1
40
30
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Title
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July 2021 List
Text
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July 2021 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.05.019</a>
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“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Pediatrics; Communication; Bereavement; Education; Residency
Creator
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Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Description
An account of the resource
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Baker JN
Bereavement
Chen L
Communication
Education
Journal of Pain and Symptom Management
July 2021 List
Kaye EC
Pediatrics
Porter AS
residency
Snaman JM
Weaver MS
Zhaohua L
-
Dublin Core
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June 2022 List
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June 2022 List
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<a href="http://doi.org/10.1097/NJH.0000000000000867" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000867</a>
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A Narrative Review of Pediatric Respite Care Initiatives in the United States
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Journal of Hospice and Palliative Nursing
Date
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2022
Subject
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Child; Hospices; Medicaid; Respite Care; United States
Creator
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Ferragamo T; Pituch KJ; Sorkin T; Simon N; Lindley LC; Weaver MS
Description
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Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
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<a href="http://doi.org/10.1097/NJH.0000000000000867" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000867</a>
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2022
April 2022 List
Child
Ferragamo T
Hospices
Journal of Hospice and Palliative Nursing
Lindley LC
Medicaid
Pituch KJ
Respite Care
Simon N
Sorkin T
United States
Weaver MS
-
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Title
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December 2022 List
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December List 2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.07.008" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.07.008</a>
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Title
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A Plateau in Pediatric Palliative Program Prevalence
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Journal of Pain and Symptom Management
Date
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2022
Subject
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child; human; letter; palliative therapy; prevalence; quality of life
Creator
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Weaver MS; Shostrom VK; Kaye EC; Keegan A; Lindley LC
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.07.008</a>
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Description
An account of the resource
The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality that only 80% of children’s hospitals offer PPC programs and only half have access to hospice care for children. In reconciling historic trends in PPC program growth with current limitations in access and scope, events and lessons from the past 6 years’ plateau should inform future programmatic development. The purpose of this report is to describe and comment on trends in inpatient PPC program growth from 2015 to 2020. Recommendations for national expansion of PPC programs are included.
2022
Child
December List 2022
Human
Journal of Pain and Symptom Management
Kaye EC
Keegan A
Letter
Lindley LC
Palliative Therapy
Prevalence
Quality Of Life
Shostrom VK
Weaver MS
-
Dublin Core
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Title
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March 2021 List
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Citation List Month
March 2021 List
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<a href="http://doi.org/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0617</a>
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Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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communication; pediatric palliative care; bereavement; telehealth
Creator
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Weaver MS; Jurgens A; Neumann ML; Schalley SM; Kellas JK; Navaneethan H; Tullis J
Description
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Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0617</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
Bereavement
Communication
Journal of Palliative Medicine
Jurgens A
Kellas JK
March 2021 List
Navaneethan H
Neumann ML
Pediatric Palliative Care
Schalley SM
Telehealth
Tullis J
Weaver MS
-
Dublin Core
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2021.0005</a>
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Title
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Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Publisher
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Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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child; United States; article; female; hospital admission; human; male; priority journal; quality of life; palliative therapy; hospice; Europe; parent; interpersonal communication; legal guardian; patient comfort; physician; child parent relation; demographics; care behavior; health belief; voice; nurse; medical decision making; encouragement; reassurance
Creator
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Neumann ML; Weaver MS; Lord B; Wiener L; Hinds PS
Description
An account of the resource
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. Conclusions: The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.
Identifier
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<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0005</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
Article
August List 2041
care behavior
Child
Child Parent Relation
Demographics
encouragement
Europe
Female
Health Belief
Hinds PS
Hospice
Hospital Admission
Human
Interpersonal Communication
legal guardian
Lord B
Male
Medical Decision Making
Neumann ML
Nurse
Palliative Medicine Reports
Palliative Therapy
Parent
Patient Comfort
Physician
Priority Journal
Quality Of Life
reassurance
United States
Voice
Weaver MS
Wiener L
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
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<a href="http://doi.org/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-021-01909-5</a>
Dublin Core
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Choiceless options: when hospital-based services represent the only palliative care offering
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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availability; palliative care; pediatric; rural
Creator
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Weaver MS; Lindley LC
Description
An account of the resource
Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family's preference with actual care choices. IMPACT: Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.
Identifier
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<a href="http://doi.org/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01909-5</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
availability
February 2022 List
Lindley LC
Palliative Care
Pediatric
Pediatric Research
Rural
Weaver MS
-
Dublin Core
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February 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.
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February List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.08.009</a>
Dublin Core
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Title
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Continued Challenges Accessing Pediatric Hospice Services
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Humans; Hospices; Hospice Care; Palliative Care
Creator
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Aglio T; Autrey AK; Shostrom VK; Weaver MS; Kaye EC; Lindley LC
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.08.009</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
Aglio T
Autrey AK
Child
February List 2023
Hospice Care
Hospices
Humans
Journal of Pain and Symptom Management
Kaye EC
Lindley LC
Palliative Care
Shostrom VK
Weaver MS
-
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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October 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
October 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0252">http://doi.org/10.1089/jpm.2022.0252</a>
Dublin Core
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Title
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Expressing Condolences to a Family after the Death of a Child #443
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Bereavement; Child; Death; Family; Humans
Creator
An entity primarily responsible for making the resource
Wiener L; Lichtenthal W; Weaver MS
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0252">10.1089/jpm.2022.0252</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).
Description
An account of the resource
Background The origins of the word condolence stem from Latin roots: com ‘together,” and dolere, “to grieve”. Parents grieving the death of their child benefit from condoling words and actions of those around them. Grieving the death of a child differs from other types of bereavement, as children are not meant to precede their parents in death, particularly in modern times. Thus, words of condolence should account for the ground-shattering change experienced within the family’s life. Meaningful, personal, and compassionate letters of condolence can be both a tribute to the child who died and a source of comfort to the parents. Fast Fact #22 discusses condolence letters for the general population.
2022
Bereavement
Child
Death
Family
Humans
Journal of Palliative Medicine
Lichtenthal W
October 2022 List
Weaver MS
Wiener L
-
Dublin Core
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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.2020-049403" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-049403</a>
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Title
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Family Caregiver Partnerships in Palliative Care Research Design and Implementation
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric; palliative care; Research Design; family caregivers; partnerships
Creator
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Weaver MS; Wiener L; Moon MM; Gordon B; Patterson KK; Hinds PS
Description
An account of the resource
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”1 Similarly, family partnerships in pediatric palliative care (PPC) research represent an innovative approach to the planning, delivery, and evaluation of research that is grounded in mutually beneficial relationships that recognize the importance of the family caregiver perspective. The goal of partnered research or study teams is to synthesize the unique perspectives of family caregivers, clinicians, regulatory representatives, and researchers to strengthen research design and implementation. This is accomplished by each unique stakeholder speaking from their own perspective, contributing what they know, and working together to integrate perspectives. The process of moving from just inviting family caregivers to be research subjects to actually engaging with family caregivers as … Address correspondence to Meaghann S. Weaver, MD, MPH, FAAP, Hand in Hand/Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, 8200 Dodge St, Omaha, NE 68198. E-mail: meweaver{at}childrensomaha.org
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-049403</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Family Caregivers
Gordon B
Hinds PS
Moon MM
Palliative Care
partnerships
Patterson KK
Pediatric
Pediatrics
Research Design
Weaver MS
Wiener L
-
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
May 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
May 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.03.016</a>
Dublin Core
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Title
A name given to the resource
Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
COVID-19; global; impact; pediatric palliative care; survey
Creator
An entity primarily responsible for making the resource
McNeil MJ; Kaye EC; Vedaraju Y; Baker JN; Devidas M; Downing J; Graetz D; Ranadive R; Rosenberg AR; Wiener L; Weaver MS
Description
An account of the resource
Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. Results: One hundred and fifty-six providers were included in the final analysis with 59 countries and 6 continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation. Conclusions: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. Article Summary: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.016</a>
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2021
Baker JN
COVID-19
Devidas M
Downing J
global
Graetz D
Impact
Journal of Pain and Symptom Management
Kaye EC
May 2021 List
McNeil MJ
Pediatric Palliative Care
Ranadive R
Rosenberg AR
Survey
Vedaraju Y
Weaver MS
Wiener L
-
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-4018</a>
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Good-Parent Beliefs: Research, Concept, and Clinical Practice
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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administration; communication skills; hospice; interpersonal skills; palliative medicine; Parent; practice management
Creator
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Weaver MS; October T; Feudtner C; Hinds PS
Description
An account of the resource
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
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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
-
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Title
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June 2018 List
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Text
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Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2017.3910" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2017.3910</a>
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Title
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Growing Symbiotic Local Partnerships to Nurture Quality Pediatric Hospice Care in Rural Regions: Companion Planting
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JAMA Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Weaver MS
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<a href="http://doi.org/10.1001/jamapediatrics.2017.3910" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2017.3910</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).
2018
JAMA Pediatrics
June 2018 List
Weaver MS
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28921" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28921</a>
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Homestead Together: Pediatric Palliative Care Telehealth Support for Rural Children with Cancer during Home-Based End-Of-Life Care
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Oncology
Creator
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Weaver MS; Shostrom VaK; Neumann ML; Robinson JE; Hinds PS
Description
An account of the resource
BACKGROUND: Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. METHODS: The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based-hospice care. Each child received standard of care home-based hospice care from an adult-trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. RESULTS: Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4-95). Children self-reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end-of-life care. CONCLUSION: Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.
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<a href="http://doi.org/10.1002/pbc.28921" target="_blank" rel="noreferrer noopener">10.1002/pbc.28921</a>
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2021
2021 Special Edition - Oncology
Hinds PS
Neumann ML
Oncology
Pediatric Blood & Cancer
Robinson JE
Shostrom VaK
Weaver MS
-
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Title
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February 2021 List
Text
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February 2021 List
URL Address
<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children7120265</a>
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Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
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Children (Basel)
Date
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2020
Subject
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pediatric; family; parenting; communication; pediatric palliative care; complex medical needs
Creator
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Weaver MS; Neumann ML; Lord B; Wiener L; Lee J; Hinds PS
Description
An account of the resource
BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good parent" comes into existence for parents, (2) How parents' definition of "being a good parent" may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. AIM: The purpose of this study was to explore these current gaps in the "good parent concept" knowledge base from the perspective of parents of children with chronic or complex illness. MATERIALS AND METHODS: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. RESULTS: The term "trying to be a good parent" resonated with 85% of the 67 responding parents. For the majority of parents, the concept of "being a good parent" started to exist in parental awareness before the child's birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child's prognosis and changing health as influential on their "trying to be a good parent" concept. Parental advocacy, child's age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of "being a good parent". CONCLUSIONS: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.
Identifier
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<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">10.3390/children7120265</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
Children (Basel)
Communication
complex medical needs
Family
February 2021 List
Hinds PS
Lee J
Lord B
Neumann ML
Parenting
Pediatric
Pediatric Palliative Care
Weaver MS
Wiener L
-
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/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0131</a>
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Title
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Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Publisher
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Journal of Palliative Medicine
Date
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2021
Subject
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Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Creator
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Weaver MS; Hinds PS; Kellas JK; Hecht ML
Description
An account of the resource
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</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
Adolescence
Child
Communication
compassion
Conceptual Framework
Coping
Family Centered Care
Hecht ML
Hinds PS
Journal of Palliative Medicine
Kellas JK
Male
Palliative Care
Parental Attitudes
Parenting
Parents
Pediatric Care
Personality
Professional-family Relations
Social Identity
Stress
Support
Theoretical models
Weaver MS
-
Dublin Core
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Title
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August 2018 List
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Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000436" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000436</a>
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Title
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Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care
Publisher
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Journal of Palliative Nursing
Date
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2018
Creator
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Weaver MS; Wichman B; Bace S; Schroeder D; Vail C; Wichman C; Macfadyen A
Description
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The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage (P < .02) correlated with the gap in home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.
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<a href="http://doi.org/10.1097/njh.0000000000000436" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000436</a>
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2018
August 2018 List
Bace S
Journal of Palliative Nursing
Macfadyen A
Schroeder D
Vail C
Weaver MS
Wichman B
Wichman C
-
Dublin Core
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0203</a>
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Title
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Mindful Movement: Tai Chi, Gentle Yoga, and Qi Gong for Hospitalized Pediatric Palliative Care Patients and Family Members
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
mindfulness;palliative therapy;qigong;Tai Chi;yoga;adverse outcome;caregiver;Child;hospital patient;human;intensive care unit;letter;movement therapy;occupational therapist;pediatric patient;quality of life
Creator
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Parry SM;Staenberg B;Weaver MS
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0203</a>
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2018
adverse outcome
Caregiver
Child
Hospital Patient
Human
Intensive Care Unit
Journal of Palliative Medicine
Letter
mindfulness
movement therapy
November 2018 List
occupational therapist
Palliative Therapy
Parry SM
pediatric patient
qigong
Quality Of Life
Staenberg B
Tai Chi
Weaver MS
Yoga
-
Dublin Core
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Title
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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s1478951521000225</a>
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Navigating the Terrain of Moral Distress: Experiences of Pediatric End of Life Care and Bereavement during COVID-19
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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End of life; Pediatric palliative care; Moral Distress; COVID-19; beareavement
Creator
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Wiener L; Rosenberg AR; Pennarola B; Fry A; Weaver MS
Description
An account of the resource
Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
Identifier
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<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000225</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
beareavement
COVID-19
End Of Life
Fry A
Moral Distress
Palliative & Supportive Care
Pediatric Palliative Care
Pennarola B
Rosenberg AR
Weaver MS
Wiener L
-
Dublin Core
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Title
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April 2019 List
Text
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Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.jpeds.2015.05.002</a>
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Title
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Research Priorities in Pediatric Palliative Care
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
Creator
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Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Description
An account of the resource
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</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).
2015
Anghelescu D
April 2019 List
Attitude Of Health Personnel
Baker JN
Carter B
Cunningham MJ
Delphi Technique
Feudtner C
Friebert S
Gibson DV
Hinds PS
Humans
Johnson L
Jones B
Journal of Pediatrics
Kane J R
Levine D R
Mandrell B
Palliative Care
Parents/px [psychology]
Pediatrics
Research
United States
Weaver MS
Wolfe J
-
Dublin Core
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Title
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February 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
February 2018 List
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000576</a>
Dublin Core
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Title
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Surprised by Benefit in Pediatric Palliative Care Research
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care
Creator
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Weaver MS; Bell CJ; Diver JL; Jacobs S; Lyon ME; Mooney-Doyle K; Newman AR; Slutsman J; Hinds PS
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000576</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).
2018
Bell CJ
Cancer Nursing
Diver JL
February 2018 List
Hinds PS
Jacobs S
Lyon ME
Mooney-Doyle K
Newman AR
Palliative Care
Slutsman J
Weaver MS
-
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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May 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0483</a>
Dublin Core
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Title
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The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
pediatric palliative care; benefits and burdens; palliative care research
Creator
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Weaver MS; Mooney-Doyle K; Kelly KP; Montgomery K; Newman AR; Fortney CA; Bell CJ; Spruit JL; Kurtz U M; Wiener L; Schmidt CM; Madrigal VN; Hinds PS
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0483</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).
Description
An account of the resource
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
2019
Bell CJ
benefits and burdens
Fortney CA
Hinds PS
Journal of Palliative Medicine
Kelly KP
Kurtz U M
Madrigal VN
May 2019 List
Montgomery K
Mooney-Doyle K
Newman AR
palliative care research
Pediatric Palliative Care
Schmidt CM
Spruit JL
Weaver MS
Wiener L
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.12.003</a>
Dublin Core
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Title
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The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Kaye EC; Weaver MS; DeWitt LH; Byers E; Stevens SE; Lukowski J; Shih B; Zalud K; Applegarth J; Wong HN; Baker JN; Ullrich CK; Committee Aahpm Research
Description
An account of the resource
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.003</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Applegarth J
Baker JN
Byers E
Committee Aahpm Research
DeWitt LH
Journal of Pain and Symptom Management
Kaye EC
Lukowski J
Oncology
Shih B
Stevens SE
Ullrich CK
Weaver MS
Wong HN
Zalud K
-
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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February 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
February 2021 List
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0589" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0589</a>
Dublin Core
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Title
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The Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatric; pediatric palliative care; interdisciplinary; coronavirus pandemic
Creator
An entity primarily responsible for making the resource
Weaver MS; Rosenberg AR; Fry A; Shostrom V; Wiener L
Description
An account of the resource
Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses. Results: N = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members (p < 0.01) and frequency of team counseling, education, or support meetings (p < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. Conclusions: While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0589" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0589</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
coronavirus pandemic
February 2021 List
Fry A
Interdisciplinary
Journal of Palliative Medicine
Pediatric
Pediatric Palliative Care
Rosenberg AR
Shostrom V
Weaver MS
Wiener L
-
Dublin Core
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Title
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September 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
September 2021 List
URL Address
<a href="http://doi.org/10.31478/202108a" target="_blank" rel="noreferrer noopener">http://doi.org/10.31478/202108a</a>
Dublin Core
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Title
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The Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions
Publisher
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NAM Perspectives
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
adolescents; Advance care planning; children; readiness; serious illness
Creator
An entity primarily responsible for making the resource
Wiener L; Bell CJ; Spruit JL; Weaver MS; Thompson AL
Description
An account of the resource
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain meaningful conversations across clinical settings. Caring for C-AYA with life-threatening illnesses is complex for family caregivers and HCPs. Among […]
Identifier
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<a href="http://doi.org/10.31478/202108a" target="_blank" rel="noreferrer noopener">10.31478/202108a</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescents
Advance Care Planning
Bell CJ
Children
NAM Perspectives
readiness
September 2021 List
Serious Illness
Spruit JL
Thompson AL
Weaver MS
Wiener L
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0270797</a>
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Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
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PLOS ONE
Date
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2022
Creator
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Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Description
An account of the resource
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2022 Special Edition 3 - Oncology List
Adolescent
Anazodo A
Communication
Consensus
Darlington AS
Death
Delphi Technique
Evans H
Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Herbert AR
Humans
Lindsay T
Mack JW
Neoplasms
Neoplasms/th [therapy]
Phillips C
PLoS One
Poort H
Rosenberg AR
Sansom-Daly UM
Schulte F
Sue L
Wakefield CE
Weaver MS
Wiener L
Young Adult
-
Dublin Core
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Title
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January 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
January 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0439" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0439</a>
Dublin Core
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Title
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Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
complex chronic conditions; pediatric palliative care; communication issues in pediatrics; palliative care in neonatology; prognostication in children
Creator
An entity primarily responsible for making the resource
Bergstraesser E; Thienprayoon R; Brook LA; Fraser LK; Hynson JL; Rosenberg AR; Snaman JM; Weaver MS; Widger K; Zernikow B; Jones CA; Schlögl M
Description
An account of the resource
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.
Identifier
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<a href="http://doi.org/10.1089/jpm.2021.0439" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0439</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
Bergstraesser E
Brook LA
communication issues in pediatrics
Complex Chronic Conditions
Fraser LK
Hynson JL
January 2022 List
Jones CA
Journal of Palliative Medicine
palliative care in neonatology
Pediatric Palliative Care
prognostication in children
Rosenberg AR
Schlögl M
Snaman JM
Thienprayoon R
Weaver MS
Widger K
Zernikow B
-
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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January 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
January 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0521" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0521</a>
Dublin Core
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Title
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Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; ethics; clinical ethics; teamwork; health care ethics
Creator
An entity primarily responsible for making the resource
Weaver MS; Boss RD; Christopher MJ; Gray TF; Harman S; Madrigal VN; Michelson KN; Paquette ET; Pentz RD; Scarlet S; Ulrich CM; Walter JK
Description
An account of the resource
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0521" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0521</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
Boss RD
Christopher MJ
Clinical Ethics
Ethics
Gray TF
Harman S
health care ethics
January 2022 List
Journal of Palliative Medicine
Madrigal VN
Michelson KN
Palliative Care
Paquette ET
Pentz RD
Scarlet S
Teamwork
Ulrich CM
Walter JK
Weaver MS
-
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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February 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1177/10499091231204941" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231204941</a>
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Title
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Understanding Adult Hospices Caring for Children in California, 2018-2021
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; female; human; male; retrospective study; economics; care behavior; nurse; hospice care; medicaid; California; home health agency; latitude; longitude; urban population
Creator
An entity primarily responsible for making the resource
Davis HA; Weaver MS; Torkildson C; Lindley LC
Description
An account of the resource
In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.
Identifier
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<a href="http://doi.org/10.1177/10499091231204941" target="_blank" rel="noreferrer noopener">10.1177/10499091231204941</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
American Journal Of Hospice And Palliative Care
Article
California
care behavior
Child
Davis HA
economics
February List 2024
Female
home health agency
Hospice Care
Human
latitude
Lindley LC
longitude
Male
Medicaid
Nurse
Retrospective Study
Torkildson C
Urban Population
Weaver MS
-
Dublin Core
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Title
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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/10.1177/10499091221079329" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091221079329</a>
Dublin Core
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Title
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Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Early and Periodic Screening Diagnosis and Treatment; Medicaid; Pediatric concurrent hospice care; Pediatric hospice care
Creator
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Lindley LC; Weaver MS
Description
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Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifically concurrent hospice care. Objective(s): The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Method(s): We conducted a descriptive exploratory study, using state-level Medicaid hospice documents. Manuals, policy transmittals, provider memos, policy updates, and other related documents were searched from 50 states and the District of Columbia. We created a comprehensive data extraction tool that enabled us to identify EPSDT-specific information. The appraisal of the documents was conducted under 3 main a priori themes: definitions, function, and administration. Result(s): Eleven states included EPSDT in their hospice documentation. Definitions for concurrent care and palliative care were sparse and inconsistent. Four states defined medically necessary criterion. Several states did not integrate EPSDT into the hospice or concurrent care benefit, while EPSDT functioned as part of the Medicaid hospice benefit in 3 states and another 4 included it in their concurrent hospice care program. Among all the states, procedures for EPSDT program administration varied widely, including care coordination and payment. Conclusion(s): We found significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.
Identifier
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<a href="http://doi.org/10.1177/10499091221079329" target="_blank" rel="noreferrer noopener">10.1177/10499091221079329</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
American Journal Of Hospice And Palliative Care
April 2022 List
Early and Periodic Screening Diagnosis and Treatment
Lindley LC
Medicaid
Pediatric concurrent hospice care
Pediatric Hospice Care
Weaver MS
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0178" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0178</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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Use of an Electronic Journal Club to Increase Access to and Acceptance of Palliative Care Literature across General Pediatricians and Pediatric Subspecialties
Publisher
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Journal of Palliative Medicine
Date
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2018
Subject
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Education;journal club;pediatric palliative care
Creator
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Weaver MS;Pawliuk C;Wichman C
Description
An account of the resource
CONTEXT: Implementation of pediatric palliative care as a primary practice relevant for all pediatricians and pediatric subspecialists requires a grounding, shared knowledge. This study reports on the innovative application of a monthly Palliative Care E-Journal Club (Pal Care Club) to foster shared palliative care knowledge hospital wide. OBJECTIVES: To explore the impact of a monthly electronic journal club to increase the number of palliative care-relevant articles read and discussed and to enhance provider comfort with the integration and introduction of palliative care. METHODS: A single cohort, predesign-post-design was utilized to explore the impact of a monthly palliative care electronic journal club. RESULTS: Preintervention barriers to reading pediatric palliative care literature were primarily access and time. The mean of paired differences (post-pre) for the number of full-text articles read per month was 2.56 (SD = 1.25). The journal club intervention increased participant personal comfort with integrating palliative care principles at the bedside (p < 0.0001) and introducing pediatric palliative care to patients and families (p < 0.0001). CONCLUSION: An electronic journal club is a feasible and acceptable means of increasing number of palliative care articles read and discussed across an institution as well as enhancing pediatric palliative care knowledge across subspecialist and general pediatric services.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0178" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0178</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).
2018
Education
journal club
Journal of Palliative Medicine
November 2018 List
Pawliuk C
Pediatric Palliative Care
Weaver MS
Wichman C