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  • ROC2018-090 Ms File Copy 6-13-18

    Rights statement: The final, definitive version of this article has been published in the Journal, American Journal of Hospice & Palliative Medicine, 35(12), 2018, © SAGE Publications Ltd, 2018 by SAGE Publications Ltd at the American Journal of Hospice & Palliative Medicine page: http://journals.sagepub.com/home/AJH on SAGE Journals Online: http://journals.sagepub.com/

    Accepted author manuscript, 115 KB, PDF-document

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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Family Caregiver's Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

Research output: Contribution to journalJournal article

Published
<mark>Journal publication date</mark>12/2018
<mark>Journal</mark>American Journal of Hospice and Palliative Medicine
Issue number12
Volume35
Number of pages7
Pages (from-to)1540–1546
Publication statusPublished
Early online date11/07/18
Original languageEnglish

Abstract

Objectives:
Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home.

Aim:
We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care.

Design:
The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data.

Participants:
Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study.

Results:
Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive.

Conclusions:
This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

Bibliographic note

The final, definitive version of this article has been published in the Journal, American Journal of Hospice & Palliative Medicine, 35(12), 2018, © SAGE Publications Ltd, 2018 by SAGE Publications Ltd at the American Journal of Hospice & Palliative Medicine page: http://journals.sagepub.com/home/AJH on SAGE Journals Online: http://journals.sagepub.com/