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Title
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November 2021 List
Text
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November 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-051379</a>
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Educational Priorities for Providing End-of-Life Care: Parent Perspectives
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Pediatrics
Date
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2021
Subject
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interpersonal & communication skills; Medical education; Palliative Medicine; Parent perspectives; Pediatric
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Arora G; Caliboso M; Baird J; Rusch R; Greenman J; Obregon D; Serwint JR
Description
An account of the resource
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-051379" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-051379</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Arora G
Baird J
Caliboso M
Greenman J
interpersonal & communication skills
Medical Education
November 2021 List
Obregon D
Palliative Medicine
parent perspectives
Pediatric
Pediatrics
Rusch R
Serwint JR
-
Dublin Core
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Title
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May 2018 List
Text
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May 2018 List
URL Address
<a href="http://doi.org/http://dx.doi.org/10.1542/peds.2017-1284E" target="_blank" rel="noreferrer noopener">http://doi.org/http://dx.doi.org/10.1542/peds.2017-1284E</a>
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Status Complexicus? The Emergence of Pediatric Complex Care
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Pediatrics
Date
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2018
Creator
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Cohen E; Berry JG; Sanders L; Schor EL; Wise PH
Description
An account of the resource
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.
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).
Identifier
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<a href="http://doi.org/10.1542/peds.2017-1284e" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284e</a>
2018
Berry JG
Cohen E
May 2018 List
Pediatrics
Sanders L
Schor EL
Wise PH
-
Dublin Core
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Title
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December 2018 List
Text
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Citation List Month
December 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2018-0516C" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1542/peds.2018-0516C</a>
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Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
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Pediatrics
Date
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2018
Creator
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Feudtner C; Schall T; Hill D
Description
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We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
Identifier
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<a href="http://doi.org/10.1542/peds.2018-0516C" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0516C</a>
2018
December 2018 List
Feudtner C
Hill D
Pediatrics
Schall T
-
Dublin Core
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Title
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May 2018 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
May 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-1284j" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2017-1284j</a>
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Title
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Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity
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Pediatrics
Date
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2018
Subject
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Only Child
Creator
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Feudtner C; Schall T; Nathanson P; Berry J
Description
An account of the resource
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices.
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).
Identifier
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<a href="http://doi.org/10.1542/peds.2017-1284j" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284j</a>
2018
Berry J
Feudtner C
May 2018 List
Nathanson P
Only Child
Pediatrics
Schall T
-
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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August 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-014423</a>
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The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
Publisher
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Pediatrics
Date
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2021
Subject
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caregiver; children; life-limiting condition; parents; physical health
Creator
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Hartley J; Bluebond-Langner M; Candy B; Downie J; Henderson EM
Description
An account of the resource
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-014423</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Bluebond-Langner M
Candy B
Caregiver
Children
Downie J
Hartley J
Henderson EM
Life-limiting Condition
Parents
Pediatrics
physical health
-
Dublin Core
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Title
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December 2021 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
December 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-049968</a>
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Title
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Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
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Pediatrics
Date
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2021
Subject
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Hospice; Medicaid; Palliative care; Palliative Medicine; Pediatrics
Creator
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Johnson KA; Morvant A; James K; Lindley LC
Description
An account of the resource
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .
Identifier
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<a href="http://doi.org/10.1542/peds.2021-049968" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-049968</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
December 2021 List
Hospice
James K
Johnson KA
Lindley LC
Medicaid
Morvant A
Palliative Care
Palliative Medicine
Pediatrics
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-052054</a>
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Title
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Parents as Advocates for Pediatric Palliative Care
Publisher
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Pediatrics
Date
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2021
Subject
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Advocacy; Palliative care; Parents; Pediatrics
Creator
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Lord BT; Morrison W; Goldstein RD; Feudtner C
Description
An account of the resource
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052054</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 2 - Parent Perspectives
Advocacy
Feudtner C
Goldstein RD
Lord BT
Morrison W
Palliative Care
Parents
Pediatrics
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Dublin Core
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Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
Dublin Core
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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systematic review; hospice and palliative medicine; bereavement; father grief
Creator
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McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
-
Dublin Core
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Title
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-021634</a>
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Title
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Pediatric Palliative Care Programs in US Hospitals
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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children; life-limiting illness; palliative care programs; Pediatric palliative care; USA
Creator
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Rogers MM; Friebert S; Williams C; Humphrey L; Thienprayoon R; Klick JC
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-021634</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Children
Friebert S
Humphrey L
Klick JC
life-limiting illness
palliative care programs
Pediatric Palliative Care
Pediatrics
Rogers MM
Thienprayoon R
Usa
Williams C
-
Dublin Core
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Title
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July 2021 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 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-029330</a>
Dublin Core
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Title
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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
advance care planning; Caregiver Attitudes; hospice and palliative medicine; oncology; psychiatry; psychology
Creator
An entity primarily responsible for making the resource
Thompkins JD; Needle J; Baker JN; Briggs L; Cheng YI; Wang J; Friebert S; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-029330</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Advance Care Planning
Baker JN
Briggs L
Caregiver Attitudes
Cheng YI
Friebert S
hospice and palliative medicine
July 2021 List
Lyon ME
Needle J
Oncology
Pediatrics
Psychiatry
Psychology
Thompkins JD
Wang J
-
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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-009217</a>
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Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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children chronic conditions medical complexity neurological disorders
Creator
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Thomson J; Hall M; Nelson K; Flores JC; Garrity B; DeCourcey DD; Agrawal R; Goodman DM; Feinstein JA; Coller RJ; Cohen E; Kuo DZ; Antoon JW; Houtrow AJ; Bastianelli L; Berry JG
Description
An account of the resource
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-009217</a>
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2021
Agrawal R
Antoon JW
Bastianelli L
Berry JG
children chronic conditions medical complexity neurological disorders
Cohen E
Coller RJ
DeCourcey DD
Feinstein JA
Flores JC
Garrity B
Goodman DM
Hall M
Houtrow AJ
Kuo DZ
March 2021 List
Nelson K
Pediatrics
Thomson J
-
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Title
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February 2022 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
February 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-047464</a>
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Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
Creator
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Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Description
An account of the resource
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
Age Factors
Antiel RM
Biopsy
Blinman TA
Camazine MN
Catheterization
Child
Chronic Disease
Eghtesady P
Ethnicity
February 2022 List
Feudtner C
Hall M
Hospitalization
Infant
International Classification of Diseases
Lam SK
Nance ML
Newborn Infant
pediatric hospitals
Pediatrics
Preschool Child
Prosthesis Implantation
Race Factors
Retrospective Studies
Salvage Therapy
Surgical Procedures, Operative
Terminal Care
Traynor MD
United States
Young Adult
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-4018</a>
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Title
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Good-Parent Beliefs: Research, Concept, and Clinical Practice
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
administration; communication skills; hospice; interpersonal skills; palliative medicine; Parent; practice management
Creator
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Weaver MS; October T; Feudtner C; Hinds PS
Description
An account of the resource
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
Identifier
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<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-4018</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 1 - Parent Perspectives
Administration
Communication Skills
Feudtner C
Hinds PS
Hospice
interpersonal skills
October T
Palliative Medicine
Parent
Pediatrics
Practice Management
Weaver MS
-
Dublin Core
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Title
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-049403</a>
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Title
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Family Caregiver Partnerships in Palliative Care Research Design and Implementation
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; palliative care; Research Design; family caregivers; partnerships
Creator
An entity primarily responsible for making the resource
Weaver MS; Wiener L; Moon MM; Gordon B; Patterson KK; Hinds PS
Description
An account of the resource
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”1 Similarly, family partnerships in pediatric palliative care (PPC) research represent an innovative approach to the planning, delivery, and evaluation of research that is grounded in mutually beneficial relationships that recognize the importance of the family caregiver perspective. The goal of partnered research or study teams is to synthesize the unique perspectives of family caregivers, clinicians, regulatory representatives, and researchers to strengthen research design and implementation. This is accomplished by each unique stakeholder speaking from their own perspective, contributing what they know, and working together to integrate perspectives. The process of moving from just inviting family caregivers to be research subjects to actually engaging with family caregivers as … Address correspondence to Meaghann S. Weaver, MD, MPH, FAAP, Hand in Hand/Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, 8200 Dodge St, Omaha, NE 68198. E-mail: meweaver{at}childrensomaha.org
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-049403</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Family Caregivers
Gordon B
Hinds PS
Moon MM
Palliative Care
partnerships
Patterson KK
Pediatric
Pediatrics
Research Design
Weaver MS
Wiener L
-
Dublin Core
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Title
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April 2020 List
Text
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Citation List Month
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640</a>
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Title
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Palliative care in an underserved community: Striving and thriving
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Creator
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Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Description
An account of the resource
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Alladin A R
April 2020 List
Awareness
Bereavement Support
bone marrow
Cancer Patient
Cantwell G P
Caribbean
Child
Childhood Cancer
conference abstract
Congenital Malformation
coordination compound
Ethnic Group
Europe
Female
Heart
Hispanic
Hospice
Hospital Patient
Human
Japan
Juanico K
kidney
liver
Major Clinical Study
Male
Medicaid
Memory
Middle East
Music Therapy
Nares M
Neonatal Intensive Care Unit
Newborn
nursing education
Pain
Palliative Therapy
Pastoral Care
Pediatrics
Perception
Posthumous Care
Resident
Sibling
Social Work
Terminal Care
terminally Ill Patient
Webster-Carrion A
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.112.3.691" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.112.3.691</a>
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Title
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Family-centered care and the pediatrician's role
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Humans; Adult; Parent-Child Relations; Professional-Family Relations; Physician's Role; adolescent; Family/psychology; Adolescent Transitions; Hospitalized/psychology
Creator
An entity primarily responsible for making the resource
American Academy of Pediatrics Committee on Hospital Care
Description
An account of the resource
Drawing on several decades of work with families, pediatricians, other health care professionals, and policy makers, the American Academy of Pediatrics provides a definition of family-centered care. In pediatrics, family-centered care is based on the understanding that the family is the child's primary source of strength and support. Further, this approach to care recognizes that the perspectives and information provided by families, children, and young adults are important in clinical decision making. This policy statement outlines the core principles of family-centered care, summarizes the recent literature linking family-centered care to improved health outcomes, and lists various other benefits to be expected when engaging in family-centered pediatric practice. The statement concludes with specific recommendations for how pediatricians can integrate family-centered care in hospitals, clinics, and community settings as well as in more broad systems of care.
2003
Identifier
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<a href="http://doi.org/10.1542/peds.112.3.691" target="_blank" rel="noreferrer">10.1542/peds.112.3.691</a>
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Type
The nature or genre of the resource
Journal Article
2003
Adolescent
Adolescent Transitions
Adult
American Academy of Pediatrics Committee on Hospital Care
Backlog
Child
Family/psychology
Hospitalized/psychology
Humans
Journal Article
Parent-child Relations
Pediatrics
Physician's Role
Professional-family Relations
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2005-2070" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2005-2070</a>
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Title
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Care coordination in the medical home: integrating health and related systems of care for children with special health care needs
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Miller 2009 BMC HSR Refs
Creator
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American Academy of Pediatrics Council on Children with Disabilities
Identifier
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<a href="http://doi.org/10.1542/peds.2005-2070" target="_blank" rel="noreferrer">10.1542/peds.2005-2070</a>
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Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
American Academy of Pediatrics Council on Children with Disabilities
Backlog
Journal Article
Miller 2009 BMC HSR Refs
Pediatrics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.106.2.351</a>
Dublin Core
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Title
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Palliative care for children.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Terminal Care; Pediatrics; Longitudinal Studies; Preschool; Death and Euthanasia; infant; Practice Guidelines
Creator
An entity primarily responsible for making the resource
American Academy of Pediatrics; Committee on Bioethics; American Academy of Pediatrics Committee on Hospital Care
Description
An account of the resource
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</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).
Type
The nature or genre of the resource
Journal Article
2000
American Academy of Pediatrics
American Academy of Pediatrics Committee on Hospital Care
Backlog
Child
Committee on Bioethics
Death and Euthanasia
Humans
Infant
Journal Article
Longitudinal Studies
Palliative Care
Pediatrics
Practice Guidelines
Preschool
Terminal Care
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.108.4.1020" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.108.4.1020</a>
Dublin Core
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Title
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Acetaminophen toxicity in children
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Humans; Pediatrics; Adult; Analgesics; Age Factors; Acetaminophen/adverse effects/poisoning/therapeutic use; Charcoal/therapeutic use; Ibuprofen/therapeutic use; Non-Narcotic/adverse effects/poisoning/therapeutic use; Overdose/diagnosis/therapy
Creator
An entity primarily responsible for making the resource
American Academy of PediatricsCommittee on Drugs
Description
An account of the resource
Acetaminophen is widely used in children, because its safety and efficacy are well established. Although the risk of developing toxic reactions to acetaminophen appears to be lower in children than in adults, such reactions occur in pediatric patients from intentional overdoses. Less frequently, acetaminophen toxicity is attributable to unintended inappropriate dosing or the failure to recognize children at increased risk in whom standard acetaminophen doses have been administered. Because the symptoms of acetaminophen intoxication are nonspecific, the diagnosis and treatment of acetaminophen intoxication are more likely to be delayed in unintentional cases of toxicity. This statement describes situations and conditions that may contribute to acetaminophen toxicity not associated with suicidal intentions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.108.4.1020" target="_blank" rel="noreferrer">10.1542/peds.108.4.1020</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).
Type
The nature or genre of the resource
Journal Article
2001
Acetaminophen/adverse effects/poisoning/therapeutic use
Adult
Age Factors
American Academy of PediatricsCommittee on Drugs
Analgesics
Backlog
Charcoal/therapeutic use
Child
Humans
Ibuprofen/therapeutic use
Journal Article
Non-Narcotic/adverse effects/poisoning/therapeutic use
Overdose/diagnosis/therapy
Pediatrics
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2005-0620C" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2005-0620C</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Summary proceedings from the neonatal pain-control group
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; infant; United States; Pain; Pain Measurement; Respiration; Analgesia; Research Support; U.S. Gov't; Newborn; Pain/drug therapy/etiology; Government Regulation; Anesthesia; N.I.H.; Postoperative/drug therapy; Non-P.H.S.; Extramural; General; Outcome Assessment (Health Care)/methods; Artificial/adverse effects; Clinical Trials/ethics/legislation & jurisprudence
Creator
An entity primarily responsible for making the resource
Anand KJ; Aranda JV; Berde CB; Buckman S; Capparelli EV; Carlo W; Hummel P; Johnston CC; Lantos J; Tutag-Lehr V; Lynn AM; Maxwell LG; Oberlander T; Raju TN; Soriano SG; Taddio A; Walco GA
Description
An account of the resource
Recent advances in neurobiology and clinical medicine have established that the fetus and newborn may experience acute, established, and chronic pain. They respond to such noxious stimuli by a series of complex biochemical, physiologic, and behavioral alterations. Studies have concluded that controlling pain experience is beneficial with respect to short-term and perhaps long-term outcomes. Yet, pain-control measures are adopted infrequently because of unresolved scientific issues and lack of appreciation for the need for control of pain and its long-term sequelae during the critical phases of neurologic maturation in the preterm and term newborn. The neonatal pain-control group, as part of the Newborn Drug Development Initiative (NDDI) Workshop I, addressed these concerns. The specific issues addressed were (1) management of pain associated with invasive procedures, (2) provision of sedation and analgesia during mechanical ventilation, and (3) mitigation of pain and stress responses during and after surgery in the newborn infant. The cross-cutting themes addressed within each category included (1) clinical-trial designs, (2) drug prioritization, (3) ethical constraints, (4) gaps in our knowledge, and (5) future research needs. This article provides a summary of the discussions and deliberations. Full-length articles on procedural pain, sedation and analgesia for ventilated infants, perioperative pain, and study designs for neonatal pain research were published in Clinical Therapeutics (June 2005).
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2005-0620C" target="_blank" rel="noreferrer">10.1542/peds.2005-0620C</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Analgesia
Anand KJ
Anesthesia
Aranda JV
Artificial/adverse effects
Backlog
Berde CB
Buckman S
Capparelli EV
Carlo W
Clinical Trials/ethics/legislation & jurisprudence
Extramural
General
Government Regulation
Humans
Hummel P
Infant
Johnston CC
Journal Article
Lantos J
Lynn AM
Maxwell LG
N.I.H.
Newborn
Non-P.H.S.
Oberlander T
Outcome Assessment (Health Care)/methods
Pain
Pain Measurement
Pain/drug therapy/etiology
Pediatrics
Postoperative/drug therapy
Raju TN
Research Support
Respiration
Soriano SG
Taddio A
Tutag-Lehr V
U.S. Gov't
United States
Walco GA
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/http://pediatrics.aappublications.org/content/141/1/e20170559" target="_blank" rel="noreferrer noopener">http://pediatrics.aappublications.org/content/141/1/e20170559</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Provider Perspectives on Use of Medical Marijuana in Children With Cancer
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cross-Sectional Studies; Cannabis; Child; Logistic Models; Washington; Only Child
Creator
An entity primarily responsible for making the resource
Ananth P; Ma C; Al-Sayegh H; Kroon L; Klein V; Wharton C; Hallez E; Braun Ilana; Michelson K; Rosenberg AR; London W; Wolfe J
Description
An account of the resource
BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS: We sent a 32-item, cross-sectional survey to 654 pediatric oncology providers in Illinois, Massachusetts, and Washington characterizing MM practices, knowledge, attitudes, and barriers. Forty-eight percent responded; 44% (n = 288) were included in analyses. Providers were stratified by status as legally eligible to certify (ETC) for MM. We used Fisher�s exact and Wilcoxon rank tests and univariate and multivariate logistic regression models for group comparisons.RESULTS: The provider median age was 35 years (range 22�70 years); 33% were ETC (83 physicians; 13 Washington state advance practice providers). Thirty percent of providers received ?1 request for MM in the previous month. Notably, only 5% of all providers knew state-specific regulations. ETC providers were more likely to know that MM is against federal laws (P < .0001). Whereas most providers (92%) reported willingness to help children with cancer access MM, in adjusted models, ETC providers were less likely to indicate approval of patient MM use by smoking, oral formulations, as cancer-directed therapy, or to manage symptoms (P < .005 for all). Forty-six percent of all providers cited the absence of standards around formulations, potency, or dosing to be the greatest barrier to recommending MM.CONCLUSIONS: Most pediatric oncology providers are willing to consider MM use in children with cancer and receive frequent inquiries. However, ETC providers endorse less favorable attitudes overall. The absence of standards is an important barrier to recommending MM.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
2017
Al-Sayegh H
Ananth P
Braun Ilana
Cannabis
Child
Cross-sectional Studies
Hallez E
Klein V
Kroon L
Logistic Models
London W
Ma C
Michelson K
Oncology 2018 List
Only Child
Pediatrics
Rosenberg AR
Washington
Wharton C
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Hospital Use In The Last Year Of Life For Children With Life-threatening Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
An entity primarily responsible for making the resource
Ananth P; Melvin P; Feudtner C; Wolfe J; Berry JG
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Although many adults experience resource-intensive and costly health care in the last year of life, less is known about these health care experiences in children with life-threatening complex chronic conditions (LT-CCCs). We assessed hospital resource use in children by type and number of LT-CCCs. METHODS: A retrospective analysis of 1252 children with LT-CCCs, ages 1 to 18 years, who died in 2012 within 40 US children’s hospitals of the Pediatric Health Information System database. LT-CCCs were identified with International Classification of Diseases, 9th Revision, Clinical Modification codes. Using generalized linear models, we assessed hospital admissions, days, costs, and interventions (mechanical ventilation and surgeries) in the last year of life by type and number of LT-CCCs. RESULTS: In the last year of life, children with LT-CCCs experienced a median of 2 admissions (interquartile range [IQR] 1–5), 27 hospital days (IQR 7–84), and $142 562 (IQR $45 270–$410 087) in hospital costs. During the terminal admission, 76% (n = 946) were mechanically ventilated; 36% (n = 453) underwent surgery. Hospital use was greatest (P < .001) among children with hematologic/immunologic conditions (99 hospital days [IQR 51–146]; cost = $504 145 [IQR $250 147–$879 331]) and children with ≥3 LT-CCCs (75 hospital days [IQR 28–132]; cost = $341 222 [IQR $146 698–$686 585]). CONCLUSIONS: Hospital use for children with LT-CCCs in the last year of life varies significantly across the type and number of conditions. Children with hematologic/immunologic or multiple conditions have the greatest hospital use. This information may be useful for clinicians striving to improve care for children with LT-CCCs nearing the end of life.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2015-0260
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).
2015
Ananth P
Berry JG
Feudtner C
July 2017 List
Melvin P
Pediatrics
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Life-saving Apparatus; Severe Combined Immunodeficiency; Research; Parents; Analysis; Methods
Creator
An entity primarily responsible for making the resource
Andrew S Nickels; G Douglas Myers; Liza-Marie Johnson; Avni Joshi; Richard R Sharp; Lantos J
Description
An account of the resource
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
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).
2016
Analysis
Andrew S Nickels
Avni Joshi
G Douglas Myers
July 2016 List
Lantos J
Life-saving Apparatus
Liza-Marie Johnson
Methods
Parents
Pediatrics
Research
Richard R Sharp
Severe Combined Immunodeficiency
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.112.6.1215" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.112.6.1215</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Annual summary of vital statistics - 2002
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Creator
An entity primarily responsible for making the resource
Arias E; MacDorman MF; Strobino DM; Guyer B
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.112.6.1215" target="_blank" rel="noreferrer">10.1542/peds.112.6.1215</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2003
2003
Arias E
Backlog
Guyer B
Journal Article
MacDorman MF
Pediatrics
Strobino DM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2007-0854" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2007-0854</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parent-reported quality of life of children with cerebral palsy in Europe.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Longitudinal Studies
Creator
An entity primarily responsible for making the resource
Arnaud C; White-Koning M; Michelsen SI; Parkes J; Parkinson K; Thyen U; Beckung E; Dickinson HO; Fauconnier J; Marcelli M; McManus V; Colver A
Description
An account of the resource
OBJECTIVE: The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy. METHODS: Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains. RESULTS: The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life. CONCLUSIONS: The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-0854" target="_blank" rel="noreferrer">10.1542/peds.2007-0854</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Arnaud C
Backlog
Beckung E
Colver A
Dickinson HO
Fauconnier J
Journal Article
Longitudinal Studies
Marcelli M
McManus V
Michelsen SI
Parkes J
Parkinson K
Pediatrics
Thyen U
White-Koning M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2007-1005</a>
Dublin Core
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Title
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Fathers' experiences in the neonatal intensive care unit: A search for control
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Fathers
Creator
An entity primarily responsible for making the resource
Arockiasamy V; Holsti L; Albersheim S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer">10.1542/peds.2007-1005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2008
2008
Albersheim S
Arockiasamy V
Backlog
Fathers
Holsti L
Journal Article
Pediatrics
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 4 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2007-1005</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Fathers' experiences in the neonatal intensive care unit: a search for control.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
Creator
An entity primarily responsible for making the resource
Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Description
An account of the resource
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
*Fathers/px [Psychology]
*Intensive Care Units, Neonatal
*Internal-External Control
2008
2023 SE4 - Parent Perspectives
Albersheim, Susan
Arockiasamy, Vincent
Communication
Critical Illness
Father-child Relations
Holsti, Liisa
Humans
Infant, Newborn
Infant, Premature
Intensive Care Units, Neonatal/og [Organization & Administration]
Interviews As Topic
Male
Pediatrics
Professional-family Relations
Qualitative Research
Religion
Stress, Psychological
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-054796</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Advance Care Planning; Advance Directives; Confidence Intervals; End of Life; Odds Ratio; United States
Creator
An entity primarily responsible for making the resource
Baker JN; Friebert S; Needle J; Jiang J; Wang J; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHOD(S): Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULT(S): Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSION(S): High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences. Copyright © 2022 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Advance Care Planning
Advance Directives
April 2022 List
Baker JN
Confidence Intervals
End Of Life
Friebert S
Jiang J
Lyon ME
Needle J
Odds Ratio
Pediatrics
United States
Wang J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2004-2084" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-2084</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Cohort Studies; Inpatients; Hospitals; Health Expenditures; Colorado; adolescent; Preschool; Outpatient Clinics; infant; Costs and Cost Analysis; Newborn; Hospitalization/statistics & numerical data; Outpatients; disabled children; Specialties; Laboratories; Hospital/economics/utilization; Exceptional; Health Maintenance Organizations/economics/utilization; Health Resources/statistics & numerical data; Health Services Needs and Demand/economics; Hospital Costs; Hospital Departments/economics/utilization; Medicaid/economics/utilization; Medical/economics; Needs Assessment/economics; Pediatric/economics/organization & administration; Primary Health Care/economics/utilization
Creator
An entity primarily responsible for making the resource
Berman S; Rannie M; Moore L; Elias E; Dryer LJ; Jones MD
Description
An account of the resource
OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these children as well as the effects of a comprehensive primary care program on access and quality. The objectives of this study were, first, to determine costs as well as the payments associated with hospital ambulatory and inpatient services for children with multisystem disorders followed by a comprehensive primary care clinic; and, second, to determine the effect of enrollment in a hospital-based comprehensive primary care clinic on ambulatory and inpatient utilization patterns and expenditures for children with multisystem disorders. METHODS: The study population for the payment analysis consisted of 1012 children of all ages who were seen in the Special Primary Care Clinic (SPCC) in 2001. For these children, outcomes included direct costs, total (direct plus allocated overhead) costs, and payments per patient per 365 days after their first SPCC visit in 2001. A total of 175 of these patients were 4 years of age or older and had no SPCC visit before their first visit in 2001. We compared utilization and expenditures for the 175 children during the year before enrollment in SPCC with those in the year after enrollment. The Children's Hospital administrative database was used to document direct costs, total costs, and payments by type of service for 365 days after an index visit. Ambulatory services included medical and surgical ambulatory, inpatient, emergency department (ED), and ancillary services. We determined the proportion of children who had visits; the visit rates per 100 child-years; and the average total and direct costs per visit, per child with a visit, and per child-year. Inpatient services data included non-intensive care and intensive care hospitalization rates per 100 child-years; the proportion of children hospitalized; their average length of stay; and the average total and direct costs per hospitalization, per patient hospitalized, and per child-year of total patients in the cohort. RESULTS: For 1012 children who were seen in SPCC in 2001, the hospital overall loss per child-year was $956. The loss per child-year for outpatient services was $1554. This loss was partially offset by a gain from inpatient services of $598. For the 175 patients for whom data were available to compare costs before and after enrollment in the SPCC, there were no significant differences in hospitalization or in direct costs per patient for patients who were hospitalized. The average length of non-intensive care stay was lower after enrollment (4.8 vs 11.7). In the surgical specialty analysis, children were more likely to see a surgeon after enrollment (41% vs 21%) and had a higher rate of visits per 100 child-years (102.3 vs 51.4). Differences in medical subspecialty, ancillary, and ED services did not achieve statistical significance. CONCLUSION: This study suggests that children with multisystem disorders are medically fragile and require frequent hospitalizations and ED visits even with improved primary care. Enrollment in a comprehensive primary care program was associated with a decreased length of stay for non-intensive care hospitalizations and with increased use of surgical services.
2005
Identifier
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<a href="http://doi.org/10.1542/peds.2004-2084" target="_blank" rel="noreferrer">10.1542/peds.2004-2084</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).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Backlog
Berman S
Child
Cohort Studies
Colorado
Costs And Cost Analysis
Disabled Children
Dryer LJ
Elias E
Exceptional
Female
Health Expenditures
Health Maintenance Organizations/economics/utilization
Health Resources/statistics & numerical data
Health Services Needs and Demand/economics
Hospital Costs
Hospital Departments/economics/utilization
Hospital/economics/utilization
Hospitalization/statistics & numerical data
Hospitals
Humans
Infant
Inpatients
Jones MD
Journal Article
Laboratories
Male
Medicaid/economics/utilization
Medical/economics
Moore L
Needs Assessment/economics
Newborn
Outpatient Clinics
Outpatients
Pediatric/economics/organization & administration
Pediatrics
Preschool
Primary Health Care/economics/utilization
Rannie M
Specialties
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2005-1544" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2005-1544</a>
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Title
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In-hospital mortality for children with hypoplastic left heart syndrome after stage I surgical palliation: teaching versus nonteaching hospitals
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Adolescent Child Child; Extramural Research Support; N.I.H.; NewbornPalliative Care Pulmonary Artery/surgery Research Support; P.H.S. Survival Rate United States/epidemiology; Preschool Cohort Studies Comparative Study Heart Ventricles/surgeryHospital MortalityHospitals; Teaching Humans Hypoplastic Left Heart Syndrome/mortality/surgery Infant Infant
Creator
An entity primarily responsible for making the resource
Berry JG; Cowley CG; Hoff CJ; Srivastava R
Description
An account of the resource
OBJECTIVES: Teaching hospitals are perceived to provide a higher quality of care for the treatment of rare disease and complex patients. A substantial proportion of stage I palliation for hypoplastic left heart syndrome (HLHS) may be performed in nonteaching hospitals. This study compares the in-hospital mortality of stage I palliation between teaching and nonteaching hospitals. METHODS: The authors conducted a retrospective cohort study using the Kids' Inpatient Database 1997 and 2000. Patients with HLHS undergoing stage I palliation were identified using International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic and procedural codes. RESULTS: Seven hundred fifty-four and 880 discharges of children with HLHS undergoing stage I palliation in 1997 and 2000, respectively, were identified. The in-hospital mortality for the study population was 28% in 1997 and 24% in 2000. Twenty percent of stage I palliation operations were performed in nonteaching hospitals in 1997. Two percent of operations were performed in nonteaching hospitals in 2000. In 1997 only, in-hospital mortality remained higher in nonteaching hospitals after controlling for stage I palliation hospital volume and condition-severity diagnoses. Low-volume hospitals performing stage I palliation were associated with increased in-hospital mortality in 1997 and 2000. CONCLUSIONS: Patients with HLHS undergoing stage I palliation in nonteaching hospitals experienced increased in-hospital mortality in 1997. A significant reduction in the number of stage I palliation procedures performed in nonteaching hospitals occurred between 1997 and 2000. This centralization of stage I palliation into teaching hospitals, along with advances in postoperative medical and surgical care for these children, was associated with a decrease in mortality. Patients in low-volume hospitals performing stage I palliation continued to experience increased mortality in 2000.
2006
Identifier
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<a href="http://doi.org/10.1542/peds.2005-1544" target="_blank" rel="noreferrer">10.1542/peds.2005-1544</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).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent Child Child
Backlog
Berry JG
Cowley CG
Extramural Research Support
Hoff CJ
Journal Article
N.I.H.
NewbornPalliative Care Pulmonary Artery/surgery Research Support
P.H.S. Survival Rate United States/epidemiology
Pediatrics
PedPal Lit
Preschool Cohort Studies Comparative Study Heart Ventricles/surgeryHospital MortalityHospitals
Srivastava R
Teaching Humans Hypoplastic Left Heart Syndrome/mortality/surgery Infant Infant
U.S. Gov't
-
Dublin Core
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Title
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January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-058241</a>
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Title
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Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Delphi Study; Quality Measures
Creator
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Bogetz JF; Johnston EE; Thienprayoon R; Patneaude A; Ananth P; Rosenberg AR; Workgroup Cambia Advisory
Description
An account of the resource
Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (\textgreater200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM’s importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement.Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, \textless2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation).This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-058241</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Ananth P
Bogetz JF
Delphi Study
January List 2023
Johnston EE
Patneaude A
Pediatrics
quality measures
Rosenberg AR
Thienprayoon R
Workgroup Cambia Advisory
-
Text
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Citation List Month
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/09/26/peds.2017-1662.abstract</a>
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Title
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Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Bona K; Wolfe J
Description
An account of the resource
Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and suffering throughout the continuum of care.1–3 Yet, how best to evaluate the impact of PPC remains a methodological challenge in a field focused on patient-reported outcomes, including symptom alleviation and goal-concordant care.In adult oncology, the benchmarking of palliative care has been facilitated by data demonstrating that end-of-life (EOL) care intensity (which is evaluable with administrative data, such as hospitalization and receipt of ICU care) is discordant with the wishes of adult patients with cancer.4,5 Similar benchmarking in pediatrics has been limited by an unknown correlation of care intensity with family goals and an absence of methodology for pediatric-specific administrative data. In this issue of Pediatrics, Johnston et al6 provide the first US population-based data … Address correspondence to Kira Bona, MD, MPH, Department of Pediatric Oncology, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02115. E-mail: kira.bona{at}childrens.harvard.edu
Identifier
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<b></b><a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1662" target="_blank" rel="noreferrer">10.1542/peds.2017-1662</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).
2017
Bona K
November 2017 List
Pediatrics
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2008-0952" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2008-0952</a>
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Title
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Physicians' contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners' beliefs and self-reported practices
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
An entity primarily responsible for making the resource
Borasino S; Morrison W; Silberman J; Nelson RM; Feudtner C
Description
An account of the resource
OBJECTIVES: Although research with bereaved families has shown that they appreciate contact with clinicians after the child's death, this realm of clinical practice remains empirically uncharted. The objective of this study was to describe pediatric critical care practitioners' attitudes and self-reported practices regarding contacting families after a patient's death. METHODS: A total of 376 board-certified members of the American Academy of Pediatrics Section of Critical Care received e-mail invitations to complete a Web-based questionnaire; 204 members responded (effective response rate: 54.3%). RESULTS: Most (95%) participants reported 0 to 1 patient deaths per week. A total of 79% of the respondents reported contacting families at least sometimes, 71.9% had attended funerals, and only 2.5% thought that it was inappropriate for clinicians to attend funerals. A total of 75.9% agreed that follow-up contact helps the family, whereas 47.3% agreed that follow-up contact helps the physicians. The most common methods of follow-up contact included the passive measures of providing contact information; active methods such as meeting with the family, calling them by telephone, or writing a letter or note were used less often. In multivariable analysis, respondents were more likely to report contact with a family after the death of a child when they affirmed the belief that such contact was useful to the family or to the physician or when they were female physicians. Regarding reported funeral attendance after the death of a patient, multivariable analysis revealed similar patterns of association but to an attenuated and nonstatistically significant degree. CONCLUSIONS: A high proportion of pediatric critical care physicians have contacted bereaved families and attended funerals after the death of a child patient. These practices were consistently associated with the belief that such follow-up contact helps the family or the practitioner.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2008-0952" target="_blank" rel="noreferrer">10.1542/peds.2008-0952</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Borasino S
Feudtner C
Journal Article
Morrison W
Nelson RM
Pediatrics
Silberman J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.114.2.e182" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.114.2.e182</a>
Dublin Core
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Title
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The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Middle Aged; Health Status; Caregivers/psychology; Cerebral Palsy; Telemeres; Employment/statistics & numerical data; Mental Health/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Brehaut JC; Kohen DE; Raina P; Walter SD; Russell DJ; Swinton M; O'Donnell ME; Rosenbaum P
Description
An account of the resource
BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the caregiver (CG). Although a number of recent trends in health care stress the importance of studying and promoting the health of CGs of children with disabilities, the literature in this area exhibits 2 major weaknesses, ie, most studies draw conclusions from relatively small, potentially biased, clinic-based samples and the majority of work has focused on the psychologic health of CGs, whereas little research has been undertaken to study their physical well-being. The goal of this study was to compare the physical and psychologic health of CGs of children with cerebral palsy (CP) with that of the general population of CGs. METHODS: Data on the physical and psychologic health of 468 primary CGs of children with CP, drawn from 18 of 19 publicly funded children's rehabilitation centers in Ontario, Canada, were collected with a self-completed questionnaire and a face-to-face interview. Identical items and scales had been administered previously to nationally representative samples of the Canadian population in 2 large-scale Canadian surveys, ie, the National Population Health Survey (NPHS) and the National Longitudinal Study of Children and Youth (NLSCY). Subsamples of those data, restricted to adult residents of the province of Ontario who were parents, allowed a comparison of our sample of CGs of children with CP with parent samples from both the NLSCY (n = 2414) and the NPHS (n = 5549). OUTCOME MEASURES: Demographic variables included CG age, gender, education, income, and work-related variables. Psychologic health and support variables included social support, family functioning, frequency of contacts, distress, and emotional and cognitive problems. Physical health variables included the number and variety of chronic conditions, vision, hearing, and mobility problems, and experience of pain. RESULTS: CGs of children with CP had lower incomes than did the general population of CGs (proportion with income over 60,000 dollars: CG: 40.9%; NLSCY: 51.4%), despite the absence of any important differences in education between the 2 samples. Results showed that CGs of children with CP were less likely to report working for pay (CG: 66%; NLSCY: 81.2%), less likely to be engaged in full-time work (CG: 67.5%; NLSCY: 73.2%), and more likely to list caring for their families as their main activity (CG: 37.2%; NLSCY: 28.4%). Measures of support showed no difference in reported social support (CG: mean score: 14.5; SD: 3.4; NLSCY: mean score: 14.3; SD: 2.7) or family functioning (CG: mean score: 8.6; SD: 5.6; NLSCY: mean score: 9.0; SD: 4.9) between the 2 samples, although the CG sample did report a statistically greater number of support contacts (CG: mean score: 4.5; SD: 0.7; NPHS: mean score: 4.2; SD: 0.9). Measures of psychologic health showed greater reported distress (CG: mean score: 4.7; SD: 4.4; NPHS: mean score: 2.2; SD: 2.7), chronicity of distress (CG: mean score: 5.5; SD: 1.4; NPHS: mean score: 5.2; SD: 1.1), emotional problems (CG: 25.3% indicating problems; NPHS: 13.7%), and cognitive problems (CG: 38.8%; NPHS: 14.3%) among CGs of children with CP. They also reported a greater likelihood of a variety of physical problems, including back problems (CG: 35.5% reporting the condition; SE: 2.2%; NLSCY: 12.2%; SE: 0.7%), migraine headaches (CG: 24.2%; SE: 2.0%; NLSCY: 11.2%; SE: 0.7%), stomach/intestinal ulcers (CG: 8.4%; SE: 1.3%; NLSCY: 1.7%; SE: 0.3%), asthma (CG: 15.8%; SE: 1.7%; NLSCY: 6.3%; SE: 0.5%), arthritis/rheumatism (CG: 17.3%; SE: 1.8%; NLSCY: 7.3%; SE: 0.5%), and experience of pain (CG: 28.8%; SE: 2.1%; NPHS: 11.0%; SE: 0.5), as well as a greater overall number of chronic physical conditions (CG: 24.1% reporting no chronic conditions; NLSCY: 55.2%). CONCLUSIONS: Although many families cope well despite the added challenges of caring for a child with a disability, our findings suggest that the demands of their children's disabilities can explain differences in the health status of parents and that parents of children with CP are more likely to have a variety of physical and psychologic health problems. Many of these findings are consistent with a stress process model, in which stress from caregiving can directly or indirectly affect a variety of measures of health, although some of the findings (asthma and arthritis) seem to strain this hypothesis. Alternate interpretations of these findings include the possibility that parents who are in regular contact with the health care system may have more opportunities to discuss and receive attention for their own health concerns than do comparison adults or that the greater number of health issues reported by CGs is related to the nature of our study, perhaps leading these parents to focus on their health and well-being in more depth than is usually feasible in a population survey. CGs of children with CP also had lower incomes, despite the absence of any important differences in education. The findings are consistent with the idea that the financial burden of caring for a child with a disability results in part from a reduced availability of these parents to work for pay. IMPLICATIONS FOR SERVICE PROVIDERS: Physicians and other health care professionals should be aware of the important relationship between child disability and CG health. Family-centered policies and services that explicitly consider CG health are likely to benefit the well-being of both CGs and their families. Future work should address the extent to which the family-centeredness of services, as experienced by CGs, is associated with better health outcomes for parents and their families.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.114.2.e182" target="_blank" rel="noreferrer">10.1542/peds.114.2.e182</a>
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Type
The nature or genre of the resource
Journal Article
2004
Adult
Backlog
Brehaut JC
Caregivers/psychology
Cerebral Palsy
Child
Employment/statistics & numerical data
Female
Health Status
Humans
Journal Article
Kohen DE
Male
Mental Health/statistics & numerical data
Middle Aged
O'Donnell ME
Pediatrics
Raina P
Rosenbaum P
Russell DJ
Swinton M
Telemeres
Walter SD
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2010-0072" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-0072</a>
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Title
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Approaches to the difficult patient/parent encounter
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Female; Humans; Male; Physician-Patient Relations; Pediatrics; Parents; Conflict (Psychology); adolescent; Patients/classification
Creator
An entity primarily responsible for making the resource
Breuner CC; Moreno MA
Description
An account of the resource
Most pediatricians have experienced uneasy interactions involving patients and/or their parents. The majority of literature on this topic reflects encounters in adult medicine, without providing much information for pediatricians who also face this challenge. Unique to the pediatric approach is the added quotient of the parent/family dynamic. Patients or their parents may have personality disorders or subclinical mental health issues, physicians may be overworked or have a lack of experience, and the health care system may be overburdened, fragmented, and inundated with poor communication. Recognizing the physical or emotional responses triggered by challenging patients/families may allow the provider to effectively partner with, instead of confront, the patient or the family. In this article we review existing literature on this subject and describe possible strategies for the pediatrician to use during a difficult encounter.
Identifier
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<a href="http://doi.org/10.1542/peds.2010-0072" target="_blank" rel="noreferrer">10.1542/peds.2010-0072</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).
Type
The nature or genre of the resource
Journal Article
2011
Adolescent
Backlog
Breuner CC
Child
Conflict (Psychology)
Female
Humans
Journal Article
Male
Moreno MA
Parents
Patients/classification
Pediatrics
Physician-patient Relations
-
Dublin Core
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Title
A name given to the resource
October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.360" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1542/peds.142.1_MeetingAbstract.360</a>
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Title
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Pattern of Readmissions Among Children with Multiple Chronic Conditions versus Children with No Chronic Conditions
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Bucholz EM; Hall M; Gay J; Harris M; Berry Jay
Description
An account of the resource
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions are at highest risk of readmission after discharge. We sought to compare predictors and timing of readmission in children with multiple chronic conditions to those in children with no chronic conditions. Methods: Using data from the 2013 National Readmissions Database, we analyzed patients aged 1 to 18 years with no chronic conditions or 4 or more chronic conditions. The daily hazard of …
Identifier
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<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.360" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.360</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Berry Jay
Bucholz EM
Gay J
Hall M
Harris M
Pediatrics
September 2018 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
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2009-1658" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2009-1658</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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Increasing Prevalence of Medically Complex Children in US Hospitals
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
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Cohen 2006 BMC HSR Refs
Creator
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Burns KH; Casey PH; Lyle RE; Bird TM; Fussell JJ; Robbins JM
Identifier
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<a href="http://doi.org/10.1542/peds.2009-1658" target="_blank" rel="noreferrer">10.1542/peds.2009-1658</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).
Type
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Journal Article
Description
An account of the resource
2010
2010
Backlog
Bird TM
Burns KH
Casey PH
Cohen 2006 BMC HSR Refs
Fussell JJ
Journal Article
Lyle RE
Pediatrics
Robbins JM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-052130</a>
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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Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
Creator
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Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Description
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BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
2022
April 2022 List
Attitude Of Health Personnel
Callahan KP
Decision Making
Feudtner C
Flibotte J
Infants
Joffe S
Munson D
Neonatologists
Pediatrics
Physicians
Skraban C
Wild KT
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2005-0789" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2005-0789</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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Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
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Child; Humans; home care services; Family; caregivers; Respiration; Family Health; Stress; Psychological; Ethics; Artificial
Creator
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Carnevale FA; Alexander E; Davis M; Rennick J; Troini Rita
Description
An account of the resource
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. METHODS: A qualitative method based on Richard Zaner's interpretive framework was selected for this study. The population of interest for this study was the families of children who are supported by a ventilator or a positive-pressure device at home. Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Children in the study population fell into 4 diagnostic groups: (1) abnormal ventilatory control (eg, central hypoventilation syndrome), (2) neuromuscular disorders, (3) spina bifida, and (4) craniofacial or airway abnormalities resulting in upper airway obstruction. All 4 of these diagnostic groups were included in this study. Among the 12 children recruited, 4 received ventilation via tracheostomies, and 8 received ventilation with face masks. All of the latter received ventilation only at night, except for 1 child, who received ventilation 24 hours a day. Family moral experiences were investigated using semistructured interviews and fieldwork observations conducted in the families' homes. RESULTS: Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children's needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was "no free choice" in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of "normal" families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This "striving for stability" was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child's condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child's life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families' respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the "moral order" of their lives. They contemplated how "good things" and "bad things" are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or "disconnected" from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. CONCLUSIONS: These findings make important contributions by (1) advancing our understanding of the moral experiences of this group of families; (2) speaking to the larger context of other technology-dependent children who require home care; (3) relating home care experiences to neonatal, critical care, and other hospital services, suggesting that these settings examine their approaches to this population that may impose preventable burdens on the lives of these children and their families; and (4) examining a moral problem with an empirical method. Such problems are typically investigated through conceptual analyses, without directly examining lived experience. These findings advance our thinking about how we ought to care for these children, through a better understanding of what it is like to care for them and the corresponding major distresses and rewarding enrichments. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings. Integrated community support services are required to help counter the significant distress endured by these families. Additional research is required to examine the experience of other families who have decided either not to bring home their child who requires ventilation or withdraw ventilation and let the child die.
2006-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2005-0789" target="_blank" rel="noreferrer">10.1542/peds.2005-0789</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Alexander E
Artificial
Backlog
Caregivers
Carnevale FA
Child
Davis M
Ethics
Family
Family Health
home care services
Humans
Journal Article
Pediatrics
Psychological
Rennick J
Respiration
Stress
Troini Rita
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2003-0654-f</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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Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Female; Hospitalization; Humans; infant; Male; Palliative Care; Terminal Care; Terminally Ill; Withholding Treatment; Hospital Mortality; Length of Stay; Longitudinal Studies; Academic Medical Centers; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; retrospective studies; Hospitalized; Pain/diagnosis/drug therapy
Creator
An entity primarily responsible for making the resource
Carter BS; Howenstein M; Gilmer MJ; et al
Description
An account of the resource
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. DESIGN: Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children's Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. RESULTS: Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. CONCLUSIONS: The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">10.1542/peds.2003-0654-f</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Academic Medical Centers
Adolescent
Backlog
Carter BS
Child
et al
Female
Gilmer MJ
Hospital Mortality
Hospitalization
Hospitalized
Howenstein M
Humans
Infant
Journal Article
Length Of Stay
Longitudinal Studies
Male
Newborn
Non-U.S. Gov't
Pain/diagnosis/drug therapy
Palliative Care
Pediatrics
Preschool
Research Support
Retrospective Studies
Terminal Care
Terminally Ill
Withholding Treatment