TY - JOUR

T1 - Family Caregiver's Confidence Caring for Relatives in Hospice Care at Home

T2 - An Exploratory Qualitative Study

AU - Soroka, Jacek

AU - Froggatt, Katherine Alison

AU - Morris, Sara

N1 - 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/

PY - 2018/12

Y1 - 2018/12

N2 - 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.

AB - 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.

KW - confidence

KW - end-of-life care

KW - family caregivers

KW - home settings

KW - hospice

KW - palliative care

KW - self-efficacy

U2 - 10.1177/1049909118787779

DO - 10.1177/1049909118787779

M3 - Journal article

VL - 35

SP - 1540

EP - 1546

JO - American Journal of Hospice and Palliative Medicine

JF - American Journal of Hospice and Palliative Medicine

SN - 1049-9091

IS - 12

ER -