1 40 2 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 August 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 August List 2025 URL Address <a href="http://doi.org/10.1017/cts.2024.930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/cts.2024.930</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 The case for investigating the palliative needs of children in foster care: A call to action Publisher An entity responsible for making the resource available Journal of Clinical and Translational Science Date A point or period of time associated with an event in the lifecycle of the resource 2025 Creator An entity primarily responsible for making the resource Cohen RS; Wright R Description An account of the resource Objectives/Goals: The purpose of this study was to document the publicly available literature, measurement tools, secondary data, and expert perspective on the intersectional care gaps and disparities of children with palliative needs in foster care. Methods/Study Population: Four data collection methods determined the frontier of available information on the palliative needs of children in foster care. A literature review assessed the quality and content of published evidence. A catalogue of relevant measures tools and validation results determined what psychometric tools exist for the population, how well they performed in validation studies, and if any incorporated community members in their development. The National Data Archive for Child Abuse and Neglect was consulted to assess whether existing secondary data was fit for purpose. Informal interviews will be conducted with subject matter experts (pediatrics, palliative care, foster care) to determine the legitimacy and urgency of the problem. Results/Anticipated Results: Health inequities among children in foster care and children with medical complexity (CMC) suggest a strong likelihood of unmet palliative care needs for CMC in foster care; however, no literature or data describe the scope and severity, and few insights support development of safe and supportive interventions to meet these needs. No national publicly available datasets include both foster-related case or placement information and diagnosis or service-specific data, including Medicaid data and the Adoption and Foster Care Analysis and Reporting System (AFCARS). No work has been published integrating foster parents or former foster youth input on palliative needs. Participatory action research methodologies with critically ill patients have led to improvements in patient experience and clinical care. Discussion/Significance of Impact: The lack of data, community engagement, and validated measures to identify palliative needs of children in foster care stymie efforts to identify and correct health inequities. Participatory action research is needed to meaningfully engage foster and health care partners to determine what palliative care needs should be prioritized and measured. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/cts.2024.930" target="_blank" rel="noreferrer noopener">10.1017/cts.2024.930</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). 2025 August List 2025 Cohen RS Journal of Clinical and Translational Science Wright 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 October 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 October 2021 List URL Address <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1097/NJH.0000000000000786</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 Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature 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 2021 Subject The topic of the resource adolescents and young adults; advance directives; goals of care; neuromuscular disease; palliative care Creator An entity primarily responsible for making the resource Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R Description An account of the resource The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care. Copyright © 2021 by The Hospice and Palliative Nurses Association. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000786</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). 2021 adolescents and young adults Advance Directives Baker DJ Battista V D'Aoust RF Goals Of Care Journal of Hospice and Palliative Nursing Neuromuscular Disease October 2021 List Palliative Care Sabri B Trimarchi T Wright R