North Am 32(2): 265-279.Trauma Life Support Center, UW Health, 600 Highland Avenue, Madison, WI 53792, USA. Electronic address: aodonnell@uwhealth.org.

Critical Care Nurse Communicator Program, UW Health, 600 Highland Avenue, Madison, WI 53792, USA.

Division of Hem/Onc/Pall Care, University of Wisconsin School of Medicine and School of Nursing, 1111 Highland Avenue, Madison, WI 53711, USA.

University of Wisconsin School of Medicine Public Health, 1685 Highland Avenue, Madison, WI 53705, USA.

              Twenty percent of Americans die in an intensive care unit (ICU), often incapacitated or requiring assisted decision making. Surrogates are often required to make urgent, complex, high-stakes decisions. Communication among patients, families, and clinicians is often delayed and inefficient with frequent missed opportunities to support the emotional and psychological needs of surrogates, particularly at the end of life. The Critical Care Nurse Communicator program is a nurse-led, primary palliative care intervention designed to improve the quality and consistency of communication in the ICU and address the informational, psychological, and emotional needs of surrogate decision-makers through the shared decision-making process.

Okada, J., T. Hisano, M. Unno, Y. Tanaka, M. Saikusa, M. Kinoshita, E. Harada, S. Iwata and O. Iwata (2020). "Video-call based newborn triage system for local birth centres can be established without major instalment costs using commercially available smartphones." Sci Rep 10(1): 7552.Division of Neonatology, St. Mary's Hospital, Fukuoka, Japan.

Center for Human Development and Family Science, Department of Neonatology and Pediatrics, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.

Centre for Developmental and Cognitive Neuroscience, Department of Paediatrics and Child Health, Kurume University School of Medicine, Fukuoka, Japan.

Division of Neonatology, St. Mary's Hospital, Fukuoka, Japan. o.iwata@med.nagoya-cu.ac.jp.

Center for Human Development and Family Science, Department of Neonatology and Pediatrics, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan. o.iwata@med.nagoya-cu.ac.jp.

Centre for Developmental and Cognitive Neuroscience, Department of Paediatrics and Child Health, Kurume University School of Medicine, Fukuoka, Japan. o.iwata@med.nagoya-cu.ac.jp.

              Neonates often develop transition problems after low-risk birth, precise assessment of which is difficult at primary birth centres. The aim of this study was to assess whether a video triage system can be established without a specially designed communication system between local birth centres and a tertiary neonatal intensive care unit in a region with a population of 700,000. 761 neonates who were referred to a tertiary neonatal intensive care unit were examined. During period 1 (April 2011-August 2015), only a voice call was available for consultations, whereas, during period 2 (September 2015-December 2017), a video call was additionally available. The respiratory condition was assessed based on an established visual assessment tool. A video consultation system was established by connecting personal smartphones at local birth centres with a host computer at a tertiary neonatal intensive care centre. During period 2, video-based triage was performed for 42.4% of 236 consultations at 30 birth centres. Sensitivity and specificity for predicting newborns with critical respiratory dysfunction changed from 0.758 to 0.898 and 0.684 to 0.661, respectively. A video consultation system for ill neonates was established without major instalment costs. Our strategy might improve the transportation system in both high- and low-resource settings.

Oude Maatman, S. M., K. Bohlin, S. Lilliesköld, H. T. Garberg, I. Uitewaal-Poslawky, M. C. Kars and A. van den Hoogen (2020). "Factors Influencing Implementation of Family-Centered Care in a Neonatal Intensive Care Unit." Front Pediatr 8: 222.Department Woman and Baby, Wilhelmina Children's Hospital, University Medical Centre Utrecht, Utrecht, Netherlands.

Department of Neonatology, Karolinska University Hospital, Stockholm, Sweden.

Department of Pediatrics, Drammen Sykehus, Drammen, Norway.

Clinical Health Science, Utrecht University, Utrecht, Netherlands.

              Background: Approximately 10% of all births worldwide are preterm. Often these infants are admitted at a Neonatal Intensive Care Unit (NICU). The NICU environment with periods of unnatural light, noise and repeated disturbances is very stressful for infants admitted to the NICU. In addition separation of parents causes stress for both infant and parents. A way to support and include parents in the care for their infants is Family-Centered Care (FCC). FCC is an approach of planning, delivery and evaluation of healthcare, based on a partnership between healthcare professionals and families of patients. Parents of infants who were admitted to an FCC unit were less stressed compared to parents at a Standard Care unit. Aim: Although FCC is beneficial to families and patients, implementation can be challenging. Therefore it is important to know which factors can contribute or withhold the implementation of FCC. This study explored factors that influence implementation of FCC in NICU's according to healthcare professionals that work in a NICU with the concept FCC. Method: A descriptive generic qualitative design with semi-structured interviews and inductive thematic analyses was used. This international multi-center study was conducted in three hospitals in three European countries: Sweden, Norway, and The Netherlands. Results: Seven neonatal care nurses, one nurse assistant, five neonatologists, and three managers participated in this study. Four aspects were identified, when analyzing the data, namely: Behavioral change in staff, Family needs, Environment, and Communication. Most important is that almost all healthcare professionals described that the mind-set of the professional influences the implementation of FCC. Conclusion: The mind-set of healthcare professionals in seeing parents as primary caregiver influences the way FCC is practiced and how parents are involved in the care for their infant.

Paquette, E. T., H. Palac, E. Bair, B. Schultz, N. Stenquist, S. Joffe and A. Shukla (2020). "The Importance of Engaging Children in Research Decision-Making: A Preliminary Mixed-Methods Study." Ethics Hum Res 42(3): 12-20.Assistant professor in the Department of Pediatrics at Northwestern University and is an attending physician in the Division of Critical Care at the Ann & Robert H. Lurie Children's Hospital of Chicago and, during data collection, was a pediatric critical care fellow in the Division of Pediatric Critical Care at Boston Children's Hospital.

Statistician in the Biostatistics Research Core at Northwestern University during participation.

Was a research associate at the Dana Farber Cancer Institute during participation.

Orthopedic resident at NYU Langone Medical Center and, during participation, was a research associate at Boston Children's Hospital.

Was a research associate at Boston Children's Hospital during participation.

The interim chair in the Department of Medical Ethics and Health Policy and the Founders professor of medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine.

Clinical research associate in the Division of Critical Care at the Ann & Robert H. Lurie Children's Hospital of Chicago.

              Studies demonstrate deficiencies in parents' and children's comprehension of research and lack of child engagement in research decision-making. We conducted a cross-sectional and interview-based study of 31 parent-child dyads to describe decision-making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision-making process, the child's comprehension, whether the study team asked the child about participation, whether the child read study-related materials, the parent's marital status, and the child's race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study-related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent-child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.

Poger, J. M., V. Mayer, O. K. Duru, B. Nauman, H. Holderness, N. Warren, C. Vasquez, S. Bibi, L. J. Rasmussen-Torvik, Z. Hosseinian, L. Shi, J. Wallace, C. N. Goytia, C. R. Horowitz and J. L. Kraschnewski (2020). "Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research." Med Care 58 Suppl 6 Suppl 1: S66-s74.Department of Medicine, Penn State College of Medicine, Hershey, PA.

Department of Population Health Science and Policy.

Department of Medicine, Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, NY.

Division of General Internal Medicine & Health Services Research, David Geffen School of Medicine, UCLA, Los Angeles, CA.

Health Services Research, Louisiana Public Health Institute, New Orleans, LA.

Department of Family Medicine, Oregon Health and Science University.

OCHIN Inc., Portland, OR.

UCLA Division of General Internal Medicine and Health Services Research, Los Angeles, CA.

Center for HealthCare Organizational and Innovation Research (CHOIR), School of Public Health, University of California, Berkeley, Berkeley, CA.

Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University.

Center for Health Information Partnerships (CHIP), Northwestern University Feinberg School of Medicine, Chicago, IL.

Health Systems Analytics Research Center, Department of Global Health Management and Policy at School of Public Health and Tropical Medicine, Tulane University, New Orleans, LA.

Department of Population Medicine, Division of Health Policy and Insurance Research, Harvard Pilgrim Health Care Institute, Boston, MA.

Clinical Translational Science Award (CTSA) Community Core, Mount Sinai School of Medicine.

Health Policy and Medicine, Icahn School of Medicine at Mount Sinai New York, NY.

Department of Medicine and Public Health Sciences, Penn State Clinical and Translational Science Institute, Penn State Health Milton S. Hershey Medical Center, Hershey, PA.

              BACKGROUND: Stakeholders (ie, patients, policymakers, clinicians, advocacy groups, health system leaders, payers, and others) offer critical input at various stages in the research continuum, and their contributions are increasingly recognized as an important component of effective translational research. Natural experiments, in particular, may benefit from stakeholder feedback in addressing real-world issues and providing insight into future policy decisions, though best practices for the engagement of stakeholders in observational studies are limited in the literature. METHODS: The Natural Experiments for Translation in Diabetes 2.0 (NEXT-D2) network utilizes rigorous methods to evaluate natural experiments in health policy and program delivery with a focus on diabetes-related outcomes. Each of the 8 partnering institutions incorporates stakeholder engagement throughout multiple study phases to enhance the patient-centeredness of results. NEXT-D2 dedicates a committee to Engagement for resource sharing, enhancing engagement approaches, and advancing network-wide engagement activities. Key stakeholder engagement activities include Study Meetings, Proposal Development, Trainings & Educational Opportunities, Data Analysis, and Results Dissemination. Network-wide patient-centered resources and multimedia have also been developed through the broad expertise of each site's stakeholder group. CONCLUSIONS: This collaboration has created a continuous feedback loop wherein site-level engagement approaches are informed via the network and network-level engagement efforts are shaped by individual sites. Emerging best practices include: incorporating stakeholders in multiple ways throughout the research, building on previous relationships with stakeholders, enhancing capacity through stakeholder and investigator training, involving stakeholders in refining outcome choices and understanding the meaning of variables, and recognizing the power of stakeholders in maximizing dissemination.

Poh, P. F., J. H. Lee, Y. J. Loh, T. H. Tan and K. K. F. Cheng (2020). "Readiness for Hospital Discharge, Stress, and Coping in Mothers of Children Undergoing Cardiac Surgeries: A Single-Center Prospective Study." Pediatr Crit Care Med 21(5): e301-e310.Children's Intensive Care Unit, Division of Nursing, KK Women's and Children's Hospital, Singapore.

Children's Intensive Care Unit, Department of Pediatric Subspecialties, KK Women's and Children's Hospital, Medicine, Singapore.

Duke-NUS Medical School, Singapore.

Mount Elizabeth Novena Hospital, Singapore.

Children's Intensive Care Unit - Cardiology Service, Department of Pediatric Subspecialties, Singapore.

Alice Lee Centre for Nursing Studies, National University of Singapore, Singapore.

              OBJECTIVES: To examine the relationship between stress, coping, and discharge readiness in mothers of children undergoing congenital heart surgeries. DESIGN: Quantitative descriptive study at three time points: pre surgery (time point I), day of hospital discharge (time point II) and 2 weeks following discharge (time point III). SETTING: Tertiary care pediatric hospital in Singapore. PARTICIPANTS: One hundred mothers whose children had undergone congenital heart surgeries. MEASUREMENTS AND MAIN RESULTS: Data collection included self-reported questionnaires of the Pediatric Inventory for Parents and the Coping Health Inventory for Parents across three time points. Readiness for Hospital Discharge Scale was administered at hospital discharge (time point II). The utilization of health services and support was reported at post discharge (time point III). One-hundred mothers participated in this study between May 2016 and July 2017. Their mean age was 35.8 years (SD = 7.0), and the mean age of their children was 3.7 years (SD = 4.6). There was significant reduction in mean stress difficulty (Pediatric Inventory for Parents) of mothers (F = 4.58; p = 0.013) from time point I to III. No significant changes were found in the overall mean coping score (Coping Health Inventory for Parents) of mothers across time. The mean overall score for the readiness for discharge (Readiness for Hospital Discharge Scale) of mothers at hospital discharge was 207.34 (SD = 29.22). Coping through family integration subscale and communication stress predicted discharge readiness of mothers (adjusted R = 0.11; p = 0.034). Mothers who reported higher overall stress (Pediatric Inventory for Parents) 2 weeks post discharge were more likely to call a friend or family member, visit the emergency department, or have their child readmitted to hospital following hospital discharge. CONCLUSIONS: We identified coping by family integration and communication-related stress as predictors of readiness for discharge. Strategies targeted at communication and family integration for discharge preparation may improve caregivers' readiness for hospital discharge.

Pollock, D., T. Ziaian, E. Pearson, M. Cooper and J. Warland (2020). "Understanding stillbirth stigma: A scoping literature review." Women Birth 33(3): 207-218.University of South Australia, School of Nursing and Midwifery, City East Campus, 108 North Terrace, Adelaide, South Australia, 5001, Australia. Electronic address: Danielle.Pollock@unisa.edu.au.

University of South Australia, School of Psychology, Social Work and Social Policy, St Bernards Rd, Magill SA 5072, Australia.

University of South Australia, School of Nursing and Midwifery, City East Campus, 108 North Terrace, Adelaide, South Australia, 5001, Australia.

              BACKGROUND: The World Health Organization, and the 2011 and 2016 Lancet Stillbirth series as well as medical and scientific literature, have all called for stillbirth stigma to be reduced. However, few studies have explored or attempted to conceptualise the meaning of stigma in the context of stillbirth. AIM: To explore the current knowledge surrounding stillbirth stigma, specifically the extent, type and experiences of bereaved parents. METHODS: A five-stage scoping review framework was utilised. A search of relevant databases (MedLine, EMBASE, PsychInfo, PsychArticles, and Ovid Emcare) was undertaken with several key words related to 'stillbirth' and 'stigma.' The reference lists of included studies were also searched. FINDINGS: A total of 23 resources met the inclusion criteria for this review. A thematic analysis regarding how stigma was conceptualised and/or experienced within results and/or discussion was employed on these studies. Five over-arching themes, with several sub-themes, were discovered: Type of stigma, identity, silence, bereaved mothers' experiences of stigma in low-income countries and transformation. DISCUSSION: Stillbirth stigma remains an under-researched topic. Few articles conceptualised the experiences of the bereaved parent within a stigma framework. However, examples of bereaved parents enduring stigma were found within the literature. Common stigmatising experiences included, bereaved parents' identities being challenged; and feelings of shame, guilt, and blame after their stillbirth. Stigmatising experiences could be different based on the bereaved parent's cultural background. CONCLUSION: Further research which attempts to conceptualise stillbirth stigma and explores those experiences from a bereaved parent perspective is needed to help inform stigma reduction strategies.

Power, S., S. Meaney, R. Cotter and K. O'Donoghue (2020). "Education priorities for voluntary organisations supporting parents experiencing perinatal loss: a Delphi survey." International Journal of Palliative Nursing 26(4): 156-166.[Power, Stacey] Cork Univ, Irish Ctr Maternal & Child Hlth Res, Matern Hosp, Cork, Ireland. [Meaney, Sarah] Univ Coll Cork, Natl Perinatal Epidemiol Ctr, Cork, Ireland. [Cotter, Riona] Cork Univ, Matern Hosp, Cork, Ireland. [O'Donoghue, Keelin] Cork Univ, Irish Ctr Maternal & Child Hlth Res, Pregnancy Loss Res Grp, Matern Hosp, Cork, Ireland.

Power, S (reprint author), Cork Univ, Irish Ctr Maternal & Child Hlth Res, Matern Hosp, Cork, Ireland. stacey.pcnver@ucc.ie

              Background: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day. Method: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group. Results: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day. Conclusion: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.

Quinn, M. and U. Menon (2020). "NICU Parent Preferences for Stakeholder Engagement in Research." Adv Neonatal Care.University of Arizona College of Nursing, Tucson (Dr Quinn); and University of South Florida College of Nursing, Tampa (Dr Menon).

              BACKGROUND: Engagement of parents as stakeholders in the research process can help ensure that interventions are aligned with their needs and experiences, but little is known about their preferences for research collaboration. PURPOSE: The purpose of this qualitative, exploratory study was to explore former neonatal intensive care unit (NICU) parents' attitudes toward engagement as parent collaborators and identify potential barriers and facilitators to parent collaboration in research. METHODS: Three focus groups and 3 interviews were conducted. Participants completed a demographic survey including information about their child's hospitalization. Parents were asked to discuss their NICU story, involvement in the parent community, experience with research, and factors influencing their decision to collaborate on a research study. RESULTS: Nine parents completed the study. Participation was motivated by a desire to help other families. Recruitment suggestions included using parent organizations, social media networks, and advertising in the NICU. Facilitators to research engagement were passion about research topic, distance participation, affecting change, helping other parents, and compensation. Barriers included time constraints and unresolved trauma. IMPLICATIONS FOR PRACTICE: NICU nurses can leverage their relationships with parents to act as liaisons between research teams and parents, helping recruit and encouraging them to form research partnerships. IMPLICATIONS FOR RESEARCH: Parents are interested in collaborating with neonatal research teams when they can improve experiences for other families and can see or help implement change. Researchers should be conscious of constraints on parents' ability to meet frequently or in person and offer accommodations such as conference calls and online training.

Rady, M. Y. (2020). "Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges." Neurocrit Care.Department of Critical Care Medicine, Mayo Clinic Hospital, 5777 East Mayo Blvd, Phoenix, AZ, 85054, USA. rady.mohamed@mayo.edu.

              The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be referred for potential organ donation to increase the supply of transplantable organs in the UK. To buttress this objective, a UK survey of parents of deceased children mostly with neurologic disorders secondary to severe brain injuries recommended the integration of routine parental discussion of donation regardless of donation eligibility in end-of-life care. Donation discussions emphasize the utility and suitability of organs in dying children for transplantation to maximize consent rate. To ensure that this recommendation does not harm children and parents, contemporary medical, legal, cultural, and religious challenges to end-of-life organ donation should be disclosed in parental discussion of donation and resolved appropriately. To that effect, it is urged that: (1) practice guidelines for the diagnosis and treatment of neurologic disorders secondary to severe brain injuries in children are updated and aligned with recent advances in neuroscience to eliminate potential errors from premature treatment discontinuation and/or incorrect diagnosis of death by brain(stem) criteria, (2) transparent and non-biased disclosure of all empiric information when discussing donation to ensure informed parental decision-making, and (3) a societal dialogue is conducted on the legal, cultural, and religious consequences of integration of routine donation discussion and referral in end-of-life care of children in the UK.

Ramelet, A. S., E. Bergstraesser, C. Grandjean, A. Dorsaz, P. Fahrni-Nater, E. Cignacco and K. Zimmerman (2020). "Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project." Pediatr Crit Care Med 21(5): e236-e246.Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland.

Department Woman-Mother-Child, Lausanne University Hospital (CHUV), Lausanne, Switzerland.

Paediatric Oncology Department, University Children's Hospital, Zurich, Switzerland.

Paediatric Department, Hôpital Riviera-Chablais (Vaud-Valais), Vevey, Switzerland.

Department Public Health (DPH), Nursing Science, University of Basel, Basel, Switzerland.

Department of Health Professions, Bern University of Applied Sciences, Bern, Switzerland.

Children's Research Center, University Children's Hospital of Zurich, University of Zurich, Zurich, Switzerland.

              OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart review. SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland. PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008). CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Roche, R., J. M. Youngblut and D. A. Brooten (2020). "Parent and child perceptions of the child's health at 2, 4, 6, and 13 months after sibling intensive care or emergency department death." J Am Assoc Nurse Pract.Florida International University Nicole Wertheim College of Nursing & Health Sciences, Miami, FL.

              BACKGROUND: Approximately 50,000 US infants and children die annually, leaving surviving children and families with long-lasting effects. In most studies, children's health is rated by parents, but not the children. PURPOSE: To compare the surviving children's self-rated health with parents' ratings at 2, 4, 6, and 13 months after sibling neonatal intensive care unit/pediatric intensive care unit/emergency department death death and identify the related factors. METHODS: Children and their parents rated the child's health "now," "now compared with others your age," and "now versus before" the sibling's death. SAMPLE: One hundred thirty-two children (58% girls, 72% school-aged, and 50% Black non-Hispanic), 70 mothers, and 26 fathers from 71 bereaved families. CONCLUSIONS: Children self-rated their health: "now" as lower than their mothers at 4, 6, and 13 months and their fathers at 2, 4, and 13 months; "now compared with others your age" as lower than their mothers at each time point and fathers at 4, 6, and 13 months; and "now versus before" their sibling's death as higher than their mothers at 4, 6, and 13 months and fathers at 6 months. Ratings did not differ by age, gender, or race/ethnicity. At 6 months, children self-rated their health "now" as higher than their fathers in families with one to two surviving children but lower than their fathers in families with three to eight surviving children. IMPLICATIONS FOR PRACTICE: Parents often perceive their children as healthier than children perceive themselves after sibling death, especially in larger families. Talking with children separately can identify the children at risk for emotional and physical illnesses earlier, providing more timely and appropriate interventions and referrals.

Rodway, C., S. G. Tham, S. Ibrahim, P. Turnbull, N. Kapur and L. Appleby (2020). "Children and young people who die by suicide: childhood-related antecedents, gender differences and service contact." BJPsych Open 6(3): e49.National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH), Centre for Mental Health and Safety, School of Health Sciences, University of Manchester, UK.

National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH), Centre for Mental Health and Safety, School of Health Sciences, University of Manchester; and Greater Manchester Mental Health NHS Foundation Trust, UK.

              BACKGROUND: Worldwide suicide is commonest in young people and in many countries, including the UK, suicide rates in young people are rising. AIMS: To investigate the stresses young people face before they take their lives, their contact with services that could be preventative and whether these differ in girls and boys. METHOD: We identified a 3-year UK national consecutive case series of deaths by suicide in people aged 10-19, based on national mortality data. We extracted information on the antecedents of suicide from official investigations, primarily inquests. RESULTS: Between 2014 and 2016, there were 595 suicides by young people, almost 200 per year; 71% were male (n = 425). Suicide rates increased from the mid-teens, most deaths occurred in those aged 17-19 (443, 74%). We obtained data about the antecedents of suicide for 544 (91%). A number of previous and recent stresses were reported including witnessing domestic violence, bullying, self-harm, bereavement (including by suicide) and academic pressures. These experiences were generally more common in girls than boys, whereas drug misuse (odds ratio (OR) = 0.54, 95% CI 0.35-0.83, P = 0.006) and workplace problems (OR 0.52, 95% CI 0.28-0.96, P = 0.04) were less common in girls. A total of 329 (60%) had been in contact with specialist children's services, and this was more common in girls (OR 1.86, 95% CI 1.19-2.94, P = 0.007). CONCLUSIONS: There are several antecedents to suicide in young people, particularly girls, which are important in a multiagency approach to prevention incorporating education, social care, health services and the third sector. Some of these may also have contributed to the recent rise.

Rothschild, C. B. and S. F. Derrington (2020). "Palliative care for pediatric intensive care patients and families." Curr Opin Pediatr 32(3): 428-435.Department of Pediatrics, Division of Critical Care Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin.

Children's Wisconsin.

Department of Pediatrics, Divisions of Critical Care and Palliative Care, Northwestern University Feinberg School of Medicine.

Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.

              PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients. RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families. SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.

Rothschild, C. B., K. L. Rychlik, D. M. Goodman, E. Charleston, M. L. Brown, K. N. Michelson and I. Navigate Study (2020). "Association Between Resilience and Psychological Morbidity in Parents of Critically Ill Children*." Pediatric Critical Care Medicine 21(4): E177-E185.[Rothschild, Charles B.] Med Coll Wisconsin, Dept Pediat, Div Crit Care Med, 8701 Watertown Plank Rd, Milwaukee, WI 53226 USA. [Rychlik, Karen L.] Ann & Robert H Lurie Childrens Hosp Chicago, Stanley Manne Res Inst, Chicago, IL 60611 USA. [Rychlik, Karen L.; Goodman, Denise M.; Charleston, Elizabeth; Michelson, Kelly N.] Ann & Robert H Lurie Childrens Hosp Chicago, Dept Pediat, Chicago, IL 60611 USA. [Brown, Melanie L.] Childrens Minnesota, Dept Pain Med Palliat Care & Integrat Med, Minneapolis, MN USA. Ann & Robert H Lurie Childrens Hosp Chicago, Chicago, IL 60611 USA. Comer Childrens Hosp, Chicago, IL USA.

Rothschild, CB (reprint author), Med Coll Wisconsin, Dept Pediat, Div Crit Care Med, 8701 Watertown Plank Rd, Milwaukee, WI 53226 USA. crothschild@mcw.edu

              Objective: To determine whether parental resilience, measured at ICU admission, is associated with parent-reported symptoms of depression, anxiety, posttraumatic stress, and satisfaction with ICU care 3-5 weeks following ICU discharge. Design: Planned prospective, observational study nested in a randomized comparative trial. Setting: PICUs and cardiac ICUs in two, free-standing metropolitan area children's hospitals. Participants: English- and Spanish-speaking parents whose children were younger than 18 years old and had anticipated ICU stay of greater than 24 hours or Pediatric Index of Mortality score of greater than or equal to 4 at the time of consent. All ICU admissions were screened for inclusion. Of 4,251 admissions reviewed, 1,360 were eligible. Five hundred families were approached and 382 enrolled. Two hundred thirty-two parents from 210 families with complete data were included in analysis. Interventions: All participating parents completed the Connor-Davidson Resilience Scale at the time of consent and outcome measures 3-5 weeks after ICU discharge. Measurements and Main Results: All parents completed the Patient-Reported Outcome Measurement Information System Short Forms 8a for Depression and Anxiety, Impact of Event Scale-Revised for posttraumatic stress, and Pediatric Family Satisfaction-ICU 24 for parental satisfaction 3-5 weeks after ICU discharge. Higher parental resilience was associated with fewer symptoms of depression, anxiety, and posttraumatic stress in the final model (all p < 0.0001). Shorter length of stay, early mechanical ventilation, Latino ethnicity, and lower illness severity (both objective and parental perceptions) were associated with less morbidity in some or all measured mental health outcomes. Conclusions: Higher parental resilience is associated with fewer reported symptoms of anxiety, depression, and posttraumatic stress 3-5 weeks after ICU discharge. Parental resilience may impact parental post-ICU psychological morbidity. Measuring parental resilience could be one approach to identify parents at risk for post-ICU psychological morbidity. Future research into the impact of interventions designed to boost parental resilience is warranted.

Sankar, J., N. Dhochak, S. K. Kabra and R. Lodha (2020). "COVID-19 in Children: Clinical Approach and Management." Indian J Pediatr 87(6): 433-442.Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, 110029, India.

Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, 110029, India. rakesh_lodha@hotmail.com.

              COVID-19 pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is a major public health crisis threatening humanity at this point in time. Transmission of the infection occurs by inhalation of infected droplets or direct contact with soiled surfaces and fomites. It should be suspected in all symptomatic children who have undertaken international travel in the last 14 d, all hospitalized children with severe acute respiratory illness, and asymptomatic direct and high-risk contacts of a confirmed case. Clinical symptoms are similar to any acute respiratory viral infection with less pronounced nasal symptoms. Disease seems to be milder in children, but situation appears to be changing. Infants and young children had relatively more severe illness than older children. The case fatality rate is low in children. Diagnosis can be confirmed by Reverse transcriptase - Polymerase chain reaction (RT-PCR) on respiratory specimen (commonly nasopharyngeal and oropharyngeal swab). Rapid progress is being made to develop rapid diagnostic tests, which will help ramp up the capacity to test and also reduce the time to getting test results. Management is mainly supportive care. In severe pneumonia and critically ill children, trial of hydroxychloroquine or lopinavir/ritonavir should be considered. As per current policy, children with mild disease also need to be hospitalized; if this is not feasible, these children may be managed on ambulatory basis with strict home isolation. Pneumonia, severe disease and critical illness require admission and aggressive management for acute lung injury and shock and/or multiorgan dysfunction, if present. An early intubation is preferred over non-invasive ventilation or heated, humidified, high flow nasal cannula oxygen, as these may generate aerosols increasing the risk of infection in health care personnel. To prevent post discharge dissemination of infection, home isolation for 1-2 wk may be advised. As of now, no vaccine or specific chemotherapeutic agents are approved for children.

Sedig, L. K., J. L. Spruit, T. K. Paul, M. K. Cousino, K. Pituch and R. Hutchinson (2020). "Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study." Am J Hosp Palliat Care 37(6): 424-432.Division of Pediatric Hematology Oncology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

Wayne State University College of Nursing, Detroit, MI, USA.

Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA.

Division of Pediatric Psychology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

Pediatric Palliative Care Program, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.

              BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

Seyedi, S. J., R. Shojaeian, M. Hiradfar, A. Mohammadipour and S. A. Alamdaran (2020). "Coronavirus Disease 2019 (COVID-19) Outbreak in Pediatrics and the Role of Pediatricians: A Systematic Review." Iranian Journal of Pediatrics 30(2).[Seyedi, Seyed Javad; Shojaeian, Reza; Hiradfar, Mehran; Alamdaran, Seyed Ali] Mashhad Univ Med Sci, Mashhad, Razavi Khorasan, Iran. [Mohammadipour, Ahmad] Golestan Univ Med Sci, Gorgan, Golestan, Iran.

Shojaeian, R (reprint author), Mashhad Univ Med Sci, Mashhad, Razavi Khorasan, Iran. drshojaeian@ymail.com

              The coronavirus disease 2019 (COVID-19) outbreak initiated in Wuhan, China and has spread rapidly all around the world and labeled as a pandemic with almost 168,000 infected cases and 6,500 deaths globally up to March 16, 2020. It is believed that children are less likely than adults to be infected with COVID-19. In this review, we discuss different aspects of COVID-19 infection in pediatrics. COVID-19 in pediatrics occurs in the early stages of its outbreak at a high rate with a family cluster pattern mainly. Children infected with COVID-19 are mostly asymptomatic carriers and the main potential causes of the spread and transmission of the disease in communities. Asymptomatic children with no underlying disease or red flags should follow home isolation protocols. Children with red flags, comorbidities and risk factors or those with severe pneumonia must be admitted to the hospitals. Children's hospitals should be equipped with the acute respiratory diseases ward, quarantine rooms, and intensive care unit to protect other patients and health care staff during the COVID-19 outbreak.

Shalish, W., S. Lakshminrusimha, P. Manzoni, M. Keszler and G. M. Sant'Anna (2020). "COVID-19 and Neonatal Respiratory Care: Current Evidence and Practical Approach." Am J Perinatol.Neonatal Division, Department of Pediatrics, McGill University Health Center, Montreal, Quebec, Canada.

Department of Pediatrics, UC Davis, Sacramento, California.

Department of Pediatrics and Neonatology, University Hospital Degli Infermi, Biella, Italy.

Department of Pediatrics, Women and Infants Hospital, Brown University, Providence Rhode Island.

              The novel coronavirus disease 2019 (COVID-19) pandemic has urged the development and implementation of guidelines and protocols on diagnosis, management, infection control strategies, and discharge planning. However, very little is currently known about neonatal COVID-19 and severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2) infections. Thus, many questions arise with regard to respiratory care after birth, necessary protection to health care workers (HCW) in the delivery room and neonatal intensive care unit (NICU), and safety of bag and mask ventilation, noninvasive respiratory support, deep suctioning, endotracheal intubation, and mechanical ventilation. Indeed, these questions have created tremendous confusion amongst neonatal HCW. In this manuscript, we comprehensively reviewed the current evidence regarding COVID-19 perinatal transmission, respiratory outcomes of neonates born to mothers with COVID-19 and infants with documented SARS-CoV-2 infection, and the evidence for using different respiratory support modalities and aerosol-generating procedures in this specific population. The results demonstrated that to date, neonatal COVID-19 infection is uncommon, generally acquired postnatally, and associated with favorable respiratory outcomes. The reason why infants display a milder spectrum of disease remains unclear. Nonetheless, the risk of severe or critical illness in young patients exists. Currently, the recommended respiratory approach for infants with suspected or confirmed infection is not evidence based but should include all routinely used types of support, with the addition of viral filters, proper personal protective equipment, and placement of infants in isolation rooms, ideally with negative pressure. As information is changing rapidly, clinicians should frequently watch out for updates on the subject. KEY POINTS: · Novel coronavirus disease 2019 (COVID-19) pandemic urged development of guidelines.. · Neonatal COVID-19 disease is uncommon.. · Respiratory outcomes in neonates seems favorable.. · Current neonatal respiratory care should continue.. · Clinicians should watch frequently for updates..

Sim, C. W., S. Heuse, D. Weigel and F. Kendel (2020). "If only I could turn back time-Regret in bereaved parents." Pediatr Blood Cancer 67(6): e28265.Department of Pediatrics, Division of Oncology and Hematology, Charité -Universitätsmedizin Berlin, Augustenburger Platz 1, Berlin, Berlin, 13353, Germany.

Department Business & Psychology, University of Applied Sciences Europe - Campus Berlin, Dessauer Str. 3-5, Berlin, Berlin, 10963, Germany.

Institute of Gender in Medicine, Charité - Universitätsmedizin Berlin, Augustenburger Platz 1, Berlin, Berlin, 13353, Germany.

              INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is vital for supporting these families, parents' regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents' regret themes and their impact on their future lives. METHODS: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. RESULTS: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. CONCLUSIONS: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later.

Skirko, J. R., S. H. Pollard, S. Slager, M. Hung and C. Weir (2020). "Family Experience With Pierre Robin Sequence: A Qualitative Study." Cleft Palate Craniofac J 57(6): 736-745.Division of Pediatric Otolaryngology--Head & Neck Surgery, University of Utah and Primary Children's Hospital, Salt Lake City, UT, USA.

Department of Pharmacotherapy, University of Utah, Salt Lake City, UT, USA.

College of Dental Medicine, Roseman University of Health Sciences, South Jordan, UT, USA.

Department of Orthopaedic Surgery Operations, University of Utah, Salt Lake City, UT, USA.

Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.

              OBJECTIVE: To identify concepts and constructs important to parents of children with Pierre Robin Sequence (PRS). DESIGN: Qualitative study. SETTING: All children received some care at a tertiary hospital with additional care at outside facilities. Interviews were conducted in nonclinical locations, including remote locations. PARTICIPANTS: Parents of children <5 years old with a diagnosis of PRS. Prior treatments included observation, positioning, nasal trumpet, mandibular distraction osteogenesis, tracheostomy, and gastrostomy. INTERVENTION: Semi-structured interviews with individuals (4) and with groups (focus groups, 4) were conducted using open-ended questions and non-leading prompts. Transcripts were analyzed with iterative open and axial coding. Concepts and constructs were identified and refined into codes and central themes. Interviews were conducted until thematic saturation was achieved. RESULTS: Sixteen parents were interviewed. Their experiences were coded into 5 main themes, which can be summarized as: (1) child's symptoms/well-being, (2) parents' grief/isolation, (3) family stress, (4) relationships with providers, and (5) psychological and technical growth. Difficulty with feeding, weight gain, and breathing problems were core physical issues described by participants with associated intense fear. Participants described frustration from not only lack of care coordination, slow diagnoses, and poor communication but also gratitude for providers who served as advocates. Participants described gradual development of knowledge/competencies. CONCLUSIONS: Families of children with PRS have experiences that profoundly affect their lives. Child's physical symptoms/well-being and parents' psychosocial well-being provide content for a future PRS-specific quality-of-life instrument. Concepts that emerged also provide a framework to improve parents' experience and enhance their children's quality of care.

Skorka, K., C. McBryde, J. Copley, P. J. Meredith and N. Reid (2020). "Experiences of Children with Fetal Alcohol Spectrum Disorder and Their Families: A Critical Review." Alcohol Clin Exp Res.School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia.

School of Health, Medical and Applied Sciences, Central Queensland University, Rockhampton, Queensland, Australia.

Child Health Research Centre, The University of Queensland, South Brisbane, Queensland, Australia.

              Evidence suggests that children with fetal alcohol spectrum disorder (FASD) experience challenges across many areas of their daily lives and often require interprofessional supports. Recent studies have emphasized the need for an integrated system of care for children with FASD, incorporating medical, allied health, and education services, to facilitate open communication and support for the complex needs that many children experience. To develop such a system of care, it is important to first understand the impact of FASD on children's functioning during daily activities in different environmental contexts. A critical review of existing research was conducted using a critical interpretive synthesis approach. Results revealed that while many studies discussed impacts at the body functions and structures level of children with FASD, they often did not consider the activity, participation, and environmental factors also contributing to the daily functioning of this population. Several studies discussed caregiver experiences and challenges raising a child with FASD; however, no studies investigated the lived experiences relating to impacts across activities and environments from children's perspectives. In addition, the focus on deficits overshadowed investigation into the strengths of children with FASD, leaving a gap in the picture of their daily lives. Further research is required to determine the strengths that children with FASD demonstrate and the challenges impacting their daily functioning within different environmental contexts. Insights gleaned from such research would support intervention practices to become more holistic and interprofessional.

Smith, L. K., J. Dickens, R. Bender Atik, C. Bevan, J. Fisher and L. Hinton (2020). "Parents' experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study." Bjog 127(7): 868-874.Department of Health Sciences, University of Leicester, Leicester, UK.

Bereavement Specialist Midwife, University Hospitals of Leicester NHS Trust, University of Leicester, Leicester, UK.

Miscarriage Association, Wakefield, UK.

Sands, the Stillbirth and Neonatal Death Charity, London, UK.

Antenatal Results and Choices, London, UK.

Applied Research, Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

              OBJECTIVE: To explore the healthcare experiences of parents whose baby died either before, during or shortly after birth between 20(+0) and 23(+6)  weeks of gestation in order to identify practical ways to improve healthcare provision. DESIGN: Qualitative interview study. SETTING: England through two parent support organisations and four NHS Trusts. SAMPLE: A purposive sample of parents. METHODS: Thematic analysis of semi-structured in-depth narrative interviews. MAIN OUTCOME MEASURES: Parents' healthcare experiences. RESULTS: The key overarching theme to emerge from interviews with 38 parents was the importance of the terminology used to refer to the death of their baby. Parents who were told they were 'losing a baby' rather than 'having a miscarriage' were more prepared for the realities of labour, the birth experience and for making decisions around seeing and holding their baby. Appropriate terminology validated their loss, and impacted on parents' health and wellbeing immediately following bereavement and in the longer term. CONCLUSION: For parents experiencing the death of their baby at the margins between miscarriage, stillbirth and neonatal death, ensuring the use of appropriate terminology that reflects parents' preferences is vital. This helps to validate their loss and prepare them for the experiences of labour and birth. Reflecting parents' language preferences combined with compassionate bereavement care is likely to have a positive impact on parents' experiences and improve longer-term outcomes. TWEETABLE ABSTRACT: Describing baby loss shortly before 24 weeks of gestation as a 'miscarriage' does not prepare parents for labour and birth, seeing their baby and making memories.

Sobotka, S. A., E. Lynch, M. E. Peek and R. J. Graham (2020). "Readmission drivers for children with medical complexity: Home nursing shortages cause health crises." Pediatr Pulmonol 55(6): 1474-1480.Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, The University of Chicago, Chicago, IL.

Section of General Internal Medicine, Department of Pediatrics, The University of Chicago, Chicago, IL.

Division of Critical Care Medicine, Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, Massachusetts.

              OBJECTIVE: Children with medical technology dependence (MTD) are frequently readmitted to the hospital. However, due to their medical fragility, it is often difficult to untangle the root causes for readmissions to identify the most effective preventive approaches. We sought to explore environmental and family factors driving hospital readmissions for children with MTD. DESIGN: Semi-structured, in-person interviews were conducted with state-wide care coordinators for children with MTD in Illinois with at least 1 year of experience. Interview topics related to children with MTD transitioning from hospital-to-home, essential supports for living in the community, and factors which influenced and prevented hospital readmission. The interview guide served as an initial codebook which was iteratively modified as themes emerged. RESULTS: Fifteen care coordinators with on average 6.6 years of experience were interviewed. They described that lack of home nursing was one of the primary drivers of readmissions due to parental exhaustion and lack of medical expertize in the home. Unavoidable medical admissions, a lack of a plan for emergencies, and home environmental factors also contributed to readmissions. CONCLUSION: Hospital readmission is an expected occurrence for children with MTD, yet still may be substantially reduced through consistent, quality home health nursing to bolster family capacity and allow for respite from constant caregiving. Improved incentives for the home health workforce to increase manpower would be ultimately offset by reduced hospitalizations for children with MTD. Additionally, more research is needed to understand which home nursing structures and skills optimally support families in the reality of manpower scarcity.

Taplak, A. S., A. Gurol and S. Polat (2020). "Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies." Journal of Hospice & Palliative Nursing 22(2): 137-144.[Taplak, Ayse Sener; Polat, Sevinc] Yozgat Bozok Univ, Fac Hlth Sci, Erdogan Akdag Campus, TR-66200 Yozgat, Turkey. [Gurol, Ayse] Ataturk Univ, Hlth Serv Vocat Sch, Erzurum, Turkey.

Taplak, AS (reprint author), Yozgat Bozok Univ, Fac Hlth Sci, Erdogan Akdag Campus, TR-66200 Yozgat, Turkey. ayse.taplak@yobu.edu.tr

              This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.

Taylor, J., A. Booth, B. Beresford, B. Phillips, K. Wright and L. Fraser (2020). "Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review." Palliat Med 34(6): 731-775.Department of Health Sciences, University of York, York, UK.

Martin House Research Centre, University of York, York, UK.

Social Policy Research Unit, University of York, York, UK.

Centre for Reviews and Dissemination, University of York, York, UK.

              BACKGROUND: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. AIM: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. DESIGN: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). DATA SOURCES: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. RESULTS: An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. CONCLUSION: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life.

Thieleman, K. and J. Cacciatore (2020). "Effectiveness of a Mindfulness-Based Retreat on Distress and Well-Being in Bereaved Parents." Research on Social Work Practice.[Thieleman, Kara; Cacciatore, Joanne] Arizona State Univ, Sch Social Work, 411 N Cent Ave, Phoenix, AZ 85004 USA.

Thieleman, K (reprint author), Arizona State Univ, Sch Social Work, 411 N Cent Ave, Phoenix, AZ 85004 USA. kthielem@asu.edu

              Purpose: This study evaluated the effectiveness of a grief-focused mindfulness-based retreat on psychological distress (trauma, anxiety, and depression) and well-being (mindfulness and self-compassion) in bereaved parents. Method: A quasi-experimental design with two nonequivalent groups (intervention, comparison) and three observations was used. Results: Mixed-model repeated-measures analysis of variance showed significant reductions in distress at posttest in the intervention group, with significant group differences on four of the seven scales. While reductions were maintained at follow-up, group differences were only significant for one trauma subscale. The intervention group showed significant increases in two of the four mindfulness facets (describe and act with awareness) and self-compassion at posttest, although group differences were not significant and gains were not maintained at follow-up. A third mindfulness facet, nonjudge, increased significantly at follow-up, with significant group differences. Discussion: This approach shows promise for reducing some areas of distress and improving the nonjudging mindfulness facet in bereaved parents.

Toivonen, M., L. Lehtonen, E. Löyttyniemi, S. Ahlqvist-Björkroth and A. Axelin (2020). "Close Collaboration with Parents intervention improves family-centered care in different neonatal unit contexts: a pre-post study." Pediatr Res.Department of Nursing Science, University of Turku, Turku, Finland. mijotoi@utu.fi.

Laurea University of Applied Sciences, Espoo, Finland. mijotoi@utu.fi.

Faculty of Medicine, University of Turku, Turku, Finland.

Hospital District of Southwest Finland, Department of Pediatrics, Turku University Hospital, Turku, Finland.

Department of Biostatistics, University of Turku, Turku, Finland.

Department of Psychology and Speech-Language Pathology, University of Turku, Turku, Finland.

Department of Nursing Science, University of Turku, Turku, Finland.

              BACKGROUND: The quality of family-centered care and parental participation in care in neonatal units differ widely across the world. Appropriate education might be an effective way to support medical staff in neonatal units to collaborate with parents and implement family-centered care. The aim of this study was to evaluate the effects of the educational intervention on the quality of family-centered care in eight Finnish neonatal intensive care units from both the staff and parent perspectives. METHODS: A mixed-method pre-post intervention study was conducted in eight neonatal intensive care units in Finland. Data were collected from staff and parents using the Bliss Baby Charter audit tool and semi-structured interviews. RESULTS: The quality of family-centered care, as assessed by staff and parents, increased significantly after the intervention in all eight units. The intervention was able to help staff define and apply elements of family-centered care, such as shared decision making and collaboration between parents and staff. In interviews, staff described that they learned to support and trust the parents' ability to take care of their infant. CONCLUSIONS: The educational intervention increased the quality of family-centered care and enabled mutual partnership between parents and staff. IMPACT: This study shows that the educational intervention for the whole multi-professional staff of the neonatal unit improved the quality of family-centered care.The Close Collaboration with Parents intervention enabled mutual partnership between parents and staff.It also provides evidence that during The Close Collaboration with Parents intervention staff learned to trust the parents' ability to take care of their infant.

Trandel, E. T., D. Kavalieratos, M. Basile, M. R. Hobler, A. M. Georgiopoulos, E. Chen, J. L. Goggin, C. H. Goss, S. E. Hempstead, A. Faro and E. P. Dellon (2020). "Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members." Pediatr Pulmonol.School of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.

Department of Family and Preventive Medicine, Division of Palliative Medicine, Emory University, Atlanta, Georgia.

Center for Health Innovations and Outcomes Research, Feinstein Institutes for Medical Research, Northwell Health, Manhasset, New York.

Department of Medicine, Division of Pulmonary, Critical Care, and Sleep Medicine, University of Washington, Seattle, Washington.

Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.

Department of Internal Medicine, Pulmonary, Critical Care, and Palliative Medicine, Rush University Medical Center, Chicago, Illinois.

Division of Pulmonary, Critical Care, and Sleep Medicine, University of California San Diego, San Diego, California.

Cystic Fibrosis Foundation, Bethesda, Maryland.

Department of Pediatrics, Division of Pulmonology, University of North Carolina, Chapel Hill, North Carolina.

              BACKGROUND: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. METHODS: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups. RESULTS: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as "very good" at basic pain assessment and "good" at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. CONCLUSIONS: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians' more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.

Uhm, J. Y. and M. Y. Choi (2020). "Mothers' needs regarding partnerships with nurses during care of infants with congenital heart defects in a paediatric cardiac intensive care unit (vol 54, pg 79, 2019)." Intensive and Critical Care Nursing 58.[Uhm, Ju-Yeon] Pukyong Natl Univ, Dept Nursing, Yongso Ro 45, Busan 48513, South Korea. [Choi, Mi-Young] Chungbuk Natl Univ, Dept Nursing Sci, Chungdae Ro 1, Chungbuk 28644, South Korea.

Choi, MY (reprint author), Chungbuk Natl Univ, Dept Nursing Sci, Chungdae Ro 1, Chungbuk 28644, South Korea. myb98@chungbuk.ac.kr

Vance, A. J., S. Docherty and D. H. Brandon (2020). "Inpatient Unit Leaders' Perspectives on Parent Engagement in Neonatal and Pediatric Intensive Care: A Secondary, Qualitative Analysis." Adv Neonatal Care.Institute for Healthcare Policy and Innovation, University of Michigan, and Department of Systems, Populations, and Leadership, School of Nursing, University of Michigan School of Nursing, Ann Arbor (Dr Vance); and Department of Pediatrics, Duke University School of Nursing, and School of Medicine, Duke University, Durham, North Carolina (Drs Docherty and Brandon).

              BACKGROUND: Hospital unit leaders help set the unit's priorities and are responsible for guiding the unit mission and philosophy of care; however, the perspective of leaders in facilitating parent engagement within intensive care units is limited. PURPOSE: The purpose of this study was to explore how medical and nursing unit leaders facilitate parent engagement in intensive care settings. METHODS: Qualitative secondary analysis of 16 semistructured interviews of unit leadership (medical directors and nurse managers). Directed content analysis explored themes within the interviews using systematic strategies to ensure rigor. FINDINGS: Unit leadership described 3 main features of care delivery necessary for supporting parent engagement: (1) culture of care, (2) relationships in care, and (3) environment of care. Communication among providers and parents and timing of decision-making were key areas addressed, along with concerns about physical space limiting parent engagement. Unit leaders discussed how the 3 main features (unit culture, relationships, and physical space) of care delivery were interconnected to optimize parent engagement. IMPLICATIONS FOR PRACTICE: Overall, unit leaders recognized the importance of each feature of care delivery in facilitating engagement. Parent engagement is ultimately influenced by the optimization of delivering inclusive care: the physical space, the policies surrounding medical and nursing care, and the overall culture of the unit. IMPLICATIONS FOR RESEARCH: Future research needs to explore best practices around relationship building and managing space limitations. Further clarification of the needs and expectations of both parents and providers surrounding parent engagement in intensive care settings is needed.

Varişoğlu, Y. and I. Güngör Satilmiş (2020). "The Effects of Listening to Music on Breast Milk Production by Mothers of Premature Newborns in the Neonatal Intensive Care Unit: A Randomized Controlled Study." Breastfeed Med.Depertmant of Nursing, Faculty of Health Science, Istanbul Medipol University, Istanbul, Turkey.

İlkay Güngör Satilmiş's Institution, Florence Nightingale Faculty of Nursing, Istanbul University Cerrahpasa, Istanbul, Turkey.

              Objective: This study was a randomized controlled experiment to determine the effects of listening to music on breast milk production in Turkish mothers with premature newborns. Methods: The study consisted of two groups of randomly selected mothers (n = 20 each) of newborns in the neonatal intensive care unit (NICU) of two university hospitals in Istanbul between November 2017 and November 2018. On the first day, all mothers were provided with training for milking with pumps. On the second through fourth days, mothers in the music group (MG) underwent two sessions of milking with music and a pump for 15 minutes at 11:00 and 16:00; the mothers in the control group underwent two sessions of milking without music. To evaluate stress levels, Spielberger's State-Trait Anxiety Inventory was administered and salivary cortisol tests were taken on the first and final days of the study. Results: The mean age of participants was 28.5 ± 5.3 years, the mean gestational week was 32.21 ± 2.26, and the mean birth weight of the newborns was 1748 ± 533.4 g. The state and total anxiety scores of the MG were statistically low (p < 0.05). There was no difference between the MG and control group in the amount of breast milk produced; however, the final test cortisol levels of the MG group were significantly lower compared with the pretest measurements (p < 0.05). Conclusion: Listening to music in the NICU while breastfeeding can help reduce stress levels in mothers to premature newborns and support breast milk production.

Wang, C. S., M. L. Shyu and Y. L. Lee (2020). "Personality traits and subjective well-being among fathers of preterm infants in Taiwan: a cross-sectional study." J Reprod Infant Psychol: 1-13.Department of Nursing, National Taiwan University Hospital, Taipei, Taiwan.

Department of Health Promotion and Health Education, National Taiwan Normal University, Taipei, Taiwan.

College of Nursing, Taipei Medical University, Taipei, Taiwan.

Yale School of Nursing, Orange, CT, USA.

              Objective: This study examined the association of personality traits and paternal/infant background characteristics with subjective well-being (SWB) among fathers of preterm infants.Background: While studies of parental care of preterm infants have focused on mothers or both parents, studies focusing specifically on fathers are relatively rare. In this study, we provide new information on the personality traits and paternal/infant background characteristics and their association with SWB among fathers of preterm infants.Methods: This study used a cross-sectional design. Participants included fathers of preterm infants hospitalised in the neonatal intensive care unit, neonatal intermediate care nursery, or postpartum ward of a medical centre in northern Taiwan within 5 days of birth. The Personality Inventory Scale and Subjective Well-being Scale were administered and background characteristics of fathers and preterm infants were measured.Results: A total of 104 fathers participated, of whom 73.1% showed a moderate level of SWB. Fathers with higher extraversion and openness exhibited higher SWB, while fathers with higher neuroticism exhibited lower SWB. SWB was also predicted by age, infant weight, family structure, and paternal education level. These factors cumulatively accounted for 48% of the variance in SWB.Conclusion: Fathers' SWB was associated with extraversion, openness, neuroticism, age, education, family structure, and infant weight. The personality traits of fathers should be considered when developing plans for family support after following preterm infant birth. In addition to focusing on maternal well-being, programmes to increase paternal well-being would benefit the families of preterm infants.

Weaver, M. S., T. October, C. Feudtner and P. S. Hinds (2020). ""Good-Parent Beliefs": Research, Concept, and Clinical Practice." Pediatrics.Division of Pediatric Palliative Care, Children's Hospital and Medical Center, Omaha, Nebraska; meweaver@childrensomaha.org.

Department of Critical Care Medicine, Children's National Medical Center, Washington, District of Columbia.

Department of Pediatrics, School of Medicine, The George Washington University, Washington, District of Columbia.

Department of Medical Ethics and Pediatric Advanced Care Team, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and.

Department of Nursing Science, Professional Practice and Quality, Children's National Health System, Washington, District of Columbia.

              Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.

Werk, R. S., D. M. Steinhorn and A. Newberg (2020). "The Relationship Between Spirituality and the Developing Brain: A Framework for Pediatric Oncology." J Relig Health.Monroe Carell Jr. Children's Hospital at Vanderbilt, Vanderbilt University Medical Center, 2200 Children's Way, Nashville, TN, 8161 DOT37232-9760, USA. Rachel.werk@vumc.org.

Divisions of Pediatric Critical Care and Pediatric Palliative Care, Children's National Medical Center, Washington, DC, USA.

Department of Integrative Medicine and Nutritional Sciences, Marcus Institute of Integrative Health, Thomas Jefferson University, Philadelphia, PA, USA.

              Development, whether motor, language, social, or spiritual, is the functional expression of complex brain processes throughout one's life span, the foundations of which are laid in childhood. The effects of cancer, chemotherapy, radiation, and surgical procedures on early brain development have been measured using neuroimaging and developmental assessment tools. We propose that spiritual development may be substantially affected in children with oncological diseases that impact underlying brain processes. By drawing connections between science, spirituality, and medicine, we can better address the spiritual needs of children as they cope with oncological diseases, by mitigating emotional, cognitive, and physical symptoms and improving outcomes.

Wolfe, I. D., J. R. Garrett, B. S. Carter and J. D. Lantos (2020). "Children's Hospital ICU Resource Allocation in an Adult Pandemic." Pediatrics.Children's Mercy Bioethics Center, Kansas City, Missouri 64108 Wolfe370@umn.edu.

Children's Mercy Bioethics Center, Kansas City, Missouri 64108.

Yakobson, D., S. Arnon, C. Gold, C. Elefant, I. Litmanovitz and B. D. Beck (2020). "Music Therapy for Preterm Infants and Their Parents: A Cluster-Randomized Controlled Trial Protocol." J Music Ther 57(2): 219-242.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.

Yehya, N., M. O. Harhay, M. J. Klein, S. L. Shein, B. E. Piñeres-Olave, L. Izquierdo, A. Sapru, G. Emeriaud, P. C. Spinella, H. R. Flori, M. K. Dahmer, A. B. Maddux, Y. M. Lopez-Fernandez, B. Haileselassie, D. D. Hsing, R. S. Chima, A. B. Hassinger, S. L. Valentine, C. M. Rowan, M. C. J. Kneyber, L. S. Smith, R. G. Khemani and N. J. Thomas (2020). "Predicting Mortality in Children With Pediatric Acute Respiratory Distress Syndrome: A Pediatric Acute Respiratory Distress Syndrome Incidence and Epidemiology Study." Crit Care Med 48(6): e514-e522.Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia, PA.

Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA.

Palliative and Advanced Illness Research (PAIR) Center, University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA.

Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Los Angeles and University of Southern California, Los Angeles, CA.

Department of Pediatrics, Division of Pediatric Critical Care Medicine, Rainbow Babies and Children's Hospital and Case Western Reserve University, Cleveland, OH.

Pediatric Critical Care Unit, Hospital Pablo Tobón Uribe, Medellín, Colombia.

Department of Pediatrics, Hospital Militar Central, Bogotá, Colombia.

Department of Pediatrics, Division of Critical Care, University of California Los Angeles Mattel Children's Hospital, Los Angeles, CA.

Department of Pediatrics, Centre Hospitalier Universitaire Sainte-Justine and Université de Montréal, Montreal, QC, Canada.

Department of Pediatrics, Division of Critical Care, Washington University in St. Louis, St. Louis, MO.

Department of Pediatrics, Division of Pediatric Critical Care Medicine, Mott Children's Hospital and University of Michigan, Ann Arbor, MI.

Department of Pediatrics, Children's Hospital Colorado and University of Colorado, Aurora, CO.

Department of Pediatrics, Cruces University Hospital, Bizkaia, Basque Country, Spain.

Department of Pediatrics, Division of Pediatric Critical Care, Stanford University, Palo Alto, CA.

Department of Pediatrics, New York-Presbyterian Hospital and Weill Cornell Medical College, New York, NY.

Department of Pediatrics, Division of Critical Care Medicine, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH.

Department of Pediatrics, Division of Pediatric Critical Care, Oishei Children's Hospital and University of Buffalo, Buffalo, NY.

Department of Pediatrics, Division of Pediatric Critical Care, University of Massachusetts Children's Medical Center, Worcester, MA.

Department of Pediatrics, Division of Critical Care, Riley Hospital for Children and Indiana University, Indianapolis, IN.

Department of Pediatrics, Division of Pediatric Critical Care Medicine, Beatrix Children's Hospital and University of Groningen, Groningen, The Netherlands.

Department of Pediatrics, Division of Pediatric Critical Care Medicine, Seattle Children's Hospital and University of Washington, Seattle, WA.

Department of Pediatrics and Public Health Science, Division of Pediatric Critical Care Medicine, Penn State Hershey Children's Hospital, Hershey, PA.

              OBJECTIVES: Pediatric acute respiratory distress syndrome is heterogeneous, with a paucity of risk stratification tools to assist with trial design. We aimed to develop and validate mortality prediction models for patients with pediatric acute respiratory distress syndrome. DESIGN: Leveraging additional data collection from a preplanned ancillary study (Version 1) of the multinational Pediatric Acute Respiratory Distress syndrome Incidence and Epidemiology study, we identified predictors of mortality. Separate models were built for the entire Version 1 cohort, for the cohort excluding neurologic deaths, for intubated subjects, and for intubated subjects excluding neurologic deaths. Models were externally validated in a cohort of intubated pediatric acute respiratory distress syndrome patients from the Children's Hospital of Philadelphia. SETTING: The derivation cohort represented 100 centers worldwide; the validation cohort was from Children's Hospital of Philadelphia. PATIENTS: There were 624 and 640 subjects in the derivation and validation cohorts, respectively. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The model for the full cohort included immunocompromised status, Pediatric Logistic Organ Dysfunction 2 score, day 0 vasopressor-inotrope score and fluid balance, and PaO2/FIO2 6 hours after pediatric acute respiratory distress syndrome onset. This model had good discrimination (area under the receiver operating characteristic curve 0.82), calibration, and internal validation. Models excluding neurologic deaths, for intubated subjects, and for intubated subjects excluding neurologic deaths also demonstrated good discrimination (all area under the receiver operating characteristic curve ≥ 0.84) and calibration. In the validation cohort, models for intubated pediatric acute respiratory distress syndrome (including and excluding neurologic deaths) had excellent discrimination (both area under the receiver operating characteristic curve ≥ 0.85), but poor calibration. After revision, the model for all intubated subjects remained miscalibrated, whereas the model excluding neurologic deaths showed perfect calibration. Mortality models also stratified ventilator-free days at 28 days in both derivation and validation cohorts. CONCLUSIONS: We describe predictive models for mortality in pediatric acute respiratory distress syndrome using readily available variables from day 0 of pediatric acute respiratory distress syndrome which outperform severity of illness scores and which demonstrate utility for composite outcomes such as ventilator-free days. Models can assist with risk stratification for clinical trials.

Zhao, X., H. Hu, Y. Zhou and Y. Bai (2020). "What are the long-term effects of child loss on parental health? Social integration as mediator." Compr Psychiatry: 152182.School of Labor and Human Resources, Renmin University of China, No. 59, Zhongguancun Street, Haidian District, Beijing 100872, PR China. Electronic address: xtzhao@ruc.edu.cn.

School of Public Administration and Policy, Renmin University of China, No. 59, Zhongguancun Street, Haidian District, Beijing 100872, PR China. Electronic address: hhwruc@126.com.

Guanghua School of Management and Center for Social Research, Peking University, No.5, Yiheyuan Road, Haidian District, Beijing 100871, PR China. Electronic address: yizhou@pku.edu.cn.

Guanghua School of Management, Peking University, No.5, Yiheyuan Road, Haidian District, Beijing 100871, PR China. Electronic address: ybai@gsm.pku.edu.cn.

BACKGROUND: Some bereaved parents experience a decreasing trajectory of grief, while others fail to adapt over the long term and persistently suffer from negative health consequences. This study investigates the mediating role of social integration in the relationship between losing an only child and parental health in a family-oriented society. METHOD: A sample of 1828 bereaved parents and 4739 non-bereaved parents was drawn from a 10-city survey in China. Regression methods were used to examine the impact of child loss on parental health, and Sobel test was applied to examine the mediating role of social integration. RESULTS: Bereaved parents who lost their only child have worse self-rated health and more negative affect than the non-bereaved parents, which lasted for years after the death of the only child. The Sobel test shows that 24.8% of the total effects on self-rated health and 6.7% of the total effects on negative affect can be explained via decreased social integration. The gender of parents and child as well as fertility intentions are important sources of heterogeneity in the Chinese culture. LIMITATION: The results based on cross-sectional data may only reveal correlation rather than causality. The data was retrieved from self-reported questionnaires and there is a lack of objective measures of parental health. Moreover, the detailed mechanisms behind how child loss resulted in less social integration should be further explored. CONCLUSIONS: Significant disparities in health outcomes and social integration were found for bereaved parents relative to the non-bereaved parents. Future work is needed to assess the health of bereaved parents, identify the vulnerable and disadvantaged groups, and design inclusive intervention programs.