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Dublin Core
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Title
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1177/10499091211005700" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211005700</a>
Dublin Core
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A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
Publisher
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American Journal of Hospice & Palliative Care
Date
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2021
Subject
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hospice; pediatrics; palliative care; end-of-life care; non-metropolitan communities; rural communities
Creator
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Murday P; Downing K; Gaab E; Misasi J; Michelson KN
Description
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BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. DESIGN: A qualitative study involving focus groups (FGs) with PPC stakeholders. SETTING/PARTICIPANTS: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). MEASUREMENTS: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. RESULTS: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. CONCLUSION: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.
Identifier
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<a href="http://doi.org/10.1177/10499091211005700" target="_blank" rel="noreferrer noopener">10.1177/10499091211005700</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).
2021
American journal of hospice & palliative care
Downing K
End-of-life Care
Gaab E
Hospice
May 2021 List
Michelson KN
Misasi J
Murday P
non-metropolitan communities
Palliative Care
Pediatrics
rural communities
-
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
February 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
February 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.484" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2017.12.484</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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Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
Publisher
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Journal Of Pain And Symptom Management
Date
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2017
Subject
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hospice; Needs Assessment; Only Child; Palliative Care; pediatric palliative care; Psychometrics; Terminal Care
Creator
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Donnelly JP; Downing K; Cloen J; Fragen P; Gupton AW; Misasi J; Michelson K
Description
An account of the resource
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. RESULTS: The 93 respondents were predominantly female (n=69, 74%); white (n=79, 85%); college graduates (n=71, 76%); and married or partnered (n=75, 81%). Internal reliability was acceptable (Cronbach's alpha=.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from -.36 to -.51). The most frequently cited need not addressed by our survey was sibling impact (n=17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n=63) rated completion of the survey as "easy" or "very easy." CONCLUSION: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.484" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.12.484</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
Cloen J
Donnelly JP
Downing K
February 2018 List
Fragen P
Gupton AW
Hospice
Journal of Pain and Symptom Management
Michelson K
Misasi J
Needs Assessment
Only Child
Palliative Care
Pediatric Palliative Care
Psychometrics
Terminal Care