1 40 3 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 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 March List 2025 URL Address <a href="http://doi.org/10.1186/s12904-025-01661-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-025-01661-1</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 Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review 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 2025 Subject The topic of the resource Decision Making; Terminal Care; Child; Humans; Infant; Terminal Care/mt [Methods]; Terminal Care/px [Psychology]; Terminal Care/st [Standards] Creator An entity primarily responsible for making the resource Crowe A; Hurley F; Kiernan G; Kerr H; Corcoran Y; Price J; Reid J; Courtney E; McConnell T; McNeilly P; Lambert V Description An account of the resource Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-025-01661-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-025-01661-1</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 BMC Palliative Care Child Corcoran Y Courtney E Crowe A Decision Making Humans Hurley F Infant Kerr H Kiernan G Lambert V March List 2025 McConnell T McNeilly P Price J Reid J Terminal Care Terminal Care/mt [methods] Terminal Care/px [psychology] Terminal Care/st [standards] 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 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 December 2020 List URL Address <a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1186/s12913-020-05754-w</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 Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study 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 Children and families; Delphi study; Life-limiting neurodevelopmental disability; Services Creator An entity primarily responsible for making the resource Guerin S; Kiernan G; Courtney E; McQuillan R; Ryan K Description An account of the resource BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">10.1186/s12913-020-05754-w</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 BMC Health Services Research Children And Families Courtney E December 2020 List Delphi Study Guerin S Kiernan G Life-limiting neurodevelopmental disability McQuillan R Ryan K Services 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 2018 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 August 2018 List URL Address <a href="http://doi.org/10.1111/cch.12580" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12580</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 Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability Publisher An entity responsible for making the resource available Child: Care, Health and Development Date A point or period of time associated with an event in the lifecycle of the resource 2018 Creator An entity primarily responsible for making the resource Courtney E; Kiernan G; Guerin S; Ryan K; McQuillan R Description An account of the resource BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis. RESULTS: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated. CONCLUSIONS: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/cch.12580" target="_blank" rel="noreferrer noopener">10.1111/cch.12580</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). 2018 August 2018 List Child: Care, Health and Development Courtney E Guerin S Kiernan G McQuillan R Ryan K