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40
237
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Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2007-1005</a>
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Fathers' experiences in the neonatal intensive care unit: a search for control.
Publisher
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Pediatrics
Date
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2008
Subject
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Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
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Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Description
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OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
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<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</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).
*Fathers/px [Psychology]
*Intensive Care Units, Neonatal
*Internal-External Control
2008
2023 SE4 - Parent Perspectives
Albersheim, Susan
Arockiasamy, Vincent
Communication
Critical Illness
Father-child Relations
Holsti, Liisa
Humans
Infant, Newborn
Infant, Premature
Intensive Care Units, Neonatal/og [Organization & Administration]
Interviews As Topic
Male
Pediatrics
Professional-family Relations
Qualitative Research
Religion
Stress, Psychological
-
Dublin Core
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Title
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October 2023 List
Text
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Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-061050" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-061050</a>
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Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations
Publisher
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Pediatrics
Date
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2023
Subject
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child; human; newborn; death; child parent relation; psychology; emotion; physician; critical illness
Creator
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Prins S; Linn AJ; van Kaam AHLC; van de Loo M; van Woensel JBM; van Heerde M; Dijk PH; Kneyber MCJ; de Hoog M; Simons SHP; Akkermans AA; Smets EMA; de Vos MA
Description
An account of the resource
BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these expressions, and parents' emotions after the physicians' responses in conversations in which crucial decisions regarding the child's life-sustaining treatment had to be made. METHOD(S): Forty-nine audio-recorded conversations between parents of 12 critically ill children and physicians working in the neonatal and pediatric intensive care units of 3 Dutch university medical centers were coded and analyzed by using a qualitative inductive approach. RESULT(S): Forty-six physicians and 22 parents of 12 children participated. In all 49 conversations, parents expressed a broad range of emotions, often intertwining, including anxiety, anger, devotion, grief, relief, hope, and guilt. Both implicit and explicit expressions of anxiety were prevalent. Physicians predominantly responded to parental emotions with cognition-oriented approaches, thereby limiting opportunities for parents. This appeared to intensify parents' expressions of anger and protectiveness, although their anxiety remained under the surface. In response to more tangible emotional expressions, for instance, grief when the child's death was imminent, physicians provided parents helpful support in both affect- and cognition-oriented ways. CONCLUSION(S): Our findings illustrate the diversity of emotions expressed by parents during end-of-life conversations. Moreover, they offer insight into the more and less helpful ways in which physicians may respond to these emotions. More training is needed to help physicians in recognizing parents' emotions, particularly implicit expressions of anxiety, and to choose helpful combinations of responses.Copyright © 2023 by the American Academy of Pediatrics.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-061050" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-061050</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
Akkermans AA
Child
Child Parent Relation
Critical Illness
de Hoog M
de Vos MA
Death
Dijk PH
Emotion
Human
Kneyber MCJ
Linn AJ
Newborn
October List 2039
Pediatrics
Physician
Prins S
Psychology
Simons SHP
Smets EMA
van de Loo M
van Heerde M
van Kaam AHLC
van Woensel JBM
-
Dublin Core
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Title
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August 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
August List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-059122</a>
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The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
Publisher
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Pediatrics
Date
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2023
Subject
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mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Creator
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Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Description
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Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</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
ambivalence
anxiety
Article
August List 2045
Child
Cinahl
Davies S
Deterioration
directory
disenfranchised grief
ethnography
Father
Fatigue
Female
Grief
Guilt
Hamilton J
Human
injury
Male
Medline
Mental Health
meta analysis
Michael A
Mother
Mukaetova-Ladinska EB
Only Child
Palliative Therapy
Pediatrics
Postavaru GI
Practice Guideline
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
quality control
ScienceDirect
Scopus
Swaby H
Swaby R
Systematic Review
unresolved grief
-
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Title
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August 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
August List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-059447" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-059447</a>
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Title
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Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children
Publisher
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Pediatrics
Date
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2023
Subject
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Humans; Child; Cohort Studies; Female; Male; Communication; Prospective Studies; Emotions; Empathy
Creator
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Olszewski AE; Bogetz J; Mercer A; Bradford MC; Scott M; Fields B; Williams K; Rosenberg AR; Trowbridge A
Description
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BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved
Identifier
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<a href="http://doi.org/10.1542/peds.2022-059447" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059447</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
August List 2042
Bogetz J
Bradford MC
Child
Cohort Studies
Communication
Emotions
Empathy
Female
Fields B
Humans
Male
Mercer A
Olszewski AE
Pediatrics
Prospective Studies
Rosenberg AR
Scott M
Trowbridge A
Williams K
-
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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/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2020-003780</a>
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End-of-Life Childhood Cancer Research: A Systematic Review
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Pediatrics
Date
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2021
Subject
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Oncology
Creator
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Hasan F; Widger K; Sung L; Wheaton L
Description
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CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review. DATA SOURCES: We used the following data sources: Ovid Medline, Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Web of Science, and ProQuest (inception until August 2020). STUDY SELECTION: We selected 24 articles published in English that examined perceptions or experiences of research participation for children with cancer at the EOL from the perspectives of children, parents, and health professionals (HPs). DATA EXTRACTION: Two authors independently extracted data, assessed study quality, and performed thematic analysis and synthesis. RESULTS: Eight themes were identified: (1) seeking control; (2) faith, hope, and uncertainty; (3) being a good parent; (4) helping others; (5) barriers and facilitators; (6) information and understanding; (7) the role of HPs in consent and beyond; and (8) involvement of the child in decision-making. LIMITATIONS: Study designs were heterogeneous. Only one study discussed palliative care research. CONCLUSIONS: Some families participate in EOL research seeking to gain control and sustain hope, despite uncertainty. Other families choose against research, prioritizing quality of life. Parents may perceive research participation as the role of a “good parent” and hope to help others. HPs have positive views of EOL research but fear that parents lack understanding of the purpose of studies and the likelihood of benefit. We identified barriers to research participation and informed consent.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-003780</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
Hasan F
Oncology
Pediatrics
Sung L
Wheaton L
Widger K
-
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Title
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February 2023 List
Text
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Citation List Month
February List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-058905" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-058905</a>
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Surgical Intervention in Patients Receiving Pediatric Palliative Care Services
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Pediatrics
Date
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2023
Subject
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Pediatric pallative care; Surgical Intervention
Creator
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Ellis DI; Nye RT; Wolfe J; Feudtner C
Description
An account of the resource
10.1542/6315738932112Video AbstractPEDS-VA_2022-0589056315738932112Many patients receiving pediatric palliative care (PPC) present with surgically treatable problems. The role of surgery in the care of these patients, however, has not yet been defined. We conducted a cohort study of children receiving PPC to assess the incidence, type, and likely purpose of surgical interventions performed after the initiation of PPC.We performed a cohort analysis of surgical interventions performed on children enrolled in an ongoing, multicenter, prospective cohort study. Patients aged <30 years receiving PPC services were eligible for inclusion in the study. Analyses included descriptive and comparative statistics, as well as logistic regression models.After initiation of PPC, 81.1% (n = 488) of patients had undergone at least 1 surgical intervention (range, 1–71) with a median of 4 interventions (interquartile range, 1–9). The most frequent surgical interventions were feeding tubes, endoscopic biopsy, tracheostomy, bone marrow biopsy, tunneled catheters, bronchoscopy, and chest tube placement, followed by sternum closure, abdominal closure, atrial and ventricular septal defect repairs, and heart transplantation. Children who underwent surgical interventions were statistically less likely to die while receiving PPC (29% vs 40%, P < .03).Most children receiving PPC services undergo at least 1 surgical intervention, and many undergo numerous interventions. Undergoing intervention is not futile because surgical intervention is associated with longer survival. Various patient populations that are more likely, as well as less likely, to undergo surgical intervention warrant specific focus.
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<a href="http://doi.org/10.1542/peds.2022-058905" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-058905</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
Ellis DI
February List 2023
Feudtner C
Nye RT
Pediatric pallative care
Pediatrics
surgical intervention
Wolfe J
-
Dublin Core
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Title
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January 2023 List
Text
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Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-058241</a>
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Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Delphi Study; Quality Measures
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Bogetz JF; Johnston EE; Thienprayoon R; Patneaude A; Ananth P; Rosenberg AR; Workgroup Cambia Advisory
Description
An account of the resource
Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (\textgreater200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM’s importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement.Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, \textless2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation).This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-058241</a>
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2022
Ananth P
Bogetz JF
Delphi Study
January List 2023
Johnston EE
Patneaude A
Pediatrics
quality measures
Rosenberg AR
Thienprayoon R
Workgroup Cambia Advisory
-
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Title
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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2022-057502" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-057502</a>
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Title
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Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
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Pediatrics
Date
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2022
Subject
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Institutional Review Board; Palliative Care
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Mooney-Doyle K; Pyke-Grimm K A; Lanzel AF; Montgomery KE; Hassan J; Thompson A; Rouselle R; Matheny Antommaria AH
Description
An account of the resource
Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-057502" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057502</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).
Palliative Care
2022
Hassan J
institutional review board
Lanzel AF
Matheny Antommaria AH
Montgomery KE
Mooney-Doyle K
November 2022 List
Pediatrics
Pyke-Grimm K A
Rouselle R
Thompson A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 2022 List
Text
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Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-057824</a>
Dublin Core
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Title
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The Case for Advance Care Planning in the NICU
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Creator
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Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Description
An account of the resource
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Identifier
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<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</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
ACP
advanced care planning
Case Planning
Cummings C
December List 2022
Decissional-Support
DeCourcey DD
Lin M
newborn period
Nicu
Pediatrics
Sayeed S
Wolfe J
-
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Title
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October 2022 List
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October 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-055558">http://doi.org/10.1542/peds.2021-055558</a>
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Title
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Disposition Decisions in Cases of Medical Complexity and Health Inequity
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Pediatrics
Date
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2022
Subject
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Adult; Covid-19; Child; Ethics; Clinical; Health; Inequities; Humans; Palliative Care; Pandemics
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Shapiro J P; Anspacher M; Madrigal V; Lantos JD
Description
An account of the resource
The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health care providers, in addition to highlighting long-standing racial and socioeconomic inequities in health care. In pediatric hospitals, necessary public health measures such as visitor restrictions shifted many shared decision-making processes such as discharge planning from complicated to impossible. Here, we present the case of a medically complex adult (with a long-standing pediatric condition) whose surrogate decision-maker objected to discharge to a long-term care facility because of restrictions and risks associated with the coronavirus disease 2019 pandemic. We offer the commentary of experts in clinical ethics, intensive care, inpatient subacute care, and palliative care. Our discussion includes analysis of the ethical considerations involved in the case, concrete guidance on steps toward an ethically permissible discharge, and suggestions for how a health equity lens can improve communication and decision-making for families who are victims of systemic racism and economic discrimination.
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<a href="http://doi.org/10.1542/peds.2021-055558">10.1542/peds.2021-055558</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
Adult
Anspacher M
Child
Clinical
COVID-19
Ethics
Health
Humans
Inequities
Lantos JD
Madrigal V
October 2022 List
Palliative Care
Pandemics
Pediatrics
Shapiro J P
-
Dublin Core
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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/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-052054</a>
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Title
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Parents as Advocates for Pediatric Palliative Care
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Advocacy; Palliative care; Parents; Pediatrics
Creator
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Lord BT; Morrison W; Goldstein RD; Feudtner C
Description
An account of the resource
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052054</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
2022 Special Edition 2 - Parent Perspectives
Advocacy
Feudtner C
Goldstein RD
Lord BT
Morrison W
Palliative Care
Parents
Pediatrics
-
Dublin Core
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Title
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1542/peds.2020-042044" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-042044</a>
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Supporting Families Considering Participation in a Clinical Trial: Parent-Provider Perspectives
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Pediatrics
Date
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2021
Subject
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Clinical trial; Decision-making; Family; Pediatrics
Creator
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Flotte TR; Lord BT; Siedman J
Description
An account of the resource
The emergence of efficacious human gene therapy for life-limiting genetic diseases such as spinal muscular atrophy type 11 has raised hopes among families of children with previously incurable genetic disorders. However, a number of concerns have surfaced regarding the gene therapy trial process. Two bereaved parents, both deeply engaged in their disease communities, collaborated with an experienced gene therapy researcher to create patient education materials to aid parents in critical decision-making. In this Family Partnerships article, we present a summary of the module, as well the reflections of each of the 3 contributors describing the impetus for the Courageous Parents Network (CPN) unit Evaluating the Clinical Trial Option, and their hopes for its impact, as captured in an interview conducted after completion of the educational module. The Evaluating the Clinical Trial Option unit (https://courageousparentsnetwork.org/topics/clinical-trial) offers an overview of the fundamental elements of clinical trial participation, written for a nonmedical audience to help families understand and evaluate their options. It is disease and therapy agnostic and does not advocate for any particular path or decision. Content areas include a glossary of terms; informed consent; clinical trial basics, such as efficacy; trial design, including the phases; participation criteria; and the emotional impact of decision-making. Its elements include a variety of media types: 85 short videos (average 2–4 minutes each, a total of ∼240 minutes); downloadable guides in English and Spanish; 3 podcasts; 4 blog posts written by parents; and a curated educational digital experience (“Guided Pathway”) that, through videos and text, walks parents … Address correspondence to Terence R. Flotte, MD, Medical School, University of Massachusetts and Dean’s Office, 55 Lake Ave North, Worcester, MA 01655. E-mail: terry.flotte{at}umassmed.edu
Identifier
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<a href="http://doi.org/10.1542/peds.2020-042044" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-042044</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
2022 Special Edition 2 - Parent Perspectives
Clinical Trial
Decision-making
Family
Flotte TR
Lord BT
Pediatrics
Siedman J
-
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Title
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April 2022 List
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Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-052130</a>
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Title
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Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
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
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Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
Creator
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Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Description
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BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
2022
April 2022 List
Attitude Of Health Personnel
Callahan KP
Decision Making
Feudtner C
Flibotte J
Infants
Joffe S
Munson D
Neonatologists
Pediatrics
Physicians
Skraban C
Wild KT
-
Dublin Core
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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/10.1542/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
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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
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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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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-4018</a>
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Good-Parent Beliefs: Research, Concept, and Clinical Practice
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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administration; communication skills; hospice; interpersonal skills; palliative medicine; Parent; practice management
Creator
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Weaver MS; October T; Feudtner C; Hinds PS
Description
An account of the resource
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
Identifier
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<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-4018</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).
2020
2022 Special Edition 1 - Parent Perspectives
Administration
Communication Skills
Feudtner C
Hinds PS
Hospice
interpersonal skills
October T
Palliative Medicine
Parent
Pediatrics
Practice Management
Weaver MS
-
Dublin Core
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Title
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February 2022 List
Text
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Citation List Month
February 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-047464</a>
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Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Publisher
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Pediatrics
Date
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2021
Subject
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Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
Creator
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Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Description
An account of the resource
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</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
Adolescent
Age Factors
Antiel RM
Biopsy
Blinman TA
Camazine MN
Catheterization
Child
Chronic Disease
Eghtesady P
Ethnicity
February 2022 List
Feudtner C
Hall M
Hospitalization
Infant
International Classification of Diseases
Lam SK
Nance ML
Newborn Infant
pediatric hospitals
Pediatrics
Preschool Child
Prosthesis Implantation
Race Factors
Retrospective Studies
Salvage Therapy
Surgical Procedures, Operative
Terminal Care
Traynor MD
United States
Young Adult
-
Dublin Core
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Title
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December 2021 List
Text
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Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-049968</a>
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Title
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Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Hospice; Medicaid; Palliative care; Palliative Medicine; Pediatrics
Creator
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Johnson KA; Morvant A; James K; Lindley LC
Description
An account of the resource
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .
Identifier
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<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-049968</a>
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2021
December 2021 List
Hospice
James K
Johnson KA
Lindley LC
Medicaid
Morvant A
Palliative Care
Palliative Medicine
Pediatrics
-
Dublin Core
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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/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-051379</a>
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Educational Priorities for Providing End-of-Life Care: Parent Perspectives
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric
Creator
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Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR
Description
An account of the resource
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-051379</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
Arora G
Baird J
Caliboso M
Greenman J
interpersonal & communication skills
Medical Education
November 2021 List
Obregon D
Palliative Medicine
parent perspectives
Pediatric
Pediatrics
Rusch R
Serwint JR
-
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Title
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-021634</a>
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Title
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Pediatric Palliative Care Programs in US Hospitals
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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children; life-limiting illness; palliative care programs; Pediatric palliative care; USA
Creator
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Rogers MM; Friebert S; Williams C; Humphrey L; Thienprayoon R; Klick JC
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
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<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-021634</a>
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2021
August 2021 List
Children
Friebert S
Humphrey L
Klick JC
life-limiting illness
palliative care programs
Pediatric Palliative Care
Pediatrics
Rogers MM
Thienprayoon R
Usa
Williams C
-
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-014423</a>
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Title
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The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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caregiver; children; life-limiting condition; parents; physical health
Creator
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Hartley J; Bluebond-Langner M; Candy B; Downie J; Henderson EM
Description
An account of the resource
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
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<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-014423</a>
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2021
August 2021 List
Bluebond-Langner M
Candy B
Caregiver
Children
Downie J
Hartley J
Henderson EM
Life-limiting Condition
Parents
Pediatrics
physical health
-
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-049403</a>
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Title
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Family Caregiver Partnerships in Palliative Care Research Design and Implementation
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; palliative care; Research Design; family caregivers; partnerships
Creator
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Weaver MS; Wiener L; Moon MM; Gordon B; Patterson KK; Hinds PS
Description
An account of the resource
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”1 Similarly, family partnerships in pediatric palliative care (PPC) research represent an innovative approach to the planning, delivery, and evaluation of research that is grounded in mutually beneficial relationships that recognize the importance of the family caregiver perspective. The goal of partnered research or study teams is to synthesize the unique perspectives of family caregivers, clinicians, regulatory representatives, and researchers to strengthen research design and implementation. This is accomplished by each unique stakeholder speaking from their own perspective, contributing what they know, and working together to integrate perspectives. The process of moving from just inviting family caregivers to be research subjects to actually engaging with family caregivers as … Address correspondence to Meaghann S. Weaver, MD, MPH, FAAP, Hand in Hand/Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, 8200 Dodge St, Omaha, NE 68198. E-mail: meweaver{at}childrensomaha.org
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-049403</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
August 2021 List
Family Caregivers
Gordon B
Hinds PS
Moon MM
Palliative Care
partnerships
Patterson KK
Pediatric
Pediatrics
Research Design
Weaver MS
Wiener L
-
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Title
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July 2021 List
Text
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Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-029330</a>
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Title
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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
advance care planning; Caregiver Attitudes; hospice and palliative medicine; oncology; psychiatry; psychology
Creator
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Thompkins JD; Needle J; Baker JN; Briggs L; Cheng YI; Wang J; Friebert S; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-029330</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
Baker JN
Briggs L
Caregiver Attitudes
Cheng YI
Friebert S
hospice and palliative medicine
July 2021 List
Lyon ME
Needle J
Oncology
Pediatrics
Psychiatry
Psychology
Thompkins JD
Wang J
-
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/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
systematic review; hospice and palliative medicine; bereavement; father grief
Creator
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McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
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2021
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
-
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Title
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March 2021 List
Text
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Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-009217</a>
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Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children chronic conditions medical complexity neurological disorders
Creator
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Thomson J; Hall M; Nelson K; Flores JC; Garrity B; DeCourcey DD; Agrawal R; Goodman DM; Feinstein JA; Coller RJ; Cohen E; Kuo DZ; Antoon JW; Houtrow AJ; Bastianelli L; Berry JG
Description
An account of the resource
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-009217</a>
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2021
Agrawal R
Antoon JW
Bastianelli L
Berry JG
children chronic conditions medical complexity neurological disorders
Cohen E
Coller RJ
DeCourcey DD
Feinstein JA
Flores JC
Garrity B
Goodman DM
Hall M
Houtrow AJ
Kuo DZ
March 2021 List
Nelson K
Pediatrics
Thomson J
-
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-1193" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-1193</a>
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Title
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Communication in Pediatric Oncology: A Qualitative Study
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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cancer; oncology; pediatric cancer; qualitative study; communication; pediatric oncology
Creator
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Sisk B A; Friedrich A; Blazin L J; Baker J N;Mack J W; DuBois J
Description
An account of the resource
BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-1193" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-1193</a>
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2020
Baker J N
Blazin L J
Cancer
Communication
DuBois J
Friedrich A
Mack J W
Oncology
Oncology 2020 List
Pediatric Cancer
Pediatric Oncology
Pediatrics
Qualitative Study
Sisk B A
-
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-0818L</a>
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Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment
Creator
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Ross LF
Description
An account of the resource
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics
Identifier
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<a href="http://doi.org/10.1542/peds.2020-0818L" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818L</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).
2020
Clinical Decision-Making/ethics
December 2020 List
Patient Advocacy
patient transfer/ethics
Pediatrics
Ross LF
Withholding Treatment
-
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Title
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October 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-2465" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-2465</a>
Dublin Core
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State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children
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Pediatrics
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2020
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After Care; Child; Descriptive Statistics; Geographic Factors; Health – Economics; Health Care Costs; Health Services Accessibility; Home Nursing; Human; Insurance; Medically Fragile; Patient Discharge; Probability; Prospective Studies; Retrospective Design
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Rasooly I R; Shults J; Guevara J P; Feudtner C
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BACKGROUND AND OBJECTIVES: Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home nursing to commercially insured CMC and to rank-order states. METHODS: Retrospective cohort study of hospitalized commercially insured children with ≥1 complex chronic condition from birth to 18 years of age in the Truven MarketScan database. Cohort eligibility criteria were hospital discharge between January 2013 and November 2016 and at least 30 days of follow-up after discharge. Two primary outcome measures were used: receipt of any home nursing within 30 days of hospital discharge (yes or no) and number of days of posthospitalization home nursing (1-30 days). A composite metric encompassing both receipt and quantity was created by evaluating the 95th percentile of days of home nursing (0-30 days). RESULTS: Overall, 9.9% of the sample received home nursing. After we adjusted for patient characteristics, the probability of receiving home nursing varied across states, ranging from 3.4% to 19.2%. Among home nursing recipients, the adjusted median home nursing days across states ranged from 6.6 to 24.5 days. The adjusted 95th percentile of days of home nursing (across the entire of sample, including recipients and nonrecipients of home nursing) ranged from 6.8 to 22.6 days. CONCLUSIONS: We observed striking state-to-state variability in receipt of home nursing and mean number of days of posthospitalization home nursing among commercially insured CMC after adjustment for demographic and clinical differences. This suggests opportunities for state-level improvement.
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<a href="http://doi.org/10.1542/peds.2019-2465" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-2465</a>
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2020
After Care
Child
Descriptive Statistics
Feudtner C
Geographic Factors
Guevara J P
Health – Economics
Health Care Costs
Health Services Accessibility
Home Nursing
Human
Insurance
Medically Fragile
October 2020 List
Patient Discharge
Pediatrics
Probability
Prospective Studies
Rasooly I R
Retrospective Design
Shults J
-
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<a href="http://doi.org/10.1542/peds.2020-1570" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-1570</a>
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Pediatric Palliative Care When COVID-19 Positive Adults Are Dying in a Children’s Hospital
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Pediatrics
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2020
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children's hospitals; COVID-19; pandemic; pediatric palliative care
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Norris S E; Strumph K; Rahmani N E
Description
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* Abbreviations: CHAM — : Children’s Hospital at Montefiore COVID-19 — : coronavirus disease In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The Children’s Hospital at Montefiore (CHAM), a 130-bed facility attached to an adult hospital, accommodated adult patients in the PICU, inpatient wards, and post-anesthesia care unit. CHAM pediatric faculty and housestaff were deployed to serve as primary care physicians and subspecialists for these adults (up to 84 years old), anticipating up to 100 patients. Among many challenges faced was the commitment by the pediatric faculty and staff to find a way to continue family-centered and compassionate care in the face of social distancing rules during the pandemic. Our goal was to preserve the patient’s humanity and their relationship to family and friends who were not permitted to visit. There is an ethical imperative to provide palliative care during a crisis when lives will be lost.1 As a result, we chose to rapidly expand our palliative care capabilities by training frontline medical providers and enlarging our pediatric palliative care presence to serve each adult admitted with COVID-19. Through deployment, the palliative care presence was expanded from 1 hospice and palliative care board-certified pediatrician (S.E.N) to a team that included 15 pediatricians, 2 nurse practitioners, and 8 psychologists in 3 days. Our standard … Address correspondence to Sarah E. Norris, MD, MEd, Department of Pediatrics, Children’s Hospital at Montefiore, 3415 Bainbridge Ave, Bronx, NY 10467. E-mail: sanorri{at}montefiore.org
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<a href="http://doi.org/10.1542/peds.2020-1570" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-1570</a>
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2020
Children's hospitals
COVID-19
Norris S E
October 2020 List
Pandemic
Pediatric Palliative Care
Pediatrics
Rahmani N E
Strumph K
-
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September 2020 List
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<a href="http://doi.org/10.1542/peds.2020-0818N" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-0818N</a>
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Pediatric Suffering and the Burden of Proof
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Pediatrics
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2020
Subject
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burden of proof; pediatric suffering; pediatrics
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Tate T
Description
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The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.
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<a href="http://doi.org/10.1542/peds.2020-0818N" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-0818N</a>
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2020
burden of proof
pediatric suffering
Pediatrics
September 2020 List
Tate T
-
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August 2020 List
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August 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/146/1_MeetingAbstract/226.2" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/146/1_MeetingAbstract/226.2</a>
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“You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences
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Pediatrics
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2020
Subject
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PICU; qualitative study; pediatric intensive care unit; good parent statements
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Porter A S; October T; Hinds P S
Description
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Title “You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences Background Parents’ ideas about what it means to be a “good parent” to their seriously ill children influence their experiences of critical decision points, as well as the decisions they make for their children. Numerous studies have explored parents’ understandings of what it means to be a good parent when making such decisions, but …
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2020
August 2020 List
good parent statements
Hinds P S
October T
Pediatric Intensive Care Unit
Pediatrics
Picu
Porter A S
Qualitative Study
-
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July 2020 List
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July 2020 List
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<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-4018</a>
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"Good-Parent Beliefs": Research, Concept, and Clinical Practice
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Pediatrics
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2020
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administration; communication skills; hospice; interpersonal skills; palliative medicine; practice management
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Weaver M S; October T; Feudtner C; Hinds P S
Description
An account of the resource
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
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<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-4018</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).
2020
Administration
Communication Skills
Feudtner C
Hinds P S
Hospice
interpersonal skills
July 2020 List
October T
Palliative Medicine
Pediatrics
Practice Management
Weaver M S
-
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July 2020 List
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<a href="http://doi.org/10.1542/peds.2019-2771" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-2771</a>
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Bereaved Parents, Hope, and Realism
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Pediatrics
Date
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2020
Subject
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Bereavement; Collaboration; Conceptual Framework; Family; Grief; Hope; Life Experiences; Palliative Care; Parents
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Kaye E C; Kiefer A; Blazin L; Spraker-Perlman H; Clark L; Baker J N
Description
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The article presents a discussion between bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center and interdisciplinary pediatric palliative care clinicians about the coexistence of hope and realism. Topics covered include collaborative development of a novel conceptual model, historical frameworks for hope, and definitions and infrastructure of hope.
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<a href="http://doi.org/10.1542/peds.2019-2771" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-2771</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).
2020
Baker J N
Bereavement
Blazin L
Clark L
Collaboration
Conceptual Framework
Family
Grief
Hope
July 2020 List
Kaye E C
Kiefer A
Life Experiences
Palliative Care
Parents
Pediatrics
Spraker-Perlman H
-
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July 2020 List
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<a href="http://doi.org/10.1542/peds.2020-1163" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-1163</a>
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Title
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Pediatric Palliative Care in a Pandemic: Role Obligations, Moral Distress, and the Care You Can Give
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Pediatrics
Date
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2020
Subject
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bioethics; COVID-19; ethics; hospice; palliative medicine; pandemic; pediatric palliative care
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Evans A M; Jonas M; Lantos J
Description
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Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue's Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is focused on the decisions that have to be made when the surge of patients with respiratory failure overwhelm ICUs. The other is focused on the psychological issues that arise for parents who are caring for a dying child when infection-control policies limit the number of visitors. Both of these situations raise challenges for caregivers who are trying to be honest, to deal with their own moral distress, and to provide compassionate palliative care.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-1163" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-1163</a>
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2020
Bioethics
COVID-19
Ethics
Evans A M
Hospice
Jonas M
July 2020 List
Lantos J
Palliative Medicine
Pandemic
Pediatric Palliative Care
Pediatrics
-
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April 2020 List
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April 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-2241" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-2241</a>
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Toward an Understanding of Advance Care Planning in Children With Medical Complexity
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Pediatrics
Date
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2020
Subject
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advance care planning; children; children with medical complexity; healthcare professional perspectives; healthcare professionals; healthcare provider perspectives; healthcare providers; parent perspectives; parental perspectives
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Orkin J; Beaune L; Moore C; Weiser N; Arje D; Rapoport A; Netten K; Adams S; Cohen E; Amin R
Description
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BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
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<a href="http://doi.org/10.1542/peds.2019-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-2241</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).
2020
Adams S
Advance Care Planning
Amin R
April 2020 List
Arje D
Beaune L
Children
Children With Medical Complexity
Cohen E
healthcare professional perspectives
Healthcare Professionals
healthcare provider perspectives
Healthcare Providers
Moore C
Netten K
Orkin J
parent perspectives
Parental Perspectives
Pediatrics
Rapoport A
Weiser N
-
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April 2020 List
Text
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April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/649" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/649</a>
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Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
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Pediatrics
Date
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2018
Subject
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awareness; conference abstract; controlled study; human; infant; leadership; medical record review; needs assessment; nurse; palliative therapy; patient referral; physician; practice guideline; satisfaction
Creator
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Nguyen L T; Spear M L
Description
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The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medically complex conditions that have potential in progressing towards death. It may be helpful to utilize written criteria for palliative care consultation (PCC) for patients who can benefit from early referral. Thus, our specific aim is to increase the number of PCCs within our level 4 NICU by 20% by the end of December 2016. Our global aim is to improve the care of the medically complex infant in need of multidisciplinary management, which includes palliative care services provided by our palliative care team (named CORE team). The need for a list of triggers was found after distributing a needs assessment survey amongst bedside nurses, nurse practioners, fellows, and attendings. The list was adapted from Caitlin and Carter (2002), and development included input from NICU leadership. The list was posted in the physician workrooms (Figure 1). Bi-monthly reminders were sent out to the NICU fellows on service to review their team's census, identify those who met criteria for PCC, and were encouraged to discuss these patients and their indications for PCC during daily multidisciplinary rounds. After 6 months, a post implementation survey was distributed. Medical chart review of each NICU admission since January 2014 was done to assess which patients met criteria for PCC, how many received a PCC, and the number of days between date of admission and the initial consultation. Prior to implementation, of those who qualified for PCC, 26% received consultation. After implementation, the percentage increased to 46%. The post implementation survey found an increase in understanding the CORE team's role in the NICU, knowing when to consult, and awareness of a positive difference within the NICU since utilizing their services more frequently (Figure 2a). Lastly, the time until initial consultation decreased from approximately two months to one week (Figure 2b). We achieved our goal of increasing the number of PCC. The listed triggers helped establish prompt and proactive referral to the palliative care team at our institution. Not only can a written guideline increase awareness of a palliative care team's role within a NICU, but it also enhances the satisfaction amongst providers of the care they are giving. Next steps include involving the CORE team during weekly multidisciplinary rounds, as well as developing a strategy for those who can benefit from CORE team within 24 hours or overnight. We speculate that utilization of palliative care within the NICU can help guide revision of treatment goals, and provide continuity of care and support to families in need of resources.
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2018
April 2020 List
Awareness
conference abstract
Controlled Study
Human
Infant
Leadership
Medical Record Review
Needs Assessment
Nguyen L T
Nurse
Palliative Therapy
Patient Referral
Pediatrics
Physician
Practice Guideline
Satisfaction
Spear M L
-
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April 2020 List
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April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671</a>
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Improving the frequency of symptom assessment in pediatric palliative care patients
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Pediatrics
Date
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2018
Subject
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awareness; child; clinical evaluation; comfort; conference abstract; e-mail; electronic medical record; hospital patient; human; human cell; information technology; outpatient; Palliative therapy; quality of life; root cause analysis; stem cell; symptom assessment; total quality management
Creator
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Mark M S; McKenna L; Thienprayoon R
Description
An account of the resource
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the electronic medical record (EMR) using a symptoms assessment tool modified from the Memorial Symptom Assessment Scale (MSAS). Our specific aim was to increase the percentage of MSAS evaluations completed and properly documented at the time of consult completion and at least weekly thereafter by PACT providers from 20% to 90% over six months. This project utilized standard quality improvement methodology. We began with a process map, documented process failures using a PARETO chart, and subsequently performed root cause analysis for each failure. Multiple tests of change were run for the following interventions: an initial educational session, MSAS badge reminder cards, adding MSAS awareness to our morning patient huddle, notification of individual completion rates via email, public posting of individual completion rates, a visual reminder with a colorful stamp on daily patient list, modification to the EMR patient list view and EMR flowsheet interface where MSAS is documented. We also performed in-depth reviews of any failures that were identified. Within 4 months of implementation the aim was exceeded and a median of 100% of patients had documented MSAS evaluations. This was considered a significant improvement based on the Institute for Healthcare Improvement Scale. These results have been sustained for an additional 8 months. Factors that impacted success included active engagement of all team members in the improvement process, frequent recognition and treatment of new symptoms, and ongoing updates regarding individual completion rates. Our dependence on the EMR was a limiting factor in sustainability as not all parts of the process were able to be automated and some steps still depend on human factors. Improving existing structure of team communication became critical as we implemented tests of change. Next steps for this project include utilizing the weekly MSAS data available on all patients to study those symptoms experienced specifically by children undergoing stem cell transplant. We will continue to work with our hospital information technology staff to further develop sustainability via process changes in the EMR. In addition we will expand our symptom assessment to include all outpatient consults. Finally, as we have standardized, reliable method to measure symptoms for all inpatients, we intend to design interventions targeting improving symptom management and health-related quality of life in children receiving palliative care in our institution.
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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).
2018
April 2020 List
Awareness
Child
clinical evaluation
Comfort
conference abstract
E-mail
electronic medical record
Hospital Patient
Human
human cell
information technology
Mark M S
McKenna L
Outpatient
Palliative Therapy
Pediatrics
Quality Of Life
root cause analysis
stem cell
Symptom Assessment
Thienprayoon R
Total Quality Management
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/672" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/672</a>
Dublin Core
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Title
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Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; burnout; child; Compassion fatigue; conference abstract; coworker; distress syndrome; education; exhaustion; friend; health care personnel; human; injury; life sustaining treatment; linear regression analysis; palliative therapy; prevalence; questionnaire; risk factor; satisfaction with care; self care; social isolation; wellbeing
Creator
An entity primarily responsible for making the resource
Kase S M; Waldman E D; Weintraub A S
Description
An account of the resource
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and BO can each lead to emotional exhaustion, depression, frustration, depersonalization, and sense of loss in one's achievements; in healthcare providers, this can adversely affect patient care. Compassion satisfaction (CS) is professional fulfillment derived from caring for others. Pediatric palliative care (PC) providers are continuously exposed to clinical experiences that are physically and emotionally demanding and draining. Therefore, we aimed to determine the prevalence of CF, BO, and CS and identify potential predictors of these phenomena in pediatric PC providers.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
April 2020 List
Awareness
Burnout
Child
Compassion Fatigue
conference abstract
coworker
Distress Syndrome
Education
Exhaustion
friend
Health Care Personnel
Human
injury
Kase S M
Life Sustaining Treatment
linear regression analysis
Palliative Therapy
Pediatrics
Prevalence
Questionnaire
risk factor
satisfaction with care
Self Care
Social Isolation
Waldman E D
Weintraub A S
Wellbeing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care in an underserved community: Striving and thriving
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Description
An account of the resource
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Alladin A R
April 2020 List
Awareness
Bereavement Support
bone marrow
Cancer Patient
Cantwell G P
Caribbean
Child
Childhood Cancer
conference abstract
Congenital Malformation
coordination compound
Ethnic Group
Europe
Female
Heart
Hispanic
Hospice
Hospital Patient
Human
Japan
Juanico K
kidney
liver
Major Clinical Study
Male
Medicaid
Memory
Middle East
Music Therapy
Nares M
Neonatal Intensive Care Unit
Newborn
nursing education
Pain
Palliative Therapy
Pastoral Care
Pediatrics
Perception
Posthumous Care
Resident
Sibling
Social Work
Terminal Care
terminally Ill Patient
Webster-Carrion A
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/446">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/446</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
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Increasing joy for pediatric palliative care providers: #pactimpact a quality improvement initiative for resiliency in the workplace
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; coffee; conference abstract; controlled study; home visit; human; outcome assessment; palliative therapy; patient care; self report; total quality management; Workplace
Creator
An entity primarily responsible for making the resource
Morvant A; Jones E
Description
An account of the resource
Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful impact for our families. We hypothesize that by recognizing the impact we make on families we will bring more joy in the workplace ultimately facilitating improved resiliency. These impacts may be big or small such as conducting an afterhours home visit or bringing a parent a coffee. Problem statement: Pediatric palliative care (PPC) is emotionally difficult and we are at risk for suboptimal resiliency. PPC clinicians may not recognize the full value they provide. Currently, we do not have a system in place for improving joy or resiliency. AIM: By April 2018, we will improve our "joy meter" in our PACT members from our baseline of 53% to 75%. Process for improvement: Utilizing the model for improvement we asked 3 key questions. What are we trying to accomplish: Increased resiliency and joy. How will we know the change is an improvement: Regular periodic surveys of the "joy meter." What change can we make that will result in improvement: Increase recognition of impactful patient care. During the initial PDSA cycle we encouraged team members to tweet impacts using the hashtag #PACTimpact. Assessment of the initial cycle revealed that many team members were unfamiliar with twitter so a post-it note board was utilized as well. The number of impacts recorded increased as a result of this change. The outcome measure was assessed using a SurveyMonkey to have team members rate joy on a sliding scale before and after the intervention. Process measure: Number of impacts recorded. Totaled weekly. Outcome measure: Average team joy on 0-100 scale. Balance measure: Qualitative report of negative impacts on team members Discussion: Our aim was not achieved. Comments indicated our intervention is effective at improving joy. We are planning additional cycles to attain our aim, which was to increase our "joy meter" from our baseline of 53% to 75%. We increased the "joy meter" to 69% after our first three-week cycle. Factors that affected success: We depended on members to notify us about meaningful impact on patient care. Some #PACTimpacts could be missed if members did not self-report or report other positive impacts on patient care. Next steps: We will continue to use our "joy meter" to track joy in the workplace. We will reach out to other departments to ask them to recognize when we are helpful with patient care to broaden our recognition scope. We will consider appointing a wellness officer, and we will continue to track the "joy meter" through interventions as this position is developed.
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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).
2019
Child
coffee
conference abstract
Controlled Study
Home Visit
Human
Jones E
March 2020 List
Morvant A
outcome assessment
Palliative Therapy
Patient Care
Pediatrics
Self Report
Total Quality Management
Workplace
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/00.11">https://pediatrics.aappublications.org/content/144/2_MeetingAbstract/00.11</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric palliative podcasting as a tool to reach families
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; clinical article; conference abstract; female; follow up; human; male; organization; palliative therapy; season; social media; total quality management; touch
Creator
An entity primarily responsible for making the resource
Moore D; Bills O
Description
An account of the resource
Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers. This abstract will describe the process of creating a podcast, strategies for creating and releasing content, and how to follow up content once released. The past 10 years have seen rapid advancements in the affordability and quality of recording options. Many institutions have seen the value of media outreach directly to patients and are working to lower the obstacles to engaging through this medium. Our team looked into both the physical process of recording and the various ways to disseminate content. After evaluating options, we choose to record using a combination of personally-owned, portable recording equipment and a recently opened institutional facility equipped with recording tools. Looking at hosting services used by various organizations, we chose to follow the pattern of the Center for the Advancement of Palliative Care (CAPC) which uses a free, widely available site. Using this tool, we are able to post links to podcasts in the various social media formats used by our team. Our team chose to start with 5 episodes, which would be released all at once to start a ?season? of out podcast. We chose topics for our discussion based on our target audience, parents of children with Palliative Care needs, and the teams experience with parental questions and issues. Topics focused on fundamentals of Palliative Care and common questions parents ask such as, "How do I advocate for my child while in the hospital"?. The 2 hosts plan an outline for each of these discussions and then record an episode trying to touch on major points. The hosts create outlines detailed enough to be useful while preserving a sense of spontaneity. After the episode is recorded it is edited for length and flow. Our goal for the episodes was roughly 20-30 minutes. This is based on experts in the field who consider this a ?drive-time? length that listeners can commit to. Once podcasts are released into the community, we follow basic analytics including the number of listens, percent of listeners who complete the episode, location of listeners, and time of day episodes are played. This helps give us an idea of what is going well, what should be continued, and what should change. Feedback is also elicited from listeners for improvement and topics for future episodes. We feel that podcasts are an effective tool to reach families and will continue our program. Our future plans include more rigorous quality improvement methodology and finding opportunities for guest hosts, including parents.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bills O
Child
Clinical Article
conference abstract
Female
Follow Up
Human
Male
March 2020 List
Moore D
Organization
Palliative Therapy
Pediatrics
season
social media
Total Quality Management
touch