1
40
31
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July 2020 List
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<a href="http://doi.org/10.1097/anc.0000000000000732" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/anc.0000000000000732</a>
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Close to Home: Perinatal Palliative Care in a Community Hospital
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Advances in Neonatal Care
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2020
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community palliative care; community perinatal hospice; life-limiting perinatal diagnosis; neonatal palliative care; perinatal hospice; perinatal palliative care; prenatal testing
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Ziegler T R; Kuebelbeck A
Description
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BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child. PURPOSE: This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community. METHODS/SEARCH STRATEGY: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia. IMPLICATIONS FOR PRACTICE: Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families. IMPLICATIONS FOR RESEARCH: Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.
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<a href="http://doi.org/10.1097/anc.0000000000000732" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000732</a>
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2020
Advances in Neonatal Care
community palliative care
community perinatal hospice
July 2020 List
Kuebelbeck A
life-limiting perinatal diagnosis
Neonatal Palliative Care
Perinatal Hospice
Perinatal Palliative Care
prenatal testing
Ziegler T R
-
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July 2020 List
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14411</a>
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The Chameleon Project: A children's end of life care quality improvement project
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Developmental Medicine and Child Neurology
Date
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2020
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Chameleon Project; children; end-of-life; quality improvement project
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Wolff A; Dorsett C; Haynes S; Whitehouse W P; Clements H; Griffin H; Chhaochharia A; Connolly A; Kelly N; Turnbull J; Deorukker S; Hill S; Batey N; Douglas E; Sheikh N; Bifani E; Lovegrove S; Webb K; Manning J
Description
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Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with expertise in Paediatric Palliative Care (10h/wk), a children's palliative care nurse (3d/wk) a network administrator (2d/wk), and additional hours for paediatricians in the critical care, oncology, and neonatal units, and in each of the local district general hospitals (total 18h/wk). Method(s): Tools were developed to aid identification of children in the last year of life and to support anticipatory care planning. The team attended ward rounds and provided teaching sessions, advice and support. Children who died an expected death in the 12 months of the project were ascertained from the child death review teams. Non-elective admissions, bed days, and costs were tabulated. We also evaluated the documentation of care plans and post bereavement family feedback questionnaires. Result(s): 29 children died an expected death. The same number died during the previous 12 months. The median number of non-elective admissions reduced from 2 to 1 per child, specialist ward bed days reduced from 504 to 251 (50% reduction). For children admitted to PICU in the last 12 months of life, the total PICU bed days reduced from 342 to 184 (46% reduction), the median length of stay reduced from 21 days to 11 days, and the maximum length of stay reduced from 141 days to 38 days. The percentage of children who died an expected death who had documented anticipatory care plans rose from 50% to 72%. Conclusion(s): The network of clinicians with expertise in paediatric palliative care working together across a region improved anticipatory care planning and reduced admissions and bed days for children in their last year of life: better care with reduced costs.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14411</a>
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2020
Batey N
Bifani E
Chameleon Project
Chhaochharia A
Children
Clements H
Connolly A
Deorukker S
Developmental Medicine and Child Neurology
Dorsett C
Douglas E
end-of-life
Griffin H
Haynes S
Hill S
July 2020 List
Kelly N
Lovegrove S
Manning J
quality improvement project
Sheikh N
Turnbull J
Webb K
Whitehouse W P
Wolff A
-
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July 2020 List
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<a href="http://doi.org/10.1089/jpm.2019.0450" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0450</a>
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Title
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Telehealth acceptability for children, family, and adult hospice nurses when integrating the pediatric palliative inpatient provider during sequential rural home hospice visits
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Journal of Palliative Medicine
Date
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2020
Subject
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hospice; pediatric palliative care; rural; telehealth
Creator
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Weaver M S; Robinson J E; Shostrom V K; Hinds P S
Description
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Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective(s): Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design(s): Case series. Setting(s): Home hospice in rural Midwest. Participant(s): Patients <18 years of age enrolling in home hospice for end-of-life care. Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible. Result(s): Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3-4.9 on 5-point scale; p = 0.001) than hospice nurses (3.2-3.8 on 5-point scale; p = 0.05). All children able to self-report stated a "like" for telehealth, citing six reasons such as "being remembered" and "medical knowledge and care planning." Conclusion(s): Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
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<a href="http://doi.org/10.1089/jpm.2019.0450" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0450</a>
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2020
Hinds P S
Hospice
Journal of Palliative Medicine
July 2020 List
Pediatric Palliative Care
Robinson J E
Rural
Shostrom V K
Telehealth
Weaver M S
-
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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
Date
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2020
Subject
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administration; communication skills; hospice; interpersonal skills; palliative medicine; practice management
Creator
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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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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/10.1016/j.cjca.2020.04.041" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.cjca.2020.04.041</a>
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Palliative care?! But this child's not dying: The burgeoning partnership between pediatric cardiology and palliative care
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The Canadian journal of cardiology
Date
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2020
Subject
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cardiology; pediatric cardiology; pediatric palliative care
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Wan A; Weingarten K; Rapoport A
Description
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The field of pediatric cardiology has witnessed major changes over the past few decades that have considerably altered patient outcomes, including decreasing mortality rates for many previously untreatable conditions. Despite this, some pediatric cardiology programs are increasingly choosing to partner with their institutional palliative care teams. Why is this? The field of palliative care has also experienced significant shifts over a similar period of time. Today's palliative care is focused on improving quality of life, for any patient with a serious or life-threatening condition, regardless of where they might be on their disease trajectory. Research has clearly demonstrated that improved outcomes can be achieved for a variety of patient cohorts through early integration of palliative care; recent evidence suggests that the same may be true in pediatric cardiology. All pediatric cardiologists need to be aware of what pediatric palliative care has to offer their patients, especially those who are not actively dying. This manuscript reviews the evolution of palliative care and provides a rationale for its integration into the care of children with advanced heart disease. Readers will gain a sense of how and when to introduce palliative care to their families, as well as insight into what pediatric palliative care teams have to offer. Additional research is required to better delineate optimal partnership between palliative care and pediatric cardiology so that we may promote maximal quality of life of patients concurrently with continued efforts to push the boundaries of quantity of life. Copyright © 2020. Published by Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.cjca.2020.04.041" target="_blank" rel="noreferrer noopener">10.1016/j.cjca.2020.04.041</a>
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2020
Cardiology
July 2020 List
Pediatric Cardiology
Pediatric Palliative Care
Rapoport A
The Canadian Journal Of Cardiology
Wan A
Weingarten K
-
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July 2020 List
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July 2020 List
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<a href="http://doi.org/10.1111/dmcn.14354" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14354</a>
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Challenges primary care providers face when caring for children with medical complexity
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Developmental Medicine and Child Neurology
Date
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2019
Subject
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children; children with medical complexity; CMC; medical complexity; PCP; primary care providers
Creator
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Savolt T; Smith T; Goodwin E; Kennedy M
Description
An account of the resource
Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study aims to identify the perceived barriers that pose challenges for primary care providers (PCPs) when caring for CMC in Kansas (KS) and Missouri (MO). Study Design: Cross-sectional study. Study Participants and Settings: A survey was disseminated to PCPs in MO and KS through Children's Mercy Hospital, The University of Kansas Hospital, the Office of Rural Health Education, and the MO and KS chapters of the American Academy of Pediatrics. The voluntary-response sample included 115 PCPs. CMC clinic providers were excluded. Material(s) and Method(s): A onetime cross-sectional REDCap survey adapted from previously published surveys was disseminated via email. The data collected were self-identified and categorical. Statistical analysis was performed using a twotailed ANOVA with a p value of 0.05. Result(s): The top barrier to providing care for CMC was insufficient time in clinic (20%) while lack of understanding billing was perceived as not at all a barrier (38%). PCPs were least prepared to handle tracheostomy problems (39%). Access to comprehensive care plans (27%), more time in clinic (21%), and education offerings with continuing education credit (18%) were rated as most helpful to improve ability to care for CMC. Lack of support services was a significant barrier for non-residents compared to residents (45.6% vs. 14.3%, p<0.01) and for PCPs in rural areas compared to providers in metropolitan settings (64.3% vs 29.2%, p=0.015). Metropolitan providers identified insufficient time in clinic to care for patient's needs to be a significant barrier compared to providers in rural areas (65.2% vs 15.4%, p=0.0014). Residents reported they were significantly less prepared to transition a patient from adolescent to adult care (91.7% vs. 48.5%), provide routine healthcare (58.3% vs. 12.3%) and write home health orders (97.2% vs. 59.7%) compared to non-residents (p<0.001). Metropolitan providers felt unprepared to provide palliative care to patients compared to providers in rural areas (86.4% vs 35.7%, p=0.0001). Residents and metropolitan providers both ranked simulation as a more helpful education modality compared with non-residents and rural providers (p<0.05). Conclusions or Significance: Perceived barriers, level of preparedness, and preferred education intervention while caring for CMC varied based on training and practice location. These factors must be considered when developing strategies for education and improving care delivery for CMC.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14354" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14354</a>
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2019
Children
Children With Medical Complexity
CMC
Developmental Medicine and Child Neurology
Goodwin E
July 2020 List
Kennedy M
Medical Complexity
PCP
primary care providers
Savolt T
Smith T
-
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Title
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July 2020 List
Text
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July 2020 List
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<a href="http://doi.org/10.1097/MOP.0000000000000903" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/MOP.0000000000000903</a>
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Title
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Palliative care for pediatric intensive care patients and families
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Current opinion in pediatrics
Date
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2020
Subject
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end-of-life care; pediatric intensive care unit; pediatric palliative care; pediatric surgery; PICU
Creator
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Rothschild C B; Derrington S F
Description
An account of the resource
PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients. RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families. SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.
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<a href="http://doi.org/10.1097/MOP.0000000000000903" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000903</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
Current Opinion In Pediatrics
Derrington S F
End-of-life Care
July 2020 List
Pediatric Intensive Care Unit
Pediatric Palliative Care
pediatric surgery
Picu
Rothschild C B
-
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Title
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July 2020 List
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July 2020 List
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<a href="http://doi.org/10.1007/s12028-020-00997-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s12028-020-00997-1</a>
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Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges
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Neurocritical care
Date
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2020
Subject
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children; end-of-life care; opt-out system; organ donation; pediatrics; practice guidelines; presumed consent; UK; United Kingdom
Creator
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Rady M Y
Description
An account of the resource
The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be referred for potential organ donation to increase the supply of transplantable organs in the UK. To buttress this objective, a UK survey of parents of deceased children mostly with neurologic disorders secondary to severe brain injuries recommended the integration of routine parental discussion of donation regardless of donation eligibility in end-of-life care. Donation discussions emphasize the utility and suitability of organs in dying children for transplantation to maximize consent rate. To ensure that this recommendation does not harm children and parents, contemporary medical, legal, cultural, and religious challenges to end-of-life organ donation should be disclosed in parental discussion of donation and resolved appropriately. To that effect, it is urged that: (1) practice guidelines for the diagnosis and treatment of neurologic disorders secondary to severe brain injuries in children are updated and aligned with recent advances in neuroscience to eliminate potential errors from premature treatment discontinuation and/or incorrect diagnosis of death by brain(stem) criteria, (2) transparent and non-biased disclosure of all empiric information when discussing donation to ensure informed parental decision-making, and (3) a societal dialogue is conducted on the legal, cultural, and religious consequences of integration of routine donation discussion and referral in end-of-life care of children in the UK.
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<a href="http://doi.org/10.1007/s12028-020-00997-1" target="_blank" rel="noreferrer noopener">10.1007/s12028-020-00997-1</a>
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2020
Children
End-of-life Care
July 2020 List
Neurocritical care
opt-out system
Organ Donation
Pediatrics
Practice Guidelines
presumed consent
Rady M Y
UK
United Kingdom
-
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July 2020 List
Text
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July 2020 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2019.1694205</a>
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Good death term in the aspect of paediatric palliative care nursing
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Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
good death; nursing; pediatric palliative care
Creator
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Ozkan S; Tas Arslan F
Description
An account of the resource
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life-limiting illness can greatly alter family functioning and overall well-being. The importance of addressing a child and their family members' physical, emotional, cultural, spiritual, and psychosocial needs has been well documented in pediatric palliative care. Discussion(s): Death is one of the main threats for a human being. It is usually seen as an adult or geriatric populations' problem, so the idea of "children and babies may die, too" is mostly avoided or prohibited from talking by societies, families, health-care professionals, etc. And all of these children and families suffer from during end of life or/and bereavement process. To stop these nurses and other health-care professionals are important to deliver care in the aspect of good death. Good death or die with dignity for child and their families contain 'free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural and ethical standards in terminal illnesses'. In other words, freedom from distressing symptoms, dying in a favorite place, good relationships with family members and medical staff, a feeling that the dying person's life is complete, maintained dignity, preparation for death were also other parts of a good death. To ensure good end for pediatric palliative care, nurses should take advanced nursing practices and responsibilities, but this is not simple because this aspect of nursing is not given by education, neither undergraduate nor post-graduate education. Nursing education at the undergraduate level is mainly based on the medical model. Therefore, while students are receiving detailed information about the protection, prevention, treatment, and rehabilitation of diseases, and they have a limited education on the end of life. As a result, the student nurses and nurses do not want to care for the individual who has a terminal illness, do not feel ready for them, feel a sense of inadequacy, and the care of the patient and his/her family is negatively affected. So education should be planned end of life care, a good death, and palliative care to stop possible negative effects.
Identifier
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<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
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2019
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
Good Death
July 2020 List
Nursing
Ozkan S
Pediatric Palliative Care
Tas Arslan F
-
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Text
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July 2020 List
URL Address
<a href="http://doi.org/10.1016/j.nedt.2020.104417" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nedt.2020.104417</a>
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Title
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Educational needs and preferred learning approaches of the paediatric palliative care workforce: A qualitative exploratory study
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Nurse education today
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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education; exploratory research; learning; pediatric palliative care; pediatric palliative care workforce; qualitative study
Creator
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Malcolm C; McGirr D
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<a href="http://doi.org/10.1016/j.nedt.2020.104417" target="_blank" rel="noreferrer noopener">10.1016/j.nedt.2020.104417</a>
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2020
Education
Exploratory Research
July 2020 List
Learning
Malcolm C
McGirr D
Nurse Education Today
Pediatric Palliative Care
pediatric palliative care workforce
Qualitative Study
-
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Title
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July 2020 List
Text
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URL Address
<a href="http://doi.org/10.23736/S0026-4946.20.05825-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.23736/S0026-4946.20.05825-9</a>
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Decision-making at the limit of viability: an overview
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Minerva pediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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ethics; fetal viability; neonatal intensive care; premature birth; shared decision-making
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Lemos A; Soares H; Guimaraes H
Description
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Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit of viability. There are several interventions that can be applied before and after birth to increase the baby's survival with the least sequelae possible, but different countries make different recommendations on the gestational age that each treatment should be given. There is more consensus on the extremities of viability, being that, at the lower extremity, comfort care is preferred and active care in newborns with higher gestational age. The higher the gestational age at birth, the higher the survival and survival without morbidity rates. At all gestational ages, it is important to take into account the suffering of these babies and to provide them the best quality of life possible. Sometimes palliative care is the best therapeutic approach. The parents of these babies should be included in the decision-making process, if they wish, always respecting their needs and wishes. Nevertheless, the process of having such an immature child can be very painful for parents, so it is also important to take into account their suffering and provide them with all the necessary support. This support should be maintained even after the death of the newborn.
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<a href="http://doi.org/10.23736/S0026-4946.20.05825-9" target="_blank" rel="noreferrer noopener">10.23736/S0026-4946.20.05825-9</a>
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2020
Ethics
fetal viability
Guimaraes H
July 2020 List
Lemos A
Minerva Pediatrica
neonatal intensive care
premature birth
Shared Decision-making
Soares H
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0523" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0523</a>
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Title
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Perceptions of neonatal palliative care: Similarities and differences between medical and nursing staff in a level IV neonatal intensive care unit
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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attitudes toward palliative care; barriers to palliative care; facilitators of palliative care; neonatal intensive care unit; neonatal palliative care; NICU; perceptions
Creator
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Kyc S J; Bruno C J; Shabanova V; Montgomery A M
Description
An account of the resource
Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort. Objective(s): To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives. Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%. Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions. Result(s): Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics. Conclusion(s): Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
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<a href="http://doi.org/10.1089/jpm.2019.0523" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0523</a>
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2020
attitudes toward palliative care
barriers to palliative care
Bruno C J
facilitators of palliative care
Journal of Palliative Medicine
July 2020 List
Kyc S J
Montgomery A M
Neonatal Intensive Care Unit
Neonatal Palliative Care
Nicu
perceptions
Shabanova V
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1111/1460-6984.12539" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/1460-6984.12539</a>
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Title
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Perspectives of speech and language therapists in paediatric palliative care: an international exploratory study
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International journal of language & communication disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children; palliative care; pediatric; speech and language therapy
Creator
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Krikheli L; Erickson S; Carey L B; Carey-Sargeant C L; Mathisen B A
Description
An account of the resource
BACKGROUND: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus-based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. AIMS: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. METHODS & PROCEDURES: An anonymous cross-sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed-ended survey responses and content analysis of open-ended responses are presented. OUTCOMES & RESULTS: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for <= 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. CONCLUSIONS & IMPLICATIONS: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper adds What is already known on the subject The published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches. What this paper adds to existing knowledge This study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta-perceptions of themselves within the multidisciplinary team. What are the potential or actual clinical implications of this work? Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. Copyright © 2020 Royal College of Speech and Language Therapists.
Identifier
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<a href="http://doi.org/10.1111/1460-6984.12539" target="_blank" rel="noreferrer noopener">10.1111/1460-6984.12539</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
Carey L B
Carey-Sargeant C L
Children
Erickson S
International journal of language & communication disorders
July 2020 List
Krikheli L
Mathisen B A
Palliative Care
Pediatric
speech and language therapy
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000654" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000654</a>
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Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care
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Journal of Hospice & Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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communication; community-based palliative care; culture sensitivity; ethics; family planning; implicit bias; life-limiting diseases; moral distress; nurse; vulnerable populations
Creator
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Koch A; Grier K
Description
An account of the resource
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000654" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000654</a>
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2020
Communication
community-based palliative care
culture sensitivity
Ethics
family planning
Grier K
implicit bias
Journal Of Hospice & Palliative Nursing
July 2020 List
Koch A
Life-limiting Diseases
Moral Distress
Nurse
Vulnerable Populations
-
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Title
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July 2020 List
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Citation List Month
July 2020 List
URL Address
<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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Title
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Bereaved Parents, Hope, and Realism
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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Bereavement; Collaboration; Conceptual Framework; Family; Grief; Hope; Life Experiences; Palliative Care; Parents
Creator
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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.
Identifier
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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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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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Title
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July 2020 List
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000731" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000731</a>
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Title
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Conceptually Redefining Neonatal Palliative Care
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Advances in Neonatal Care
Date
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2020
Subject
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comfort care; neonatal end-of-life care; neonatal palliative care; perinatal palliative care
Creator
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Kain V J; Chin S D
Description
An account of the resource
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach. METHOD(S): Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken. FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management. IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000731" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000731</a>
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2020
Advances in Neonatal Care
Chin S D
Comfort Care
July 2020 List
Kain V J
neonatal end-of-life care
Neonatal Palliative Care
Perinatal Palliative Care
-
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Title
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July 2020 List
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July 2020 List
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/JPN.0000000000000483</a>
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Title
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Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
Publisher
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The Journal of perinatal & neonatal nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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decision making; neonatal intensive care; NICU; palliative care; perinatal care; premature birth
Creator
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Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
Description
An account of the resource
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Identifier
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<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</a>
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2020
Decision Making
Hoffman S
Jager S
Jeffries E
July 2020 List
Kavanaugh K
Laitano T
neonatal intensive care
Nicu
Palliative Care
Perinatal Care
premature birth
The Journal Of Perinatal & Neonatal Nursing
Tucker Edmonds B
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1016/j.acap.2020.01.014" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.acap.2020.01.014</a>
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Title
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Core Curricular Priorities in the Care of Children With Medical Complexity: A North American Modified Delphi Study
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Academic Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children with medical complexity; complex care; curriculum development; pediatrics; postgraduate medical education; residency education
Creator
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Huth K; Newman L; Glader L
Description
An account of the resource
Background: Previous studies of pediatric residents have identified educational gaps in caring for children with medical complexity. Training opportunities in complex care vary across residency programs. Defining core curricular topics in complex care is a priority in medical education. Objective(s): To identify core topics to include in a standard complex care curriculum for pediatric residents. Method(s): An initial topic list was generated through literature review and proceedings of national meetings. Expert panelists were identified based on experience in complex care and residency education. A modified Delphi method was used to determine group consensus by asking participants to rate the importance of complex care curricular topics for pediatric residents. Consensus was defined as >70% of experts identifying a topic as essential. There was a predetermined maximum of 3 iterative, electronic survey rounds, with feedback provided to participants between each round. Result(s): Sixteen experts participated. Response rate was 100% for all rounds. Experts were from the United States (44%) and Canada (56%); most were affiliated with an academic medical center (96%) involved in both inpatient and outpatient care (69%). Eleven topics were identified as essential across 3 rounds: feeding difficulties, pain/irritability, transition, feeding tube management, difficult discussions, team management/care coordination, dysmotility, aspiration, safety/emergency planning, neuromuscular/skeletal issues, and advocacy. Essential topics were organized according to the International Classification of Functioning, Disability and Health. Conclusion(s): Eleven curricular priorities in complex care were identified across multiple domains of the International Classification of Functioning, Disability and Health framework, serving as a guide for standardized curriculum development for future pediatricians. Copyright © 2020 Academic Pediatric Association
Identifier
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<a href="http://doi.org/10.1016/j.acap.2020.01.014" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2020.01.014</a>
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2020
Academic Pediatrics
Children With Medical Complexity
complex care
curriculum development
Glader L
Huth K
July 2020 List
Newman L
Pediatrics
postgraduate medical education
residency education
-
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July 2020 List
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July 2020 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14411</a>
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End of life care in PICU across the UK
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Developmental Medicine and Child Neurology
Date
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2020
Subject
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end-of-life care; pediatric intensive care unit; PICU; UK; United Kingdom
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Huey R; Jennings J; Maxwell V; Richardson J
Description
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Objective: The care provided in the time surrounding the death of a child shapes long-term memories and has potential to impact on the grieving process. There are no specific guidelines for PICU staff in relation to what good care looks like at this time. We sought insight into practice across the UK to build an evidence base, improve care provided and share good practice. Method(s): A 10 question, anonymous, Likert survey was developed. The questions included: facilities available; Advance Care Plans; communication; patient transfer to home/hospice; follow-up for families; and training and support for staff. PICS Study Group disseminated the questionnaire to PICUs across the UK. Result(s): We received responses from 21/30 PICUs contacted (RR 70%). Around 60% of PICUs have a designated cubicle for end-of-life care. Only 21% have ACPs in place for lifelimited patients admitted to PICU. 79% stated relatively low uptake of hospice/home transfer for end-of-life care. 65% of units have Palliative Care Nurses coordinating care. Staff training is low, with no specific training in 30%. 55% provide a bereavement care pathway. Staff debrief only occurs in 50%. Conclusion(s): From the survey feedback, we found this was an area that all units believe can be improved. In relation to ACPs, we hope this will be more widely introduced. We know that 60% of patients admitted to PICU are life limited. These difficult conversations with family help guide management, understand wishes, and formal documentation ensures all staff are aware. Several units with higher uptake of hospice/home care found early conversations with families beneficial. Units with a dedicated palliative nurse stated this allowed more time with families. We believe this should become a standard of care. Staff training is limited in most units. For something so difficult and frequently encountered, it is vital we equip staff better.
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14411</a>
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2020
Developmental Medicine and Child Neurology
End-of-life Care
Huey R
Jennings J
July 2020 List
Maxwell V
Pediatric Intensive Care Unit
Picu
Richardson J
UK
United Kingdom
-
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July 2020 List
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July 2020 List
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<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000001868</a>
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Title
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Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
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Pediatric Critical Care Medicine
Date
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2019
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Adolescent; Artificial/adverse effects/*statistics & numerical data; Biomedical Technology; Case-Control Studies; Child; Critical Care/*methods; Critical Illness/therapy; Health Care/*statistics & numerical data; Humans; Infant; Intensive Care Units; Newborn; Outcome Assessment; Parenteral Nutrition; Pediatric/statistics & numerical data; Preschool; Prospective Studies; Respiration; Severity of Illness Index; Total/adverse effects/*statistics & numerical data
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Heneghan J A; Reeder R W; Dean J M; Meert K L; Berg R A; Carcillo J; Newth C J L; Dalton H; Tamburro R; Pollack M M
Description
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OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN: Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING: General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS: Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS: Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
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<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001868</a>
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2019
Adolescent
Artificial/adverse effects/*statistics & numerical data
Berg R A
Biomedical Technology
Carcillo J
Case-Control Studies
Child
Critical Care/*methods
Critical Illness/therapy
Dalton H
Dean J M
Health Care/*statistics & numerical data
Heneghan J A
Humans
Infant
Intensive Care Units
July 2020 List
Meert K L
Newborn
Newth C J L
outcome assessment
Parenteral Nutrition
Pediatric Critical Care Medicine
Pediatric/statistics & Numerical Data
Pollack M M
Preschool
Prospective Studies
Reeder R W
Respiration
Severity Of Illness Index
Tamburro R
Total/adverse effects/*statistics & numerical data
-
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Title
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July 2020 List
Text
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July 2020 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000755</a>
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Title
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Implementation of a Perinatal Hospice Program
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Advances in Neonatal Care
Date
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2020
Subject
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antenatal hospice; life-limiting; neonatal; neonatal intensive care unit; NICU; perinatal hospice; perinatal palliative care
Creator
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Falke M; Rubarth L B
Description
An account of the resource
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHOD(S): The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULT(S): The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000755</a>
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2020
Advances in Neonatal Care
antenatal hospice
Falke M
July 2020 List
Life-limiting
Neonatal
Neonatal Intensive Care Unit
Nicu
Perinatal Hospice
Perinatal Palliative Care
Rubarth L B
-
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Title
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July 2020 List
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July 2020 List
URL Address
<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15370</a>
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Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Advance care planning; care goals; communication; decision-making; life-limiting conditions
Creator
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Fahner J; Rietjens J; van der Heide A; Milota M; van Delden J; Kars M
Description
An account of the resource
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.
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<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">10.1111/apa.15370</a>
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2020
Acta Paediatrica
Advance Care Planning
care goals
Communication
Decision-making
Fahner J
July 2020 List
Kars M
Life-limiting Conditions
Milota M
Rietjens J
van Delden J
van der Heide A
-
Dublin Core
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Title
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July 2020 List
Text
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July 2020 List
URL Address
<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
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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bioethics; COVID-19; ethics; hospice; palliative medicine; pandemic; pediatric palliative care
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Evans A M; Jonas M; Lantos J
Description
An account of the resource
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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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1556/650.2020.31636" target="_blank" rel="noreferrer noopener">http://doi.org/10.1556/650.2020.31636</a>
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Possibilities and challenges of perinatal hospice-palliative care. [Hungarian]
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Orvosi Hetilap
Date
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2020
Subject
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hospice palliative care; neonatology; perinatal loss; perinatal period
Creator
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Eva Z; Katalin H
Description
An account of the resource
Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how perinatal hospice-palliative care can be implemented and what opportunities it may provide on the basis of available professional guidelines. We introduce study and analysis of the professional guidelines and protocols, mainly from Anglo-Saxon countries, and describe some examples of best practices. Perinatal hospice is a specially demanding care regarding professional and personal challenges. Standardised guidelines based on consensus can serve as starting points, describing proper care and its conditions. Moreover, they can facilitate communication and coordinative processes between the collaborating specialists. Challenging conditions and possible solutions to them can be identified during supportive formative courses. Continuous formation means competency development in palliative care as well as in adequate communication. Copyright © 2020 Akademiai Kiado Rt.. All rights reserved.
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<a href="http://doi.org/10.1556/650.2020.31636" target="_blank" rel="noreferrer noopener">10.1556/650.2020.31636</a>
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2020
Eva Z
Hospice palliative care
July 2020 List
Katalin H
Neonatology
Orvosi Hetilap
Perinatal Loss
perinatal period
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1097/ACO.0000000000000860" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ACO.0000000000000860</a>
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Palliative care, resuscitation status, and end-of-life considerations in pediatric anesthesia
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Current opinion in anaesthesiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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advance care planning; code status; goals of care; pediatric anesthesia; pediatric palliative care
Creator
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Erondu M U; Mahoney D P
Description
An account of the resource
PURPOSE OF REVIEW: To familiarize pediatric anesthesiologists with primary palliative care procedural communication skills and recommendations for discussions involving complex medical decision-making or advance care planning, such as discussions about resuscitation status. RECENT FINDINGS: Recent publications highlight the benefits of pediatric palliative care (PPC) for seriously ill patients and their families, and how PPC principles might be applied to perioperative communication and decision-making. Both prospective and retrospective reports reveal improved quality of life, symptom management, and avoidance of unnecessary interventions when PPC is introduced early for a child with serious illness. SUMMARY: Pediatric anesthesiologists will, at some point, care for a child with serious illness who would benefit from PPC. It is important that all members of the perioperative care team are familiar with primary PPC procedural communication skills and models for approaching discussions about goals of care, shared decision-making, and advance care planning. Pediatric anesthesiologists should be incorporated as early as possible in team discussions about potential procedures requiring sedation for seriously ill children.
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<a href="http://doi.org/10.1097/ACO.0000000000000860" target="_blank" rel="noreferrer noopener">10.1097/ACO.0000000000000860</a>
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2020
Advance Care Planning
Code status
Current opinion in anaesthesiology
Erondu M U
Goals Of Care
July 2020 List
Mahoney D P
Pediatric Anesthesia
Pediatric Palliative Care
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.13109/prkk.2020.69.3.203" target="_blank" rel="noreferrer noopener">http://doi.org/10.13109/prkk.2020.69.3.203</a>
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Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities
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Praxis der Kinderpsychologie und Kinderpsychiatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
behavioral problems; behavioural problems; disability; emotional problems; life-threatening illness; resiliance; siblings
Creator
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Engelhardt-Lohrke C; Schepper F; Herrmann J; Kowalewski K; Spilger T; Weis C; Martini J
Description
An account of the resource
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities This study evaluates a manualized group program for siblings of children with life-threatening/life-limiting diseases or disabilities. The program aims to activate resources and to reduce emotional and behavioral problems, using cognitive-behavioral methods and experience-based interventions. In this multi-center study, 13 GeschwisterTREFFs were conducted by 11 study sites in Germany. Prior to and after the intervention 97 siblings aged 7 to 14 years and their parents were examined with standardized questionnaires. At baseline, the siblings of children with diseases or disabilities showed significant more emotional and behavioral problems compared to the respective norm samples. After the intervention, the siblings reported declined problem behavior scores that were mostly in the range of the particular norm values. Furthermore, the children indicated a significant improvement of self-esteem, self-efficacy, school competences and relations to their siblings. However, parents reported more problem behavior and less health-related quality of life of their children at both assessments. The present multi-center study showed the interventions' feasibility in different settings and confirmed expected improvements of target variables during the intervention period. Randomized-controlled trails are warranted to verify our results.
Identifier
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<a href="http://doi.org/10.13109/prkk.2020.69.3.203" target="_blank" rel="noreferrer noopener">10.13109/prkk.2020.69.3.203</a>
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2020
behavioral problems
behavioural problems
Disability
emotional problems
Engelhardt-Lohrke C
Herrmann J
July 2020 List
Kowalewski K
Life-threatening illness
Martini J
Praxis der Kinderpsychologie und Kinderpsychiatrie
resiliance
Schepper F
Siblings
Spilger T
Weis C
-
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Title
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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1038/s41372-020-0673-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-020-0673-6</a>
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Title
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Communication between neonatologists and parents when prognosis is uncertain
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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communication; neonatologists; parents; pediatrics; quality of life
Creator
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Drach L L; Hansen D A; King T M; Sibinga E M S
Description
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OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover qualities which may enhance or impede parent-clinician partnership under such difficult circumstances. STUDY DESIGN: Guided by the National Cancer Institute (NCI) Patient Centered Communication framework, semi-structured individual interviews were conducted and analyzed regarding neonatologist and parent perceptions of their communication. Subjects consisted of nine dyads of neonatologists and English-speaking parents whose infant had an uncertain prognosis. RESULTS: Parents were overall satisfied with neonatologists' communications concerning their infant's uncertain trajectory. Nonetheless, both experienced challenges and distress during communication, impeding collaboration and engagement. CONCLUSIONS: Families and neonatologists value principles of patient centered communication but report challenges implementing this practice. Incorporating a multidisciplinary approach in settings of prognostic uncertainty to foster patient centered communication, may enhance communication surrounding NICU care.
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<a href="http://doi.org/10.1038/s41372-020-0673-6" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0673-6</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
Communication
Drach L L
Hansen D A
Journal Of Perinatology
July 2020 List
King T M
Neonatologists
Parents
Pediatrics
Quality Of Life
Sibinga E M S
-
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Title
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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1177/0030222820926296" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222820926296</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Rural Perinatal Loss: A Needs Assessment
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Omega (Westport)
Date
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2020
Subject
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bereavement care; early child loss; perinatal loss; rural
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Domogalla J S; McCord J; Morse R
Description
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The purpose of this research was to ascertain the availability and depth of services of bereavement care for mothers who live rurally. The specific focus is on those who experienced early losses including pregnancy, stillbirth, neonatal, and young children who were born with fetal anomalies or neonatal disease that resulted in death. The convenience (nonprobability) sample originated from a population of mothers who lived in rural east central Minnesota. Participants were interviewed in a 60-minute interval. All data were coded confidential. Common themes, incidence of resources, or lack of bereavement resources for the participants' lived experiences were considered using a descriptive phenomenological approach. Our appreciation of the continuing bond between mother and child compels us to believe that there is an ethical obligation to reduce and remove these barriers and inequalities in bereavement support services for those who live rurally and have experienced perinatal and infant loss. Results of this study indicate the need for further study and establishment of bereavement resources in rural outreach for perinatal and early childhood loss.
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<a href="http://doi.org/10.1177/0030222820926296" target="_blank" rel="noreferrer noopener">10.1177/0030222820926296</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
Bereavement Care
Domogalla J S
early child loss
July 2020 List
McCord J
Morse R
Omega (Westport)
Perinatal Loss
Rural
-
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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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1038/s41372-020-0675-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-020-0675-4</a>
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A review of approaches for resolving disputes between physicians and families on end-of-life care for newborns
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Journal of Perinatology
Date
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2020
Subject
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end-of-life care; ethics; families; medical ethics; newborns; physicians
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Cummings B M; Mercurio M R; Paris J J
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<a href="http://doi.org/10.1038/s41372-020-0675-4" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0675-4</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
Cummings B M
End-of-life Care
Ethics
Families
Journal Of Perinatology
July 2020 List
Medical Ethics
Mercurio M R
Newborns
Paris J J
Physicians
-
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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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2019.1694205</a>
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Discussing end-of-life issues in an adolescent with a terminal illness
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Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
Date
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2019
Subject
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adolescent; advance care planning; end-of-life; terminal illness
Creator
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Chia S Y
Description
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Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an awareness of self and others, gaining selfconfidence, independence, and establishing one's own identity are halted. The difficulty lies in balancing the desire to gain independence while experiencing greater dependence on others as their disease progress. Purpose(s): This review discusses the multi-faceted barriers in discussion of end-of-life care with the adolescent and strategies to optimize this discussions. Case description: This case is about a wheelchair-bound 14-year-old boy with Duchenne's Muscular Dystrophy (DMD), and challenges faced discussing end-of-life issues. His condition was complicated by restrictive lung disease requiring nocturnal Bilevel Positive Airway Pressure (BiPAP) and dilated cardiomyopathy with severely reduced biventricular systolic function. His parents did not want the patient's deteriorating condition to be divulged to him, and he struggled to make sense of his medical experiences. This resulted in non-compliance to medication, fluid restriction, and nocturnal use of BIPAP, exacerbating a vicious circle of admissions for fluid overload due to symptomatic congestive cardiac failure. He had difficulty coming to terms with his illness, felt like a burden to his parents, struggled with frequent nightmares about death, and would wake up in a state of panic. Advanced Care Planning (ACP) with the family was challenging due to parental resistance. Results/Discussion: We reviewed the literature and identified challenges in discussing end-of-life issues with the adolescent. Perspectives from main stakeholders such as the parents, the adolescent, and the medical professionals were evaluated. Key strategies for taking on the end-of-life discussion with the adolescent are as follows: (1) Employing a multidisciplinary team approach for supporting decision-making by dying adolescent, including the physician, nurse, psychologist, social worker, and child life specialist; (2) overcoming parental barriers through physician truthtelling and effective communication, and breaking-down of parental self-defense mechanisms through psychosocial support and pediatric palliative care teams; (3) engaging the adolescent and determining their functional competence and decision-making ability; and (4) integrating truthtelling with modern bioethical principles. Conclusion(s): Our clinical case exemplifies the importance of involving the adolescent in the end-oflife discussion. Early involvement establishes trust between the medical team and the family, whilst providing control and independence as the adolescent's needs are incorporated into the treatment plan. As physicians, the aim is to engage the above strategies together with the multidisciplinary team, preserve opportunities for the adolescent and family to create meaningful legacies, say goodbye to each other, or find spiritual peace in end-of-life care.
Identifier
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<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</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).
2019
Adolescent
Advance Care Planning
Chia S Y
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
end-of-life
July 2020 List
Terminal Illness
-
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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July 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
July 2020 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/PCC.0000000000002359</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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How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
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Pediatric Critical Care Medicine
Date
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2020
Subject
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brain dead; chronic disease; critically ill; death; neuromuscular disease; pediatric intensive care unit; PICU; respiratory disease
Creator
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Agra-Tunas C; Rodriguez-Ruiz E; Rodriguez Merino E
Description
An account of the resource
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSION(S): Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
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<a href="http://doi.org/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002359</a>
Rights
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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
Agra-Tunas C
brain dead
Chronic Disease
Critically Ill
Death
July 2020 List
Neuromuscular Disease
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Picu
respiratory disease
Rodriguez Merino E
Rodriguez-Ruiz E