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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 2018 List
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).
Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000436" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000436</a>
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
Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care
Publisher
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Journal of Palliative Nursing
Date
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2018
Creator
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Weaver MS; Wichman B; Bace S; Schroeder D; Vail C; Wichman C; Macfadyen A
Description
An account of the resource
The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage (P < .02) correlated with the gap in home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/njh.0000000000000436" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000436</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
August 2018 List
Bace S
Journal of Palliative Nursing
Macfadyen A
Schroeder D
Vail C
Weaver MS
Wichman B
Wichman 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
A name given to the resource
April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0092" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0092</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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Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Quality of Life; palliative therapy; Child; Longitudinal Studies; Only Child; Palliative Care; major clinical study; statistical significance; longitudinal study; prospective study; child; attention; human; female; male; quality of life; article; diagnosis; analysis of variance; daily life activity; Metronidazole; minimal clinically important difference; physical model
Creator
An entity primarily responsible for making the resource
Weaver M; Wichman C; Darnall C; Bace S; Vail C; Macfadyen A
Description
An account of the resource
Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. Objective: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. Design: This prospective quality-of-life study included administration of a 23-item PedsQLTM Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12. Setting/Subjects: All pediatric patients who received a palliative care consultation in our Midwestern free-standing children's hospital over a five-year period were included in the longitudinal study (n = 87). Measurements: Repeated measures ANOVA was used to investigate how proxy-reported quality of life and family impact changed with time with attentiveness to also follow trends in minimal clinically important difference (MCID) metrics. Results: The emotional domain showed a statistically significant positive trend over the first six months of palliative care involvement (p = 0.049), while the physical domain (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the full year. In using a standard of MCID, the physical, emotional, and cognitive domains improved in the quality-of-life scale and the communication, worry, and daily activity domains improved in the family impact scale over 12 months. Conclusions: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0092" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0092</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Analysis of Variance
April 2018 List
Article
Attention
Bace S
Child
daily life activity
Darnall C
Diagnosis
Female
Human
Journal of Palliative Medicine
Longitudinal Studies
longitudinal study
Macfadyen A
Major Clinical Study
Male
Metronidazole
minimal clinically important difference
Only Child
Palliative Care
Palliative Therapy
physical model
Prospective Study
Quality Of Life
Statistical Significance
Vail C
Weaver M
Wichman 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
March 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Palliative Care Needs Assessments: From Paper Forms To Actionable Patient Care
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
2017
Creator
An entity primarily responsible for making the resource
Weaver M; Schroeder D; Wichman C; Bace S; Vail C; Macfadyen 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).
2017
Bace S
Journal of Palliative Medicine
Macfadyen A
March 2017 List
Schroeder D
Vail C
Weaver M
Wichman 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
May 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric Palliative Care Needs Assessments: From Paper Forms To Actionable Patient Care
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
An entity primarily responsible for making the resource
Weaver M; Schroeder D; Wichman C; Bace S; Vail C; Macfadyen A
Identifier
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10.1089/jpm.2016.0507
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bace S
Journal of Palliative Medicine
Macfadyen A
May 2017 List
Schroeder D
Vail C
Weaver M
Wichman 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
October 2017 List
Notes
<p>Weaver, Meaghann S<br />Darnall, Cheryl<br />Bace, Sue<br />Vail, Catherine<br />MacFadyen, Andrew<br />Wichman, Christopher<br />Journal Article<br />Switzerland<br />Children (Basel). 2017 Aug 1;4(8). pii: E65. doi: 10.3390/children4080065.</p>
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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Trending Longitudinal Agreement Between Parent And Child Perceptions Of Quality Of Life For Pediatric Palliative Care Patients
Publisher
An entity responsible for making the resource available
Children (basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Patient Reported Outcomes; Pediatric Palliative Care; Quality Of Life
Creator
An entity primarily responsible for making the resource
Weaver M; Darnall C; Bace S; Vail C; Macfadyen A; Wichman C
Description
An account of the resource
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland-Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child's social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life.
Identifier
An unambiguous reference to the resource within a given context
10.3390/children4080065
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bace S
Children (Basel)
Darnall C
Macfadyen A
October 2017 List
Patient Reported Outcomes
Pediatric Palliative Care
Quality Of Life
Vail C
Weaver M
Wichman C