1
40
98
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February 2024 List
Text
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February List 2024
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<a href="http://doi.org/10.7202/1108406ar" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7202/1108406ar</a>
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The Curative, the Palliative… What Does It Matter? The Experience of Parents Who Accompanied Their Child Through Serious Illness and End of Life
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Enfances, Familles, Generations
Date
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2023
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child; pediatrics; end of life; parent; palliative; care; critical illness; accompaniment; therapeutic relationship
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Fortin S; Lessard S; Lajeunesse A
Description
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Research Framework: In serious illness, the proliferation of therapeutic possibilities often delays the moment when death is foreseen and when palliative care, too often associated with the end of life and death, is introduced into patients’ care paths. In this context, pediatric palliative care tries to play an active role in the care relationship, beyond the idea of treatments for recovery. Objectives: Our aim is to better understand the moment when palliative care becomes a possibility in the trajectory of serious illness, and how it is represented. We examine how palliative care fits into the parents’ experience, as well as the way in which their experience of serious illness, and more so the relational dimension of the end of life, is expressed. Methodology: We draw on the testimonies of parents whose children suffered major illness and death. Through individual semi-structured interviews between 2017 and 2019, we collected the stories of 16 Montreal children and adolescents (10 boys and 6 girls aged between a few weeks to 19 years) with a genetic or rare disease, cancer or multiple chronic conditions of migrant and non-migrant background. Results: Not only is the type of illness an important figure in the palliative care trajectory, care and the families’ profiles also shape their perception of a (nonetheless) positive experience of their child’s end of life. Conclusions: Curative/palliative therapeutic perspectives have little bearing on our participants’ satisfaction with care at the end of life, as long as a therapeutic trust bond is present between the family and the health care team. Both positively and negatively, this bond of trust influences the pediatric care relationships and major illness trajectories, as well as the end-of-life experiences of loved ones. Contribution: Through the experiences of children at the end of life as shared (mostly) by mothers, this paper discusses both curative and palliative perspectives as chosen by the parents of children facing a poor prognosis. Beyond the different philosophies that inhabit these approaches, the quality (and continuity) of the relationships established with care providers is a determining factor in the quality of the experiences documented through our study. © 2023 Centre - Urbanisation Culture Societe de l'INRS. All rights reserved.
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<a href="http://doi.org/10.7202/1108406ar" target="_blank" rel="noreferrer noopener">10.7202/1108406ar</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
accompaniment
CARE
Child
Critical Illness
End Of Life
Enfances, Familles, Generations
February List 2024
Fortin S
Lajeunesse A
Lessard S
Palliative
Parent
Pediatrics
therapeutic relationship
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Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fpain.2023.1127800" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fpain.2023.1127800</a>
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Regional blocks for pain control at the end of life in pediatric oncology
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Frontiers in Pain Research
Date
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2023
Subject
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palliative care; end of life; pain management; pediatric oncology; continuous nerve block; single-shot nerve block
Creator
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Cuviello A; Cianchini de la Sota A; Baker J; Anghelescu D
Description
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BACKGROUND: Pain management at the end of life is a fundamental aspect of care and can improve patients' quality of life. Interventional approaches may be underutilized for pediatric cancer patients. OBJECTIVE: To describe a single institution's 10 years of experience with regional pain management at the end of life in pediatric oncology. METHODS: A retrospective cohort study of 27 patients with pediatric cancer who died between April 2011 and December 2021 and received continuous nerve block (CNB) catheters or single-shot nerve blocks (SSBs) during their last three months of life. The type of blocks, analgesic efficacy, and palliative care involvement were evaluated. RESULTS: Twenty-two patients (81.5%) had solid tumor diagnoses, including carcinomas, sarcomas, and neuroblastoma. Most (59%) patients received CNB catheters, and 12 patients (44%) received SSBs for pain control. The mean pain score decreases for CNB catheters and SSBs after interventions were -2.5 and -2.8, respectively, on an 11-point scale. Decreases in opioid patient-controlled analgesia dosing requirements were noted in 56% of patients with CNB catheters; likewise, in 25% of patients with SSBs at 24 h and in 8% at 5 days after interventions. Nearly all patients had PC involvement and received care from pain specialists (96% and 93%, respectively). Twenty-three (85%) had physician orders for scope of treatment orders completed before death. CONCLUSION: Regional pain control interventions can be effective and safe for relieving regional pain and suffering in dying children and young adults. The collaboration between palliative care and pain management specialists at the end of life can help alleviate suffering and improve quality of life.
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<a href="http://doi.org/10.3389/fpain.2023.1127800" target="_blank" rel="noreferrer noopener">10.3389/fpain.2023.1127800</a>
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2023
2023 SE3 - Oncology
Anghelescu D
Baker J
Cianchini de la Sota A
continuous nerve block
Cuviello A
End Of Life
Frontiers in Pain Research
Pain Management
Palliative Care
Pediatric Oncology
single-shot nerve block
-
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0063</a>
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Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
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Journal of Palliative Medicine
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; Referral and Consultation; advance care planning; end of life; childhood cancer; supportive care; pediatric oncology
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Lee A; DeGroote NP; Brock KE
Description
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Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0063</a>
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2023
2023 SE3 - Oncology
Advance Care Planning
Brock KE
Childhood Cancer
DeGroote NP
End Of Life
Journal of Palliative Medicine
Lee A
Palliative Care
Pediatric Oncology
Pediatric Palliative Care
Referral And Consultation
Supportive Care
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.soncn.2023.151474</a>
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A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
Publisher
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Seminars in Oncology Nursing
Date
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2023
Subject
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Parents; Children; End of life; Cancer; Family-centered care; Systematic review
Creator
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Sheehan S; Hanna JR; Drury A; McCance T; Semple CJ; O'Neill C
Description
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OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying with cancer who have dependent children. DATA SOURCES: The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search strategy was developed with assistance of subject librarians and peer-reviewed using the Peer Review of Electronic Search Strategies tool. A search of MEDLINE OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC electronic databases and gray literature was conducted. Quality assessment was conducted on included studies. Data synthesis was conducted using a convergent integrated approach. CONCLUSION: The review identified just two educational interventions, highlighting the dearth of educational interventions available to HSCPs to provide supportive care to families when a parent is at EoL with cancer. The identified interventions were of good methodological quality and were positively evaluated by participants, enhancing their confidence to engage in EoL conversations. It is imperative that interventions that use robust evaluation methods are developed and made accessible to HSCPs. IMPLICATIONS FOR NURSING PRACTICE: The review highlights the urgent need for the development of interventions for HSCPs to provide supportive care to families when a parent is at EoL with cancer. This is a fundamental aspect of care, and it is imperative that accessible educational interventions are developed to improve the quality of care and reduce distress for patients and their families.
Identifier
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<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2023.151474</a>
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2023
2023 SE3 - Oncology
Cancer
Children
Drury A
End Of Life
Family-centered Care
Hanna JR
McCance T
O'Neill C
Parents
Seminars In Oncology Nursing
Semple CJ
Sheehan S
Systematic Review
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0132" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0132</a>
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Title
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Gasping in Dying Children: Health Care Professionals' Feelings and Knowledge
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Journal of Palliative Medicine
Date
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2023
Subject
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Child; pediatrics; critical care; knowledge; end of life; Only Child; healthcare professionals; emotions
Creator
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Pierron C; Maillard A; Farnoux C; Grimaud M; Bourgeois FL
Description
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Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488 HCPs (physicians, nurses, and nursing assistants) of 2 NICUs and 2 PICUs. Questions were about HCPs' feelings when confronted with gasping, their knowledge, and their opinions on what to tell family members. Results: Responses were obtained from 248 staff members. Of the respondents, 43% felt that gasping was painful to the patient and most felt that witnessing gasps was distressing for the parents, and 77% reported being distressed by witnessing gasps. Conclusions: Efforts are needed to educate HCPs about the physiology of gasping, to help them to cope with gasping, and to give better support to parents.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0132" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0132</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
Bourgeois FL
Child
Critical Care
Emotions
End Of Life
Farnoux C
Grimaud M
Healthcare Professionals
J Palliat Med
Knowledge
Maillard A
November List 2030
Only Child
Pediatrics
Pierron C
-
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1017/s1478951523000846" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951523000846</a>
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Title
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Sedation in pediatric palliative care: The role of pediatric palliative care teams
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Child; Palliative Care; Palliative care; End of life; Palliative sedation; Terminal care; Palliative care team; Prospective study
Creator
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Peláez CMJ; Morales AJM; Parra PWF; Leyva CM; Rosique AM; Gili BT; Martino AR
Description
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OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.
Identifier
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<a href="http://doi.org/10.1017/s1478951523000846" target="_blank" rel="noreferrer noopener">10.1017/s1478951523000846</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
Child
End Of Life
Gili BT
Leyva CM
Martino AR
Morales AJM
Palliative And Supportive Care
Palliative Care
Palliative Care Team
Palliative sedation
Parra PWF
Peláez CMJ
Prospective Study
Rosique AM
September List 2050
Terminal Care
-
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Title
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June 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
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub</a>
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End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
Publisher
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Seminars in Fetal and Neonatal Medicine
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; Terminal Care; Decision-making; End of life; Neonatal; Intensive care; Premature infant
Creator
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Wilkinson DJ; Bertaud S
Description
An account of the resource
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm infants in the delivery room and in the neonatal intensive care unit. We identify potential justifications for differences in the end of life care in this population as well as practical and ethical challenges.
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<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub">10.1016/j.siny.2023.101442</a>
2023
Bertaud S
Decision-making
End Of Life
Intensive Care
June 2022 List
Neonatal
Palliative Care
Premature infant
Seminars in Fetal and Neonatal Medicine
Terminal Care
Wilkinson DJ
-
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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/10.1089/jpm.2022.0610" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0610</a>
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Title
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Relationship Between Palliative Care Consults and Outcomes of Pediatric Surgical Patients During Terminal Admissions
Publisher
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Journal of Palliative Medicine
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; palliative care; pediatrics; terminal care; Referral and Consultation; end of life; surgery
Creator
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Tanious MK; Barnett N; Bisbee C; McCoy NC; Wolf BJ; Arenth J
Description
An account of the resource
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Main Outcomes and Measures: Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Results: Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p?=?0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p?<?0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p?=?0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Conclusions and Relevance: Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0610" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0610</a>
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2023
April List 2023
Arenth J
Barnett N
Bisbee C
End Of Life
Journal of Palliative Medicine
McCoy NC
Palliative Care
Pediatrics
Referral And Consultation
Surgery
Tanious MK
Terminal Care
Wolf BJ
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Dublin Core
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Title
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April 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
April List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04683-6</a>
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Title
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The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Male; Female; Humans; Adolescent; Child; Child Preschool; Infant; Length of Stay; Retrospective Studies; Palliative Care; Terminal Care; Chronic Disease; Cohort Studies; Tertiary Care Centers; Paediatric palliative care; End of life; Palliative Care/methods; Health resources; Complex chronic conditions; Terminal Care/methods
Creator
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Nogueira A; Correia D; Loureiro M; Gomes B; Cancelinha C
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<a href="http://doi.org/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04683-6</a>
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2023
Adolescent
April List 2023
Cancelinha C
Child
Child Preschool
Chronic Disease
Cohort Studies
Complex Chronic Conditions
Correia D
End Of Life
European Journal of Pediatrics
Female
Gomes B
Health Resources
Humans
Infant
Length Of Stay
Loureiro M
Male
Nogueira A
paediatric palliative care
Palliative Care
Palliative Care/methods
Retrospective Studies
Terminal Care
Terminal Care/methods
Tertiary Care Centers
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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/10.1111/apa.16716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16716</a>
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A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Publisher
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Acta Paediatrica
Date
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2023
Subject
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Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
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Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Description
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AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Identifier
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<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</a>
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2023
Acta Paediatrica
April List 2023
Bereavement
Boelen PA
Child
coping with grief
de Jonge RR
End Of Life
Fahner JC
Grootenhuis MA
Houben ML
Kars MC
Kochen EM
Loss
Only Child
Palliative
Tataranno ML
Teunissen SCCM
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Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28837</a>
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Title
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Patterns of Medication Use at End of Life by Pediatric Inpatients with Cancer
Publisher
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Pediatric Blood and Cancer
Date
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2020
Subject
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end of life; medication use; pediatric cancer care
Creator
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Prozora S; Shabanova V; Ananth P; Pashankar F; Kupfer GM; Massaro SA; Davidoff AJ
Description
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OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017) were included (N = 1659). Medications were categorized as opioid, benzodiazepine, gastrointestinal related, chemotherapy, anti-infectives, or vasopressors. Exposure to each group was ascertained for all patients at 1 week and 1 day prior to death. Factors associated with exposure were examined using generalized estimating equations, and summarized using adjusted odds ratios (aORs). RESULTS: Over the last week of life, there was increased use of opioids (76% to 82%, aOR = 1.55, P < .001) and benzodiazepines (53% to 66%, aOR = 1.36, P = .02), while gastrointestinal-related medication use decreased (92% to 89%, aOR = 0.69, P = .001). Patients had decreased exposure to chemotherapy (10% to 5%, aOR = 0.46, P < .001) and anti-infectives (82% to 73%, aOR = 0.41, P = .002). Vasopressor use increased as death approached (15% to 28%, aOR = 1.67, P = .04). Factors significantly associated with exposure varied with medication category, and included age, race, length of stay, malignancy type, death in the intensive care unit, history of hematopoietic stem cell transplant, and do-not-resuscitate status. CONCLUSION: During the week preceding death, administration of symptom management medications increased for children with cancer, but use was not universal. Potentially life-sustaining medications were often continued. Variability in utilization suggests differences in provider/family decision making that warrant further study to develop an evidence-based approach to end-of-life care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28837" target="_blank" rel="noreferrer noopener">10.1002/pbc.28837</a>
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2020
2021 Special Edition - Oncology
Ananth P
Davidoff AJ
End Of Life
Kupfer GM
Massaro SA
medication use
Pashankar F
Pediatric Blood & Cancer
pediatric cancer care
Prozora S
Shabanova V
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Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0081</a>
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Title
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Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
Publisher
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Journal of Adolescent and Young Adult Oncology
Date
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2021
Subject
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pediatric palliative care; age; end of life; palliative opportunity
Creator
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Labudde EJ; DeGroote NP; Ebelhar J; Massie AM; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
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Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative opportunities," or events during a patient's cancer course where subspecialty PC would be warranted and compared opportunities between adolescents and younger patients. Methods: Patients from a single center, 0-18 years of age at cancer diagnosis, who died from January 1, 2012, to November 30, 2017, were included. In this secondary analysis, patients were divided into cohorts based on age at diagnosis: 0-12 and 13-18 years. Demographic, disease, and treatment data were collected. Descriptive statistics and modeling were performed. Number, type, and timing of palliative opportunities and PC consultation timing and reason were evaluated across cohorts. Results: Of the 296 patients included for analysis, 27.7% were 13-18 years (82/296) at diagnosis. Frequency of palliative opportunities did not differ by age (median 7.0 [interquartile range 4.0 and 10.0] in both cohorts). PC consultation occurred in 36.5% (108/296), with neither rate nor timing differing by age group. PC consultations in adolescents were more often for symptom management (p = 0.0001). Adolescent patients were less likely to have a do-not-resuscitate order placed before death (61.0%, 50/82) compared to younger patients (73.8%, 158/214, p = 0.03). Conclusion: Adolescent patients with cancer did not experience more palliative opportunities than younger patients in this cohort, although they often have challenging psychological, family, and social stressors that were not identified. Incorporating additional palliative opportunities could enhance identification of stress and symptoms in adolescents with cancer such that PC could be timed to meet their needs.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0081</a>
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2021
2021 Special Edition - Oncology
Age
Allen KE
Brock KE
Castellino SM
DeGroote NP
Ebelhar J
End Of Life
Journal Of Adolescent And Young Adult Oncology
Labudde EJ
Massie AM
palliative opportunity
Pediatric Palliative Care
Wasilewski-Masker K
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951521000067</a>
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Title
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End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Communication; Caregiver; End of life; Pediatric; Oncology
Creator
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Kenney AE; Bedoya SZ; Gerhardt CA; Young-Saleme T; Wiener L
Description
An account of the resource
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
Identifier
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<a href="http://doi.org/10.1017/s1478951521000067" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000067</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 - Oncology
Bedoya SZ
Caregiver
Communication
End Of Life
Gerhardt CA
Kenney AE
Oncology
Palliative & Supportive Care
Pediatric
Wiener L
Young-Saleme T
-
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2021.0154</a>
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Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
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Journal of adolescent and young adult oncology
Date
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2022
Creator
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Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Description
An account of the resource
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Identifier
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<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</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 3 - Oncology List
Adolescent
adolescent and young adult
Bakitas M
Cancer
Caregiver
Communication
Currie ER
Death
End Of Life
Female
Gilbertson-White S
Human
interpersonal
Journal Of Adolescent And Young Adult Oncology
Keenan MA
Lindley LC
Mack JW
Neoplasm
Palliative Care
Physician-patient relationship
Psychology
Roeland EJ
Schulz GL
Sisk BA
Terminal Care
Young Adult
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Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.3390/children9020274" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9020274</a>
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Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
Publisher
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Children (Basel)
Date
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2022
Creator
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Robert R; Razvi S; Triche LL; Bruera E; Moody KM
Description
An account of the resource
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. METHODS: The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods. RESULTS: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. CONCLUSION: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.
Identifier
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<a href="http://doi.org/10.3390/children9020274" target="_blank" rel="noreferrer noopener">10.3390/children9020274</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 3 - Oncology List
Bruera E
Cancer
Caregiver experience
Child
Children (Basel)
End Of Life
Moody KM
Palliative Care
Patient experience
Pediatrics
Razvi S
Robert R
Triche LL
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/23743735221106589</a>
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Listening to Parents of Children With Cancer-Between Life and its end
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Journal of Patient Experience
Date
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2022
Creator
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Manor-Binyamini I; Schreiber-Divon M
Description
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This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Identifier
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<a href="http://doi.org/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</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 3 - Oncology List
Cancer
Children
End Of Life
Experience
Hope
Journal of Patient Experience
Manor-Binyamini I
Palliative Care
Parents
perceptions
Schreiber-Divon M
Social Support
-
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2022.1017272</a>
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Title
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Compassionate de-escalation of life-sustaining treatments in pediatric oncology: An opportunity for palliative care and intensive care collaboration
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Frontiers in Oncology
Date
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2022
Creator
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Cuviello A; Pasli M; Hurley C; Bhatia S; Anghelescu DL; Baker JN
Description
An account of the resource
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at the end of life (EOL) is often undertreated and underrecognized. Pain and poor quality of life are common concerns amongst parents and providers at a child's EOL. Integration of palliative care (PC) may decrease suffering and improve symptom management in many clinical situations; however, few studies have described medical management and symptom burden in children with cancer in the pediatric intensive care unit (PICU) undergoing de-escalation of LSTs. METHODS: A retrospective chart review was completed for deceased pediatric oncology patients who experienced compassionate extubation and/or withdrawal of vasopressor support at EOL in the PICU. Demographics, EOL characteristics, and medication use for symptom management were abstracted. Descriptive analyses were applied. RESULTS: Charts of 43 patients treated over a 10-year period were reviewed. Most patients (69.8%) were white males who had undergone hematopoietic stem cell transplantation and experienced compassionate extubation (67.4%) and/or withdrawal of vasopressor support (44.2%). The majority (88.3%) had a physician order for scope of treatment (POST - DNaR) in place an average of 13.9 days before death. PC was consulted for all but one patient; however, in 18.6% of cases, consultations occurred on the day of death. During EOL, many patients received medications to treat or prevent respiratory distress, pain, and agitation/anxiety. Sedative medications were utilized, specifically propofol (14%), dexmedetomidine (12%), or both (44%), often with opioids and benzodiazepines. CONCLUSIONS: Pediatric oncology patients undergoing de-escalation of LSTs experience symptoms of pain, anxiety, and respiratory distress during EOL. Dexmedetomidine and propofol may help prevent and/or relieve suffering during compassionate de-escalation of LSTs. Further efforts to optimize institutional policies, education, and collaborations between pediatric intensivists and PC teams are needed.
Identifier
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<a href="http://doi.org/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener">10.3389/fonc.2022.1017272</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 3 - Oncology List
Anghelescu DL
Baker JN
Bhatia S
Cuviello A
Dexmedetomidine
End Of Life
Frontiers in Oncology
Hurley C
Palliative Care
Palliative sedation
Pasli M
Pediatric Oncology
Propofol
Symptom Management
Therapy
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology 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 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.05.007</a>
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Title
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The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
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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
2022
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Brock KE; DeGroote NP; Roche A; Lee A; Wasilewski K
Description
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CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology. METHODS: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated. RESULTS: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four. CONCLUSION: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.007</a>
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2022
2022 Special Edition 3 - Oncology List
Brock KE
DeGroote NP
End Of Life
Journal of Pain and Symptom Management
Lee A
outpatient clinic
palliative oncology
Pediatric Oncology
Pediatric Palliative Care
Roche A
Supportive Care
Wasilewski K
-
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January 2023 List
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January List 2023
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<a href="http://doi.org/10.1177/10499091221138298" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221138298</a>
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Title
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Palliative Sedation Therapy Practice Comparison – A Survey of Pediatric Palliative Care and Pain Management Specialists
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American Journal of Hospice and Palliative Medicine®
Date
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2022
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Dexmedetomidine; End of Life; Pain Management; Palliative Care; Palliative Sedation Therapy; Propofol; Symptom Management
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Cuviello A; Ang N; Morgan K; Baker JN; Anghelescu DL
Description
An account of the resource
Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations in clinical practice and PST implementation among pediatric palliative care (PPC) and pain management (PM) specialists. Methods: We distributed an IRB-exempt electronic anonymous survey via email through the Society of Pediatric Pain Medicine, and the American Academy of Hospice and Palliative Medicine. Survey responses were collated and descriptively reported. Results: Of 83 survey responses, the majority (75%) represented large academic children’s hospitals. The distribution between PPC and pediatric pain management specialists’ responses was 60% and 40%, respectively. Most respondents reported having designated pain management and/or palliative care teams (70% and 90%, respectively). Approximately half (48%) reported following an institutional PST protocol, most not requiring formal ethics consult (69%). Only 54% of respondents noted that the Do Not Resuscitate (DNR) order was required prior to PST initiation. PST was primarily utilized for children with oncologic diagnoses (76%). The primary and secondary medications of choice for PST implementation were reported to be opioids (39%) and benzodiazepines (36%) by pain management specialists, and benzodiazepines (52%) and barbiturates (28%) by palliative care specialists. Conclusions: Our study highlights the variability in the practice and implementation of PST. Further educational efforts are key for establishing PST practices and efficient protocol development.
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<a href="http://doi.org/10.1177/10499091221138298" target="_blank" rel="noreferrer noopener">10.1177/10499091221138298</a>
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Palliative Care
2022
American Journal of Hospice and Palliative Medicine®
Ang N
Anghelescu DL
Baker JN
Cuviello A
Dexmedetomidine
End Of Life
January List 2023
Morgan K
Pain Management
Palliative Sedation Therapy
Propofol
Symptom Management
-
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Title
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November 2022 List
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November 2022 List
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<a href="http://doi.org/10.1089/pmr.2021.0072" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2021.0072</a>
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Title
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Primary Caregivers Caring for a Child at End of Life in Saudi Arabia
Publisher
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Palliative Medicine Reports
Date
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2022
Subject
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Saudi Arabia; Children at End of Life; End of Life; End of Life Care; Primary Caregivers
Creator
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Hafez SA; Snethen JA; Taani M; Ngui E; Ellis J; Baothman AA
Description
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BACKGROUND: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to manage the impact on primary caregivers from caring for a child receiving end of life care (EOLC). PURPOSE: The purpose of this study was to explore the experiences of primary caregivers caring for a child receiving EOLC within the Saudi Arabian health care system. METHODS: A descriptive phenomenological study was conducted, and 24 female primary caregivers were interviewed individually. Participants were recruited from three hospitals and the surrounding community in Jeddah, Saudi Arabia. The data were collected over a period of seven weeks between August and September of 2019. Individual in-depth interviews were conducted using an 11-item investigator-developed interview guide derived from the literature on EOL. Thematic analysis was completed using transcripts from all interviews. RESULTS: The findings suggest that primary caregivers caring for a child receiving EOLC were impacted psychologically, physically, socially, and financially. Primary caregivers expressed their heartbreak, lack of sleep, isolation, and financial challenges while caring for their child at EOL. CONCLUSIONS: Similar to what has been reported in the literature, primary caregivers caring for a child at EOL experience biopsychosocial and financial challenges. In addition, this study has implications for nursing education, practice, policy, and research regarding EOLC. Also, the findings can guide future research on EOL in Saudi Arabia and worldwide.
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<a href="http://doi.org/10.1089/pmr.2021.0072" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0072</a>
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End of Life Care
2022
Baothman AA
children at end of life
Ellis J
End Of Life
Hafez SA
Ngui E
November 2022 List
Palliative Medicine Reports
primary caregivers
Saudi Arabia
Snethen JA
Taani M
-
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
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<a href="http://doi.org/10.1177/0825859719885947" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0825859719885947</a>
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Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study
Publisher
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Journal of Palliative Care
Date
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2019
Subject
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decision-making; end of life; goals of care; parental coping; pediatrics; terminally ill children
Creator
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Pinto TE; Doolittle B
Description
An account of the resource
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children. METHODS: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes. RESULTS: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness. CONCLUSION: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.
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<a href="http://doi.org/10.1177/0825859719885947" target="_blank" rel="noreferrer noopener">10.1177/0825859719885947</a>
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2019
2022 Special Edition 2 - Parent Perspectives
Decision-making
Doolittle B
End Of Life
Goals Of Care
Journal Of Palliative Care
parental coping
Pediatrics
Pinto TE
Terminally Ill Children
-
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15429</a>
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Title
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Palliative and end of life care for a child: understanding parents' coping strategies
Publisher
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Acta Paediatrica
Date
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2020
Subject
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child; coping; end of life; parent
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Darlington AS; Randall D; Leppard L; Koh M
Description
An account of the resource
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
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<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
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2020
2022 Special Edition 2 - Parent Perspectives
Acta Paediatrica
Child
Coping
Darlington AS
End Of Life
Koh M
Leppard L
Parent
Randall D
-
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Special Edition #2 2022 List
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119895496</a>
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Title
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Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Adult; Bereavement; cancer; child; communication; end of life; Focus Groups; Hospice Care; Humans; palliative care; Parents; Professional-Family Relations; Quality of Life; Time Factors
Creator
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Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R
Description
An account of the resource
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Identifier
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<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">10.1177/1049909119895496</a>
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2020
2022 Special Edition 2 - Parent Perspectives
Adult
American Journal Of Hospice And Palliative Care
Bereavement
Cancer
Child
Communication
Cousino MK
End Of Life
Focus Groups
Hospice Care
Humans
Hutchinson R
Palliative Care
Parents
Paul TK
Pituch K
Professional-family Relations
Quality Of Life
Sedig LK
Spruit JL
Time Factors
-
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211047838</a>
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Title
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Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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child; end of life; lived experience; memory making; parent
Creator
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Clarke T; Connolly M
Description
An account of the resource
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
Identifier
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<a href="http://doi.org/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</a>
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2021
2022 Special Edition 2 - Parent Perspectives
American Journal Of Hospice And Palliative Care
Child
Clarke T
Connolly M
End Of Life
lived experience
Memory Making
Parent
-
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1186/s12904-022-00947-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-022-00947-y</a>
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Title
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Palliative sedation for children at end of life: a retrospective cohort study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Terminal Care; Child; Children; Death; End of life; Humans; Hypnotics and Sedatives/therapeutic use; Pain; Palliative care; Palliative Care; Palliative sedation; Retrospective Studies; Symptom control
Creator
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Chen Y; Jiang J; Peng W; Zhang C
Description
An account of the resource
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. METHOD: This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. RESULTS: From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). CONCLUSION: Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children.
Identifier
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<a href="http://doi.org/10.1186/s12904-022-00947-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00947-y</a>
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2022
April 2022 List
BMC Palliative Care
Chen Y
Child
Children
Death
End Of Life
Humans
Hypnotics and Sedatives/therapeutic use
Jiang J
Pain
Palliative Care
Palliative sedation
Peng W
Retrospective Studies
Symptom Control
Terminal Care
Zhang C
-
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Title
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June 2022 List
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-054796</a>
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An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Advance Care Planning; Advance Directives; Confidence Intervals; End of Life; Odds Ratio; United States
Creator
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Baker JN; Friebert S; Needle J; Jiang J; Wang J; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHOD(S): Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULT(S): Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSION(S): High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences. Copyright © 2022 by the American Academy of Pediatrics.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</a>
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2022
Advance Care Planning
Advance Directives
April 2022 List
Baker JN
Confidence Intervals
End Of Life
Friebert S
Jiang J
Lyon ME
Needle J
Odds Ratio
Pediatrics
United States
Wang J
-
Dublin Core
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March 2022 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.010</a>
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Title
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Symptoms and Suffering at End of Life for Children With Complex Chronic Conditions
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Journal of Pain and Symptom Management
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2022
Subject
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end of life; Medical complexity; pediatric palliative care; symptom management
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Marcus KL; Kao PC; Ma C; Wolfe J; DeCourcey DD
Description
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Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and suffering at EOL for children with noncancer, noncardiac CCCs as well as parental distress related to child suffering. Method(s): This study is a secondary data analysis of a cross-sectional, single-center survey of bereaved parents of children with CCCs who died between 2006 to 2015. The primary outcome was parent-reported child suffering in the final two days of life. Result(s): Among 211 eligible parents contacted for participation, 114 completed the survey, and 99 had complete primary outcome data (participation rate 47%). Most children had congenital/chromosomal (42%) or progressive central nervous system (22%) conditions. Twenty-eight percent of parents reported high child suffering in the final two days of life. Parents reported that pain and difficulty breathing caused the greatest suffering for children and distress among themselves. Some parents also reported distress related to uncertainty about child suffering. Parents were less likely to report high child suffering if they were confident in knowing what to expect when their child was dying (AOR 0.20; 95% CI 0.07-0.60) or felt prepared for medical problems at EOL (AOR 0.12; 95% CI 0.04-0.42). Conclusion(s): Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering. Copyright © 2021 American Academy of Hospice and Palliative Medicine
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.010</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
DeCourcey DD
End Of Life
Journal of Pain and Symptom Management
Kao PC
Ma C
March 2022 List
Marcus KL
Medical Complexity
Pediatric Palliative Care
Symptom Management
Wolfe J
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Title
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Text
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<a href="http://doi.org/10.1111/apa.16235" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.16235</a>
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Provider concordance regarding elements of goals-of-care discussions in neonatal intensive care
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Acta Paediatrica
Date
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2021
Subject
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end of life; neonatal; palliative care; provider perspectives
Creator
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Guttmann K; Liu B; Kelley A
Description
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Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goals-of-care discussions and change in moral distress following goals-of-care discussions.1 With the analysis described here, we sought to determine how providers who participated in the same goals-of-care discussion viewed key discussion elements in comparison with other provider participants. Understanding differences and concordance in perceptions may help to (1) understand the quality of goals-of-care discussions, (2) improve metrics of communication quality and (3) inform the development of targeted interventions to improve communication quality.
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<a href="http://doi.org/10.1111/apa.16235" target="_blank" rel="noreferrer noopener">10.1111/apa.16235</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
Acta Paediatrica
End Of Life
February 2022 List
Guttmann K
Kelley A
Liu B
Neonatal
Palliative Care
provider perspectives
-
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February 2022 List
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<a href="http://doi.org/10.3389/fped.2021.742916" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2021.742916</a>
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Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
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Frontiers in Pediatrics
Date
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2021
Subject
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grief; end of life; pediatric palliative care; bereavement; pediatric critical care
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Grunauer M; Mikesell C; Bustamante G; Aronowitz D; Zambrano K; Icaza-Freire AP; Gavilanes AWD; Barrera R
Description
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Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.
Identifier
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<a href="http://doi.org/10.3389/fped.2021.742916" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.742916</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
Aronowitz D
Barrera R
Bereavement
Bustamante G
End Of Life
February 2022 List
Frontiers in Pediatrics
Gavilanes AWD
Grief
Grunauer M
Icaza-Freire AP
Mikesell C
Pediatric Critical Care
Pediatric Palliative Care
Zambrano K
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Title
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January 2022 List
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January 2022 List
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<a href="http://doi.org/10.1177/23814683211039468" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/23814683211039468</a>
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Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making
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MDM Policy & Practice
Date
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2021
Subject
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advance care planning; end of life; shared decision making; children with special health care needs; spillover effects
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Lin JL; Lipstein EA; Wittenberg E; Tay D; Lundstrom R; Lundstrom GL; Sediqzadah S; Wright DR
Description
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A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations. The moderated discussion, summarized in this article, highlighted existing resources and gaps in intergenerational decision making in four areas: decision aids, economic evaluation, participant perspectives, and measures. Intergenerational decision making is an understudied and poorly understood aspect of medical decision making that requires particular attention as our society ages and technological advances provide new innovations for life-sustaining measures across all stages of the lifespan.
Identifier
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<a href="http://doi.org/10.1177/23814683211039468" target="_blank" rel="noreferrer noopener">10.1177/23814683211039468</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
Advance Care Planning
Children With Special Health Care Needs
End Of Life
January 2022 List
Lin JL
Lipstein EA
Lundstrom R
Lundstrom GL
MDM Policy & Practice
Sediqzadah S
shared decision making
spillover effects
Tay D
Wittenberg E
Wright DR
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Title
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November 2021 List
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November 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-021-00831-1</a>
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Title
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Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
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BMC Palliative Care
Date
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2021
Subject
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Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
Creator
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Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
Description
An account of the resource
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Identifier
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<a href="http://doi.org/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</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
Baral VR
Bereavement
BMC Palliative Care
Chiam M
Death
End Of Life
Huang H
Infant
Krishna LKR
Lee ASI
Lee RWL
Lim C
Lim JY
Lim MBXY
Lim WQ
Neonate
November 2021 List
Paediatrics
Palliative Care
Parents
Personhood
Ring theory of personhood
Tan XH
Vig PS
-
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Title
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November 2021 List
Text
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Citation List Month
November 2021 List
URL Address
<a href="http://doi.org/10.1111/jpc.15719" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.15719</a>
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Title
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Medication chart review at end of life of paediatric palliative patients
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Journal of Paediatrics and Child Health
Date
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2021
Subject
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chart review; end of life; inpatient; medication; paediatric palliative
Creator
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Soo JEJ; Chan MY; Bte Adb Rashid NAB; Bte Mohamad Yusri LI; Wynn YY; Noda M; Tewani K
Description
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AIM: This study aimed to review the use of medications in a paediatric palliative care (PPC) population during the last two weeks of life. METHODS: This is a retrospective observational cohort study that included 50 consecutive patients who were referred to KK Hospital PPC service from 2011 to 2015. Those who died after two weeks from discharge date were excluded. Medication charts were reviewed and relevant data were extracted. RESULTS: The study population included 42 patients and consists predominantly oncological and neurological diagnoses. The median number of medications used was 11.5. Ninety-five percent (40 out of 42) of study population required analgesia where 81% (34 out of 42) were opioid. There was prevalent use of antibiotics (86% of study population, 36 out of 42). Less frequently used medications included steroids, sedatives, laxatives and antiemetics (48%, 52%, 48% and 38% of study population respectively). CONCLUSION: Significant number of medications was used in PPC during the last two weeks of life. Apart from significant use of analgesia, there is also notable use of antibiotics. Future directions in education such as prescription of laxatives with opioid are proposed.
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<a href="http://doi.org/10.1111/jpc.15719" target="_blank" rel="noreferrer noopener">10.1111/jpc.15719</a>
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2021
Bte Adb Rashid NAB
Bte Mohamad Yusri LI
Chan MY
chart review
End Of Life
Inpatient
Journal of Paediatrics and Child Health
medication
Noda M
November 2021 List
paediatric palliative
Soo JEJ
Tewani K
Wynn YY
-
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November 2021 List
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November 2021 List
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<a href="http://doi.org/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211047838</a>
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Title
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Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
Publisher
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The American journal of hospice & palliative care
Date
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2021
Subject
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child; end of life; lived experience; memory making; parent
Creator
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Clarke T; Connolly M
Description
An account of the resource
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
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<a href="http://doi.org/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</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
Child
Clarke T
Connolly M
End Of Life
lived experience
Memory Making
November 2021 List
Parent
The American Journal of Hospice & Palliative Care
-
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Title
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November 2021 List
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Citation List Month
November 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.02.015</a>
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Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
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
2021
Subject
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grief; palliative care; end of life; NICU; parents; bereavement
Creator
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Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE
Description
An account of the resource
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.015</a>
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2021
Baughcum AE
Bereavement
Clark OE
Dunnells ZDO
End Of Life
Fortney CA
Gerhardt CA
Grief
Journal of Pain and Symptom Management
Nicu
November 2021 List
Palliative Care
Parents
-
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Title
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September 2021 List
Text
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Citation List Month
September 2021 List
URL Address
<a href="http://doi.org/10.1089/pmr.2020.0015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/pmr.2020.0015</a>
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Title
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Dignity Therapy in Pediatrics: A Case Series
Publisher
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Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatric; end of life; pediatric palliative care; legacy; dignity therapy
Creator
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Schuelke T; Rubenstein J
Description
An account of the resource
Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and personhood as well as cope with existential distress near the end of life. To our knowledge, there are no published reports of this treatment modality in pediatric patients. Methods: The authors report the experience of a single-center case series of Dignity Therapy in a pediatric palliative care population. The adult Dignity Therapy process was adapted to fit the pediatric population and their families. Modifications are explained in some detail, and specific cases are shared to illustrate the process. The goal of this case series is to report on the application of Dignity Therapy to the pediatric population. Setting/subjects: Inclusion criteria for the cases series consisted of children and their families who were aware that death may occur soon, were English speaking, admitted to the hospital, and receiving care from the palliative care service. Results: Eight patients or their caregivers have completed Dignity Therapy thus far through our program. Four consented to publication of their experience. Three patients were adolescents and told their own story and the story of one younger nonverbal child was told by her family. All four participants reported that the intervention was acceptable and expressed gratitude for their final generativity document. No patient or family reported distress or negative effects from participation in Dignity Therapy. Conclusions: This case series describes how Dignity Therapy is possible with adaptations in the pediatric population, and how Dignity Therapy by proxy may be possible for caregivers of patients unable to tell their own story.
Identifier
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<a href="http://doi.org/10.1089/pmr.2020.0015" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0015</a>
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2020
dignity therapy
End Of Life
legacy
Palliative Medicine Reports
Pediatric
Pediatric Palliative Care
Rubenstein J
Schuelke T
September 2021 List
-
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Title
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September 2021 List
Text
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Citation List Month
September 2021 List
URL Address
<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.33763</a>
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Children and adolescents with hematologic cancers deserve better end-of-life care
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Cancer.
Date
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2021
Subject
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children; adolescents; palliative care; cancer; end of life; administrative data; hematologic; high intensity
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Rapoport A; Gupta S
Description
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Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.
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<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">10.1002/cncr.33763</a>
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2021
Administrative data
Adolescents
Cancer
Cancer.
Children
End Of Life
Gupta S
hematologic
high intensity
Palliative Care
Rapoport A
September 2021 List
-
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Title
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August 2021 List
Text
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August 2021 List
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10880-021-09797-x</a>
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Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer
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Journal of Clinical Psychology in Medical Settings
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2021
Subject
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Children; Adjustment; End of life; Cancer; Sibling bereavement
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Kenney AE; Tutelman PR; Fisher RS; Lipak KG; Barrera M; Gilmer MJ; Fairclough D; Akard TF; Compas BE; Davies B; Hogan NS; Vannatta K; Gerhardt CA
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The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">10.1007/s10880-021-09797-x</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
Adjustment
Akard TF
August 2021 List
Barrera M
Cancer
Children
Compas BE
Davies B
End Of Life
Fairclough D
Fisher RS
Gerhardt CA
Gilmer MJ
Hogan NS
Journal Of Clinical Psychology In Medical Settings
Kenney AE
Lipak KG
sibling bereavement
Tutelman PR
Vannatta K
-
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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/10.1093/pch/pxaa051" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/pch/pxaa051</a>
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Paediatric euthanasia in Canada: New challenges for end of life care
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Paediatrics and Child Health
Date
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2021
Subject
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Paediatric; End of life; Palliative care; Maid
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Lamb CM
Description
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Canadians are looking to expand their Medical Assistance in Dying (MAID) program to include mature minors. Yet, little evidence exists to support this expansion. The Council of Canadian Academies released a report in December 2018 indicating that little is known about how mature minors make meaning of end of life care. To address this knowledge gap, research is needed to understand how mature minors make meaning of the dying process in the first place. Since social perceptions drive Canadian health care, practice, and end of life mentalities, the question that needs to be asked is: What is the Canadian perception of a good death for mature minors? To answer this question it is first necessary to examine the meaning that death and dying hold for mature minors, as voiced by mature minors themselves.
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<a href="http://doi.org/10.1093/pch/pxaa051" target="_blank" rel="noreferrer noopener">10.1093/pch/pxaa051</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
End Of Life
Lamb CM
Maid
May 2021 List
Paediatric
Paediatrics And Child Health
Palliative Care
-
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Title
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May 2021 List
Text
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Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.1097/anc.0000000000000838" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/anc.0000000000000838</a>
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The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
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Advances in Neonatal Care
Date
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2021
Subject
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end of life; neonatal death; neonates; palliative care; program development; rooming-in
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Czynski AJ; Souza M; Lechner BE
Description
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BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opportunity to spend as much time as possible with their infant in order to make memories and parent their infant. PURPOSE: The objective of the Mother Baby Comfort Care Pathway is to implement a program of family-centered care with logistically flexible care delivery, allowing mothers and their families to share as normal a postpartum care experience as possible with a focus on quality of life, memory making, and time spent together. METHODS: The program was developed with the nucleus of care coordination and provision on the Mother Baby Unit (postpartum unit), with involvement from the labor and delivery room, NICU, and other units as necessary to provide the postpartum mother, her dying infant, as well as possible additional siblings (in the case of multiple gestation), postpartum care while rooming-in. The program was rolled out with training workshops for postpartum nurses. FINDINGS: Nurses who took part in the workshops and the patient care program rated both highly. IMPLICATIONS FOR PRACTICE: The Mother Baby Comfort Care Pathway aims to offer a framework for providing multidisciplinary family-centered comfort care to newborns during the postpartum period in a compassionate, evidence-based, and individualized manner in order to maximize quality time together for families with a dying infant.
Identifier
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<a href="http://doi.org/10.1097/anc.0000000000000838" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000838</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
Advances in Neonatal Care
Czynski AJ
End Of Life
Lechner BE
May 2021 List
Neonatal Death
Neonates
Palliative Care
Program Development
rooming-in
Souza M
-
Dublin Core
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Title
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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s1478951521000225</a>
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Navigating the Terrain of Moral Distress: Experiences of Pediatric End of Life Care and Bereavement during COVID-19
Publisher
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Palliative & Supportive Care
Date
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2021
Subject
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End of life; Pediatric palliative care; Moral Distress; COVID-19; beareavement
Creator
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Wiener L; Rosenberg AR; Pennarola B; Fry A; Weaver MS
Description
An account of the resource
Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
Identifier
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<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000225</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
beareavement
COVID-19
End Of Life
Fry A
Moral Distress
Palliative & Supportive Care
Pediatric Palliative Care
Pennarola B
Rosenberg AR
Weaver MS
Wiener L