1 40 6 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 January 2025 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 List 2024 URL Address <a href="http://doi.org/10.1016/j.aucc.2024.07.082" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.aucc.2024.07.082</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 Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care Publisher An entity responsible for making the resource available Australian Critical Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Children; Neonatal care; Paediatric intensive care; Parent experience Creator An entity primarily responsible for making the resource Seaton SE; Manning JC; Colville G; Mackintosh N Description An account of the resource Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the needs of parents who have a child admitted to both of these healthcare settings. Objective: The overall aim of this study was to understand parents' experiences as they navigate the transition between admissions to the NNU and the PICU. This paper reports on one of the themes (creating a home) identified inductively from the dataset. Methods: We used a qualitative research design using semistructured interviews with parents who had a child (or children) who had been admitted to neonatal care after birth and then subsequently were also admitted to a PICU. We recruited a national purposive sample of parents with experiences of having a child treated in an NNU before being admitted to the PICU. We undertook the interviews and transcribed them before taking a reflexive thematic analysis approach. Results: A total of 15 mothers and three fathers, of 17 children, were interviewed between January and March 2022. ‘We identified ‘creating a home’ as a key inductive theme with three subthemes: (i) developing parental roles; (ii) creating a physical home; and (iii) creating core memories. Conclusions: There is a growing cohort of children living with chronic health conditions. In this work, we have explored how their parents establish a home whilst often spending significant periods within the public arena of intensive care. Families across settings need support from healthcare professionals to help them develop their role as parents, build a home, and to create memories together. © 2024 Australian College of Critical Care Nurses Ltd Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.aucc.2024.07.082" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2024.07.082</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). 2024 Australian Critical Care Children Colville G Mackintosh N Manning JC Neonatal Care November List 2024 Paediatric Intensive Care parent experience Seaton SE 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 2021 Special Edition 1 - Low Resource Settings 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 2021 Special Edition 1 - Low Resource Settings URL Address <a href="http://doi.org/10.1186/s12913-020-05805-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-020-05805-2</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 Identifying the Know-Do Gap in Evidence-Based Neonatal Care Practices among Informal Health Care Providers-A Cross-Sectional Study from Ujjain, India Publisher An entity responsible for making the resource available BMC Health Services 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 Adult; Humans; Infant Newborn; Evidence-based practice; Middle Aged; Cross-Sectional Studies; India; Clinical Competence; Evidence-Based Practice; Knowledge; Infant Care; Health Personnel/psychology/statistics & numerical data; Informal healthcare providers; Neonatal care Creator An entity primarily responsible for making the resource Mungai IG; Baghel SS; Soni S; Vagela S; Sharma M; Diwan V; Tamhankar AJ; Lundborg CS; Pathak A Description An account of the resource BACKGROUND: More than a quarter of global neonatal deaths are reported from India, and a large proportion of these deaths are preventable. However, in the absence of robust public health care systems in several states in India, informal health care providers (IHCPs) with no formal medical education are the first contact service providers. The aim of this study was to assess the knowledge of IHCPs in basic evidence-based practices in neonatal care in Ujjain district and investigated factors associated with differences in levels of knowledge. METHODS: A cross-sectional survey was conducted using a questionnaire with multiple-choice questions covering the basic elements of neonatal care. The total score of the IHCPs was calculated. Multivariate quantile regression model was used to look for association of IHCPs knowledge score with: the practitioners' age, years of experience, number of patients treated per day, and whether they attended children in their practice. RESULTS: Of the 945 IHCPs approached, 830 (88%) participated in the study. The mean ± SD score achieved was 22.3 ± 7.7, with a median score of 21 out of maximum score of 48. Although IHCPs could identify key tenets of enhancing survival chances of neonates, they scored low on the specifics of cord care, breastfeeding, vitamin K use to prevent neonatal hemorrhage, and identification and care of low-birth-weight babies. The practitioners particularly lacked knowledge about neonatal resuscitation, and only a small proportion reported following up on immunizations. Results of quantile regression analysis showed that more than 5 years of practice experience and treating more than 20 patients per day had a statistically significant positive association with the knowledge score at higher quantiles (q75(th) and q90th) only. IHCPs treating children had significantly better scores across quantiles accept at the highest quantile (90(th)). CONCLUSIONS: The present study highlighted that know-do gap exists in evidence-based practices for all key areas of neonatal care tested among the IHCPs. The study provides the evidence that some IHCPs do possess knowledge in basic evidence-based practices in neonatal care, which could be built upon by future educational interventions. Targeting IHCPs can be an innovative way to reach a large rural population in the study setting and to improve neonatal care services. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12913-020-05805-2" target="_blank" rel="noreferrer noopener">10.1186/s12913-020-05805-2</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 2021 Special Edition 1 - Low Resource Settings Adult Baghel SS BMC Health Services Research Clinical Competence Cross-sectional Studies Diwan V Evidence-based Practice Health Personnel/psychology/statistics & numerical data Humans India Infant Care Infant Newborn Informal healthcare providers Knowledge Lundborg CS Middle Aged Mungai IG Neonatal Care Pathak A Sharma M Soni S Tamhankar AJ Vagela 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 Special Edition #2 2022 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 Special Edition #2 URL Address <a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0969733019878838</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 Parent moral distress in serious pediatric illness: A dimensional analysis Publisher An entity responsible for making the resource available Nursing Ethics 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; Critical Illness; Ethics of care; Female; Humans; Male; moral distress; neonatal care; palliative care; Parents; pediatric practice; Stress Creator An entity primarily responsible for making the resource Mooney-Doyle K; Ulrich CM Description An account of the resource BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">10.1177/0969733019878838</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 2022 Special Edition 2 - Parent Perspectives Child Critical Illness Ethics of Care Female Humans Male Mooney-Doyle K Moral Distress Neonatal Care Nursing Ethics Palliative Care Parents pediatric practice Stress Ulrich CM 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 February 2021 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 February 2021 List URL Address <a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0969733019878838</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 Parent moral distress in serious pediatric illness: A dimensional analysis Publisher An entity responsible for making the resource available Nursing Ethics 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; Female; Humans; Male; palliative care; Parents/psychology; moral distress; Pediatrics/methods/standards; Critical Illness/psychology/therapy; neonatal care; Child Health/standards; Ethics of care/care ethics; pediatric practice; Stress Psychological/etiology/psychology; theory/philosophical perspectives Creator An entity primarily responsible for making the resource Mooney-Doyle K; Ulrich CM Description An account of the resource BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">10.1177/0969733019878838</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 Child Child Health/standards Critical Illness/psychology/therapy Ethics of care/care ethics February 2021 List Female Humans Male Mooney-Doyle K Moral Distress Neonatal Care Nursing Ethics Palliative Care Parents/psychology pediatric practice Pediatrics/methods/standards Stress Psychological/etiology/psychology theory/philosophical perspectives Ulrich CM 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 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 2017 List Notes <p>1938-2715<br />Kim, Myo-Jing<br />ORCID: http://orcid.org/0000-0002-8296-3382<br />Lee, Jin-Hyeok<br />Lee, Hyoung-Doo<br />Journal Article<br />United States<br />Am J Hosp Palliat Care. 2017 Jan 1:1049909117730024. doi: 10.1177/1049909117730024.</p> 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 Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital Publisher An entity responsible for making the resource available American Journal Of Hospice And Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Decision-making; End-of-life; Ethics; Neonatal Care; Neonatal Intensive Care Unit; Newborns Creator An entity primarily responsible for making the resource Kim MJ; Lee JH; Lee HD Description An account of the resource INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and affecting factors. METHODS: This is a retrospective study of neonates who died between 2001 and 2015 in the neonatal intensive care unit of Dong-A University Hospital in Busan. The types of end-of-life decisions were divided into active resuscitation, withholding treatment, and withdrawing treatment. The study period was divided into 3 time frames using 5-year intervals to investigate changes over time. To identify the associated factors, we analyzed the demographic and clinical characteristics of the neonates and their parents using the chi2 test and independent t test. RESULTS: Of the neonatal deaths included in the analysis (n = 222), active resuscitation, withholding treatment, and withdrawing treatment groups accounted for 73.4%, 25.2%, and 1.4% of cases, respectively. When comparing changes over time, between period 1 (2001-2005), 2 (2006-2010), and 3 (2011-2015), the proportion of active resuscitation decreased significantly, from 80.9% to 60.8%, while that of nonactive resuscitation increased significantly from 19.1% to 39.2%. The factors associated with end-of-life decisions were the clinical condition of the neonate at the time of death, rather than general characteristics or socioeconomic factors. CONCLUSIONS: In Korea, changes in the decisions on end-of-life care in neonates are shifting from active resuscitation to nonactive resuscitation based on clinical conditions. Identifier An unambiguous reference to the resource within a given context 10.1177/1049909117730024 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). 2017 American Journal of Hospice and Palliative Medicine Decision Making end-of-life Ethics Kim MJ Lee HD Lee JH Neonatal Care Neonatal Intensive Care Unit Newborns November 2017 List