1 40 26 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1038/s41390-020-01137-3" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1038/s41390-020-01137-3</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Responses of pediatric palliative care to the COVID-19 pandemic in China Publisher An entity responsible for making the resource available Pediatric Research Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Children's hospitals; China; COVID-19; COVID-19 Pandemic; Pandemic; pediatric palliative care Creator An entity primarily responsible for making the resource Zhou X; Cai S; Guo Q Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1038/s41390-020-01137-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-020-01137-3</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Cai S Children's hospitals China COVID-19 COVID-19 Pandemic Guo Q November 2020 List Pandemic Pediatric Palliative Care Pediatric Research Zhou X Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.jand.2019.06.250" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jand.2019.06.250</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children Publisher An entity responsible for making the resource available Journal of the Academy of Nutrition and Dietetics Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Adolescent; Anthropometry; Body Mass Index; Brazil/epidemiology; Child; Child Nutrition Disorders/*mortality; Critical Illness/*mortality; Female; Humans; Infant; Intensive Care Units; Length of stay; Length of Stay/*statistics & numerical data; Male; malnutrition; Mortality; Nutritional status; Patient Admission/*statistics & numerical data; Patient Discharge/statistics & numerical data; Pediatric intensive care unit; Pediatric/*statistics & numerical data; Predictive Value of Tests; Preschool; Proportional Hazards Models; Prospective Studies; Regression Analysis; Time Factors Creator An entity primarily responsible for making the resource Ventura J C; Hauschild D B; Barbosa E; Bresolin N L; Kawai K; Mehta N M; Moreno Y M F Description An account of the resource BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days of PICU stay that predict 60-day mortality and time to discharge alive from the PICU. DESIGN: Single-center prospective study in Southern Brazil, conducted between July 2013 and February 2016. At PICU admission, children with z scores <-2 for body mass index (BMI)-for-age, mid-upper arm circumference (MUAC)-for-age, and triceps skinfold thickness (TSF)-for-age were considered as undernourished. PARTICIPANTS/SETTING: There were 199 patients, aged <15 years, with PICU stay >48 hours. MAIN OUTCOME MEASURES: Sixty-day mortality and time to discharge alive from the PICU. STATISTICAL ANALYSIS PERFORMED: Cox regression model was applied to determine predictors of 60-day mortality and time to discharge alive from the PICU. RESULTS: Median age was 23.1 months (interquartile range=3.9 to 89.1), and 63% were male, with 18% prevalence of undernutrition at admission by BMI-for-age. Median PICU stay was 7 days (interquartile range=4 to 12), and 60-day mortality was 12%. After adjusting for sex, age, Pediatric Index of Mortality 2, and presence of complex chronic conditions, undernutrition based on BMI-for-age (hazard ratio [HR]=3.75; 95% CI=1.41 to 9.95; P=0.008), MUAC-for-age (HR=7.62; 95% CI=2.42 to 23.97; P=0.001), and TSF-for-age (HR=4.01; 95% CI=1.14 to 14.15; P=0.031) was associated with higher risk of 60-day mortality. Based on MUAC-for-age with the same adjustment model, undernourished children had longer time to discharge alive from the PICU (HR=0.45; 95% CI=0.21 to 0.98; P=0.045). CONCLUSIONS: Undernutrition at PICU admission based on different anthropometric variables was predictive of 60-day mortality and longer time to discharge alive from the PICU. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jand.2019.06.250" target="_blank" rel="noreferrer noopener">10.1016/j.jand.2019.06.250</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Adolescent Anthropometry Barbosa E Body Mass Index Brazil/epidemiology Bresolin N L Child Child Nutrition Disorders/*mortality Critical Illness/*mortality Female Hauschild D B Humans Infant Intensive Care Units Journal of the Academy of Nutrition and Dietetics Kawai K Length Of Stay Length of Stay/*statistics & numerical data Male malnutrition Mehta N M Moreno Y M F Mortality November 2020 List Nutritional Status Patient Admission/*statistics & numerical data Patient Discharge/statistics & Numerical Data Pediatric Intensive Care Unit Pediatric/*statistics & numerical data Predictive Value of Tests Preschool Proportional Hazards Models Prospective Studies Regression Analysis Time Factors Ventura J C Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1186/s12904-020-00652-8</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey Publisher An entity responsible for making the resource available BMC palliative care Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource advance care planning; palliative care; pediatrician; prognosis Creator An entity primarily responsible for making the resource Song I G; Kang S H; Kim M S; Kim C H; Moon Y J; Lee J Description An account of the resource BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. METHOD(S): This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. RESULT(S): Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). CONCLUSION(S): The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00652-8</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Advance Care Planning BMC Palliative Care Kang S H Kim C H Kim M S Lee J Moon Y J November 2020 List Palliative Care Pediatrician Prognosis Song I G Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/1049909120922973</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents Publisher An entity responsible for making the resource available American Journal of Hospice & Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood Creator An entity primarily responsible for making the resource Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Academic Medical Centers American Journal of Hospice & Palliative Medicine Anticipatory Guidance Bereavement Chi Square Test Child Childhood Neoplasms Communication Cousino M K Data Analysis Software Decision Making Descriptive Statistics Family Female Funding Source Health Resource Utilization Human Hutchinson R Male McCaffery H Midwestern United States November 2020 List Parental Attitudes – Evaluation Patient Preference Paul T K Pituch K Professional-family Relations Professional-patient Relations psychosocial Quality Of Life Questionnaires Record Review Retrospective Design Sedig L K Shared Spruit J L Support Terminal Care – In Infancy and Childhood Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2020.09.037" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2020.09.037</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: a qualitative analysis of U.S. Survey Data Publisher An entity responsible for making the resource available Journal of pain and symptom management Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Burnout; Covid-19; Pediatric; Professional; Resilience; Well-being; Work-life balance Creator An entity primarily responsible for making the resource Rosenberg A R; Weaver M S; Fry A; Wiener L Description An account of the resource CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on pediatric palliative care clinicians' personal and professional wellbeing. METHODS: The Palliative Assessment of Needed DEvelopments &Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June, 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19. RESULTS: Of 207 multidisciplinary respondents from 80 U.S. cities, 148 (71%) provided written responses to open-ended questions and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% versus 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving healthcare altogether. Personal benefits included lessons-learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose. CONCLUSION: Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2020.09.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.09.037</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Burnout COVID-19 Fry A Journal of Pain and Symptom Management November 2020 List Pediatric Professional Resilience Rosenberg A R Weaver M S Well-being Wiener L Work-life balance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062" target="_blank" rel="noreferrer noopener">https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062 </a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement Publisher An entity responsible for making the resource available Hospital Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource caregivers; children with special health care needs; gastronomy tube; nutrition Creator An entity primarily responsible for making the resource Nelson K E; Oppedisano S; Patel M L; Mahant S; Cohen E Description An account of the resource OBJECTIVES: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it. METHODS: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding. RESULTS: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay. CONCLUSIONS: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution’s current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support. Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Caregivers Children With Special Health Care Needs Cohen E gastronomy tube Hospital Pediatrics Mahant S Nelson K E November 2020 List Nutrition Oppedisano S Patel M L Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.jnn.2020.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jnn.2020.08.005</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences Publisher An entity responsible for making the resource available Journal of Neonatal Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Children's hospice; Family-centred care; Neonatal; Palliative care; Referral Creator An entity primarily responsible for making the resource Mendizabal-Espinosa R M; Price J E Description An account of the resource Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jnn.2020.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2020.08.005</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Children's Hospice Family-centred Care Journal of Neonatal Nursing Mendizabal-Espinosa R M Neonatal November 2020 List Palliative Care Price J E Referral Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1136/archdischild-2020-319544" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/archdischild-2020-319544</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource End-of-life decisions in neonatal care: a conversation analytical study Publisher An entity responsible for making the resource available Archives of disease in childhood - Fetal and neonatal edition Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource communication; conversation analytical study; End-of-life decisions; neonatal care; neonatologists; parents Creator An entity primarily responsible for making the resource Marlow N; Shaw C; Connabeer K; Aladangady N; Gallagher K; Drew P Description An account of the resource OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conversation analysis. SETTING: Two tertiary neonatal intensive care units. PARTICIPANTS: Consultant neonatal specialists and families. MAIN OUTCOME MEASURES: We used conversation analysis and developed an inductive coding scheme for conversations based on the introduction of limiting life-sustaining treatments and on the parental responses. RESULT(S): From recordings with 51 families, we identified 27 conversations about limiting life support with 20 families and 14 doctors. Neonatologists adopted three broad strategies: (1) 'recommendations', in which one course of action is presented and explicitly endorsed as the best course of action, (2) a 'single-option choice' format (conditional: referring to a choice that should be made, but without specifying or listing options), and (3) options (where the doctor explicitly refers to or lists options). Our conversation analysis-informed coding scheme was based on the opportunities available for parents to ask questions and assert their preference with minimal interactional constraint or pressure for a certain type of response. Response scores for parents presented with conditional formats (n=15, median 5.0) and options (n=10, median 5.0) were significantly higher than for those parents presented with 'recommendations' (n=16, median 3.75; p=0.002) and parents were more likely to express preferences (p=0.005). CONCLUSION(S): Encouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement and less misalignment between the conversational partners. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2020-319544" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-319544</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Aladangady N Archives of disease in childhood - Fetal and neonatal edition Communication Connabeer K conversation analytical study Drew P End-of-life Decisions Gallagher K Marlow N Neonatal Care Neonatologists November 2020 List Parents Shaw C Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.pedn.2020.07.018" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.pedn.2020.07.018</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis Publisher An entity responsible for making the resource available Journal of pediatric nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource end-of-life care; home care; palliative care; pediatrics Creator An entity primarily responsible for making the resource Malcolm C; Knighting K; Taylor C Description An account of the resource PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home. ELIGIBILITY CRITERIA: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care. SAMPLE: Twenty-three papers met the eligibility criteria and were included in the review. RESULT(S): Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care. DISCUSSION AND APPLICATION TO PRACTICE: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families. Copyright © 2020 Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.pedn.2020.07.018" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.07.018</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 End-of-life Care Home Care Journal of Pediatric Nursing Knighting K Malcolm C November 2020 List Palliative Care Pediatrics Taylor C Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1377/hlthaff.2020.01192" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1377/hlthaff.2020.01192</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Variation In State Medicaid Implementation Of The ACA: The Case Of Concurrent Care For Children Publisher An entity responsible for making the resource available Health Affairs Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource act; affordable care; care coordination; children's health; healthcare providers; hospice; medicaid; nursing; payment; state medicaid Creator An entity primarily responsible for making the resource Laird J; Cozad M J; Keim-Malpass J; Mack J W; Lindley L C Description An account of the resource More than 55,000 children die each year in the United States, and hospice is used for very few of them at the end of their lives. Nearly one-third of pediatric deaths are a result of chronic, complex conditions, and the majority of these children are enrolled in Medicaid because of disability status or the severity of their disease. Changes in Medicaid/Children's Health Insurance Program regulations under Section 2302 of the Affordable Care Act require all state Medicaid plans to finance curative and hospice services for children. The section enables the option for pediatric patients to continue curative care while enrolled in hospice. We examined state-level implementation of concurrent care for Medicaid beneficiaries and found significant variability in guidelines across the US. The implementation of concurrent care has fostered innovation yet has added barriers to how pediatric concurrent care has been implemented. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1377/hlthaff.2020.01192" target="_blank" rel="noreferrer noopener">10.1377/hlthaff.2020.01192</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 ACT affordable care Care coordination Children's Health Cozad M J Health Affairs Healthcare Providers Hospice Keim-Malpass J Laird J Lindley L C Mack J W Medicaid November 2020 List Nursing payment state medicaid Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.3389/fped.2020.00483" target="_blank" rel="noreferrer noopener">http://doi.org/​10.3389/fped.2020.00483</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Noninvasive Ventilation in Palliative Care and Ethical Dilemma Publisher An entity responsible for making the resource available Frontiers in Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource decision-making; ethics; noninvasive ventilation; palliative care; pediatric Creator An entity primarily responsible for making the resource Krivec U; Caggiano S Description An account of the resource Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper airway obstruction, neuromuscular diseases, chronic lung/thoracic conditions, and central respiratory drive failure remain the most prevalent indications. However, the need to alleviate respiratory failure related distress has been increasingly recognized in several other conditions. Palliative care in children with life limiting disorders is a complex continuum of activities. In order to provide the most appropriate care for the patients and their families, the management often oscillates between actively curative and purely supportive actions. Despite unprecedented therapeutic advancements, several neurologic, metabolic, hemato-oncologic, respiratory, and other rare diseases remain with no curative options. Besides, attentiveness to relive suffering, awareness, and availability have moved the boundaries of NIV use toward conditions formerly not considered suitable for such care. Still, NIV has limitations and can, if sustained in inappropriate circumstances, fail to provide relief. A structured professional frameshift should be available for support and ethical guidance in order to provide confidence to patients, families and all the involved caregivers. © Copyright © 2020 Krivec and Caggiano. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3389/fped.2020.00483" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00483</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Caggiano S Decision-making Ethics Frontiers in Pediatrics Krivec U Noninvasive Ventilation November 2020 List Palliative Care Pediatric Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.4037/ccn2020710" target="_blank" rel="noreferrer noopener">http://doi.org/​10.4037/ccn2020710</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Perspectives of Pediatric Providers on Patients With Complex Chronic Conditions: A Mixed-Methods Sequential Explanatory Study Publisher An entity responsible for making the resource available Critical Care Nurse Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource complex chronic conditions; mixed-methods study; pediatric intensive care unit; pediatric palliative care; PICU; provider perspectives Creator An entity primarily responsible for making the resource Kobussen T A; Hansen G; Brockman R J; Holt T R Description An account of the resource BACKGROUND: Children with complex chronic conditions present unique challenges to the pediatric intensive care unit, including prolonged length of stay, complex medical regimens, and complicated family dynamics. OBJECTIVES: To examine perspectives of pediatric intensive care unit health care providers regarding pediatric patients with complex chronic conditions, and to explore potential opportunities to improve these patients' care. METHODS: A prospective mixed-methods sequential explanatory study was conducted in a tertiary medical-surgical pediatric intensive care unit using surveys performed with REDCap (Research Electronic Data Capture) followed by semistructured interviews. RESULTS: The survey response rate was 70.6% (77 of 109). Perspectives of health care providers did not vary with duration of work experience. Ten semistructured interviews were conducted. Eight overarching themes emerged from the interviews: (1) the desire for increased formal education specific to pediatric complex chronic care patients; (2) designation of a primary intensivist; (3) modifying delivery of care to include a discrete location for care provision; (4) establishing daily, short-term, and long-term goals; (5) monitoring and documenting care milestones; (6) strengthening patient and family communications with the health care team; (7) optimizing discharge coordination and planning; and (8) integrating families into care responsibilities. CONCLUSIONS: Pediatric intensive care unit health care providers' perspectives of pediatric patients with complex chronic conditions indicated opportunities to refine the care provided by establishing daily goals, coordinating discharge planning, and creating occasions for close communication between patients, families, and providers. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.4037/ccn2020710" target="_blank" rel="noreferrer noopener">10.4037/ccn2020710</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Brockman R J Complex Chronic Conditions Critical Care Nurse Hansen G Holt T R Kobussen T A mixed-methods study November 2020 List Pediatric Intensive Care Unit Pediatric Palliative Care Picu provider perspectives Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1177/0030222818803809" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0030222818803809</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Hospital Practices for Parents Following Perinatal Loss Publisher An entity responsible for making the resource available Omega: Journal of Death & Dying Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Bereavement; Descriptive Statistics; Female; Funding Source; Grief; Hospitals – Turkey; Human; Infant Mortality – Psychosocial Factors – Turkey; Male; Midwives; Nurses; Parental Attitudes; Physicians; Psychosocial; Purposive Sample; Questionnaires; Support; Turkey Creator An entity primarily responsible for making the resource Kalanlar B Description An account of the resource The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire form of Canadian hospitals maternity policies and practices survey was sent to the appropriate respondents in hospitals. The study showed that encouraging parents to have photos of the deceased baby and preparing a remembrance pack were the most problematic issues and were not available at the majority of hospitals. The most common supportive practices in hospitals were the opportunity to see the deceased baby, assisting with funeral options and autopsies, and support for completing the necessary legal documents. The result indicated that hospitals implement varied practices in assisting the bereaved parents. The study recommended developing hospital policies and practices related to perinatal death and supporting families during their loss and grief. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0030222818803809" target="_blank" rel="noreferrer noopener">10.1177/0030222818803809</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Bereavement Descriptive Statistics Female Funding Source Grief Hospitals – Turkey Human Infant Mortality – Psychosocial Factors – Turkey Kalanlar B Male Midwives November 2020 List Nurses Omega: Journal Of Death & Dying Parental Attitudes Physicians psychosocial Purposive Sample Questionnaires Support Turkey Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1097/NJH.0000000000000685</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children Publisher An entity responsible for making the resource available Journal of hospice and palliative nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource children with special health care needs; complex chronic conditions; palliative care; pediatrics Creator An entity primarily responsible for making the resource Johnston E E; Currie E R; Chen Y; Kent E E; Ornstein K A; Bhatia S; Dionne-Odom J N; Rosenberg A R Description An account of the resource There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children with CCCs and identify factors associated with lack of PC awareness. We used the National Cancer Institute's national Health Information National Trends Survey 2018 data to determine the percentage of caregivers of ill children who have PC awareness. After matching, caregiver PC awareness was compared with that of (1) the general survey population, (2) other caregivers, and (3) caregivers not caring for children. We used multivariable regression to determine factors associated with lack of PC awareness. Of 131 caregivers, 60% had "never heard of" PC. Caregivers of children were no more likely to have heard of PC than the general survey population (P = .76), noncaregivers (P = .97), or caregivers of nonchildren (P = .13). Caregivers younger than 40 years and without a college degree were less likely to have PC awareness than their peers. Most caregivers of ill children have no PC awareness, with no more PC awareness than the general population. Nurses caring for children with CCCs can help educate families and other health care team members about PC. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000685</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Bhatia S Chen Y Children With Special Health Care Needs Complex Chronic Conditions Currie E R Dionne-Odom J N Johnston E E Journal of Hospice and Palliative Nursing Kent E E November 2020 List Ornstein K A Palliative Care Pediatrics Rosenberg A R Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1111/jpc.15138" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/jpc.15138</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition Publisher An entity responsible for making the resource available Journal of Paediatrics and Child Health Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource communication; life-limiting illness; Life-threatening condition; parent-child communication; parents; siblings Creator An entity primarily responsible for making the resource Jaaniste T; Tan S C; Aouad P; Trethewie S Description An account of the resource Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed. Copyright © 2020 Paediatrics and Child Health Division (The Royal Australasian College of Physicians) Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jpc.15138" target="_blank" rel="noreferrer noopener">10.1111/jpc.15138</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Aouad P Communication Jaaniste T Journal of Paediatrics and Child Health life-limiting illness Life-threatening Condition November 2020 List parent-child communication Parents Siblings Tan S C Trethewie S Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1055/s-0040-1716481" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1055/s-0040-1716481</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program Publisher An entity responsible for making the resource available American journal of perinatology Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource end-of-life care; end-of-life experiences; NICU staff; professional quality of life Creator An entity primarily responsible for making the resource Hawes K; Goldstein J; Vessella S; Tucker R; Lechner B E Description An account of the resource OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were sent to clinical staff. Evaluation surveys were distributed to participants after each debriefing session. Notes on themes were taken during each session. RESULT(S): More staff attended sessions (p<0.0001) and attended more sessions (p<0.0001) during the postdebriefing intervention epoch compared with the predebriefing epoch. Stress levels associated with the death of a patient whose family the care provider have developed a close relationship with decreased (p=0.0123). An increased number of debriefing session participants was associated with infant age at the time of death (p=0.03). Themes were (1) family and provider relationships, (2) evaluation of the death, (3) team cohesion, (4) caring for one another, and (5) emotional impact. CONCLUSION(S): Bereavement debriefings for NICU staff reduced the stress of caring for dying infants and contributed to staff well-being. KEY POINTS: . Providing end-of-life care in NICU is challenging.. . Debriefings assist staff in coping with grief.. . Staff well-being impacts patient care.. Copyright Thieme. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1055/s-0040-1716481" target="_blank" rel="noreferrer noopener">10.1055/s-0040-1716481</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 American Journal of Perinatology End-of-life Care end-of-life experiences Goldstein J Hawes K Lechner B E NICU staff November 2020 List professional quality of life Tucker R Vessella S Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1111/jan.14527" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/jan.14527</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Managing and sharing research data in children's palliative care: Risks, benefits and imponderables Publisher An entity responsible for making the resource available Journal of advanced nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource pediatric palliative care; research; research data Creator An entity primarily responsible for making the resource Harris N; Noyes J; Fraser L; Lapwood S; Harrop E; Blackburn M; Price J; Chambers L; Bluebond-Langer M Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jan.14527" target="_blank" rel="noreferrer noopener">10.1111/jan.14527</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Blackburn M Bluebond-Langer M Chambers L Fraser L Harris N Harrop E Journal Of Advanced Nursing Lapwood S November 2020 List Noyes J Pediatric Palliative Care Price J Research research data Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">http://doi.org/​10.26444/aaem/119085</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Parents' attitudes towards a difficult situation resulting from the chronic disease of their child Publisher An entity responsible for making the resource available Annals of Agricultural and Environmental Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; Chronic Disease/*psychology; difficult situation; Disabled Persons/psychology; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/*psychology; Poland; Preschool; Psychological Creator An entity primarily responsible for making the resource Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P Description An account of the resource INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Adaptation Adolescent Adult Annals of Agricultural and Environmental Medicine Attitude To Health Bartoszuk-Popko M Brodowicz-Król M Child Children Chronic Disease Chronic Disease/*psychology difficult situation Disabled Persons/psychology Female Guz E Humans Kulbaka E Lutomski P Male Middle Aged November 2020 List paediatric patient Parental Attitudes Parents Parents/*psychology Poland Preschool Psychological Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.7748/ncyp.2020.e1336" target="_blank" rel="noreferrer noopener">http://doi.org/​10.7748/ncyp.2020.e1336</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource National Children's Hospitals Bereavement Network standards for supporting families following the death of a child Publisher An entity responsible for making the resource available Nursing children and young people Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource bereavement; bereavement support; child health; clinical; death; end-of-life care; grief; parents Creator An entity primarily responsible for making the resource Edwards F Description An account of the resource In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support. This article is an introduction to the bereavement support standards developed by the National Children's Hospitals Bereavement Network, a newly formed group of specialist children's nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children's hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families. Copyright © 2020 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.7748/ncyp.2020.e1336" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2020.e1336</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Bereavement Bereavement Support Child Health Clinical Death Edwards F End-of-life Care Grief November 2020 List Nursing Children and Young People Parents Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.wombi.2020.08.011" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.wombi.2020.08.011</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Experience of hope: An exploratory research with bereaved mothers following perinatal death Publisher An entity responsible for making the resource available Women and Birth Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Bereavement; Hope; Hopelessness; Perinatal death; Qualitative research; Women Creator An entity primarily responsible for making the resource de Andrade Alvarenga W; deMontigny F; Zeghiche S; Verdon C; Castanheira Nascimento L Description An account of the resource Problem The negative implications of perinatal death on mothers’ mental health are documented, however little is known about their experience of hope. Background Within the broader literature, hope has contributed to better mental health and bereavement adjustment and often bereaved mothers report the importance of hope for the grieving process. Aim This study aims to explore bereaved mothers’ experience of hope following perinatal death. Methods Individual interviews were conducted with 33 mothers having experienced the death of an infant in the perinatal period. Data from the interviews were analysed using thematic analysis. Findings The mothers’ experience of hope following perinatal loss is organized into three themes: Hope disrupted by perinatal loss; Transformed hope: a new pregnancy challenged by the sense of foreboding of another loss; and Ways to restore and foster hope in life. Discussion Although hope has been a motivating force for mothers to reconnect with their life plan and move on after a loss, it is also negatively affected by the experience of perinatal bereavement, social support, and health professionals’ clinical practice. Conclusion Bereaved mothers have reported a disruption in their experience of hope. While some experience a loss of hope or a sense of hopelessness, others experience a transformation and restoration of hope, which is reinvested in the grieving process. Mothers’ experience of hope highlights the need for the support of a healthcare professional and may contribute to enhanced clinical practice through the promotion of bereavement care, considering the aspects that instil, maintain, and interfere with hope. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.wombi.2020.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.wombi.2020.08.011</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Bereavement Castanheira Nascimento L de Andrade Alvarenga W deMontigny F Hope hopelessness November 2020 List Perinatal Death Qualitative Research Verdon C Women Women and Birth Zeghiche S Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.3389/fped.2020.00556" target="_blank" rel="noreferrer noopener">http://doi.org/​10.3389/fped.2020.00556</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Perinatal Palliative Care Birth Planning as Advance Care Planning Publisher An entity responsible for making the resource available Frontiers in Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource advance care planning; birth plan; life-limiting diagnosis; neonatal; perinatal palliative care Creator An entity primarily responsible for making the resource Cortezzo D E; Ellis K; Schlegel A Description An account of the resource Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3389/fped.2020.00556" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00556</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Advance Care Planning birth plan Cortezzo D E Ellis K Frontiers in Pediatrics life-limiting diagnosis Neonatal November 2020 List Perinatal Palliative Care Schlegel A Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.3389/fped.2020.574121" target="_blank" rel="noreferrer noopener">http://doi.org/​10.3389/fped.2020.574121</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Neonatal End-of-Life Symptom Management Publisher An entity responsible for making the resource available Frontiers in Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource end-of-life; neonatal; perinatal palliative care; pharmacological management; symptom management Creator An entity primarily responsible for making the resource Cortezzo D E; Meyer M Description An account of the resource Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering. Parents hope their child will have a peaceful death and will not feel pain. A significant component of end-of-life care is high quality symptom evaluation and management. It is important that neonatal providers are knowledgeable in symptom management to address common sources of suffering and distress for babies and their families at the end-of-life (EOL). Recent findings: Medically complex neonates with life-threatening conditions are a unique patient population and there is little research on end-of-life symptom assessment and management. While there are tools available to assess symptoms for adolescents and adults, there is not a recognized set of tools for the neonatal population. Nonetheless, it is widely accepted that neonates experience significant symptoms at end-of-life. Most commonly acknowledged manifestations are pain, dyspnea, agitation, and secretions. In the absence of data and established guidelines, there is variability in their clinical management. This contributes to provider discomfort and inadequate symptom control. Summary: End-of-life symptom assessment and management is an important component of neonatal end-of-life care. While there remains a paucity of studies and data, it is prudent that providers adequately manage symptoms. Likewise, it is important that providers are educated so that they can effectively guide families through the dying process by discussing disease progression, physical changes, and providing empathetic support. In this review, the authors make recommendations for non-pharmacological and pharmacological management of end-of-life symptoms in neonates. © Copyright © 2020 Cortezzo and Meyer. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3389/fped.2020.574121" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574121</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Cortezzo D E end-of-life Frontiers in Pediatrics Meyer M Neonatal November 2020 List Perinatal Palliative Care pharmacological management Symptom Management Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1177/0030222820959941" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0030222820959941</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context Publisher An entity responsible for making the resource available Omega Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource child; death; end-of-life; location of death; planning Creator An entity primarily responsible for making the resource Coombs S; Aouad P; Jaaniste T Description An account of the resource Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0030222820959941" target="_blank" rel="noreferrer noopener">10.1177/0030222820959941</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Aouad P Child Coombs S Death end-of-life Jaaniste T Location Of Death November 2020 List Omega planning Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1111/jnu.12600" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/jnu.12600</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross-Sectional Survey Publisher An entity responsible for making the resource available Journal of nursing scholarship Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource attitude; infant; neonatal nursing; newborn; nurses; palliative care Creator An entity primarily responsible for making the resource Cerratti F; Tomietto M; Della Pelle C; Kain V; Di Giovanni P; Rasero L; Cicolini G Description An account of the resource PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing care. METHOD(S): This study was conducted from January to September 2015 and involved Italian nurses employed in Level III neonatal intensive care units in 14 hospitals in northern, central, and southern Italy. A modified version of the Neonatal Palliative Care Attitudes Scale (NiPCAS) was adopted to assess nurses' attitudes. FINDINGS: A total of 347 neonatal nurses filled out the questionnaire. The majority were female (87.6%), with a mean age of 40.38 (+/-8.3) years. The mean score in the "organization" factor was 2.71 (+/-0.96). The "resources" factor had a mean score of 2.44 (+/-1.00), while the "clinician" factor had a mean score of 3.36 (+/-0.90), indicating the main barriers to and facilitators of implementing palliative nursing care. CONCLUSION(S): Italian neonatal nurses may face different obstacles to delivering neonatal palliative care and to improve their attitudes in this field. In the Italian context, no facilitators of, only barriers to, palliative care delivery were identified. CLINICAL RELEVANCE: Nurses' attitudes towards neonatal palliative care are essential to supporting nurses, who are constantly exposed to the emotional and moral distress connected with this field of end-of-life nursing care. Copyright © 2020 Sigma Theta Tau International. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jnu.12600" target="_blank" rel="noreferrer noopener">10.1111/jnu.12600</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Attitude Cerratti F Cicolini G Della Pelle C Di Giovanni P Infant Journal Of Nursing Scholarship Kain V Neonatal Nursing Newborn November 2020 List Nurses Palliative Care Rasero L Tomietto M Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1136/bmjopen-2019-034817" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/bmjopen-2019-034817</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource My child's legacy: A mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives Publisher An entity responsible for making the resource available BMJ Open Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource bereavement; legacy-making; mixed-methods study; neonatal intensive care unit; NICU; parental perspectives; provider perspectives Creator An entity primarily responsible for making the resource Bourque C J; Dahan S; Mantha G; Reichherzer M; Janvier A Description An account of the resource Objective Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them. Design/methods Mixed methods convergent analysis. Setting Canadian paediatric tertiary care university hospital. Participants All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires. Results Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects. Conclusion(s) With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation. Copyright © Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjopen-2019-034817" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034817</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Bereavement Bmj Open Bourque C J Dahan S Janvier A legacy-making Mantha G mixed-methods study Neonatal Intensive Care Unit Nicu November 2020 List Parental Perspectives provider perspectives Reichherzer M Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2020 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2020.08.033" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2020.08.033</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Charting the Territory: End-of-Life Trajectories for Children with Complex Neurological, Metabolic and Chromosomal Conditions Publisher An entity responsible for making the resource available Journal of pain and symptom management Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource DNAR orders; pediatrics; terminal care Creator An entity primarily responsible for making the resource Bao D; Feichtinger L; Andrews G; Pawliuk C; Steele R; Siden H H Description An account of the resource OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited in the Charting the Territory (CTT) study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders and care provided preceding and during the end-of-life. METHOD(S): Of the 275 children enrolled in the CTT study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions and medical information were collected via chart review, interviews and surveys. RESULT(S): 51 of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n=2) to time of death (n=3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children. CONCLUSION(S): While much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering. Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2020.08.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.033</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Andrews G Bao D Charting the territory DNAR orders Feichtinger L Journal of Pain and Symptom Management November 2020 List Pawliuk C Pediatrics Siden H H Steele R Terminal Care