The experiences of confidence of the primary caregivers caring for relatives under hospice care at home

• Main Author: Soroka, Jacek T.
• Published: Lancaster University 2016
• Subjects: 362.17
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.722591

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 experience 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, exploratory, cross sectional research design involved semi- structured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyse 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: Doing What Needs to Be Done -Story of Values and Relationship, The Beginning of the End - Experiencing Terminal Illness Story, Being Able to Handle It - Story of Needs, and The Three Family - Story of Journeying Together 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. Understanding these carer perspectives could help professional hospice staff to better support caregivers to become more confident in their care for a dying relative.