1
40
9
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Dublin Core
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Title
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April 2021 List
Text
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April 2021 List
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
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2021
Subject
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systematic review; hospice and palliative medicine; bereavement; father grief
Creator
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McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
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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
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
-
Dublin Core
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Title
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.03.016</a>
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Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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COVID-19; global; impact; pediatric palliative care; survey
Creator
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McNeil MJ; Kaye EC; Vedaraju Y; Baker JN; Devidas M; Downing J; Graetz D; Ranadive R; Rosenberg AR; Wiener L; Weaver MS
Description
An account of the resource
Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. Results: One hundred and fifty-six providers were included in the final analysis with 59 countries and 6 continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation. Conclusions: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. Article Summary: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.016</a>
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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
Baker JN
COVID-19
Devidas M
Downing J
global
Graetz D
Impact
Journal of Pain and Symptom Management
Kaye EC
May 2021 List
McNeil MJ
Pediatric Palliative Care
Ranadive R
Rosenberg AR
Survey
Vedaraju Y
Weaver MS
Wiener L
-
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
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June 2022 List
Text
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June 2022 List
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<a href="http://doi.org/10.1002/cam4.4696" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cam4.4696</a>
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Title
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"You are not alone": Connecting through a bereaved parent mentor program for parents whose child died of cancer
Publisher
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Cancer Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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bereaved parents; bereavement; grief; pediatric palliative care; peer-to-peer mentorship
Creator
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McNeil MJ; Kiefer A; Woods C; Barnett B; Berry-Carter K; Clark L; Mandrell BN; Snaman J; Kaye EC; Baker JN
Description
An account of the resource
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. METHODS: Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. RESULTS: A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. CONCLUSION: This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents.
Identifier
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<a href="http://doi.org/10.1002/cam4.4696" target="_blank" rel="noreferrer noopener">10.1002/cam4.4696</a>
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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
April 2022 List
Baker JN
Barnett B
Bereaved Parents
Bereavement
Berry-Carter K
Cancer Medicine
Clark L
Grief
Kaye EC
Kiefer A
Mandrell BN
McNeil MJ
Pediatric Palliative Care
peer-to-peer mentorship
Snaman J
Woods C
-
Dublin Core
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Title
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2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.1245" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.1245</a>
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Title
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Physician Perceptions of Palliative Care for Children With Cancer in Latin America
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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children with cancer; Pediatric palliative care; physician perceptions
Creator
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McNeil MJ; Ehrlich BS; Wang H; Vedaraju Y; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gomez Garcia W; Graetz DE; Kaye EC; Metzger ML; Sabato Danon CV; Devidas M; Baker JN; Agulnik A; Assessing Doctors' Attitudes on Palliative Treatment Latin America Study Group
Description
An account of the resource
Importance: The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care. Objective: To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. Design, Setting, and Participants: This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts. Main Outcomes and Measures: The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data. Results: A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC. Conclusion and Relevance: Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.1245" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.1245</a>
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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
2022 Special Edition Low Resource Setting Issue
Agulnik A
Assessing Doctors' Attitudes on Palliative Treatment Latin America Study Group
Baker JN
Bustamante M
children with cancer
Devidas M
Dussel V
Ehrlich BS
Friedrich P
Garcia Quintero X
Gillipelli SR
Gomez Garcia W
Graetz DE
JAMA Network Open
Kaye EC
McNeil MJ
Metzger ML
Pediatric Palliative Care
physician perceptions
Sabato Danon CV
Vedaraju Y
Wang H
-
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
2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1200/go.21.00270" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.21.00270</a>
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Title
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Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia
Publisher
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JCO Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
advocacy; children with cancer; pediatric palliative care
Creator
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Ehrlich BS; Yakimkova T; Batmunkh T; Mishkova V; Movsisyan N; Kirgizov K; Borisevich M; Kizyma R; Graetz DE; McNeil MJ; Vinitsky A; Smelov V; Corbex M; Lam CG; Kaye EC; Baker JN; Agulnik A
Description
An account of the resource
PURPOSE: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.
Identifier
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<a href="http://doi.org/10.1200/go.21.00270" target="_blank" rel="noreferrer noopener">10.1200/go.21.00270</a>
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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
2022 Special Edition Low Resource Setting Issue
Advocacy
Agulnik A
Baker JN
Batmunkh T
Borisevich M
children with cancer
Corbex M
Ehrlich BS
Graetz DE
JCO Global Oncology
Kaye EC
Kirgizov K
Kizyma R
Lam CG
McNeil MJ
Mishkova V
Movsisyan N
Pediatric Palliative Care
Smelov V
Vinitsky A
Yakimkova T
-
Dublin Core
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Title
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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/10.1200/GO.21.00102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/GO.21.00102</a>
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Title
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Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers
Publisher
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JCO Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Low resource setting; oncology
Creator
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Namisango E; Bhakta N; Wolfe J; McNeil MJ; Powell RA; Kibudde S; Luyirika EBK; Mulema V; Feudtner C; Baker JN
Description
An account of the resource
PURPOSE: The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa. METHODS: This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development. RESULTS: We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans. CONCLUSION: This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems.
Identifier
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<a href="http://doi.org/10.1200/GO.21.00102" target="_blank" rel="noreferrer noopener">10.1200/GO.21.00102</a>
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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
2021 Special Edition 1 - Low Resource Settings
Baker JN
Bhakta N
Feudtner C
JCO Global Oncology
Kibudde S
Low resource setting
Luyirika EBK
McNeil MJ
Mulema V
Namisango E
Oncology
Powell RA
Wolfe J
-
Dublin Core
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Title
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April 2023 List
Text
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Citation List Month
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.01.021</a>
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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
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Measuring Pediatric Palliative Care Quality: Challenges and Opportunities
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; Pediatric palliative care; quality measurement; quality of care; quality improvement
Creator
An entity primarily responsible for making the resource
Boyden JY; Bogetz JF; Johnston EE; Thienprayoon R; Williams CSP; McNeil MJ; Patneaude A; Widger KA; Rosenberg AR; Ananth P
Description
An account of the resource
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.021</a>
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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
Ananth P
April List 2023
Bogetz JF
Boyden JY
Johnston EE
Journal of Pain and Symptom Management
McNeil MJ
Palliative Care
Patneaude A
Pediatric Palliative Care
Quality Improvement
quality measurement
Quality Of Care
Rosenberg AR
Thienprayoon R
Widger KA
Williams CSP
-
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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cam4.5213</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 adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia
Publisher
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Cancer Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; pediatric palliative care; Terminal Care; education; Palliative Care/methods; Curriculum; Covid-19; Terminal Care; pediatric oncology; Eurasia; Enteropathogenic Escherichia coli
Creator
An entity primarily responsible for making the resource
McNeil MJ; Ehrlich B; Yakimkova T; Wang H; Mishkova V; Bezler Z; Kumirova E; Madni A; Movsisyan N; Williams K; Baizakova B; Borisevich M; Chatman G; Erimbetova I; Quintero XG; Golban R; Kirby B; Nunez P; Ranadive R; Sakhar N; Sonnenfelt J; Volkova A; Moreira D; Friedrichsdorf SJ; Wolfe J; Remke S; Hauser J; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.
Identifier
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<a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener">10.1002/cam4.5213</a>
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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
2023 SE5 - Low Resource Setting
Agulnik A
Baizakova B
Baker JN
Bezler Z
Borisevich M
Cancer Medicine
Chatman G
Child
COVID-19
Curriculum
Devidas M
Education
Ehrlich B
Enteropathogenic Escherichia coli
Erimbetova I
Eurasia
Friedrichsdorf SJ
Golban R
Hauser J
Humans
Kirby B
Kumirova E
Madni A
McNeil MJ
Mishkova V
Moreira D
Movsisyan N
Nunez P
Palliative Care/methods
Pediatric Oncology
Pediatric Palliative Care
Quintero XG
Ranadive R
Remke S
Sakhar N
Sonnenfelt J
Terminal Care
Volkova A
Wang H
Williams K
Wolfe J
Yakimkova T
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.51496</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
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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
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JAMA Network Open
Date
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2023
Subject
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Humans; Child; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
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McNeil MJ; Ehrlich B; Wang H; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gómez García W; Graetz D; Kaye EC; Metzger M; Sabato Danon CV; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. OBJECTIVES: To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. DESIGN, SETTING, AND PARTICIPANTS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. MAIN OUTCOMES AND MEASURES: The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. RESULTS: A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. CONCLUSIONS AND RELEVANCE: This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.51496</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
2023 SE5 - Low Resource Setting
Agulnik A
Baker JN
Bustamante M
Child
Devidas M
Dussel V
Ehrlich B
Female
Friedrich P
Garcia Quintero X
Gillipelli SR
Gomez Garcia W
Graetz D
Humans
JAMA Network Open
Kaye EC
Latin America
McNeil MJ
Metzger M
Neoplasms/therapy
Only Child
Palliative Care
Physicians
Quality Of Life
Sabato Danon CV
Wang H