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40
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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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
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
2016
Subject
The topic of the resource
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
Creator
An entity primarily responsible for making the resource
J Goldhagen
Description
An account of the resource
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1186/s12904-016-0138-z
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).
2016
August 2016 List
BMC Palliative Care
Chronic Disease
Cost-effectiveness
Generic Core Scales
Health Care Sciences & Services
Health Policy & Services
Health Related Quality Of Life
Home
Hospital Utilization
Illness
Impact
J Goldhagen
Medical Complexity
Pediatric Palliative Care
Pedsql(tm)
Pilot Study
Reliability
United States
Validity
Vulnerable Children
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parenting In The Face Of Childhood Life-threatening Conditions: The Ordinary In The Context Of The Extraordinary
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Distress; Framework; Child; Perspectives; Cancer; Health Policy & Services; Serious Illness; Outcomes; Families; Bereaved Siblings
Life-threatening Condition; Palliative Care; Parenting; Pediatrics; Qualitative Description
Creator
An entity primarily responsible for making the resource
Mooney-Doyle K; Deatrick JA
Description
An account of the resource
OBJECTIVE:
Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.
METHOD:
Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.
RESULTS:
Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.
SIGNIFICANCE OF RESULTS:
The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1017/S1478951515000905
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Bereaved Siblings
Cancer
Child
Deatrick JA
Distress
Families
Framework
Health Policy & Services
June 2016 List
Life-threatening Condition
Mooney-Doyle K
Outcomes
Palliative & Supportive Care
Palliative Care
Parenting
Pediatrics
Perspectives
Qualitative Description
Serious Illness
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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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Needs Of Siblings Of Children With A Life-threatening Illness, Part 2: Psychometric Validation Of The Ibesfems.
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adjustment; Quality Of Life; Pediatric Palliative Care; Childhood-cancer; Young-people; Instrument Scni; Health Policy & Services; Families; Support; Unmet Needs
Needs; Palliative Care; Pediatrics; Questionnaire Development; Siblings.
Creator
An entity primarily responsible for making the resource
Olivier D’avignon M; Dumont S; Valois P; Cohen SR
Description
An account of the resource
OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].
METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.
RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.
SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adjustment
Childhood-cancer
Cohen SR
Dumont S
Families
Health Policy & Services
Instrument Scni
May 2016 List
Needs
Olivier d’avignon M
Palliative & Supportive Care
Palliative Care
Pediatric Palliative Care
Pediatrics
Quality Of Life
Questionnaire Development
Siblings.
Support
Unmet Needs
Valois P
Young-people