1
40
10
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.3390/children7080086" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children7080086</a>
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Title
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Defining a "Good Death" in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; cancer; qualitative; adolescent and young adult; interdisciplinary
Creator
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Taylor M R; Barton K S; Kingsley J M; Heunis J; Rosenberg A R
Description
An account of the resource
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a "good" death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of "good" pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.
Identifier
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<a href="http://doi.org/10.3390/children7080086" target="_blank" rel="noreferrer noopener">10.3390/children7080086</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
adolescent and young adult
Barton K S
Cancer
Children (Basel)
Heunis J
Interdisciplinary
Kingsley J M
Oncology 2020 List
Palliative Care
Qualitative
Rosenberg A R
Taylor M R
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1007/s00520-019-05249-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-019-05249-3</a>
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Title
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Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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grief; parental grief; pediatric oncology; bereavement; bereavement support
Creator
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Snaman J; Morris S E; Rosenberg A R; Holder R; Baker J; Wolfe J
Description
An account of the resource
Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response. Method(s): Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer. Result(s): Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors. Conclusion(s): This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents. Copyright © 2019, Springer-Verlag GmbH Germany, part of Springer Nature.
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<a href="http://doi.org/10.1007/s00520-019-05249-3" target="_blank" rel="noreferrer noopener">10.1007/s00520-019-05249-3</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).
2020
Baker J
Bereavement
Bereavement Support
Grief
Holder R
Morris S E
Oncology 2020 List
Parental Grief
Pediatric Oncology
Rosenberg A R
Snaman J
Supportive Care In Cancer
Wolfe J
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.020</a>
Dublin Core
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Title
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Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
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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
2020
Subject
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pediatric; prognosis; cancer; end-of-life; disparities; communication
Creator
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Mack J W; Uno H; Twist C J; Bagatell R; Rosenberg A R; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J R; Cohn S L; Fernandez J H; Diller L R; Shusterman S
Description
An account of the resource
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents. Result(s): About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited. Conclusion(s): Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.020</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bagatell R
Baker J N
Cancer
Cohn S L
Communication
Diller L R
Disparities
end-of-life
Fernandez J H
Glade Bender J
Granger M M
Journal of Pain and Symptom Management
Mack J W
Marachelian A
Oncology 2020 List
Park J R
Pediatric
Prognosis
Rosenberg A R
Shusterman S
Twist C J
Uno H
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319886215</a>
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Title
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Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis
Creator
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Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R
Description
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Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Identifier
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<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Article
Bona K
Bradford M C
cancer center
cancer specific quality of life
Child
Connor-Davidson Resilience Scale
Controlled Study
Coping Behavior
environmental resilience
Female
Hope Scale
Human
Lau N
Major Clinical Study
Male
McCauley E
Oncology 2020 List
outcome assessment
Palliative Medicine
Palliative Therapy
patient-reported outcome
Pediatric Quality of Life Inventory
Post Hoc Analysis
Psychological Distress Scale
psychosocial development
Quality Of Life
Randomized Controlled Trial
Rosenberg A R
School Child
Scott S
Socioeconomics
Steineck A
stress management
Total Quality Management
Treatment Outcome
Yi-Frazier J P
Young Adult
-
Dublin Core
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.09.037" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.09.037</a>
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Title
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Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: a qualitative analysis of U.S. Survey Data
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
2020
Subject
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Burnout; Covid-19; Pediatric; Professional; Resilience; Well-being; Work-life balance
Creator
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Rosenberg A R; Weaver M S; Fry A; Wiener L
Description
An account of the resource
CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on pediatric palliative care clinicians' personal and professional wellbeing. METHODS: The Palliative Assessment of Needed DEvelopments &Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June, 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19. RESULTS: Of 207 multidisciplinary respondents from 80 U.S. cities, 148 (71%) provided written responses to open-ended questions and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% versus 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving healthcare altogether. Personal benefits included lessons-learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose. CONCLUSION: Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.09.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.09.037</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Burnout
COVID-19
Fry A
Journal of Pain and Symptom Management
November 2020 List
Pediatric
Professional
Resilience
Rosenberg A R
Weaver M S
Well-being
Wiener L
Work-life balance
-
Dublin Core
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000685</a>
Dublin Core
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Title
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Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children
Publisher
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Journal of hospice and palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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children with special health care needs; complex chronic conditions; palliative care; pediatrics
Creator
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Johnston E E; Currie E R; Chen Y; Kent E E; Ornstein K A; Bhatia S; Dionne-Odom J N; Rosenberg A R
Description
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There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children with CCCs and identify factors associated with lack of PC awareness. We used the National Cancer Institute's national Health Information National Trends Survey 2018 data to determine the percentage of caregivers of ill children who have PC awareness. After matching, caregiver PC awareness was compared with that of (1) the general survey population, (2) other caregivers, and (3) caregivers not caring for children. We used multivariable regression to determine factors associated with lack of PC awareness. Of 131 caregivers, 60% had "never heard of" PC. Caregivers of children were no more likely to have heard of PC than the general survey population (P = .76), noncaregivers (P = .97), or caregivers of nonchildren (P = .13). Caregivers younger than 40 years and without a college degree were less likely to have PC awareness than their peers. Most caregivers of ill children have no PC awareness, with no more PC awareness than the general population. Nurses caring for children with CCCs can help educate families and other health care team members about PC.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000685" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000685</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bhatia S
Chen Y
Children With Special Health Care Needs
Complex Chronic Conditions
Currie E R
Dionne-Odom J N
Johnston E E
Journal of Hospice and Palliative Nursing
Kent E E
November 2020 List
Ornstein K A
Palliative Care
Pediatrics
Rosenberg A R
-
Dublin Core
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Title
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September 2020 List
Text
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Citation List Month
September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.035" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.06.035</a>
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"I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions
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
2020
Subject
The topic of the resource
beareavement; children; chronic disease; disability; end of life; palliative care
Creator
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Bogetz J F; Revette A; Rosenberg A R; DeCourcey D
Description
An account of the resource
Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s): This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs. Method(s): In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness. Result(s): One hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond "readiness" for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death. Conclusion(s): Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." More research is needed to identify supportive elements among parents facing their child's EOL. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.035</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
beareavement
Bogetz J F
Children
Chronic Disease
DeCourcey D
Disability
End Of Life
Journal of Pain and Symptom Management
Palliative Care
Revette A
Rosenberg A R
September 2020 List
-
Dublin Core
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Title
A name given to the resource
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2019.0084</a>
Dublin Core
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Title
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End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice
Publisher
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Journal of adolescent and young adult oncology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; article; controlled study; conversation; face cancer; human; narrative; pain; palliative therapy; terminal care; young adult
Creator
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Sansom-Daly U M; Wakefield C E; Patterson P; Cohn R J; Rosenberg A R; Wiener L; Fardell J E
Description
An account of the resource
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Identifier
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<a href="http://doi.org/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0084</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Adult
Article
Cohn R J
Controlled Study
Conversation
face cancer
Fardell J E
Human
Journal of adolescent and young adult oncology.
Narrative
Oncology 2019 List
Pain
Palliative Therapy
Patterson P
Rosenberg A R
Sansom-Daly U M
Terminal Care
Wakefield C E
Wiener L
Young Adult
-
Dublin Core
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Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.011</a>
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Title
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Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
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
2019
Subject
The topic of the resource
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
Creator
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Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Description
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CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</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).
2019
Bluebond-Langner M
Boss R D
Decision-making
Family
Feudtner C
Funding
Hinds P S
infrastructure
Journal of Pain and Symptom Management
Lyon M E
Methodology
October 2019 List
Palliative Care
Pediatric
Research
Rosenberg A R
Symptoms
Training
Wiener L
Wolfe J
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Dublin Core
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March 2019 List
Text
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Citation List Month
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2019.01.005</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference
Publisher
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Journal of Pain and Symptom Management
Date
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2019
Subject
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culture; palliative care; Pediatric; family; religion; health disparity; race/ethnicity
Creator
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Rosenberg A R; Bona K; Coker T; Feudtner C; Houston K; Ibrahim A; Macauley R; Wolfe J; Hays R
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2019.01.005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care-delivery. METHODS: Participants explored cases in one of four workshops focused on differences based on either race/ethnicity, economic disparity, religion/spirituality, or family-values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real-time. We used content analyses to qualitatively evaluate the texts and generate recommendations. RESULTS: Participants included 142 individuals representing over 6 unique disciplines, 25 of the United States, and 3 nations. Whereas the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient- and family-experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. CONCLUSION: Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.
2019
Bona K
Coker T
Culture
Family
Feudtner C
Hays R
health disparity
Houston K
Ibrahim A
Journal of Pain and Symptom Management
Macauley R
March 2019 List
Palliative Care
Pediatric
race/ethnicity
Religion
Rosenberg A R
Wolfe J