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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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June 2021 List
Text
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June 2021 List
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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
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
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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.
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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
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
-
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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May 2019 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
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>
Dublin Core
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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
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000538" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000538</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).
Description
An account of the resource
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