1
40
28
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Title
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March 2024 List
Text
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March List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2024.113929" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113929</a>
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Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization
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Journal of Pediatrics
Date
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2024
Subject
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Hospices; Palliative Care
Creator
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Smith SM; Grossoehme DH; Cicozi K; Hiltunen A; Roth C; Richner G; Kim SS; Tram NK; Friebert S
Description
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Objective This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare utilization. Study design Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) home visit through two HBHPC programs in the Midwest from 1/1/2013 through 12/31/2018. Descriptive statistics were calculated for healthcare utilization variables. Paired t-test or Wilcoxon signed-rank test compared the changes in healthcare utilization the year prior to and year after initial provider home visits. Results The cohort included 195 individuals (49% female), with diagnoses comprised of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed reductions in median [IQR] number of ICU days (before HV 12 [4, 37] after HV 0 [0, 8], p<0.001); inpatient admissions (before HV 1 [1, 3] after HV 1 [0, 2], p=0.005); and number of inpatient days (before HV 5 [1, 19] after HV 2 [0, 8], p=0.009). There was an increase in clinically relevant phone calls (CRPC) to the HBHPC team (before HV 1 [0, 4] vs after HV 4 [1, 7], p<0.001) and calls to the HBHPC team before emergency department visits (before HV 0 [0, 0] vs after HV 1 [1, 2], p<0.001). Conclusion HBHPC provider home visits were associated with decreased inpatient admissions, hospital days, and ICU days, and increased CRPC and phone calls prior to emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient utilization and increased utilization of the HBHPC team.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2024.113929" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113929</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).
2024
Cicozi K
Friebert S
Grossoehme DH
Hiltunen A
Hospices
Journal of Pediatrics
Kim SS
March List 2024
Palliative Care
Richner G
Roth C
Smith SM
Tram NK
-
Dublin Core
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1086/726811" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1086/726811</a>
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Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework
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Journal of Clinical Ethics
Date
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2023
Subject
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child; human; palliative therapy; empathy; caregiver; patient; extracorporeal oxygenation
Creator
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Aultman JM; Raimer PL; Grossoehme DH; Nofziger RA; Ba A; Friebert S
Description
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AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.
Identifier
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<a href="http://doi.org/10.1086/726811" target="_blank" rel="noreferrer noopener">10.1086/726811</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
Aultman JM
Ba A
Caregiver
Child
Empathy
extracorporeal oxygenation
February List 2024
Friebert S
Grossoehme DH
Human
Journal of Clinical Ethics
Nofziger RA
Palliative Therapy
Patient
Raimer PL
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000287</a>
Dublin Core
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Title
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Children's understanding of dying and death: A multinational grounded theory study
Publisher
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Palliative and Supportive Care
Date
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2023
Subject
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Child; child; adult; article; controlled study; female; human; male; palliative therapy; sibling; clinical article; interview; Only Child; multicenter study; adolescent; thinking; qualitative research; religion; grounded theory; genetic transcription; Uganda; Haiti; altruism; vocabulary
Creator
An entity primarily responsible for making the resource
McPoland P; Grossoehme DH; Sheehan DC; Stephenson P; Downing J; Deshommes T; Gassant PYH; Friebert S
Description
An account of the resource
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. <br/>METHOD(S): This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. <br/>RESULT(S): Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
Identifier
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<a href="http://doi.org/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000287</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
2023 SE5 - Low Resource Setting
Adolescent
Adult
Altruism
Article
Child
Clinical Article
Controlled Study
Deshommes T
Downing J
Female
Friebert S
Gassant PYH
genetic transcription
Grossoehme DH
Grounded Theory
Haiti
Human
Interview
Male
McPoland P
Multicenter Study
Only Child
Palliative And Supportive Care
Palliative Therapy
Qualitative Research
Religion
Sheehan DC
Sibling
Stephenson P
thinking
uganda
vocabulary
-
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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September 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
September List 2023
URL Address
<a href="http://doi.org/10.1097/pq9.0000000000000663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/pq9.0000000000000663</a>
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Title
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"It's a Different Conversation": Qualitative Analysis of Pediatric Home-based Hospice/Palliative Care Visits' Perceived Value
Publisher
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Pediatric Quality & Safety
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Hospices
Creator
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Grossoehme DH; Sellers J; Accordino S; Smith SM; Jenkins R; Richner G; Moore-Forbes Y; Friebert S
Description
An account of the resource
Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions-those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden. Provider home visits are a core feature; however, the travel time and human resource allocation are significant challenges. Balancing the appropriateness of this allocation requires further characterization of the value of home visits to families and identification of the value domains of HBHPC for caregivers. For study purposes, we defined a "home visit" as an in-person visit by a physician or advanced practice provider to a child's residence. METHODS: The methods include a qualitative study using semistructured interviews and a grounded theory analytic framework enrolled caregivers of children aged 1 month to 26 years receiving HBHPC from either of 2 U.S. pediatric quaternary institutions between 2016 and 2021. RESULTS: Twenty-two participants were interviewed; the mean (SD) interview duration was 52.9 (22.6) minutes. The final conceptual model has 6 major themes: communicating effectively, fostering emotional and physical safety, building and maintaining relationships, empowering the family, seeing the bigger picture, and sharing burdens. CONCLUSIONS: Caregiver-identified themes demonstrated improved communication, empowerment, and support from receiving HBHPC, which can facilitate enhanced family-centered, goal-concordant care.
Identifier
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<a href="http://doi.org/10.1097/pq9.0000000000000663" target="_blank" rel="noreferrer noopener">10.1097/pq9.0000000000000663</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
Accordino S
Friebert S
Grossoehme DH
Hospices
Jenkins R
Moore-Forbes Y
Pediatric Quality & Safety
Richner G
Sellers J
September List 2038
Smith SM
-
Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.liebertpub.com/doi/abs/10.1089/jpm.2022.0515">https://www.liebertpub.com/doi/abs/10.1089/jpm.2022.0515</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Palliative Care Referral Criteria Following Moderate or Severe Traumatic Brain Injuries
Publisher
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Journal of Palliative Medicine
Date
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2023
Subject
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Palliative Care; child; palliative care; Referral and Consultation; Brain Injuries; Brain; adolescent; goals of care; traumatic brain injury
Creator
An entity primarily responsible for making the resource
Villarosa R; Grossoehme DH; Brown M; Delahanty S; Richner G; Baird M; Friebert S
Description
An account of the resource
Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources. Methods: This is an IRB-approved retrospective chart review study from January 1, 2017, to October 1, 2021, of persons presenting to the emergency department of a 467-bed quaternary pediatric hospital in the midwest with a moderate or severe TBI (ICD-10: S.06.2X and S.06.5X9A). Participants were excluded if they were admitted directly from an outside hospital or if the diagnosis code did not meet criteria. Results: N_=_33 patients presented with moderate or severe TBI, of which 17 had PC consult. There were no significant between-group demographic differences. Significant differences in clinical and outcome variables formed the basis of proposed referral criteria for specialist PC for children and adolescents sustaining a moderate-to-severe traumatic brain injury. Discussion: PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.
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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).
Identifier
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<a href="https://www.liebertpub.com/doi/abs/10.1089/jpm.2022.0515"><span>10.1089/jpm.2022.0515</span></a>
2023
Adolescent
Baird M
Brain
Brain Injuries
Brown M
Child
Delahanty S
Friebert S
Goals Of Care
Grossoehme DH
Journal of Palliative Medicine
June 2022 List
Palliative Care
Referral And Consultation
Richner G
traumatic brain injury
Villarosa R
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28696</a>
Dublin Core
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Title
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Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
Publisher
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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
2020
Subject
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quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
Creator
An entity primarily responsible for making the resource
Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Description
An account of the resource
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Identifier
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<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</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
2021 Special Edition - Oncology
Adolescent
Adolescent Behavior
Adolescents
Adult
Advance Care Planning/statistics & Numerical Data
Baker JN
Cancer
Cheng YI
congruence
Cross-sectional Studies
Decision Making
Family
Family/psychology
Female
Follow-up Studies
Friebert S
funding from the American Cancer Society to adapt/translate this protocol into
Humans
Livingston J
Longitudinal Studies
Lyon ME
Male
Neoplasms/psychology/therapy
Pediatric Blood & Cancer
Prognosis
Quality Of Life
Religion and Medicine
Single-Blind Method
Spanish. There are no other conflicts of interest to disclose.
Spirituality
study from the National Institutes of Health. Maureen E. Lyon is also receiving
Thompkins J
Tweddle M
Wang J
Young Adult
-
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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March 2023 List
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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).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0477" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0477</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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Simultaneous Home-Based Pediatric Hospice and Palliative Care: Characterizing the Population
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
community-based; concurrent care; home-based; Hospice; Hospice; Palliative Care; Palliative Care; Pediatric
Creator
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Grossoehme DH; Smith S; Cicozi K; Jenkins R; Richner G; Hiltunen A; Friebert S
Description
An account of the resource
Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous community hospice and pediatric palliative care. Objective: Characterize a population of children and adolescents receiving simultaneous pediatric home-based hospice and palliative care (HBHPC). Design/Setting/Subjects: Post hoc analysis of retrospective study of N = 31 patients enrolled in pediatric HBHPC, with comparison to larger two-site sample receiving either hospice or palliative care at home. Measurement: Demographic and clinical data extracted from the electronic medical record. Results: Data characterizing the population receiving simultaneous care are presented; compared with those receiving either hospice or palliative care at home, the only significant differences were a greater proportion of decedent children and greater billable hours. Conclusions: Findings support the lack of meaningful distinction between hospice and palliative care in pediatrics.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0477" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0477</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
Cicozi K
community-based
Concurrent Care
Friebert S
Grossoehme DH
Hiltunen A
home-based
Hospice
Jenkins R
Journal of Palliative Medicine
March List 2023
Palliative Care
Pediatric
Richner G
Smith S
-
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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March 2023 List
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).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0480" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0480</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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Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
home visit; home-based palliative care and hospice; Hospice; Palliative Care; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Cicozi K; Smith SM; Grossoehme DH; Hiltunen A; Roth C; Richner G; Kim SS; Friebert S
Description
An account of the resource
Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0480" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0480</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).
2023
Cicozi K
Friebert S
Grossoehme DH
Hiltunen A
Home Visit
home-based palliative care and hospice
Hospice
Journal of Palliative Medicine
Kim SS
March List 2023
Palliative Care
Pediatric Palliative Care
Richner G
Roth C
Smith SM
-
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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2022 Special Edition 3 - Oncology List
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2022 Special Edition 3 - Oncology List
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.20696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.20696</a>
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Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial
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JAMA Network Open
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2022
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Needle JS; Friebert S; Thompkins JD; Grossoehme DH; Baker JN; Jiang J; Wang J; Lyon ME
Description
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The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences.This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022.Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information.Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis.A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69).Results of this trial showed that, for those who received the FACE-TC intervention, the families’ knowledge of their adolescents’ end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity–based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study.ClinicalTrials.gov Identifier: NCT02693665
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.20696" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.20696</a>
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2022
2022 Special Edition 3 - Oncology List
Baker JN
Friebert S
Grossoehme DH
JAMA Network Open
Jiang J
Lyon ME
Needle JS
Thompkins JD
Wang J
-
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Title
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August 2022 List
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August 2022 List
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<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/27527530211059435</a>
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Title
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Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
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Journal of Pediatric Hematology/Oncology Nursing
Date
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2022
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Children; Hospitalization; Palliative care; Reiki
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Thrane SE; Williams E; Grossoehme DH; Friebert S
Description
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Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services.
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<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">10.1177/27527530211059435</a>
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2022
August 2022 List
Children
Friebert S
Grossoehme DH
Hospitalization
Journal of Pediatric Hematology/Oncology Nursing
Palliative Care
Reiki
Thrane SE
Williams E
-
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Title
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0418</a>
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"there's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
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Journal of Palliative Medicine
Date
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2020
Subject
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compassion; home-based palliative care; hospice care; pediatric hospice care
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Thienprayoon R; Grossoehme D; Humphrey LM; Pestian T; Frimpong-Manso M; Malcolm H; Kitamura E; Jenkins R; Friebert S
Description
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Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Method(s): This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Result(s): Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusion(s): Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
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<a href="http://doi.org/10.1089/jpm.2019.0418" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0418</a>
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2020
2022 Special Edition 2 - Parent Perspectives
compassion
Friebert S
Frimpong-Manso M
Grossoehme D
home-based palliative care
Hospice Care
Humphrey LM
Jenkins R
Journal of Palliative Medicine
Kitamura E
Malcolm H
Pediatric Hospice Care
Pestian T
Thienprayoon R
-
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Title
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April 2022 List
Text
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April 2022 List
URL Address
<a href="http://doi.org/10.1177/00302228211046793" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/00302228211046793</a>
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Title
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End of Life Therapeutic Videography in Pediatrics: Feasibility and Acceptability
Publisher
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Omega
Date
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2022
Subject
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Bereavement; End-of-life; Pediatrics; Therapeutic videography
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Hirsh CD; Grossoehme DH; Tsirambidis H; Richner G; Friebert S
Description
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Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research by performing a more comprehensive examination of children's experiences with life-shortening illness. Method(s): Eligible patients ages eight and older made a legacy video with the assistance of investigative staff and completed a questionnaire to evaluate their emotional states before and after making the video. Bereaved parents also received a questionnaire to assess the impact of the legacy. Result(s): Nine patients enrolled and eight completed the study through the therapeutic exit interview. Most reported decreased anxiety and a positive experience. Conclusion(s): Therapeutic videography is feasible and acceptable to accomplish and can improve the emotional state of participants. Conducting research requiring active participation of patients very near the end of life proved to be challenging.
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<a href="http://doi.org/10.1177/00302228211046793" target="_blank" rel="noreferrer noopener">10.1177/00302228211046793</a>
2022
April 2022 List
Bereavement
end-of-life
Friebert S
Grossoehme DH
Hirsh CD
Omega
Pediatrics
Richner G
Therapeutic videography
Tsirambidis H
-
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Title
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June 2022 List
Text
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June 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-054796</a>
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An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
Publisher
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Pediatrics
Date
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2022
Subject
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Advance Care Planning; Advance Directives; Confidence Intervals; End of Life; Odds Ratio; United States
Creator
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Baker JN; Friebert S; Needle J; Jiang J; Wang J; Lyon ME
Description
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BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHOD(S): Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULT(S): Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSION(S): High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences. Copyright © 2022 by the American Academy of Pediatrics.
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<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</a>
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2022
Advance Care Planning
Advance Directives
April 2022 List
Baker JN
Confidence Intervals
End Of Life
Friebert S
Jiang J
Lyon ME
Needle J
Odds Ratio
Pediatrics
United States
Wang J
-
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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/10.1177/10499091211034421" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211034421</a>
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Title
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A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients
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The American journal of hospice & palliative care
Date
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2021
Subject
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pediatric; palliative care; quality of life; Parental Satisfaction; patient-controlled analgesia
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Grossoehme DH; Brown M; Richner G; Zhou SM; Friebert S
Description
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INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain. METHODS: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients' guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns. RESULTS: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child's pain management and level of alertness. CONCLUSION: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.
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<a href="http://doi.org/10.1177/10499091211034421" target="_blank" rel="noreferrer noopener">10.1177/10499091211034421</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 1 - Parent Perspectives
Brown M
Friebert S
Grossoehme DH
Palliative Care
Parental Satisfaction
patient-controlled analgesia
Pediatric
Quality Of Life
Richner G
The American Journal of Hospice & Palliative Care
Zhou SM
-
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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/10.1089/jpm.2021.0127" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0127</a>
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Title
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End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life
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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pediatric; palliative care; physician; compassion fatigue; advance practice nurse
Creator
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Hardy-Gomez M; Grossoehme DH; Strasshofer D; Brown M; Friebert S
Description
An account of the resource
Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outside of "business hours." Methods: N = 786 PPC patients at a single center died between 2008 and 2015. Descriptive statistics were prepared for all variables (Wilcoxon rank-sum test for continuous; chi-square or Fisher's exact test for categorical). Results: N = 434 (55%) of deaths occurred outside of business hours; n = 332 (70%) were attended by PPC. Time spent attending a death was not significantly longer when other PPC providers were present but was when certain tasks were performed (coordination with medical examiner and memory making). Conclusion: The occurrence of the majority of deaths outside of business hours has significant implications for service delivery models, provider emotional health, and health care value.
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<a href="http://doi.org/10.1089/jpm.2021.0127" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0127</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 practice nurse
Brown M
Compassion Fatigue
Friebert S
Grossoehme DH
Hardy-Gomez M
Journal of Palliative Medicine
November 2021 List
Palliative Care
Pediatric
Physician
Strasshofer D
-
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Title
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October 2021 List
Text
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October 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.08.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.08.004</a>
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Title
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Pediatric palliative care parents' distress, financial difficulty, and child symptoms
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Parents; Pediatric Palliative Care; Psychological Distress; Financial Difficulty; Patient Symptoms
Creator
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Boyden JY; Hill DL; Nye R; Bona K; Johnston EE; Hinds P; Friebert S; Kang TI; Hays R; Hall M; Wolfe J; Feudtner C
Description
An account of the resource
CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty. OBJECTIVES: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress. METHODS: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score. RESULTS: The majority of parents were moderately distressed (52%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone. CONCLUSIONS: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.08.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.08.004</a>
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2021
Bona K
Boyden JY
Feudtner C
Financial Difficulty
Friebert S
Hall M
Hays R
Hill DL
Hinds P
Johnston EE
Journal of Pain and Symptom Management
Kang TI
Nye R
October 2021 List
Parents
Patient Symptoms
Pediatric Palliative Care
Psychological Distress
Wolfe J
-
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Title
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October 2021 List
Text
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Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.19730" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.19730</a>
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Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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parent reported data; pediatric; Pediatric palliative care; Poly-Symptomatology
Creator
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Feudtner C; Nye R; Hill DL; Hall M; Hinds P; Johnston EE; Friebert S; Hays R; Kang TI; Wolfe J
Description
An account of the resource
Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children’s hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites.Analyses were stratified by patients’ demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non–mutually exclusive complex chronic condition categories.Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score.Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13).In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.19730" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.19730</a>
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2021
Feudtner C
Friebert S
Hall M
Hays R
Hill DL
Hinds P
JAMA Network Open
Johnston EE
Kang TI
Nye R
October 2021 List
parent reported data
Pediatric
Pediatric Palliative Care
Poly-Symptomatology
Wolfe J
-
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September 2021 List
Text
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September 2021 List
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<a href="http://doi.org/10.1097/nnr.0000000000000540" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/nnr.0000000000000540</a>
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Title
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Feasibility and Acceptability of a Reiki Intervention With Very Young Children Receiving Palliative Care
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Nursing Research
Date
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2021
Subject
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pediatric; child; adolescent; palliative care; feasibility; Reiki; integrative; acceptability
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Thrane SE; Grossoehme DH; Tan A; Shaner V; Friebert S
Description
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BACKGROUND: Very little research has been reported examining nonpharmacologic symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: To determine if completing a Reiki intervention with hospitalized 1- to 5-year-old children with chronic, life-limiting conditions receiving palliative care was feasible and acceptable. METHODS: Children ages 1 to 5 years receiving palliative care who were expected to be hospitalized for at least 3 weeks were recruited for a single-arm, mixed-methods, quasi-experimental pre/poststudy. Six protocolized Reiki sessions were conducted over 3 weeks. We calculated feasibility by the percentage of families enrolled in the study and acceptability by the percentage of families who completed all measures and 5 out of 6 Reiki sessions. Measures were collected at baseline, the end of the intervention period, and three weeks later. At the final follow-up visit, parents were verbally asked questions relating to the acceptability of the intervention in a short structured interview. RESULTS: We screened 90 families, approached 31 families, and recruited 16 families while 15 families declined. Reasons for not participating included that the child had "a lot going on," would be discharged soon, and families were overwhelmed. Of those enrolled, most completed all measures at three time points and 5 out of 6 Reiki sessions. We completed nearly all scheduled Reiki sessions for families that finished the study. All parents reported that they would continue the Reiki if they could, and almost all said they would participate in the study again; only one parent was unsure. DISCUSSION: Young children and their parents found Reiki acceptable; these results are comparable to an earlier study of children 7-16 years receiving palliative care at home and a study of massage for symptom management for hospitalized children with cancer. These findings add to the literature and support further investigation of Reiki's efficacy as a nonpharmacologic symptom management intervention.
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<a href="http://doi.org/10.1097/nnr.0000000000000540" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000540</a>
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2021
acceptability
Adolescent
Child
Feasibility
Friebert S
Grossoehme DH
integrative
Nursing Research
Palliative Care
Pediatric
Reiki
September 2021 List
Shaner V
Tan A
Thrane SE
-
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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
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BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
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<a href="http://doi.org/10.1542/peds.2020-021634" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-021634</a>
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2021
August 2021 List
Children
Friebert S
Humphrey L
Klick JC
life-limiting illness
palliative care programs
Pediatric Palliative Care
Pediatrics
Rogers MM
Thienprayoon R
Usa
Williams C
-
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Title
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July 2021 List
Text
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July 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-029330</a>
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Title
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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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advance care planning; Caregiver Attitudes; hospice and palliative medicine; oncology; psychiatry; psychology
Creator
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Thompkins JD; Needle J; Baker JN; Briggs L; Cheng YI; Wang J; Friebert S; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Identifier
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<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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Title
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July 2021 List
Text
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July 2021 List
URL Address
<a href="http://doi.org/10.1080/07481187.2021.1914239" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2021.1914239</a>
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Developing a theoretically grounded, digital, ecological momentary intervention for parental bereavement care using the ORBIT model-Phase 1
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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bereaved parents; bereavement; Parent's experience; web-based intervention
Creator
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Dias N; Boring E; Johnson L; Grossoehme DH; Murphy S; Friebert S
Description
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Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.
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<a href="http://doi.org/10.1080/07481187.2021.1914239" target="_blank" rel="noreferrer noopener">10.1080/07481187.2021.1914239</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
Bereaved Parents
Bereavement
Boring E
Death studies
Dias N
Friebert S
Grossoehme DH
Johnson L
July 2021 List
Murphy S
Parent's Experience
web-based intervention
-
Dublin Core
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Title
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March 2021 List
Text
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Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.01.007</a>
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Title
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Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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pediatric; palliative care; funding; curriculum; quality of health care; financing
Creator
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Feudtner C; Faerber JA; Rosenberg AR; Kobler K; Baker JN; Bowman BA; Wolfe J; Friebert S
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.007</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
Bowman BA
Curriculum
Faerber JA
Feudtner C
Financing
Friebert S
Funding
Journal of Pain and Symptom Management
Kobler K
March 2021 List
Palliative Care
Pediatric
Quality Of Health Care
Rosenberg AR
Wolfe J
-
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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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
-
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/10.1093/jpepsy/jsm079" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsm079</a>
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Title
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Single parents of children with chronic illness: an understudied phenomenon
Publisher
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Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
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Brown RT; Wiener L; Kupst MJ; Brennan T; Behrman R; Compas BE; David ET; Fairclough D; Friebert S; Katz E; Kazak AE; Madan-Swain A; Mansfield N; Mullins L; Noll R; Patenaude AF; Phipps S; Sahler OJ; Sourkes B; Zeltzer L
Description
An account of the resource
OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. RESULTS: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. CONCLUSIONS: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.
2008
Identifier
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<a href="http://doi.org/10.1093/jpepsy/jsm079" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm079</a>
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Type
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Journal Article
2008
Backlog
Behrman R
Brennan T
Brown RT
Compas BE
David ET
Fairclough D
Friebert S
Journal Article
Journal of Pediatric Psychology
Katz E
Kazak AE
Kupst MJ
Madan-Swain A
Mansfield N
Mullins L
Noll R
Patenaude AF
Phipps S
Sahler OJ
Sourkes B
Wiener L
Zeltzer L
-
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/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2008.16.1562</a>
Dublin Core
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Title
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Availability and use of palliative care and end-of-life services for pediatric oncology patients
Publisher
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Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
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Child; Female; Humans; Male; Questionnaires; North America; Palliative Care/utilization; Neoplasms/therapy; Pediatrics/methods; Terminal Care/utilization
Creator
An entity primarily responsible for making the resource
Johnston DL; Nagel K; Friedman DL; Meza JL; Hurwitz CA; Friebert S
Description
An account of the resource
PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). METHODS: A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. RESULTS: The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients. CONCLUSION: Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.
2008
Identifier
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<a href="http://doi.org/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">10.1200/JCO.2008.16.1562</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
2008
Backlog
Child
Female
Friebert S
Friedman DL
Humans
Hurwitz CA
Johnston DL
Journal Article
Journal Of Clinical Oncology
Male
Meza JL
Nagel K
Neoplasms/therapy
North America
Palliative Care/utilization
Pediatrics/methods
Questionnaires
Terminal Care/utilization
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 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
Defining Success In Pediatric Palliative Care While Tackling The Quadruple Aim
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Palliative Therapy; Child
Creator
An entity primarily responsible for making the resource
Bogetz JF; Friebert S
Description
An account of the resource
Palliative medicine is a widely established field acquiring acceptance nationally in in hospitals and gaining momentum culturally as we care for more patients with complex chronic illness. The challenge is no longer whether or not high-quality patient care involves palliative care, but instead, how palliative care defines its success.
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2016.0389
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).
2017
Bogetz JF
Child
Friebert S
Journal of Palliative Medicine
March 2017 List
Palliative Therapy
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 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
Productivity In Pediatric Palliative Care: Measuring And Monitoring An Elusive Metric
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
2017
Creator
An entity primarily responsible for making the resource
Kaye EC; Abramson ZR; Snaman J; Friebert S; Baker J
Description
An account of the resource
CONTEXT: Workforce productivity is poorly defined in healthcare. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. OBJECTIVES: To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. METHODS: PubMed(R) and CDSRa searches for scholarly literature were performed using key words1 for articles published between 2000-2016. Organizational searches of CAPC,b NHPCO,c NAHCH,d AAHPM,e HPNA,f NQF,g and NCPQPCh were also performed. Additional semi-structured interviews were conducted with directors from seven prominent PPC programs across the United States to review SOPsj for PPC team workflow and productivity. RESULTS: Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. CONCLUSIONS: Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value.
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).
2017
Abramson ZR
Baker J
Friebert S
Journal of Pain and Symptom Management
Kaye EC
March 2017 List
Snaman 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
March 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
Pediatric Palliative Care And Hospice Program Development In 2016: Strategies For Success In An Ever-expanding World
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
2016
Creator
An entity primarily responsible for making the resource
Humphrey L; Friebert S; Miller E; Ragsdale L; Parikh S
Description
An account of the resource
Objectives
Propose pediatric program design or expansion
based on newly acquired skills of defining a
desirable and functional scope that aligns with
health system’s missions and values and identifies
areas of potential growth and collaboration
within the health system.
Discuss the creation of a formal business plan for
development of a pediatric palliative care program
to present to senior hospital leadership
that effectively highlights the benefits and challenges
of a billing revenue only strategy and
thus a need for operating dollars and philanthropic
support as a comprehensive business
plan strategy.
Develop a strategy for their community to implement
PC with limited resources and increase buyin
from stakeholders.
As with adult palliative care, pediatric palliative care is
experiencing rapid growth. Like adult palliative care,
pediatric palliative care practitioners also need to
design and sustain programs that respond to their
own institutional needs and values, that show value
added through metrics and quality improvement
research, that acknowledge the national palliative
care staffing shortage, that address the growing need
for outpatient resources in all communities, and
that have strategies embedded to prevent staff
burnout. Distinct from adult palliative care is pediatrics’
need for greater philanthropic and operational
dollar support as pediatric palliative care has not
had the patient volume to show the reduced cost savings
strategy that drives many adult palliative care
budget plans. This workshop will present strategies
for preliminary pediatric program planning and
budgeting that address these needs through the presentation
of five distinct pediatric palliative care programs.
Education will be heavily driven through case
presentations that contrast resource-rich versus
resource limited environments, newer programs
versus more established programs, and inpatient
versus outpatient arenas. After providing this platform,
the workshop will utilize these experts to assist
in small group discussions that focus on participants’
unique program needs and questions.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.113
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).
2016
Friebert S
Humphrey L
Journal of Pain and Symptom Management
March 2016 List
Miller E
Parikh S
Ragsdale L