1
40
59
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2021.0005</a>
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Title
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Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Publisher
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Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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child; United States; article; female; hospital admission; human; male; priority journal; quality of life; palliative therapy; hospice; Europe; parent; interpersonal communication; legal guardian; patient comfort; physician; child parent relation; demographics; care behavior; health belief; voice; nurse; medical decision making; encouragement; reassurance
Creator
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Neumann ML; Weaver MS; Lord B; Wiener L; Hinds PS
Description
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Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. Conclusions: The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.
Identifier
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<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Article
August List 2041
care behavior
Child
Child Parent Relation
Demographics
encouragement
Europe
Female
Health Belief
Hinds PS
Hospice
Hospital Admission
Human
Interpersonal Communication
legal guardian
Lord B
Male
Medical Decision Making
Neumann ML
Nurse
Palliative Medicine Reports
Palliative Therapy
Parent
Patient Comfort
Physician
Priority Journal
Quality Of Life
reassurance
United States
Voice
Weaver MS
Wiener L
-
Dublin Core
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamapediatrics.2023.1602</a>
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Title
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Goals of Care Among Parents of Children Receiving Palliative Care
Publisher
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JAMA Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Palliative Care; article; cohort analysis; controlled study; human; major clinical study; male; chronic disease; Patient Care Planning; quality of life; palliative therapy; comfort; demographics; life extension
Creator
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Feudtner C; Beight LJ; Boyden JY; Hill DL; Hinds PS; Johnston EE; Friebert SE; Bogetz JF; Kang TI; Hall M; Nye RT; Wolfe J
Description
An account of the resource
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. <br/>Objective(s): To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. <br/>Design, Setting, and Participant(s): A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. <br/>Result(s): A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. <br/>Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2023.1602</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
Article
August List 2032
Beight LJ
Bogetz JF
Boyden JY
Child
Chronic Disease
Cohort Analysis
Comfort
Controlled Study
Demographics
Feudtner C
Friebert SE
Hall M
Hill DL
Hinds PS
Human
JAMA Pediatrics
Johnston EE
Kang TI
life extension
Major Clinical Study
Male
Nye RT
Palliative Care
Palliative Therapy
Patient Care Planning
Quality Of Life
Wolfe J
-
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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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1177/01939459231163441" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/01939459231163441</a>
Dublin Core
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Title
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Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study
Publisher
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Western Journal of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Hospice Care; Terminal Care; Child; Death; Humans; Palliative Care; Patient Protection and Affordable Care Act; United States
Creator
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Svynarenko R; Cozad MJ; Mack JW; Keim-Malpass J; Hinds PS; Lindley LC
Description
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Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limited. This article provides a brief overview of IVA and its assumptions. It illustrates the use of IVA by investigating the comparative effectiveness of concurrent versus standard hospice care for reducing 1-day hospice enrollments. Concurrent hospice care is a relatively recent type of care enabled by the Affordable Care Act in 2010 for children enrolled in the Medicaid program and allows for receiving life-prolonging medical treatment concurrently with hospice care. The IVA was conducted using observational data from 18,152 pediatric patients enrolled in hospice between 2011 and 2013. The results indicated that enrollment in concurrent hospice care reduced 1-day enrollment by 19.3%.
Identifier
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<a href="http://doi.org/10.1177/01939459231163441" target="_blank" rel="noreferrer noopener">10.1177/01939459231163441</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
Child
Cozad MJ
Death
Hinds PS
Hospice Care
Humans
July List 2023
Keim-Malpass J
Lindley LC
Mack JW
Palliative Care
Patient Protection and Affordable Care Act
Svynarenko R
Terminal Care
United States
Western Journal of Nursing Research
-
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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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Title
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Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care
Publisher
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Nursing Economic$
Date
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2022
Subject
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Cost-Benefit Analysis; Hospice Care; Hospices
Creator
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Lindley LC; Cozad MJ; Svynarenko R; Keim-Malpass J; Mack JW; Hinds PS
Description
An account of the resource
Using a sample of 18,152 pediatric hospice patients, this study assessed the cost-effectiveness of concurrent care over standard hospice care. Analysis of incremental cost-effectiveness ratios with bootstrapping simulations showed that concurrent care was more effective but at a higher cost.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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
Cost-Benefit Analysis
Cozad MJ
Hinds PS
Hospice Care
Hospices
July List 2023
Keim-Malpass J
Lindley LC
Mack JW
Nursing Economic$
Svynarenko R
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/09699260.2021.1898077</a>
Dublin Core
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Title
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Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study
Publisher
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Progress in Palliative Care
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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Cho E; Gilmer MJ; Friedman DL; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.
Identifier
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<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1898077</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
Akard TF
Cho E
Friedman DL
Gilmer MJ
Hendricks-Ferguson VL
Hinds PS
Oncology
Progress In Palliative Care
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2020.0139</a>
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Title
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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Oncology
Creator
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Akard TF; Dietrich MS; Friedman DL; Wray S; Gerhardt CA; Hendricks-Ferguson V; Hinds PS; Rhoten B; Gilmer MJ
Description
An account of the resource
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0139</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
Akard TF
Dietrich MS
Friedman DL
Gerhardt CA
Gilmer MJ
Hendricks-Ferguson V
Hinds PS
Journal of Palliative Medicine
Oncology
Rhoten B
Wray S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.28921" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.28921</a>
Dublin Core
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Title
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Homestead Together: Pediatric Palliative Care Telehealth Support for Rural Children with Cancer during Home-Based End-Of-Life Care
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
The topic of the resource
Oncology
Creator
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Weaver MS; Shostrom VaK; Neumann ML; Robinson JE; Hinds PS
Description
An account of the resource
BACKGROUND: Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. METHODS: The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based-hospice care. Each child received standard of care home-based hospice care from an adult-trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. RESULTS: Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4-95). Children self-reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end-of-life care. CONCLUSION: Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28921" target="_blank" rel="noreferrer noopener">10.1002/pbc.28921</a>
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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
Hinds PS
Neumann ML
Oncology
Pediatric Blood & Cancer
Robinson JE
Shostrom VaK
Weaver MS
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2023 List
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000918" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/njh.0000000000000918</a>
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Title
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Conceptualizing the Value of Pediatric Concurrent Hospice Care
Publisher
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Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Hospice Care; Hospice; Child; Delivery of Health Care; Hospice Care; Hospice; Human
Creator
An entity primarily responsible for making the resource
Sharp WS; Svynarenko R; Fornehed MLC; Cozad MJ; Keim-Malpass J; Mack JW; Hinds PS; Mooney-Doyle K; Mendola A; Lindley LC
Description
An account of the resource
Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/njh.0000000000000918" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000918</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
Child
Cozad MJ
Delivery of Health Care
Fornehed MLC
Hinds PS
Hospice
Hospice Care
Human
Journal of Hospice and Palliative Care
Keim-Malpass J
Lindley LC
Mack JW
March List 2023
Mendola A
Mooney-Doyle K
Sharp WS
Svynarenko R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2022 Special Edition 3 - Oncology List
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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221100809</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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Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Identifier
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<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</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
Akard TF
American Journal of Hospice and Palliative Medicine
children with cancer
Cho E
Coping
Dietrich MS
digital storytelling
Friedman DL
Gerhardt CA
Gilmer MJ
Given BA
Hendricks-Ferguson VL
Hinds PS
Intervention
legacy
Nursing
Palliative Care
Pediatric
-
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000884</a>
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"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
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Journal of hospice and palliative nursing
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2022
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child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Creator
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Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Description
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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</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
Article
August 2022 List
Broden EG
Cancer Patient
Child
Chronic Disease
Comfort
Controlled Study
Curley MAQ
Distress Syndrome
Hinds PS
Human
Infant
Intensive Care
Interview
Journal of Hospice and Palliative Nursing
Major Clinical Study
Male
Malignant Neoplasm
Memory
Narrative
Nursing
Pain
Pediatric Intensive Care Unit
Perception
quantitative analysis
Sedation
Terminal Care
Werner-Lin AV
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0131</a>
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Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
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Journal of Palliative Medicine
Date
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2021
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Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Creator
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Weaver MS; Hinds PS; Kellas JK; Hecht ML
Description
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Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 2 - Parent Perspectives
Adolescence
Child
Communication
compassion
Conceptual Framework
Coping
Family Centered Care
Hecht ML
Hinds PS
Journal of Palliative Medicine
Kellas JK
Male
Palliative Care
Parental Attitudes
Parenting
Parents
Pediatric Care
Personality
Professional-family Relations
Social Identity
Stress
Support
Theoretical models
Weaver MS
-
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0618</a>
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"It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research
Publisher
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Journal of Palliative Medicine
Date
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2021
Subject
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benefits and burdens; end-of-life research; palliative care research; pediatrics
Creator
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Reggio C; Mowbray C; Waldron MK; Rood AL; Sibilia G; Mooney-Doyle K; Hinds PS
Description
An account of the resource
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others," "Speaking about what is hard is important," and "Being in the study was sometimes hard but not bad." Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
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<a href="http://doi.org/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0618</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 2 - Parent Perspectives
benefits and burdens
end-of-life research
Hinds PS
Journal of Palliative Medicine
Mooney-Doyle K
Mowbray C
palliative care research
Pediatrics
Reggio Cheryl
Rood AL
Sibilia G
Waldron MK
-
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Title
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May 2022 List
Text
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Citation List Month
May 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0050" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2022.0050</a>
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Title
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Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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burnout; communication; critical care; end-of-life care; professional; psychological; qualitative research; stress
Creator
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Wolfe AHJ; Hinds PS; Arnold RM; Soghier L; Tompkins R
Description
An account of the resource
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced pediatricians after impactful pediatric patient deaths. Objectives: To define the salient features of an impactful pediatric patient death and physicians' grief and coping responses. As a secondary aim, we explored the cognitive and emotional training physicians described as helpful or would be helpful when coping after impactful patient deaths. Design: We conducted a prospective qualitative study using semistructured interviews and applied descriptive thematic content analysis to the transcribed interviews. Setting/Subjects: We enrolled pediatric intensive care unit trainees and attendings in a single United States institution over a six-month period from January 2021 to June 2021. Results: Both trainee and attending physicians were most impacted by acute or unexpected patient deaths. Trainees were particularly impacted by their first or early career patient deaths. Both groups found talking about the death of a patient the most helpful coping mechanism. Attending physicians coped with positive reframing, whereas novices more frequently utilized avoidance, numbing, and rumination. The importance of experienced physician's role modeling vulnerability and supporting trainee growth rather than “getting it right” were highlighted as trainee coping gaps. Conclusions: Novice physicians are particularly vulnerable to acute stress after the death of a patient and require additional coping resources and supports. Future projects should explore the impact of teaching emotion-focused coping techniques on trainee resiliency and coping after early career patient deaths.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0050" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0050</a>
2022
Arnold RM
Burnout
Communication
Critical Care
End-of-life Care
Hinds PS
Journal of Palliative Medicine
May 2022 List
Professional
Psychological
Qualitative Research
Soghier L
Stress
Tompkins R
Wolfe AHJ
-
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April 2022 List
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April 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.02.052" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2022.02.052</a>
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Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases
Publisher
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The Journal of Pediatrics
Date
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2022
Subject
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child; chronic disease; patient-reported outcomes; PROMIS
Creator
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Forrest CB; Schuchard J; Bruno C; Amaral S; Cox ED; Flynn KE; Hinds PS; Huang IC; Kappelman MD; Krishnan JA; Kumar RB; Lai JS; Paller AS; Phipatanakul W; Schanberg LE; Sumino K; Weitzman ER; Reeve BB
Description
An account of the resource
Objectives To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. Study design Participants 8-24 years-old and their parents were enrolled into 14 studies that evaluated PROMIS® PROs across 10 chronic conditions--asthma, atopic dermatitis, cancer, cancer survivors, chronic kidney disease, Crohn’s disease, juvenile idiopathic arthritis, lupus, sickle cell disease, and type 1 diabetes mellitus. PRO scores were contrasted with the United States general population of children using nationally representative percentiles. PRO-specific coefficients of variation were computed to illustrate the degree of variation in scores within versus between conditions. Condition-specific measures of disease severity and Cohens d effect sizes were used to examine PRO scores by disease activity. Results Participants included 2,975 child respondents and 2,392 parent respondents who provided data for 3,409 unique children: 52% were 5-12 years-old, 52% female, 25% African-American/Black, and 14% Hispanic. Across all 10 chronic conditions, children reported more anxiety, fatigue, pain, and mobility restrictions than the general pediatric population. Variation in PRO scores within chronic disease cohorts was equivalent to variation within the general population, exceeding between-cohort variation by factors of 1.9 (mobility) to 5.7 (anxiety). Disease activity was consistently associated with poorer self-reported health, and these effects were weakest for peer relationships. Conclusions Chronic conditions are associated with symptoms and functional status in children and adolescents across 10 different disorders. These findings highlight the need to complement conventional clinical evaluations with those obtained directly from patients themselves using PROs.
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<a href="http://doi.org/10.1016/j.jpeds.2022.02.052" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.02.052</a>
2022
Amaral S
April 2022 List
Bruno C
Child
Chronic Disease
Cox ED
Flynn KE
Forrest CB
Hinds PS
Huang IC
Kappelman MD
Krishnan JA
Kumar RB
Lai JS
Paller AS
Patient-reported Outcomes
Phipatanakul W
PROMIS
Reeve BB
Schanberg LE
Schuchard J
Sumino K
The Journal Of Pediatrics
Weitzman ER
-
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Title
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June 2022 List
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June 2022 List
URL Address
<a href="http://doi.org/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">http://doi.org/10.4037/ajcc2022294</a>
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Title
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Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation
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American Journal of Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Acute Disease; Child; Death; Humans; Intensive Care Units Pediatric; Neoplasms; Pain; Respiration Artificial
Creator
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Broden EG; Hinds PS; Werner-Lin A; Quinn R; Asaro LA; Curley MAQ
Description
An account of the resource
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.
Identifier
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<a href="http://doi.org/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">10.4037/ajcc2022294</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
Acute Disease
American Journal of Critical Care
April 2022 List
Asaro LA
Broden EG
Child
Curley MAQ
Death
Hinds PS
Humans
Intensive Care Units Pediatric
Neoplasms
Pain
Quinn R
Respiration Artificial
Werner-Lin A
-
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Title
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June 2022 List
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June 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091221089337</a>
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Title
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Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Concurrent hospice care; Incremental cost analysis; Medicaid; Pediatric hospice care
Creator
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Cozad MJ; Svynarenko R; Hinds PS; Mack JW; Keim-Malpass J; Lindley LC
Description
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BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. OBJECTIVE(S): The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. METHOD(S): Using national Medicaid data of 18 147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. RESULT(S): Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. CONCLUSION(S): This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.
Identifier
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<a href="http://doi.org/10.1177/10499091221089337" target="_blank" rel="noreferrer noopener">10.1177/10499091221089337</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
American Journal Of Hospice And Palliative Care
April 2022 List
concurrent hospice care
Cozad MJ
Hinds PS
Incremental cost analysis
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Pediatric Hospice Care
Svynarenko R
-
Dublin Core
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0050" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2022.0050</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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Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Burnout; Communication; Critical Care; End-of-life care; Professional; Psychological; Qualitative research; Stress
Creator
An entity primarily responsible for making the resource
Wolfe AHJ; Hinds PS; Arnold RM; Soghier L; Tompkins R
Description
An account of the resource
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced pediatricians after impactful pediatric patient deaths. Objective(s): To define the salient features of an impactful pediatric patient death and physicians' grief and coping responses. As a secondary aim, we explored the cognitive and emotional training physicians described as helpful or would be helpful when coping after impactful patient deaths. Design(s): We conducted a prospective qualitative study using semistructured interviews and applied descriptive thematic content analysis to the transcribed interviews. Setting/Subjects: We enrolled pediatric intensive care unit trainees and attendings in a single United States institution over a six-month period from January 2021 to June 2021. Result(s): Both trainee and attending physicians were most impacted by acute or unexpected patient deaths. Trainees were particularly impacted by their first or early career patient deaths. Both groups found talking about the death of a patient the most helpful coping mechanism. Attending physicians coped with positive reframing, whereas novices more frequently utilized avoidance, numbing, and rumination. The importance of experienced physician's role modeling vulnerability and supporting trainee growth rather than "getting it right" were highlighted as trainee coping gaps. Conclusion(s): Novice physicians are particularly vulnerable to acute stress after the death of a patient and require additional coping resources and supports. Future projects should explore the impact of teaching emotion-focused coping techniques on trainee resiliency and coping after early career patient deaths.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2022.0050" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0050</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
April 2022 List
Arnold RM
Burnout
Communication
Critical Care
End-of-life Care
Hinds PS
Journal of Palliative Medicine
Professional
Psychological
Qualitative Research
Soghier L
Stress
Tompkins R
Wolfe AHJ
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-4018</a>
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Title
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Good-Parent Beliefs: Research, Concept, and Clinical Practice
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
administration; communication skills; hospice; interpersonal skills; palliative medicine; Parent; practice management
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Weaver MS; October T; Feudtner C; Hinds PS
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Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision-making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, we offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.
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<a href="http://doi.org/10.1542/peds.2019-4018" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-4018</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 1 - Parent Perspectives
Administration
Communication Skills
Feudtner C
Hinds PS
Hospice
interpersonal skills
October T
Palliative Medicine
Parent
Pediatrics
Practice Management
Weaver MS
-
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<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000810</a>
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A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care
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Journal of Hospice & Palliative Nursing
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2021
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Medicaid; constipation; pediatric hospice care; concurrent hospice care; pediatric end of life
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Lindley LC; Keim-Malpass J; Cozad MJ; Mack JW; Svynarenko R; Fornehed MLC; Stone W; Qualls K; Hinds PS
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Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (β = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.
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<a href="http://doi.org/10.1097/njh.0000000000000810" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000810</a>
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2021
concurrent hospice care
Constipation
Cozad MJ
Fornehed MLC
Hinds PS
January 2022 List
Journal Of Hospice & Palliative Nursing
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
pediatric end of life
Pediatric Hospice Care
Qualls K
Stone W
Svynarenko R
-
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<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211056039</a>
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Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
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American Journal of Hospice and Palliative Medicine
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2021
Subject
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pediatric hospice care; hospice length of stay; medicaid; concurrent hospice care; care continuity; emergency department use; hospice live discharge; inpatient admission
Creator
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Lindley LC; Cozad MJ; Mack JW; Keim-Malpass J; Svynarenko R; Hinds PS
Description
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BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries.MethodsUsing national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared.ResultsConcurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (? = 2.76, P < .001) and reduced hospice live discharges (? = ?2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (? = 2.09, P < .001) or inpatient care (? = .007, P < .05) transitions during hospice enrollment.ConclusionOur study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
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<a href="http://doi.org/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">10.1177/10499091211056039</a>
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2021
American Journal of Hospice and Palliative Medicine
care continuity
concurrent hospice care
Cozad MJ
emergency department use
Hinds PS
Hospice Length Of Stay
hospice live discharge
inpatient admission
January 2022 List
Keim-Malpass J
Lindley LC
Mack JW
Medicaid
Pediatric Hospice Care
Svynarenko R
-
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<a href="http://doi.org/10.1097/njh.0000000000000802" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000802</a>
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Impact of Pediatric Primary Palliative Care Education and Mentoring in Practice
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Journal of Hospice & Palliative Nursing
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2021
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education; mentoring; moral distress; palliative care; pediatrics; primary palliative care
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Lafond D; Perko K; Fisher D; Mahmood LA; Hinds PS
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Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and skills of frontline intradisciplinary clinicians in caring for children with serious conditions and their families. We undertook an intensive educational initiative consisting of didactic and mentoring sessions, and mentored quality improvement projects. Outcomes included the following: 93.3% of participants reported comfort in discussing death, suffering, spirituality, and hope with families, and increased comfort in end-of-life care (89.5%), increased knowledge (94.7%) and skills (100%), improved communication (100%), and being better prepared to discuss and access palliative care resources (100%). Secondary outcomes included 33% increase in specialty pediatric palliative care consults and 98% increase in the integration of specialty palliative care for patients with high-risk cancers. Specialty pediatric palliative care referral became standard for patients with cystic fibrosis, high-risk solid and brain tumors, heart failure, and patients receiving a stem cell transplant. Clinician self-reported moral distress decreased by 30%. This project improved primary palliative care knowledge, attitudes, and confidence in skills, access to care, and family satisfaction, and decreased clinician self-reported moral distress. We report on the 4-year period of project implementation and sustainability.
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<a href="http://doi.org/10.1097/njh.0000000000000802" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000802</a>
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2021
Education
Fisher D
Hinds PS
Journal Of Hospice & Palliative Nursing
Lafond D
Mahmood LA
mentoring
Moral Distress
November 2021 List
Palliative Care
Pediatrics
Perko K
Primary Palliative Care
-
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<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-049403</a>
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Family Caregiver Partnerships in Palliative Care Research Design and Implementation
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Pediatrics
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2021
Subject
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pediatric; palliative care; Research Design; family caregivers; partnerships
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Weaver MS; Wiener L; Moon MM; Gordon B; Patterson KK; Hinds PS
Description
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* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”1 Similarly, family partnerships in pediatric palliative care (PPC) research represent an innovative approach to the planning, delivery, and evaluation of research that is grounded in mutually beneficial relationships that recognize the importance of the family caregiver perspective. The goal of partnered research or study teams is to synthesize the unique perspectives of family caregivers, clinicians, regulatory representatives, and researchers to strengthen research design and implementation. This is accomplished by each unique stakeholder speaking from their own perspective, contributing what they know, and working together to integrate perspectives. The process of moving from just inviting family caregivers to be research subjects to actually engaging with family caregivers as … Address correspondence to Meaghann S. Weaver, MD, MPH, FAAP, Hand in Hand/Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, 8200 Dodge St, Omaha, NE 68198. E-mail: meweaver{at}childrensomaha.org
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<a href="http://doi.org/10.1542/peds.2020-049403" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-049403</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Family Caregivers
Gordon B
Hinds PS
Moon MM
Palliative Care
partnerships
Patterson KK
Pediatric
Pediatrics
Research Design
Weaver MS
Wiener L
-
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<a href="http://doi.org/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0618</a>
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“It Can Be Hard But It's Not Bad”: Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research
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Journal of Palliative Medicine
Date
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2021
Subject
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benefits and burdens; end-of-life research; palliative care research; pediatrics
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Reggio C; Mowbray C; Waldron MK; Rood AL; Sibilia G; Mooney-Doyle K; Hinds PS
Description
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Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential.Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%).Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted.Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: “Hoping to help others,” “Speaking about what is hard is important,” and “Being in the study was sometimes hard but not bad.”Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0618" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0618</a>
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2021
benefits and burdens
end-of-life research
Hinds PS
Journal of Palliative Medicine
June 2021 List
Mooney-Doyle K
Mowbray C
palliative care research
Pediatrics
Reggio C
Rood AL
Sibilia G
Waldron MK
-
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February 2021 List
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February 2021 List
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<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children7120265</a>
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Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
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Children (Basel)
Date
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2020
Subject
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pediatric; family; parenting; communication; pediatric palliative care; complex medical needs
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Weaver MS; Neumann ML; Lord B; Wiener L; Lee J; Hinds PS
Description
An account of the resource
BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good parent" comes into existence for parents, (2) How parents' definition of "being a good parent" may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. AIM: The purpose of this study was to explore these current gaps in the "good parent concept" knowledge base from the perspective of parents of children with chronic or complex illness. MATERIALS AND METHODS: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. RESULTS: The term "trying to be a good parent" resonated with 85% of the 67 responding parents. For the majority of parents, the concept of "being a good parent" started to exist in parental awareness before the child's birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child's prognosis and changing health as influential on their "trying to be a good parent" concept. Parental advocacy, child's age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of "being a good parent". CONCLUSIONS: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.
Identifier
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<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">10.3390/children7120265</a>
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2020
Children (Basel)
Communication
complex medical needs
Family
February 2021 List
Hinds PS
Lee J
Lord B
Neumann ML
Parenting
Pediatric
Pediatric Palliative Care
Weaver MS
Wiener L
-
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May 2019 List
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May 2019 List
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<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0483</a>
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The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
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Journal of Palliative Medicine
Date
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2019
Subject
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pediatric palliative care; benefits and burdens; palliative care research
Creator
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Weaver MS; Mooney-Doyle K; Kelly KP; Montgomery K; Newman AR; Fortney CA; Bell CJ; Spruit JL; Kurtz U M; Wiener L; Schmidt CM; Madrigal VN; Hinds PS
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<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0483</a>
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Description
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OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
2019
Bell CJ
benefits and burdens
Fortney CA
Hinds PS
Journal of Palliative Medicine
Kelly KP
Kurtz U M
Madrigal VN
May 2019 List
Montgomery K
Mooney-Doyle K
Newman AR
palliative care research
Pediatric Palliative Care
Schmidt CM
Spruit JL
Weaver MS
Wiener L
-
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May 2019 List
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May 2019 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000538" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000538</a>
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Integrating the Comfort Theory Into Pediatric Primary Palliative Care to Improve Access to Care
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Journal of Hospice & Palliative Nursing
Date
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2019
Creator
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Lafond D A; Bowling S; Fortkiewicz JM; Reggio C; Hinds PS
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<a href="http://doi.org/10.1097/njh.0000000000000538" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000538</a>
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Description
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Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects. An evidence-based practice/quality improvement project, guided by the Comfort Theory, provided primary palliative care education and mentorship to improve knowledge, skills, and attitudes of direct care clinicians. Training consisted of didactic and self-directed learning, mentoring, and completion of unit-based projects to establish meaning and impact best practices and policies. A total of 149 direct care clinicians, comprising 3 cohorts, enrolled in the program. Improvements in interdisciplinary collaboration in care were demonstrated through 21 unit-based projects, the development of triggers for specialty palliative care consults in several high-risk populations, and the development of institutional guidelines for end-of-life care. The Comfort Theory guided integration of palliative care for children with serious illness and their families. This project empowered direct care clinicians in caring for patients, providing support to clinical staff, and in developing best practices.
2019
Bowling S
Fortkiewicz JM
Hinds PS
Journal Of Hospice & Palliative Nursing
Lafond D A
May 2019 List
Reggio C
-
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Title
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April 2019 List
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<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.jpeds.2015.05.002</a>
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Title
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Research Priorities in Pediatric Palliative Care
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Journal of Pediatrics
Date
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2015
Subject
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Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
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Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Description
An account of the resource
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Anghelescu D
April 2019 List
Attitude Of Health Personnel
Baker JN
Carter B
Cunningham MJ
Delphi Technique
Feudtner C
Friebert S
Gibson DV
Hinds PS
Humans
Johnson L
Jones B
Journal of Pediatrics
Kane J R
Levine D R
Mandrell B
Palliative Care
Parents/px [psychology]
Pediatrics
Research
United States
Weaver MS
Wolfe J
-
Dublin Core
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Title
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July 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
July 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1474285" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1474285</a>
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Title
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Life after Loss: Parent Bereavement and Coping Experiences after Infant Death in the Neonatal Intensive Care Unit
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Bakitas M; Meneses K
Identifier
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<a href="http://doi.org/10.1080/07481187.2018.1474285" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1474285</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement and coping experiences after infant death in the NICU. The Dual Process Model of Coping with Bereavement was used as a conceptual framework to help understand how parents cope with grief after infant death. Living with infant death was a process that resulted in major life changes and a process of oscillating among various coping strategies.
2018
Bakitas M
Christian BJ
Currie ER
Day S
Death studies
Hinds PS
July 2018 List
Meneses K
Perna SJ
Robinson C
-
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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July 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
July 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1455765" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1455765</a>
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Title
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End-of-life trends and patterns among children in the US foster care system: 2005-2015
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Lindley LC; Slayter EM
Identifier
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<a href="http://doi.org/10.1080/07481187.2018.1455765" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1455765</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
Drawing on national, longitudinal Adoption and Foster Care Analysis and Reporting System data (2005-2015), demographic, health, foster care, and geographic characteristics of decedents (N = 3,653) aged 1-17 years were examined. On average, decedents were 6 years old, the highest proportion died as infants, and experienced significant trauma in their short lives either through maltreatment or exposure to parental substance use. A noted increase in Medicaid coverage among decedents over time suggests critical access to concurrent treatment and hospice care, but this is unavailable to children with private insurance. This study has policy implications related to the 2010 Affordable Care Act.
2018
Bakitas M
Christian BJ
Currie ER
Day S
Death studies
Hinds PS
July 2018 List
Meneses K
Perna SJ
Robinson 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/10.1097/pcc.0000000000000076" target="_blank" rel="noreferrer">http://doi.org/10.1097/pcc.0000000000000076</a>
Dublin Core
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Title
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The parent perspective:“being a good parent” when making critical decisions in the PICU
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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October TW; Fisher KR; Feudtner C; Hinds PS
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000000076" target="_blank" rel="noreferrer">10.1097/pcc.0000000000000076</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
Description
An account of the resource
2014
2014
Backlog
Feudtner C
Fisher KR
Hinds PS
Journal Article
October TW
Pediatric Critical Care Medicine
-
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/10.1186/1472-684X-13-9" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-13-9</a>
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Title
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Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
decision making
Creator
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Hill DL; Miller VA; Walter JK; Carroll KW; Morrison WE; Munson DA; Kang TI; Hinds PS; Feudtner C
Description
An account of the resource
BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. DISCUSSION: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. SUMMARY: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-684X-13-9" target="_blank" rel="noreferrer">10.1186/1472-684X-13-9</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
2014
Backlog
BMC Palliative Care
Carroll KW
Decision Making
Feudtner C
Hill DL
Hinds PS
Journal Article
Kang TI
Miller VA
Morrison WE
Munson DA
Walter JK
-
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>
Dublin Core
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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
The topic of the resource
Child; Humans; bereavement; Parents; Prospective Studies; Attitude; Autopsy; Biomedical Research; Intention; Brain neoplasms
Creator
An entity primarily responsible for making the resource
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
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/10.1097/PCC.0b013e318272048d" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0b013e318272048d</a>
Dublin Core
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Title
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Characteristics of family conferences at the bedside versus the conference room in pediatric critical care
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; Male; Intensive Care Units; patient care team; decision making; Cohort Studies; Health Care Surveys; Parents; Attitude of Health Personnel; Questionnaires; Prospective Studies; Professional-Family Relations; Physicians; Patient Participation; Intensive Care; Pediatric
Creator
An entity primarily responsible for making the resource
October TW; Watson Anne C; Hinds PS
Description
An account of the resource
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians (90.9%) providing care to 29 patients whose families participated in 58 family conferences. MEASUREMENTS AND MAIN RESULTS: Family conferences, defined as a meeting involving the parent(s) of a PICU patient and the critical care attending physician to discuss a treatment decision, redirection of care from curative to palliative, or deliver bad news, occurred most commonly among families of the sickest patients. Conferences were conducted at the bedside 20 times out of 58 (33%). Although physicians stated a general preference to discuss withdrawal or withholding care in the conference room, there was no difference in location during actual conferences. Physicians preferred the bedside when they wanted the patient to participate (p = 0.01) or because it was perceived to be easier (p < 0.0005) or faster (p = 0.016) to conduct, while the conference room was preferred when additional space was needed (p < 0.0005). Family conferences at the bedside were less likely to include a social worker (p < 0.0005), consultant physicians (p = 0.043), or father of the patient (p = 0.006) as compared with conferences in a conference room. Family conferences convened to discuss a treatment were followed by a decision within 24 hours (42% of the time) and a change in code status (32% of the time). In 32 of 58 family conferences (55%), the attending physician did not have a prior relationship with the family. CONCLUSION: Family conferences in the PICU are common both at the bedside and in conference rooms in a subpopulation of the most critically ill children and frequently result in a treatment decision or change in code status.
2013-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0b013e318272048d" target="_blank" rel="noreferrer">10.1097/PCC.0b013e318272048d</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 Of Health Personnel
Backlog
Child
Cohort Studies
Decision Making
Female
Health Care Surveys
Hinds PS
Humans
Intensive Care
Intensive Care Units
Journal Article
Male
October TW
Parents
Patient Care Team
Patient Participation
Pediatric
Pediatric Critical Care Medicine
Physicians
Professional-family Relations
Prospective Studies
Questionnaires
Watson Anne 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/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2014.2341</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Good-parent beliefs of parents of seriously ill children
Publisher
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Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
Creator
An entity primarily responsible for making the resource
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Description
An account of the resource
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</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
2015
Acute Disease
Adaptation
Adolescent
Attitudes
Backlog
Carroll KW
Child
Child welfare
Chronic Disease
Cross-sectional Studies
Faerber JA
Female
Feudtner C
Health Knowledge
Hill DL
Hinds PS
Humans
Infant
JAMA Pediatrics
Journal Article
Kang T
Male
Miller VA
Mollen CJ
Morrison WE
Munson DA
Newborn
Parent-child Relations
Parents
Philadelphia
Practice
Preschool
Psychological
Questionnaires
Stress
Walter JK
-
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
An entity responsible for making the resource available
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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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
2015
Backlog
Baker JN
Cancer
Hinds PS
Johnson LM
Journal Article
Levine DR
Mandrell BN
Oncology at EOL
West NK
Yang J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/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
An unambiguous reference to the resource within a given context
<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
The nature or genre of the resource
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
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2007-2681" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2007-2681</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Cancer-related symptoms most concerning to parents during the last week and last day of their child's life
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; Terminal Care; Adult; Parents; Death; Time; adolescent; Preschool; infant; Health; Parents/psychology; Neoplasms/physiopathology/psychology/therapy
Creator
An entity primarily responsible for making the resource
Pritchard M; Burghen E; Srivastava DK; Okuma J; Anderson L; Powell B; Furman WL; Hinds PS
Description
An account of the resource
OBJECTIVE: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the child's parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care. METHODS: Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the child's life, speaking English, being willing to participate, and having access to a telephone. RESULTS: Eighteen symptoms of concern were identified as occurring during their child's final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice. CONCLUSIONS: This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-2681" target="_blank" rel="noreferrer">10.1542/peds.2007-2681</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Adolescent
Adult
Anderson L
Backlog
Burghen E
Child
Death
Female
Furman WL
Health
Hinds PS
Humans
Infant
Journal Article
Male
Neoplasms/physiopathology/psychology/therapy
Okuma J
Palliative Care
Parents
Parents/psychology
Pediatrics
Powell B
Preschool
Pritchard M
Srivastava DK
Terminal Care
Time
-
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/10.1177/0193945906295533" target="_blank" rel="noreferrer">http://doi.org/10.1177/0193945906295533</a>
<a href="http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448" target="_blank" rel="noreferrer">http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448</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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Conducting End-of-Life Studies in Pediatric Oncology
Publisher
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Western Journal Of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Terminal Care; Pediatrics; Pediatric Nursing; Longitudinal Studies; Reproducibility of Results; Oncology at EOL; Pediatric oncology; Clinical Nursing Research; dying children and adolescents; end-of-life research; Oncologic Nursing/ethics
Creator
An entity primarily responsible for making the resource
Hinds PS; Burghen E; Pritchard M
Description
An account of the resource
Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.
2007-06
Identifier
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<a href="http://doi.org/10.1177/0193945906295533" target="_blank" rel="noreferrer">10.1177/0193945906295533</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2007
Backlog
Burghen E
Clinical Nursing Research
dying children and adolescents
end-of-life research
Hinds PS
Humans
Journal Article
Longitudinal Studies
Oncologic Nursing/ethics
Oncology at EOL
Pediatric Nursing
Pediatric Oncology
Pediatrics
Pritchard M
Reproducibility of Results
Terminal Care
Western Journal of Nursing Research
-
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/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0172</a>
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941671/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941671/</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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Race Does Not Influence Do-Not-Resuscitate Status or the Number or Timing of End-of-Life Care Discussions at a Pediatric Oncology Referral Center
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
2009
Creator
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Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen E; Gattuso JS; West NK; Althoff J; Funk A; Hinds PS
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. χ(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who selfidentified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
2009-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2009
Althoff J
Backlog
Baker JN
Burghen E
Funk A
Gattuso JS
Hinds PS
Journal Article
Journal of Palliative Medicine
Kane JR
Liu W
Rai S
Srivastava K
West NK
Zawistowski CA
-
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.ejon.2005.11.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejon.2005.11.003</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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Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Publisher
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European Journal Of Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
Creator
An entity primarily responsible for making the resource
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
Description
An account of the resource
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adaptation
Attitude To Health
Backlog
Barrera M
Baruchel S
Bouffet E
Capra M
Child
Decision Making
European Journal Of Oncology Nursing
Focus Groups/methods
Focus Groups/utilization
Gammon J
Geenberg ML
Helping Behavior
Hinds PS
Humans
Journal Article
Llewellyn-Thomas HA
Morale
Needs Assessment
Neoplasms
Nurse's Role
Nursing Methodology
Oncologic Nursing
Parents/psychology
Patient Selection
Patient-centered Care
Pediatric Nursing
PedPal Lit
Professional-family Relations
Program Development
Psychological
Qualitative Research
Quality Of Life/psychology
Questionnaires
Social Support
Sung L
Terminal Care
Tomlinson D
Volpe J