Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets

Abstract

Background: Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care.

Aim: The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients.

Design: Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people.

Data sources: Data included qualitative interviews with 156 family caregivers of dying people.

Results: Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis.

Conclusions: Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Keywords: Family caregiving; education; home care; palliative care; qualitative secondary analysis.