1
40
9
-
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.2009.0295" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2009.0295</a>
Dublin Core
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Title
A name given to the resource
Family support in pediatric palliative care: how are families impacted by their children's illnesses?
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
2010
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Adult; Health Care Surveys; Parent-Child Relations; Professional-Family Relations; Program Evaluation; Multivariate Analysis; Psychometrics; Florida; Regression Analysis; quality of life; adolescent; Preschool; Adaptation; Psychological; Palliative Care/organization & administration; infant; social support; Pediatrics/organization & administration; Telephone
Creator
An entity primarily responsible for making the resource
Knapp CA; Madden VL; Curtis CM; Sloyer P; Shenkman EA
Description
An account of the resource
CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE: To determine how families are impacted and what factors are associated with greater impact. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: The Impact on Family (IOF) Scale. RESULTS: The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION: Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2009.0295" target="_blank" rel="noreferrer">10.1089/jpm.2009.0295</a>
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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
2010
Adaptation
Adolescent
Adult
Backlog
Child
Cross-sectional Studies
Curtis CM
Female
Florida
Health Care Surveys
Humans
Infant
Journal Article
Journal of Palliative Medicine
Knapp CA
Madden VL
Male
Multivariate Analysis
Palliative Care/organization & Administration
Parent-child Relations
Pediatrics/organization & Administration
Preschool
Professional-family Relations
Program Evaluation
Psychological
Psychometrics
Quality Of Life
Regression Analysis
Shenkman EA
Sloyer P
Social Support
Telephone
Young Adult
-
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/10.1177/1049909109360410" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909109360410</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
Pediatric palliative care: feedback from the pediatric intensivist community
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; United States; Intensive Care Units; Attitude of Health Personnel; Questionnaires; Attitude to Death; Professional-Family Relations; Professional Competence; Palliative Care/organization & administration; Continuity of Patient Care/organization & administration; Pediatrics/organization & administration; Pediatric/organization & administration; Terminal Care/organization & administration
Creator
An entity primarily responsible for making the resource
Jones PM; Carter BS
Description
An account of the resource
With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and their health care providers. We report the results of a survey completed in late 2007 of the Section on Critical Care of the American Academy of Pediatrics (AAP). The 102 respondents provided information regarding their clinical and educational experiences, perceived barriers to the provision of palliative care in the intensive care environment, currently available PPC resources, and the usefulness of palliative care specialization in the pediatric intensive care unit.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909109360410" target="_blank" rel="noreferrer">10.1177/1049909109360410</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
2010
Attitude Of Health Personnel
Attitude To Death
Backlog
Carter BS
Child
Continuity Of Patient Care/organization & Administration
Humans
Intensive Care Units
Jones PM
Journal Article
Palliative Care/organization & Administration
Pediatric/organization & Administration
Pediatrics/organization & Administration
Professional Competence
Professional-family Relations
Questionnaires
Terminal Care/organization & Administration
The American Journal of Hospice & Palliative Care
United States
-
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/10.1097/01.mib.0000194182.85047.6a" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.mib.0000194182.85047.6a</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
Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care
Publisher
An entity responsible for making the resource available
Inflammatory Bowel Diseases
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; Physician-Patient Relations; Adult; Age Factors; Continuity of Patient Care; adolescent; Practice Guidelines; Adolescent Transitions; Adolescent Health Services/organization & administration; Pediatrics/organization & administration; Patient Education; Gastroenterology/organization & administration; Inflammatory Bowel Diseases/therapy
Creator
An entity primarily responsible for making the resource
Hait E; Arnold JH; Fishman LN
Description
An account of the resource
The cyclical nature of chronic illness requires that children with inflammatory bowel disease be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues to present significant barriers. The philosophy of transition centers on a process, with the actual transfer to adult care as a point along this clinical pathway. Concrete steps can be taken to help patients prepare for new responsibilities. The aim of this review is to propose a clinical and developmental timeline for both patients and their medical team, including specific responsibilities for both, so that the partnership can best promote a successful transition.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.mib.0000194182.85047.6a" target="_blank" rel="noreferrer">10.1097/01.mib.0000194182.85047.6a</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
Adolescent
Adolescent Health Services/organization & administration
Adolescent Transitions
Adult
Age Factors
Arnold JH
Backlog
Child
Continuity Of Patient Care
Fishman LN
Gastroenterology/organization & administration
Hait E
Humans
Inflammatory Bowel Diseases
Inflammatory Bowel Diseases/therapy
Journal Article
Patient Education
Pediatrics/organization & Administration
Physician-patient Relations
Practice Guidelines
-
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.2004-1321" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1321</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
Health care transition: youth, family, and provider perspectives
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
2005
Subject
The topic of the resource
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
Creator
An entity primarily responsible for making the resource
Reiss JG; Gibson RW; Walker LR
Description
An account of the resource
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</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
2005
Adolescent
Adolescent Health Services/organization & administration
Adolescent Medicine/organization & administration
Adolescent Transitions
Adult
Attitude Of Health Personnel
Attitude To Health
Backlog
CHIR Best Practices
Chronic Disease/therapy
Continuity Of Patient Care
Delivery of Health Care/organization & administration
Disabled Persons
Family
Family Practice
Female
Focus Groups
Gibson RW
Health
Health Services Research
Humans
Insurance
Insurance Coverage
Interdisciplinary Communication
Journal Article
Male
Patient Care Planning
Pediatrics
Pediatrics/organization & Administration
Physician-patient Relations
Reiss JG
Walker LR
-
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/s0885-3924(02)00466-9" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(02)00466-9</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
The status of pediatric palliative care in Europe
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Europe; Palliative Care/organization & administration; Pediatrics/organization & administration
Creator
An entity primarily responsible for making the resource
Dangel T
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(02)00466-9" target="_blank" rel="noreferrer">10.1016/s0885-3924(02)00466-9</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
Description
An account of the resource
2002
2002
Backlog
Dangel T
Europe
Humans
Journal Article
Journal of Pain and Symptom Management
Palliative Care/organization & Administration
Pediatrics/organization & Administration
-
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/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/1054-139X(95)00077-6</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
Between two worlds: bridging the cultures of child health and adult medicine
Publisher
An entity responsible for making the resource available
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Child; Humans; United States; Physician-Patient Relations; Adult; Disabled Persons; Patient Participation; Continuity of Patient Care; Survivors; patient care team; decision making; Adolescent Transitions; Chronic disease; Delivery of Health Care/organization & administration; Internal Medicine/organization & administration; Pediatrics/organization & administration
Creator
An entity primarily responsible for making the resource
Rosen D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">10.1016/1054-139X(95)00077-6</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
Description
An account of the resource
1995
1995
Adolescent Transitions
Adult
Backlog
Child
Chronic Disease
Continuity Of Patient Care
Decision Making
Delivery of Health Care/organization & administration
Disabled Persons
Humans
Internal Medicine/organization & administration
Journal Article
Patient Care Team
Patient Participation
Pediatrics/organization & Administration
Physician-patient Relations
Rosen D
Survivors
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
United States
-
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/10.3928/0090-4481-19971101-12" target="_blank" rel="noreferrer">http://doi.org/10.3928/0090-4481-19971101-12</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
Community resources for children with special healthcare needs
Publisher
An entity responsible for making the resource available
Pediatric Annals
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Humans; United States; Health Services Needs and Demand; Physician's Role; Community Health Services; Family/psychology; Chronic disease; social support; Pediatrics/organization & administration; Information Services
Creator
An entity primarily responsible for making the resource
Johnson CP; Blasco PA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3928/0090-4481-19971101-12" target="_blank" rel="noreferrer">10.3928/0090-4481-19971101-12</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
Description
An account of the resource
1997
1997
Backlog
Blasco PA
Child
Chronic Disease
Community Health Services
Family/psychology
Health Services Needs And Demand
Humans
Information Services
Johnson CP
Journal Article
Pediatric Annals
Pediatrics/organization & Administration
Physician's Role
Social Support
United States
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
URL Address
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">http://scholars.wlu.ca/scwk_faculty/12/</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
Research priorities in pediatric palliative care: a delphi study
Publisher
An entity responsible for making the resource available
Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Attitude of Health Personnel; Attitude to Health; Benchmarking; bereavement; Canada; Child; Consensus; Delphi Technique; Evidence-Based Practice; Family/psychology; Humans; Needs Assessment/organization & administration; Pain/prevention & control; Palliative Care/organization & administration; Pediatrics/organization & administration; Practice Guidelines as Topic; Psychological/prevention & control; Questionnaires; Research Design; Research/organization & administration; Stress
Creator
An entity primarily responsible for making the resource
Steele R; Fletcher JM; Bosma H; Siden H; Straatman L; Fleming C; Cadell S; Davies B
Description
An account of the resource
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">scwk_faculty/12</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).
2007
Attitude Of Health Personnel
Attitude To Health
Benchmarking
Bereavement
Bosma H
Cadell S
Canada
Child
Consensus
Davies B
Delphi Technique
Evidence-based Practice
Family/psychology
Fleming C
Fletcher JM
Humans
Journal Of Palliative Care
Needs Assessment/organization & administration
Pain/prevention & control
Palliative Care/organization & Administration
Pediatrics/organization & Administration
Practice Guidelines As Topic
Psychological/prevention & control
Questionnaires
Research Design
Research/organization & administration
Siden H
Steele R
Straatman L
Stress
-
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
The Needs Of Children With Life-limiting Conditions: A Healthcare-provider-based Model
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Attitude Of Health Personnel; Child; Child Advocacy; Cluster Analysis; Decision Making; Family/psychology; Feasibility Studies; Health Services Accessibility/organization & Administration; Health Services Needs And Demand/organization & Administration; Humans; Medical Futility; Models Organizational; New York; Pain/prevention & Control; Patient Care Team/organization & Administration; Patient-centered Care/organization & Administration; Pediatrics/organization & Administration; Psychology Child; Qualitative Research; Quality Assurance Health Care; Quality Of Life; Right To Die; Spirituality; Terminal Care/organization & Administration
Creator
An entity primarily responsible for making the resource
Donnelly James P; Huff Susan M; Lindsey Michael L; McMahon Kathy A; Schumacher JDonald
Description
An account of the resource
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to develop an empirically based conceptual model of the needs of children with life-limiting conditions. Recognizing the value of both qualitative and quantitative data, concept mapping methodology was selected as an effective way to obtain data that reflected both the "big picture" and subtleties of pediatric end-of-life needs. The seven-cluster concept map appeared best in terms of both interpretability and parsimony. This model includes the following clusters of needs: 1) pain, 2) decision making, 3) medical system access and quality, 4) dignity and respect, 5) family-oriented care, 6) spirituality, and 7) psychosocial issues. We believe that the development of a comprehensive model of the needs of such children is a step toward concrete, measurable, and effective support for children and their families.
Identifier
An unambiguous reference to the resource within a given context
10.1177/104990910502200406
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).
2005
Attitude Of Health Personnel
Child
Child Advocacy
Cluster Analysis
Decision Making
Donnelly James P
Family/psychology
Feasibility Studies
Health Services Accessibility/organization & administration
Health Services Needs And Demand/organization & Administration
Huff Susan M
Humans
Lindsey Michael L
May 2017 List
McMahon Kathy A
Medical Futility
Models Organizational
New York
Pain/prevention & control
Patient Care Team/organization & administration
Patient-Centered Care/organization & administration
Pediatrics/organization & Administration
Psychology Child
Qualitative Research
Quality Assurance Health Care
Quality Of Life
Right to Die
Schumacher JDonald
Spirituality
Terminal Care/organization & Administration
The American Journal of Hospice & Palliative Care