1 40 5 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 September 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 September List 2024 URL Address <a href="http://doi.org/10.25259/ijpc_304_2023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.25259/ijpc_304_2023</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 Short-term Non-invasive Ventilation for Children with Palliative Care Needs Publisher An entity responsible for making the resource available Indian Journal of Palliative 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 Human; Child; Respiration Artificial; Palliative Care; Death; Hospitals Pediatric; Child Health Services; Specialization; Ventilator Weaning; Therapy; Malaysia; Retrospective Design; In Infancy and Childhood; Record Review; Utilization; Treatment Outcomes; Continuous Positive Airway Pressure; Methods; Oxygen Therapy; Adverse Effects; Adverse Health Care Event; In Infancy and; Nasal Cannula; Nonexperimental Studies; Noninvasive Procedures; Respiratory Distress Syndrome Acute; Women's Health Services Creator An entity primarily responsible for making the resource Chua KY; Paranchothy M; Ng SF; Lee CC Description An account of the resource Objectives: Non-invasive ventilation (NIV), namely continuous positive airway pressure (CPAP) and bi-level positive airway pressure (BiPAP), delivers mechanical ventilation without endotracheal intubation. Short-term NIV (planned for <21 days during initiation) can be used for the management of acute respiratory distress (ARD) among paediatric palliative patients with "Do Not Resuscitate or Intubate" (DNI) as the ceiling of care. This study aimed to describe the usage of short-term NIV among paediatric palliative patients in a woman and child hospital with a paediatric palliative subspecialty. Materials and methods: A retrospective and observational study was conducted on all paediatric palliative patients who received short-term NIV in Tunku Azizah Hospital Kuala Lumpur, Malaysia, from March 2020 to May 2022. Results: During the study period, short-term NIV was offered on 23 occasions for 20 different children. Indications for short-term NIV include 16 (69.6%) occasions of potentially reversible ARD (NIV Category 1) and 7 (30.4%) occasions of comfort care at the end of life (NIV Category 2). The main cause of ARD was pneumonia (90.3%) due to either aspiration or infection. The modality of NIV used was BiPAP only (14 occasions, 60.9%), CPAP only (three occasions, 13%) and both BiPAP and CPAP (six occasions, 26.1%). The median duration of NIV usage was four days (minimum one day and maximum 15 days). NIV was initiated as an escalation from nasal prong, Ventimask or high-flow mask oxygen on 22 occasions and as weaning down post-extubation on one occasion. For the 22 occasions of escalating therapy, there was significant improvement at six hours compared to pre-NIV in the median heart rate (136 to 121, P=0.002), respiratory rate (40 to 31, P=0.002) and oxygen saturation (96% to 99%, P=0.025). All 17 documented parental impressions of the child's condition post six hours of NIV were that the child had improved. Adverse events during short-term NIV include five episodes (21.7%) of stomach distension, four episodes (17.4%) of skin sores on the face and one episode (4.3%) of excessive drooling. Three patients passed away while on NIV in the hospital. For the other 20 (87%) occasions, patients were able to wean off NIV. Post-weaning off NIV, three patients passed away during the same admission. On 17 occasions, patients were discharged home after weaning off NIV. Conclusion: Usage of short-term NIV in paediatric palliative care, where children have an advanced directive in place indicating DNI, as seen in our study, can be a valuable modality of management for distressing symptoms, in addition to the pharmacological management of breathlessness. This is shown through our study to be of benefit in potentially reversible ARD as well as comfort care at the end of life. Further rigorous studies will need to be conducted for a clearer understanding of short-term NIV that would enable the formulation of guidelines to improve the quality of life and death in children. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.25259/ijpc_304_2023" target="_blank" rel="noreferrer noopener">10.25259/ijpc_304_2023</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 Adverse Effects Adverse Health Care Event Child Child Health Services Chua KY Continuous Positive Airway Pressure Death Hospitals Pediatric Human In Infancy and In Infancy and Childhood Indian Journal Of Palliative Care Lee CC malaysia Methods Nasal Cannula Ng SF Nonexperimental Studies Noninvasive Procedures Oxygen Therapy Palliative Care Paranchothy M Record Review Respiration Artificial Respiratory Distress Syndrome Acute Retrospective Design September List 2024 Specialization Therapy Treatment Outcomes utilization Ventilator Weaning Women's Health 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 October 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 October List 2023 URL Address <a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-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 Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study 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 2023 Subject The topic of the resource Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization Creator An entity primarily responsible for making the resource Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK Description An account of the resource Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-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). 2023 Article Awareness Bedendo A Beresford B BMC Palliative Care Child Child Health Care Clinical Article Education Feltbower RG Female Fraser LK Funding Hackett J Hain R Haynes A Hinde S Human Human Experiment Male Murtagh F Noyes J October List 2040 Oddie S Organization Palliative Therapy Papworth A Phillips B Qualitative Research Semi Structured Interview Specialization Subramanian G Terminal Care Thematic Analysis Vasudevan C Walker G Weatherly H 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 Backlog URL Address <a href="http://doi.org/10.1136/bmj.g3496" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.g3496</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 Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis Publisher An entity responsible for making the resource available Bmj (clinical Research Ed.) Date A point or period of time associated with an event in the lifecycle of the resource 2014 Subject The topic of the resource Hospitalization; Humans; retrospective studies; Palliative Care; patient care team; Cohort Studies; Hospital Mortality; Community Health Services; Specialization; Emergency Service; Hospital Creator An entity primarily responsible for making the resource Seow H; Brazil K; Sussman J; Pereira JL; Marshall D; Austin PC; Husain A; Rangrej J; Barbera L Description An account of the resource OBJECTIVE: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes. DESIGN: Pooled analysis of a retrospective cohort study. SETTING: Ontario, Canada. PARTICIPANTS: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). INTERVENTION: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams' role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day. MAIN OUTCOME MEASURES: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital. RESULTS: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52). CONCLUSIONS: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life. 2014 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmj.g3496" target="_blank" rel="noreferrer">10.1136/bmj.g3496</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). Type The nature or genre of the resource Journal Article 2014 Austin PC Backlog Barbera L Bmj (clinical Research Ed.) Brazil K Cohort Studies Community Health Services Emergency Service Hospital Hospital Mortality Hospitalization Humans Husain A Journal Article Marshall D Palliative Care Patient Care Team Pereira JL Rangrej J Retrospective Studies Seow H Specialization Sussman J 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 Backlog URL Address <a href="http://doi.org/10.12968/ijpn.2014.20.3.143" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.3.143</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: a developing specialty Publisher An entity responsible for making the resource available International Journal Of Palliative Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2014 Subject The topic of the resource Humans; infant; Palliative Care; decision making; Organizational Case Studies; Perinatology; Specialization; Argentina; Palliative Care; Newborn Creator An entity primarily responsible for making the resource Kiman R; Doumic L Description An account of the resource Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on perinatal palliative care and its impact on babies and families along their journey. End-of-life decision-making for babies with an adverse prognosis also remains ethically challenging. This paper provides an overview of perinatal palliative care and its development, and then considers some of the issues affecting this field by looking at single national, institutional, and patient case studies. 2014-03 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.12968/ijpn.2014.20.3.143" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.3.143</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). Type The nature or genre of the resource Journal Article 2014 Argentina Backlog Decision Making Doumic L Humans Infant International Journal of Palliative Nursing Journal Article Kiman R Newborn Organizational Case Studies Palliative Care perinatology Specialization 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 September 2017 List Notes <p>Using Smart Source Parsing ( (pp Date of Publication: 01 Sep 2015</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 Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey Publisher An entity responsible for making the resource available Bmj Supportive & Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2015 Subject The topic of the resource Statistics And Numerical Data; Adolescent; Adult; Cross-sectional Study; England; Female; Health Care Survey; Home Care; Hospice; Hospice Care; Hospital Volunteer; Human; Internet; Male; Organization And Management; Palliative Therapy; Pediatrics; Procedures; Questionnaire; Specialization; Young Adult Creator An entity primarily responsible for making the resource Burbeck R; Low J; Sampson E L; Scott R; Bravery R; Candy B Description An account of the resource OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles. Identifier An unambiguous reference to the resource within a given context 10.1136/bmjspcare-2012-000355 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). 2015 Adolescent Adult BMJ Supportive & Palliative Care Bravery R Burbeck R Candy B Cross-sectional Study England Female Health Care Survey Home Care Hospice Hospice Care Hospital Volunteer Human Internet Low J Male Organization And Management Palliative Therapy Pediatrics Procedures Questionnaire Sampson E L Scott R September 2017 List Specialization Statistics And Numerical Data Young Adult