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Dublin Core
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Title
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August 2019 List
Text
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Citation List Month
August 2019 List
URL Address
<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.24073</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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Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Publisher
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Pediatric Pulmonology
Date
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2019
Subject
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adolescent; adult; article; female; human; male; palliative therapy; clinical article; palliative care; health care personnel; priority journal; caregiver; parent; perception; communication; semi structured interview; adolescence; attitude to health; cystic fibrosis; health education; lung fibrosis; patient education; qualitative analysis
Creator
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Dellon E P; Helms S W; Hailey C E; Shay R; Carney S D; Schmidt H J; Brown D E; Prieur M G
Description
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Background: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. Objective(s): To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. Method(s): We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. Result(s): Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. Conclusion(s): In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care. Copyright � 2018 Wiley Periodicals, Inc.
Identifier
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<a href="http://doi.org/10.1002/ppul.24073" target="_blank" rel="noreferrer noopener">10.1002/ppul.24073</a>
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).
2019
Adolescence
Adolescent
Adult
Article
Attitude To Health
August 2019 List
Brown D E
Caregiver
Carney S D
Clinical Article
Communication
Cystic Fibrosis
Dellon E P
Female
Hailey C E
Health Care Personnel
Health Education
Helms S W
Human
lung fibrosis
Male
Palliative Care
Palliative Therapy
Parent
Patient Education
Pediatric Pulmonology
Perception
Prieur M G
Priority Journal
Qualitative Analysis
Schmidt H J
Semi Structured Interview
Shay R