1 40 10 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 2024 Special Edition 2 - Low Resource Setting 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 2025 SE2 - LRS URL Address <a href="http://doi.org/10.1016/j.anpedi.2023.11.008" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.anpedi.2023.11.008</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 care in neonatal intensive care units in Iberoamerica: A look from the nursing perspective Publisher An entity responsible for making the resource available Anales de Pediatria Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource terminal care; article; human; grief; follow up; newborn intensive care; neonatal intensive care unit; newborn death; cross-sectional study; medical record; nurse; privacy; newborn nursing; perinatal death; social network Creator An entity primarily responsible for making the resource Montes Bueno MT; Munoz C; Rodriguez S; Sola A Description An account of the resource Introduction: End-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica. Methods: Cross-sectional study, through the administration of an anonymous survey sent to neonatal nursing professionals. The survey included general data and work activity data; existence and contents of ELC protocols in the NICU and training received. The survey was distributed by email and published on official SIBEN social networks. REDCap and STATA 14.0 software were used for data collection and analysis. Results: We obtained 400 responses from nurses from 11 countries in the Ibero-American region. 86% of the respondents are directly responsible for providing ELC, although 48% of them said they had not received training on this subject. Only 67 (17%) state that the NICU in which they work has a protocol that establishes a strategy for performing the ELC. Finally, the actions that are implemented during the ELC are globally infrequent (≤50%) in all the items explored and very infrequent (<20%) in relation to allowing free access to family members, having privacy, providing psychological assistance, register the process in the medical record, assist with bureaucratic processes or grant a follow-up plan for grief. Conclusion: Most of the nursing professionals surveyed are directly responsible for this care, do not have protocols, have not received training, and consider that the ELC could be significantly improved. Strategies for ELCs in the Ibero-American region need to be optimized. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.anpedi.2023.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2023.11.008</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). 2023 2025 SE2 - LRS Anales de Pediatría Article Cross-sectional Study Follow Up Grief Human Medical Record Montes Bueno MT Munoz C Neonatal Intensive Care Unit Newborn Death Newborn Intensive Care newborn nursing Nurse Perinatal Death Privacy Rodriguez S social network Sola A Terminal Care 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 July 2024 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 July List 2024 URL Address <a href="http://doi.org/10.1097/PCC.0000000000003440" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000003440</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 Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU Publisher An entity responsible for making the resource available Pediatric Critical Care Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; Terminal Care; terminal care; article; human; patient care team; dying; Privacy; pediatric intensive care unit; child death; bereavement; clinician; medical staff; family support; privacy; intensive care medicine Creator An entity primarily responsible for making the resource Butler AE; Pasek TA; Clark TJ; Broden EG Description An account of the resource Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/PCC.0000000000003440" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000003440</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 Article Bereavement Broden EG Butler AE Child Child Death Clark TJ Clinician Dying family support Human Intensive Care Medicine July List 2024 Medical Staff Pasek TA Patient Care Team Pediatric Critical Care Medicine Pediatric Intensive Care Unit Privacy Terminal Care 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 May 2024 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 <a href="https://pedpalascnetlibrary.omeka.net/collections/show/123">May List 2024</a> URL Address <a href="http://doi.org/10.1177/02692163241234797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163241234797</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 What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; adult; article; controlled study; female; human; palliative therapy; sibling; clinical article; interpersonal communication; cross-sectional study; communication barrier; therapy; caregiver; workload; semi structured interview; interview; privacy; patient-reported outcome; outcomes research; implementation science Creator An entity primarily responsible for making the resource Scott HM; Coombes L; Braybrook D; Hardardottir D; Roach A; Bristowe K; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Ellis-Smith C; Harding R Description An account of the resource Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim(s): To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design(s): Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. Result(s): All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusion(s): Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.Copyright © The Author(s) 2024. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163241234797" target="_blank" rel="noreferrer noopener">10.1177/02692163241234797</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 Adult Article Bluebond-Langner M Braybrook D Bristowe K Caregiver Child Clinical Article Communication Barrier Controlled Study Coombes L Cross-sectional Study Downing J Ellis-Smith C Farsides B Female Fraser LK Hardardottir D Harding R Human Implementation Science Interpersonal Communication Interview May List 2024 Murtagh FEM Outcomes Research Palliative Medicine Palliative Therapy patient-reported outcome Privacy Roach A Scott HM Semi Structured Interview Sibling Therapy workload 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 March 2023 List 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). 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 March List 2023 URL Address <a href="http://doi.org/10.1136/spcare-2022-HUNC.207" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.207</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 Use of Mobile Cold Sheets in Paediatric Hospice Care Publisher An entity responsible for making the resource available BMJ Supportive and Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource cold stress; Hospice Care; Australia; Child; child parent relation; Cold Temperature; conference abstract; cooling; emergency care; funeral home; Hospice Care; Hospice; Human; learning; Memory; nut; posthumous care; practice guideline; privacy; twins; unlicensed drug use Creator An entity primarily responsible for making the resource Mott C; Oldham K Description An account of the resource After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making opportunities (Oldham, 2021. ehospice. [Int. Child. ed.], Sept.29) when this may have been limited in the acute care setting or families may have been focused on acute care and interventional management. Resources that are required include family support and clinical teams with experience in after death management, and resources to promote cooling. The length of admission provided to families varies across paediatric hospices and depends on a balance of family preferences, policies of the facility based on experience and condition of the body. As such, any resources that can promote optimal cooling facilitate more time and a better experience for families. Hummingbird House Hospice (Brisbane, Australia) and Acorns (West Midlands, UK) are experienced in after death care. Hummingbird House uses innovative mobile cold sheets to best support after death care, now being adopted as practice in Acorns Hospices with collaboration between services. Mobile cooling sheets are inexpensive, simple to use and do not require coolant to be pumped through like 'cuddle cots' or other cooling mat devices. Advantages include decreased reliance on coolant-based technology (more vulnerable to malfunction), ability to facilitate twins (or other multiple births) being laid together, and increased portability to experience 'normal' parenting such as having time outside in a pram. A case study highlights advantages from a family perspective. The organisational barriers to implementing this new practice have included: justifying additional resources to those already available; need for educational resources and organisational guidelines; lack of local experience; concern about unlicensed use of products and correct storage. We hope to share our experiences and learnings with this new technology to increase the options in care available to bereaved families across the UK. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/spcare-2022-HUNC.207" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.207</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). 2022 Australia BMJ Supportive and Palliative Care Child Child Parent Relation cold stress Cold Temperature conference abstract cooling Emergency Care funeral home Hospice Hospice Care Human Learning March List 2023 Memory Mott C nut Oldham K Posthumous Care Practice Guideline Privacy Twins unlicensed drug use 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 2023 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 January List 2023 URL Address <a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003087</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 Designing the physical environment for inpatient palliative care: A narrative review Publisher An entity responsible for making the resource available BMJ Supportive and Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource  Hospice Care; Hospital Care; Hospital Patient; Narrative; Nursing Home; Palliative Therapy; Cinahl; Family Management; Hospice Care; Hospital Care; Medline; PsycINFO; Adult; Built Environment; Child; Comfort; Conception; Data Extraction; Data Synthesis; Emergency Ward; Family Interaction; Family Management; Hospice Care; Hospital Care; Nursing Home Care; Female; Furniture; Human; Human Dignity; Male; Nursing Home; Privacy; Review; Systematic Review; Thematic Analysis Creator An entity primarily responsible for making the resource Wong K; McLaughlan R; Collins A; Philip J Description An account of the resource Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field. Method(s): Three databases were searched: MEDLINE (1946-2020), PsycINFO (1806-2020) and CINAHL (1937-2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care. Result(s): Four main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature. Conclusion(s): The board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.Copyright © Author(s) (or their employer(s)) 2021. 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/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003087</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).  Child  Hospice Care  Hospital Care  Human  Thematic Analysis 2021 Adult BMJ Supportive and Palliative Care Built Environment Cinahl Collins A Comfort Conception data extraction Data Synthesis Emergency Ward Family Interaction Family Management Female Furniture Hospice Care Hospital care Hospital Patient Human Dignity January List 2023 Male McLaughlan R Medline Narrative nursing home Nursing Home Care Palliative Therapy Philip J Privacy Psycinfo Review Systematic Review Wong K 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 April 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 April 2020 List URL Address <a href="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</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 attitudes toward genomic sequencing in children with cardiac disease Publisher An entity responsible for making the resource available Journal of Investigative 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 child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty Creator An entity primarily responsible for making the resource Gal D; Deuitch N; Tang R; Magnus D; Char D Description An account of the resource Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care. 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 April 2020 List Char D Child conference abstract Confidentiality consumer Controlled Study Deuitch N Family Attitudes family planning Gal D genetic discrimination Grounded Theory Health Care System heart center Heart Diseases -- Mortality Human Human Tissue Insurance interrater reliability Journal Of Investigative Medicine Magnus D Perception Privacy Prognosis Resource Allocation Semi Structured Interview sequence analysis Surgery Tang R Transplantation Trust Uncertainty 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 December 2019 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 December 2019 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2019.10.007" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2019.10.007</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 Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study 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 2019 Subject The topic of the resource advance care planning; article; child; consultation; content analysis; conversation; decision making; Flanders; human; interview; law; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; privacy; qualitative research; uncertainty Creator An entity primarily responsible for making the resource Dombrecht L; Piette V; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Cornette L; Beernaert K; Cohen J Description An account of the resource Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. Objectives This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses. Methods We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators. Results Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging). Conclusions Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2019.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.10.007</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). 2019 Advance Care Planning Article Beernaert K Chambaere K Child Cohen J Consultation Content Analysis Conversation Cools F Cornette L December 2019 List Decision Making Deliens L Dombrecht L Flanders Goossens L Human Interview Journal of Pain and Symptom Management Law Naulaers G Neonatal Intensive Care Unit Neonatal Nurse Neonatologist Newborn Perinatal Death Piette V Privacy Qualitative Research Uncertainty 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 March 2019 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 March 2019 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.147</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 Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452) 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 2019 Subject The topic of the resource mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy Creator An entity primarily responsible for making the resource Thienprayoon R; Lane J; Grossoehme D Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</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). Description An account of the resource Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation. 2019 bath Child college Comfort conference abstract Controlled Study Feasibility Study Grossoehme D Human illumination injury Intensive Care Unit Interview Job Satisfaction Journal of Pain and Symptom Management Lane J Light March 2019 List Memory Morality mourning Posthumous Care Privacy Staff Student Terminal Care Thienprayoon R thinking 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 March 2017 List 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 Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives Publisher An entity responsible for making the resource available Journal Of 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 Intensive Care Unit; Posthumous Care; Terminal Care; Child; Family; Hospital Patient; Human; Major Clinical Study; Model; Privacy; Quantitative Study; Staff; United States Creator An entity primarily responsible for making the resource Vesely C; Newman V; Winters Y; Flori H Description An account of the resource Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this care in our hospital. Objective: We hypothesized staff would report a positive experience in providing EOL and/or postmortem (PM) care here and would recommend this to peers. Design: This explorative study summarized room use data and evaluated staff experiences using a voluntary qualitative and quantitative survey. Subjects: The survey was administered to the inpatient interdisciplinary team. Results: From 2011 to 2014, 116 children used the RR, 64% for PM care, and 34% for EOL care. A total of 201 staff responded to the survey. Of them, 90% described the space as a valuable resource to families, 90% reported a preference for using this location versus a hospital unit, and 93% stated they would encourage their peers to do the same. Advantages listed were increased privacy, allowance for more visitors, and a quieter, calmer environment. Challenges included distance from the unit of transfer, managing assignments in two hospital locations, and medication transportation. Overall, there was a measureable decrease in the number of deaths pronounced in the ICU as the number pronounced in the RR increased, illustrating a significant change in practice. Conclusion: This study demonstrated an overwhelmingly positive experience in providing EOL and/or PM care to children in the RR and staff would recommend this to peers. This model of care should be a serious consideration for hospitals in the United States. © Copyright 2017, Mary Ann Liebert, Inc. Identifier An unambiguous reference to the resource within a given context 10.1089/jpm.2016.0070 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 Child Family Flori H Hospital Patient Human Intensive Care Unit Journal of Palliative Medicine Major Clinical Study March 2017 List Model Newman V Posthumous Care Privacy Quantitative Study Staff Terminal Care United States Vesely C Winters Y 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 May 2016 List 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 Perceptions Of Palliative Care In The Nicu. Publisher An entity responsible for making the resource available Advances In Neonatal Care Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Communication; Continuity Of Patient Care; Emotions; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Interviews As Topic; Male; Mothers/psychology; Palliative Care/utilization; Privacy; Qualitative Research; Social Support Creator An entity primarily responsible for making the resource Falck AJ; Moorthy S; Hussey-Gardner B Description An account of the resource BACKGROUND AND PURPOSE: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care. METHODS: In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed. RESULTS: Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil. IMPLICATIONS FOR PRACTICE AND RESEARCH: Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population. 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). 2016 Advances in Neonatal Care Communication Continuity Of Patient Care Emotions Falck AJ Female Humans Hussey-Gardner B Infant Newborn Intensive Care Units Neonatal Interviews As Topic Male May 2016 List Moorthy S Mothers/psychology Palliative Care/utilization Privacy Qualitative Research Social Support