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B10-A Primary Caregivers’ Experiences of Caring for Patients Under Hospice Care at Home

Research output: Contribution to Journal/MagazineMeeting abstractpeer-review

<mark>Journal publication date</mark>12/2016
<mark>Journal</mark>Journal of Pain and Symptom Management
Issue number6
Number of pages1
Pages (from-to)e20
Publication StatusPublished
Early online date7/12/16
<mark>Original language</mark>English



Although the experiences of family caregivers have received significant attention, there is minimal research that specifically explores carers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. This study aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting, in order to better understand what contributes to their confidence during end-of-life care.


Sixteen bereaved caregivers (14 individuals and one brother/sister dyad) from the Midwest (USA) who received support from a local hospice participated in the study. The qualitative research design involved semi-structured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data.


Four significant storylines running longitudinally through the interviews were identified as shaping caregivers’ confidence, giving meaning to it, and contextualizing it. They were: stories of terminal illness, values/relationships, needs, and support. This study showed that carers’ 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.


This research contributed to the body of knowledge in the area of end-of-life care at home, as it helps professional hospice staff to better understand what aids caregivers to be more confident.