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Dublin Core
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Title
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December 2018 List
Text
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Citation List Month
December 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1177/0269216318789025</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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Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Publisher
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Palliative Medicine
Date
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2018
Subject
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Hospital Mortality; Bereavement; Human; Communication; Anxiety; Stress Psychological; Palliative Care; Canada; Attitude to Death; Emotions; Adult Children; Life Change Events; Interviews; Interpersonal Relations; Memory; Collaboration; Narratives; Home Health Care; Purposive Sample; Support Psychosocial; Life Experiences; Patient Care Plans; Quality of Life; Content Analysis; Thematic Analysis; Advance Care Planning; Patient Attitudes; Accountability; Caregiver Attitudes; Health Facilities -- Canada; Idiopathic Pulmonary Fibrosis -- Prognosis; Idiopathic Pulmonary Fibrosis -- Therapy -- Canada; Pulmonologists; Spouses
Creator
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Pooler C; Richman-Eisenstat J; Kalluri M
Description
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Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
Identifier
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<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener">10.1177/0269216318789025</a>
2018
Accountability
Adult Children
Advance Care Planning
anxiety
Attitude To Death
Bereavement
Canada
Caregiver Attitudes
Collaboration
Communication
Content Analysis
December 2018 List
Emotions
Health Facilities -- Canada
Home Health Care
Hospital Mortality
Human
Idiopathic Pulmonary Fibrosis -- Prognosis
Idiopathic Pulmonary Fibrosis -- Therapy -- Canada
Interpersonal Relations
Interviews
Kalluri M
Life Change Events
Life Experiences
Memory
Narratives
Palliative Care
Palliative Medicine
Patient Attitudes
Patient Care Plans
Pooler C
Pulmonologists
Purposive Sample
Quality Of Life
Richman-Eisenstat J
Spouses
Stress Psychological
Support Psychosocial
Thematic Analysis