1
40
70
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June 2022 List
Text
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June 2022 List
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<a href="http://doi.org/10.1002/cam4.4696" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cam4.4696</a>
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"You are not alone": Connecting through a bereaved parent mentor program for parents whose child died of cancer
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Cancer Medicine
Date
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2022
Subject
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bereaved parents; bereavement; grief; pediatric palliative care; peer-to-peer mentorship
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McNeil MJ; Kiefer A; Woods C; Barnett B; Berry-Carter K; Clark L; Mandrell BN; Snaman J; Kaye EC; Baker JN
Description
An account of the resource
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. METHODS: Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. RESULTS: A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. CONCLUSION: This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents.
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<a href="http://doi.org/10.1002/cam4.4696" target="_blank" rel="noreferrer noopener">10.1002/cam4.4696</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
April 2022 List
Baker JN
Barnett B
Bereaved Parents
Bereavement
Berry-Carter K
Cancer Medicine
Clark L
Grief
Kaye EC
Kiefer A
Mandrell BN
McNeil MJ
Pediatric Palliative Care
peer-to-peer mentorship
Snaman J
Woods C
-
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June 2022 List
Text
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June 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.249" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.02.249</a>
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“A Child's Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214)
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Journal of Pain and Symptom Management
Date
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2022
Subject
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Arkansas; Child; Community Health Services; Death; Hospices; Mississippi; Nurses; Palliative Care; Quality of Life; Self Report; Tennessee
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Porter A; Aglio T; Williams K; Baker JN; Kaye EC
Description
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Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-methods survey- and interview-based exploration of perspectives and needs of community-based hospice nurses who provide care to children with serious illness and their families at the end of the life 3. Characterize and explain how to implement a spoke-and-hub model for providing hospice nurses with pediatric-specific training, support, and solidarity Approximately 500,000 children in the United States suffer from serious illness, of whom 10% die annually. Optimal provision of hospice services can lessen symptom burden and improve quality of life, reduce parental psychosocial stress, decrease costs, and limit clinician distress. Nonetheless, only 1 in 10 dying children receive hospice care, usually through adult organizations, and few community hospice nurses receive pediatric-specific training, resources, and support. In this concurrent session, interdisciplinary pediatric palliative care physicians and advance practice providers will partner with community-based hospice nurses to propose a resource-efficient, comprehensive intervention to address this challenge. First, they will review existing research findings, including a mixed-methods survey study of >550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi, and an interview-based, qualitative study of 41 of hospice nurses representing various levels of self-reported comfort with caring for children at the end of life (eg, very comfortable, somewhat comfortable, somewhat uncomfortable, very uncomfortable). The survey study found that nearly 90% of nurses had no pediatric palliative care training, 50% had no pediatric hospice experience, those with exposure described limited training (eg, online module, 2-day course), and few had opportunities to build skills. Both the survey and interviews revealed that nurses reported overwhelming discomfort with pediatric-specific care, clearly articulated gaps in training and support, and expressed a strong desire for further pediatric-specific education, resources, and support. Next, presenters will propose a spoke-and-hub model driven by community hospice nurses’ insights and recommendations, in which pediatric academic centers partner with community hospices to bring clinicians together regularly to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.249" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.249</a>
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2022
Aglio T
April 2022 List
Arkansas
Baker JN
Child
Community Health Services
Death
Hospices
Journal of Pain and Symptom Management
Kaye EC
Mississippi
Nurses
Palliative Care
Porter A
Quality Of Life
Self Report
Tennessee
Williams K
-
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Title
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2023 Special Edition 3 - Oncology List
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2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.144</a>
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“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Creator
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Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Description
An account of the resource
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</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 SE3 - Oncology
Baker JN
Bereavement
Broden E
Child
Decisional regret
Feifer D
Journal of Pain and Symptom Management
Parent
Parents
Pediatric Cancer
Snaman J
Wolfe 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/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.05.019</a>
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Title
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“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Pediatrics; Communication; Bereavement; Education; Residency
Creator
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Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Description
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Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Baker JN
Bereavement
Chen L
Communication
Education
Journal of Pain and Symptom Management
July 2021 List
Kaye EC
Pediatrics
Porter AS
residency
Snaman JM
Weaver MS
Zhaohua L
-
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June 2022 List
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June 2022 List
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<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.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Advance Care Planning
Advance Directives
April 2022 List
Baker JN
Confidence Intervals
End Of Life
Friebert S
Jiang J
Lyon ME
Needle J
Odds Ratio
Pediatrics
United States
Wang J
-
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2021 Special Edition 1 - Low Resource Settings
Text
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2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1200/JCO.2021.39.15_suppl.10053" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/JCO.2021.39.15_suppl.10053</a>
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Assessment of Physician Perceptions of Pediatric Palliative Care for Children with Cancer in Latin America.
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Journal of Clinical Oncology
Date
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2021
Subject
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Low resource setting; oncology
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McNeil M; Ehrlich B; Bustamante M; Dussel V; Friedrich P; Garcia QX; Gomez GWC; Graetz DE; Kaye E; Metzger M; Sabato DCV; Baker JN; Agulnik A
Description
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10053Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.
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<a href="http://doi.org/10.1200/JCO.2021.39.15_suppl.10053" target="_blank" rel="noreferrer noopener">10.1200/JCO.2021.39.15_suppl.10053</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition 1 - Low Resource Settings
Agulnik A
Baker JN
Bustamante M
Dussel V
Ehrlich B
Friedrich P
Garcia QX
Gomez GWC
Graetz DE
Journal Of Clinical Oncology
Kaye E
Low resource setting
McNeil M
Metzger M
Oncology
Sabato DCV
-
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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/10.1016/j.jpainsymman.2022.02.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.02.003</a>
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Title
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Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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bereavement; child life; grief; Legacy; music therapy
Creator
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Love A; Greer K; Woods C; Clark L; Baker JN; Kaye EC
Description
An account of the resource
Context Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood. Objectives To characterize bereaved parents’ perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists. Methods In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes. Results Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes: 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions. Conclusion Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.003</a>
2022
April 2022 List
Baker JN
Bereavement
child life
Clark L
Greer K
Grief
Journal of Pain and Symptom Management
Kaye EC
legacy
Love A
Music Therapy
Woods C
-
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/10.1016/j.jpeds.2013.01.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2013.01.015</a>
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Title
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Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors
Publisher
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The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
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Child; Humans; bereavement; Parents; Prospective Studies; Attitude; Autopsy; Biomedical Research; Intention; Brain neoplasms
Creator
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Baker JN; Windham JA; Hinds PS; Gattuso JS; Mandrell BN; Gajjar P; West NK; Hammarback T; Broniscer A
Description
An account of the resource
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses. RESULTS: Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again. CONCLUSION: Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.
2013-08
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2013.01.015" target="_blank" rel="noreferrer">10.1016/j.jpeds.2013.01.015</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
2013
Attitude
Autopsy
Backlog
Baker JN
Bereavement
Biomedical Research
Brain Neoplasms
Broniscer A
Child
Gajjar P
Gattuso JS
Hammarback T
Hinds PS
Humans
Intention
Journal Article
Mandrell BN
Parents
Prospective Studies
The Journal Of Pediatrics
West NK
Windham JA
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">http://doi.org/10.12788/j.suponc.0012</a>
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Title
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Best practices for pediatric palliative cancer care: a primer for clinical providers
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The Journal Of Supportive Oncology
Date
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2013
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Levine D; Lam CG; Cunningham MJ; Remke S; Chrastek J; Klick J; Macauley R; Baker JN
Description
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Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.
2013-09
Identifier
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<a href="http://doi.org/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">10.12788/j.suponc.0012</a>
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Type
The nature or genre of the resource
Journal Article
2013
Backlog
Baker JN
Chrastek J
Cunningham MJ
Journal Article
Klick J
Lam CG
Levine D
Macauley R
Remke S
The Journal Of Supportive Oncology
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.29270" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29270</a>
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Title
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Broaching Goals-Of-Care Conversations in Advancing Pediatric Cancer
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
2021
Subject
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Oncology
Creator
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Kaye EC; Woods C; Velrajan S; Lemmon ME; Baker JN; Mack JW
Description
An account of the resource
Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (∼2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.
Identifier
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<a href="http://doi.org/10.1002/pbc.29270" target="_blank" rel="noreferrer noopener">10.1002/pbc.29270</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Baker JN
Kaye EC
Lemmon ME
Mack JW
Oncology
Pediatric Blood & Cancer
Velrajan S
Woods C
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1007/s11060-016-2187-9" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11060-016-2187-9</a>
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Title
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Children with minimal chance for cure: parent proxy of the child's health-related quality of life and the effect on parental physical and mental health during treatment
Publisher
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Journal Of Neuro-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Palliative Care; quality of life; Diffuse intrinsic pontine glioma; Pediatric brain tumor
Creator
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Mandrell BN; Baker JN; Levine D; Gattuso JS; West NK; Sykes AD; Gajjar A; Broniscer A
Description
An account of the resource
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.
2016-06
Identifier
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<a href="http://doi.org/10.1007/s11060-016-2187-9" target="_blank" rel="noreferrer">10.1007/s11060-016-2187-9</a>
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Type
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Journal Article
2016
Backlog
Baker JN
Broniscer A
Diffuse Intrinsic Pontine Glioma
Gajjar A
Gattuso JS
Journal Article
Journal of Neuro-Oncology
Levine D
Mandrell BN
Palliative Care
Pediatric Brain Tumor
Quality Of Life
Sykes AD
West NK
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41416-021-01512-9</a>
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Title
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Communication around Palliative Care Principles and Advance Care Planning Between Oncologists, Children with Advancing Cancer and Families
Publisher
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British Journal of Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Kaye EC; Woods C; Kennedy K; Velrajan S; Gattas M; Bilbeisi T; Huber R; Lemmon ME; Baker JN; Mack JW
Description
An account of the resource
BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied. METHODS: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches. RESULTS: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions. CONCLUSIONS: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.
Identifier
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<a href="http://doi.org/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener">10.1038/s41416-021-01512-9</a>
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2021
2021 Special Edition - Oncology
Baker JN
Bilbeisi T
British Journal Of Cancer
Gattas M
Huber R
Kaye EC
Kennedy K
Lemmon ME
Mack JW
Oncology
Velrajan S
Woods C
-
Dublin Core
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Title
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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/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.22.00281</a>
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Title
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Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
Publisher
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JCO Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Communication; Palliative Care; Latin America; Neoplasms/therapy; Metaphor; Latin America/epidemiology
Creator
An entity primarily responsible for making the resource
Garcia-Quintero X; Cleves D; Cuervo MI; McNeil M; Salek M; Robertson EG; Gomez W; Baker JN; Kaye EC
Description
An account of the resource
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed therapy across the illness course.1 Presently, the WHO defines PPC as holistic care involving all aspects of the life of a child with serious illness and their family, including the care and support of the body, mind, and spirit.2 As such, the WHO advocates for PPC provision to begin at the time of diagnosis of a life-limiting condition and continue across treatment, regardless of whether the goal is cure, life prolongation, or comfort.3 Numerous guidelines endorsed by national organizations similarly advocate for early integration of PPC in the care of patients with pediatric cancer,4-7 recognizing that involvement of PPC concurrently with cancer-directed treatment promotes patient-and family-centered care, aligns treatment with goals of care, and optimizes supportive care and quality of life.2,4-8...``
Identifier
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<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener">10.1200/go.22.00281</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
Baker JN
Child
Cleves D
Communication
Cuervo MI
García-Quintero X
Gomez W
Humans
JCO Global Oncology
Kaye EC
Latin America
Latin America/epidemiology
McNeil M
Metaphor
Neoplasms/therapy
Palliative Care
Robertson EG
Salek M
-
Dublin Core
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Title
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December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.27457</a>
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Title
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Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
Publisher
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JAMA network open
Date
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2021
Subject
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challenges; children; hospice; nurse perspectives; serious illness
Creator
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Porter AS; Zalud K; Applegarth J; Woods C; Gattas M; Rutt E; Williams K; Baker JN; Kaye EC
Description
An account of the resource
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.27457</a>
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2021
Applegarth J
Baker JN
challenges
Children
December 2021 List
Gattas M
Hospice
JAMA Network Open
Kaye EC
nurse perspectives
Porter AS
Rutt E
Serious Illness
Williams K
Woods C
Zalud K
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2022.1017272</a>
Dublin Core
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Title
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Compassionate de-escalation of life-sustaining treatments in pediatric oncology: An opportunity for palliative care and intensive care collaboration
Publisher
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Frontiers in Oncology
Date
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2022
Creator
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Cuviello A; Pasli M; Hurley C; Bhatia S; Anghelescu DL; Baker JN
Description
An account of the resource
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at the end of life (EOL) is often undertreated and underrecognized. Pain and poor quality of life are common concerns amongst parents and providers at a child's EOL. Integration of palliative care (PC) may decrease suffering and improve symptom management in many clinical situations; however, few studies have described medical management and symptom burden in children with cancer in the pediatric intensive care unit (PICU) undergoing de-escalation of LSTs. METHODS: A retrospective chart review was completed for deceased pediatric oncology patients who experienced compassionate extubation and/or withdrawal of vasopressor support at EOL in the PICU. Demographics, EOL characteristics, and medication use for symptom management were abstracted. Descriptive analyses were applied. RESULTS: Charts of 43 patients treated over a 10-year period were reviewed. Most patients (69.8%) were white males who had undergone hematopoietic stem cell transplantation and experienced compassionate extubation (67.4%) and/or withdrawal of vasopressor support (44.2%). The majority (88.3%) had a physician order for scope of treatment (POST - DNaR) in place an average of 13.9 days before death. PC was consulted for all but one patient; however, in 18.6% of cases, consultations occurred on the day of death. During EOL, many patients received medications to treat or prevent respiratory distress, pain, and agitation/anxiety. Sedative medications were utilized, specifically propofol (14%), dexmedetomidine (12%), or both (44%), often with opioids and benzodiazepines. CONCLUSIONS: Pediatric oncology patients undergoing de-escalation of LSTs experience symptoms of pain, anxiety, and respiratory distress during EOL. Dexmedetomidine and propofol may help prevent and/or relieve suffering during compassionate de-escalation of LSTs. Further efforts to optimize institutional policies, education, and collaborations between pediatric intensivists and PC teams are needed.
Identifier
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<a href="http://doi.org/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener">10.3389/fonc.2022.1017272</a>
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2022
2022 Special Edition 3 - Oncology List
Anghelescu DL
Baker JN
Bhatia S
Cuviello A
Dexmedetomidine
End Of Life
Frontiers in Oncology
Hurley C
Palliative Care
Palliative sedation
Pasli M
Pediatric Oncology
Propofol
Symptom Management
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
Backlog
URL Address
<a href="http://doi.org/10.1002/cncr.29230" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.29230</a>
Dublin Core
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Title
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Does phase 1 trial enrollment preclude quality end-of-life care? Phase 1 trial enrollment and end-of-life care characteristics in children with cancer
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Oncology at EOL
Creator
An entity primarily responsible for making the resource
Levine DR; Johnson LM; Mandrell BN; Yang J; West NK; Hinds PS; Baker JN
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in pediatric oncology patients to determine whether end-of-life characteristics differed between those who were and were not enrolled in a phase 1 trial. METHODS: The authors reviewed the medical records of 380 pediatric oncology patients (aged <22 years at the time of death) who died during a 3.5-year period. Of these, 103 patients with hematologic malignancies were excluded. A total of 277 patients with a diagnosis of a brain tumor or other solid tumor malignancy were divided into 2 groups based on phase 1 trial enrollment: a phase 1 cohort (PIC; 120 patients) and a non-phase 1 cohort (NPIC; 157 patients). The EOLC characteristics of these 2 cohorts were compared using regression analysis and chi-square testing. RESULTS: A comparison of patients in the PIC and NPIC revealed no significant differences in either demographic characteristics (including sex, race, religious affiliation, referral origin, diagnosis, or age at diagnosis, with the exception of age at the time of death [P =.03]) or in EOLC indices (such as use or timing of do not attempt resuscitation orders, hospice use or length of stay, forgoing life-sustaining therapies, location of death, time from first EOLC discussion to death, and total number of EOLC discussions). CONCLUSIONS: The results of the current study of a large cohort of deceased pediatric cancer patients indicate that enrollment on a phase 1 trial does not affect EOLC characteristics, suggesting that quality EOLC can be delivered regardless of phase 1 trial participation. Cancer 2015;121:1508-1512. © 2014 American Cancer Society.
2015-05
Identifier
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<a href="http://doi.org/10.1002/cncr.29230" target="_blank" rel="noreferrer">10.1002/cncr.29230</a>
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Type
The nature or genre of the resource
Journal Article
2015
Backlog
Baker JN
Cancer
Hinds PS
Johnson LM
Journal Article
Levine DR
Mandrell BN
Oncology at EOL
West NK
Yang J
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1200/OP.22.00538" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/OP.22.00538</a>
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Title
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Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning
Publisher
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JCO Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Bereavement; Only Child
Creator
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Snaman JM; Mazzola E; Helton G; Feifer D; Morris SE; Clark L; Baker JN; Wolfe J
Description
An account of the resource
PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes.METHODS:Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning.RESULTS:One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores.CONCLUSION:Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.
Identifier
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<a href="http://doi.org/10.1200/OP.22.00538" target="_blank" rel="noreferrer noopener">10.1200/OP.22.00538</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 SE3 - Oncology
Baker JN
Bereavement
Child
Clark L
Feifer D
Helton G
JCO Oncology Practice
Mazzola E
Morris SE
Only Child
Snaman JM
Wolfe J
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.11.017</a>
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Title
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Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
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Journal of Pain and Symptom Management
Date
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2021
Subject
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palliative care; education; survey; Pediatric; training; curriculum
Creator
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Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Description
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CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</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
Bernadá M
Chong PH
Curriculum
Drake R
Dussel V
Education
February 2022 List
Friedrichsdorf SJ
Hauser J
Journal of Pain and Symptom Management
Kolste A
Palliative Care
Pediatric
Postier AC
Rapoport A
Remke SS
Survey
Training
Widger K
Wolfe J
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.20696" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.20696</a>
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Title
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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
Date
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2022
Creator
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Needle JS; Friebert S; Thompkins JD; Grossoehme DH; Baker JN; Jiang J; Wang J; Lyon ME
Description
An account of the resource
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
Identifier
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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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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2022 Special Edition 3 - Oncology List
Baker JN
Friebert S
Grossoehme DH
JAMA Network Open
Jiang J
Lyon ME
Needle JS
Thompkins JD
Wang J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
URL Address
<a href="https://doi.org/10.1016/j.jpainsymman.2016.10.359">https://doi.org/10.1016/j.jpainsymman.2016.10.359</a>
Dublin Core
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Title
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Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program
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
2016
Subject
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Grief; Palliative Care; Bereavement; Pediatrics; Hospice Care
Creator
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Snaman JM; Kaye EC; Levine DR; Cochran B; Wilcox R; Sparrow CK; Noyes N; Clark L; Avery W; Baker JN
Description
An account of the resource
Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine.
Identifier
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<a href="https://doi.org/10.1016/j.jpainsymman.2016.10.359">10.1016/j.jpainsymman.2016.10.359</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).
2016
Avery W
Baker JN
Bereavement
Clark L
Cochran B
Grief
Hospice Care
Journal of Pain and Symptom Management
Kaye EC
Levine DR
March 2016 List
Noyes N
Palliative Care
Pediatrics
Snaman JM
Sparrow CK
Wilcox R
-
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/10.1016/j.pcl.2014.04.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.04.012</a>
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Title
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End-of-Life Care for Hospitalized Children
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Child; Hospital; end-of-life care
Creator
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Johnson L-M; Snaman JM; Cupit MC; Baker JN
Description
An account of the resource
High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the end of life (EOL) into a standard operating procedure specifically focused on inpatient deaths. Palliative care for children at EOL in the hospital setting should encompass the personal, cultural, and spiritual needs of the child and family members and aim to minimize suffering and increase support for all who are involved, including hospital staff.
2014-08
Identifier
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<a href="http://doi.org/10.1016/j.pcl.2014.04.012" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.012</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Baker JN
Child
Cupit MC
End-of-life Care
Hospital
Johnson L-M
Journal Article
Pediatric Clinics of North America
Snaman JM
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">http://doi.org/10.1080/15265161.2015.1021965</a>
Dublin Core
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Title
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Ethics consultation in pediatrics: long-term experience from a pediatric oncology center
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The American Journal Of Bioethics : Ajob
Date
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2015
Creator
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Johnson LM; Church CL; Metzger M; Baker JN
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<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">10.1080/15265161.2015.1021965</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Baker JN
Church CL
Johnson LM
Metzger M
Oncology 2017 List
The American Journal Of Bioethics : Ajob
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.20925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2021.20925</a>
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Title
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Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer
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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Oncology
Creator
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Kaye EC; Rockwell S; Woods C; Lemmon ME; Andes K; Baker JN; Mack JW
Description
An account of the resource
Importance: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and their families are not well understood. Objectives: To identify key oncologist-driven facilitators associated with building and sustaining therapeutic alliance in the setting of advancing pediatric cancer and to develop a framework to guide clinical practice and future investigation of therapeutic alliance. Design, Setting, and Participants: In this qualitative study, serial disease reevaluation discussions that occurred in the clinic, inpatient hospital, or off campus via telephone were recorded among pediatric oncologists, patients with high-risk cancer, and their families across 24 months or until death, whichever occurred first, from 2016 to 2020. This analysis focused on recorded discussions for pediatric patients who experienced progressive disease during the study period. Content analysis was conducted across recorded dialogue to derive inductive codes and identify themes. Participants were patient-parent dyads for whom a primary oncologist projected the patient's survival to be 50% or less, all family members and friends who attended any of their recorded disease reevaluation conversations, and their oncologists and other clinicians who attended the recorded discussions. Results: A total of 33 patient-parent dyads were enrolled and followed longitudinally. From this cohort, 17 patients experienced disease progression during the study period, most of whom were female (11 [64.7%]) and White (15 [88.2%]) individuals. For these patients, 141 disease reevaluation discussions were audio recorded, comprising 2400 minutes of medical dialogue. Most children (14 [82.4%]) died during the study period. A median of 7 disease reevaluation discussions per patient (range, 1-19) were recorded. Content analysis yielded 28 unique concepts associated with therapeutic alliance fostered by oncologist communication. Ultimately, 7 core themes emerged to support a framework for clinician approaches associated with optimizing therapeutic alliance: human connection, empathy, presence, partnering, inclusivity, humor, and honesty. Conclusions and Relevance: In this qualitative study, pediatric oncologists used diverse communication approaches associated with building and deepening connections across advancing illness. These findings offer a framework to support clinical and research strategies for strengthening therapeutic alliance among pediatric oncologists, patients, and families.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.20925" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.20925</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Andes K
Baker JN
JAMA Network Open
Kaye EC
Lemmon ME
Mack JW
Oncology
Rockwell S
Woods C
-
Dublin Core
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Title
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May 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.03.016</a>
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Title
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Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
COVID-19; global; impact; pediatric palliative care; survey
Creator
An entity primarily responsible for making the resource
McNeil MJ; Kaye EC; Vedaraju Y; Baker JN; Devidas M; Downing J; Graetz D; Ranadive R; Rosenberg AR; Wiener L; Weaver MS
Description
An account of the resource
Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. Results: One hundred and fifty-six providers were included in the final analysis with 59 countries and 6 continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation. Conclusions: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. Article Summary: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.016" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.016</a>
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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
COVID-19
Devidas M
Downing J
global
Graetz D
Impact
Journal of Pain and Symptom Management
Kaye EC
May 2021 List
McNeil MJ
Pediatric Palliative Care
Ranadive R
Rosenberg AR
Survey
Vedaraju Y
Weaver MS
Wiener L
-
Dublin Core
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Title
A name given to the resource
April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.26089</a>
Dublin Core
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Title
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Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Bereavement; Pilot Projects
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye E; Cunningham MJ; Sykes A; Levine DR; Mahoney D; Baker JN
Description
An account of the resource
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of "bad news." To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees. PROCEDURE: The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering "bad news." RESULTS: Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family's need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant's self-perceived improvement in comfort and preparedness persisted over time. CONCLUSIONS: Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees' communication skills.
Identifier
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<a href="http://doi.org/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">10.1002/pbc.26089</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
April 2018 List
Baker JN
Bereavement
Cunningham MJ
Kaye E
Levine DR
Mahoney D
Pediatrics
Pilot Projects
Snaman JM
Sykes 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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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
Dublin Core
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
systematic review; hospice and palliative medicine; bereavement; father grief
Creator
An entity primarily responsible for making the resource
McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
-
Text
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Backlog
URL Address
<a href="http://doi.org/10.1002/cncr.30087" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.30087</a>
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Title
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Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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bereavement; Palliative Care; Communication; end of life; Grief; Pediatric oncology; bereaved parent; bereavement program; cancer; health care provider
Creator
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Snaman JM; Kaye EC; Torres C; Gibson DV; Baker JN
Description
An account of the resource
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death. METHODS: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society.
2016-05
Identifier
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<a href="http://doi.org/10.1002/cncr.30087" target="_blank" rel="noreferrer">10.1002/cncr.30087</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
2016
Backlog
Baker JN
Bereaved Parent
Bereavement
Bereavement Program
Cancer
Communication
End Of Life
Gibson DV
Grief
Health Care Provider
Journal Article
Kaye EC
Palliative Care
Pediatric Oncology
Snaman JM
Torres C
-
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Title
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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/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.51496</a>
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Title
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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
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
2023
Subject
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Humans; Child; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
Creator
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McNeil MJ; Ehrlich B; Wang H; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gómez García W; Graetz D; Kaye EC; Metzger M; Sabato Danon CV; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. OBJECTIVES: To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. DESIGN, SETTING, AND PARTICIPANTS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. MAIN OUTCOMES AND MEASURES: The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. RESULTS: A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. CONCLUSIONS AND RELEVANCE: This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.51496</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
Agulnik A
Baker JN
Bustamante M
Child
Devidas M
Dussel V
Ehrlich B
Female
Friedrich P
Garcia Quintero X
Gillipelli SR
Gomez Garcia W
Graetz D
Humans
JAMA Network Open
Kaye EC
Latin America
McNeil MJ
Metzger M
Neoplasms/therapy
Only Child
Palliative Care
Physicians
Quality Of Life
Sabato Danon CV
Wang H
-
Dublin Core
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/S2666-6367%2823%2900237-3</a>
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Title
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Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
Publisher
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Transplantation and Cellular Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Creator
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Levine DR; Cuviello A; Baker JN
Description
An account of the resource
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Identifier
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<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</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
anxiety
Appetite
Baker JN
bleeding
bodily secretions
Child
conference abstract
Controlled Study
coughing
Cuviello A
Data Analysis
Demographics
Diarrhea
Distress Syndrome
do not resuscitate order
Documentation
Dyspnea
edema
Fatigue
Female
fever
hematopoietic cell
Hospice
Human
human cell
Intubation
Irritability
July List 2023
Levine DR
Lifespan
Major Clinical Study
Male
Medical Record Review
Nausea And Vomiting
Pain
Palliative Care
Palliative Therapy
Quality Of Life
Retrospective Study
Surgery
Survival
Terminal Care
Transplantation
Transplantation and Cellular Therapy
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.12.128</a>
Dublin Core
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Title
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Incorporating Bereaved Parents as Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care (FR452)
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
2018
Subject
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terminal care; Bereavement; Terminal Care
Creator
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Snaman JM; Kaye E; Levine DR; Clark L; Wilcox R; Cunningham MJ; Baker JN
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.128</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
April 2018 List
Baker JN
Bereavement
Clark L
Cunningham MJ
Journal of Pain and Symptom Management
Kaye E
Levine DR
Snaman JM
Terminal Care
Wilcox R
-
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Title
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October 2018 List
Text
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Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/1049909118786875</a>
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Title
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Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
Publisher
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The American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bereavement; communication training; end of life; palliative care education; pediatric oncology; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye EC; Spraker-Perlman H; Levine D; Clark L; Wilcox R; Barnett B; Sykes April; Lu Z; Cunningham MJ; Baker JN
Description
An account of the resource
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. METHODS: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. RESULTS: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. CONCLUSIONS: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
Identifier
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<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">10.1177/1049909118786875</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Baker JN
Barnett B
Bereavement
Clark L
communication training
Cunningham MJ
End Of Life
Kaye EC
Levine D
Lu Z
Palliative Care Education
Pediatric Oncology
Pediatric Palliative Care
September 2018 List
Snaman JM
Spraker-Perlman H
Sykes April
The American Journal of Hospice & Palliative Care
Wilcox R
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.6004/jnccn.2016.0076" target="_blank" rel="noreferrer">http://doi.org/10.6004/jnccn.2016.0076</a>
Dublin Core
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Title
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Integrating Palliative Care in Pediatric Oncology: Evidence for an Evolving Paradigm for Comprehensive Cancer Care
Publisher
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Journal Of The National Comprehensive Cancer Network
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Levine DR; Johnson LM; Snyder A; Wiser RK; Gibson D; Kane JR; Baker JN
Description
An account of the resource
BACKGROUND: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital. METHODS: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death. RESULTS: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%. CONCLUSIONS: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.
2016-06
Identifier
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<a href="http://doi.org/10.6004/jnccn.2016.0076" target="_blank" rel="noreferrer">10.6004/jnccn.2016.0076</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
2016
Backlog
Baker JN
Gibson D
Johnson LM
Journal Article
Journal Of The National Comprehensive Cancer Network
Kane JR
Levine DR
Snyder A
Wiser RK
-
Dublin Core
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.06.005</a>
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Title
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Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes
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
2023
Subject
The topic of the resource
Caregivers; Hematopoietic Cell Transplantation; Palliative Care; Patients; Pediatrics; Quality of life
Creator
An entity primarily responsible for making the resource
Levine DR; Epperly R; Collins G; Talleur AC; Mandrell B; Pritchard M; Sarvode MS; Li C; Lu Z; Baker JN
Description
An account of the resource
Context Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT. Objectives This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT. Methods Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1month -1year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations. Results 81 participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 24 parents of patients ≥age-10, and 21 patients≥age-10. Most (65%) were 1-3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT. Conclusion Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.06.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.06.005</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
Baker JN
Caregivers
Collins G
Epperly R
Hematopoietic Cell Transplantation
Journal of Pain and Symptom Management
July List 2023
Levine DR
Li C
Lu Z
Mandrell B
Palliative Care
Patients
Pediatrics
Pritchard M
Quality Of Life
Sarvode MS
Talleur AC
-
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/10.1016/j.pcl.2007.10.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2007.10.011</a>
Dublin Core
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Title
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Integration of Palliative Care Practices into the Ongoing Care of Children with Cancer: Individualized Care Planning and Coordination
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
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Baker JN; Hinds PS; Spunt SL; Barfield RC; Allen C; Powell BC; Anderson LH; Kane JR
Description
An account of the resource
Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.
2008
Identifier
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<a href="http://doi.org/10.1016/j.pcl.2007.10.011" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.10.011</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2008
Allen C
Anderson LH
Backlog
Baker JN
Barfield RC
Hinds PS
Journal Article
Kane JR
Pediatric Clinics of North America
Powell BC
Spunt SL
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-70</a>
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Title
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Key factors affecting dying children and their families
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
2005
Subject
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Child; Humans; Professional-Family Relations; Communication; Quality of Health Care; Stress; adolescent; bereavement; decision making; Family/psychology; Palliative Care/standards; Terminal Care/standards; Psychological/etiology
Creator
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Hinds PS; Schum L; Baker JN; Wolfe J
Description
An account of the resource
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
2005
Identifier
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<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-70</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Backlog
Baker JN
Bereavement
Child
Communication
Decision Making
Family/psychology
Hinds PS
Humans
Journal Article
Journal of Palliative Medicine
Palliative Care/standards
Professional-family Relations
Psychological/etiology
Quality Of Health Care
Schum L
Stress
Terminal Care/standards
Wolfe J
-
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Title
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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.3390/children8060472" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8060472</a>
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Title
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Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development
Publisher
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Children
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; bereaved parents; bereavement care; pediatric oncology bereavement
Creator
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Spraker-Perlman HL; Aglio T; Kaye EC; Levine D; Barnett B; Berry Carter K; McNeil M; Clark L; Baker JN
Description
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As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.
Identifier
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<a href="http://doi.org/10.3390/children8060472" target="_blank" rel="noreferrer noopener">10.3390/children8060472</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
Aglio T
Baker JN
Barnett B
Bereaved Parents
Bereavement Care
Berry Carter K
Children
Clark L
Kaye EC
Levine D
McNeil M
pediatric oncology bereavement
Pediatric Palliative Care
Spraker-Perlman HL
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jpm.2014.0364" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2014.0364</a>
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Methylnaltrexone for Opioid-Induced Constipation in Children and Adolescents and Young Adults with Progressive Incurable Cancer at the End of Life
Publisher
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Journal Of Palliative Medicine
Date
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2015
Creator
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Flerlage JE; Baker JN
Identifier
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<a href="http://doi.org/10.1089/jpm.2014.0364" target="_blank" rel="noreferrer">10.1089/jpm.2014.0364</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Baker JN
Flerlage JE
Journal of Palliative Medicine
Oncology 2017 List
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30541</a>
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Title
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Mixed-methods analysis of decisional regret in parents following a child's death from cancer
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
2023
Subject
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Child; grief; Only Child; parent; decisional regret; mixed methods
Creator
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Feifer D; Broden EG; Xiong N; Mazzola E; Baker JN; Wolfe J; Snaman JM
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models. RESULTS: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories. CONCLUSIONS: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.
Identifier
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<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener">10.1002/pbc.30541</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 SE3 - Oncology
Baker JN
Broden EG
Child
Decisional regret
Feifer D
Grief
Mazzola E
Mixed methods
Only Child
Parent
Pediatric Blood and Cancer
Snaman JM
Wolfe J
Xiong N
-
Dublin Core
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Title
A name given to the resource
2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.019" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.05.019</a>
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Title
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Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Salek M; Woods C; Gattas M; Gattuso JS; Mandrell B; Baker JN; Kaye EC
Description
An account of the resource
CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families. OBJECTIVES: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation. METHODS: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software. RESULTS: 174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial). CONCLUSION: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.019</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2022 Special Edition 3 - Oncology List
Baker JN
Gattas M
Gattuso JS
Journal of Pain and Symptom Management
Kaye EC
Mandrell B
models of care
multidisciplinary
Palliative Care
Pediatric Cancer
Salek M
Woods C
-
Dublin Core
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Title
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January 2022 List
Text
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Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.2196/26777" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/26777</a>
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Title
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Natural Language Processing and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study
Publisher
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Journal of Medical Internet Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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machine learning; pediatric oncology; Patient reported outcomes; natural language processing; PROs
Creator
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Lu Z; Sim J; Wang JX; Forrest CB; Krull KR; Srivastava D; Hudson MM; Robison LL; Baker JN; Huang I-C
Description
An account of the resource
Background: Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. Objective: This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms. Methods: This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children’s Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods. Results: Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930). Conclusions: The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.
Identifier
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<a href="http://doi.org/10.2196/26777" target="_blank" rel="noreferrer noopener">10.2196/26777</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
Forrest CB
Huang I-C
Hudson MM
January 2022 List
Journal Of Medical Internet Research
Krull KR
Lu Z
machine learning
natural language processing
Patient Reported Outcomes
Pediatric Oncology
PROs
Robison LL
Sim J
Srivastava D
Wang JX