Reframing caregiver experiences: a qualitative evidence synthesis

This article aims to define caregiving experiences through the perspectives of caregivers, as opposed to the traditional disease-centered paradigm. We identified 338 studies and purposefully sampled 40 for analysis to include experiences of caring for adult and child recipients with physical and mental health impairments. Themes included the following: (1) caregivers struggle to meet the requirements of complex roles; (2) caregiving wears on the caregiver over time, leading to substantial strain; (3) balancing distinct caregiver and care recipient goals can be challenging; (4) periods of caregiving transition lead to uncertainty and stress; and (5) navigating fractured systems can be stressful and is exacerbated by stigma.

Duke Scholars

Author Megan E Shepherd-Banigan Population Health Sciences

Author Sarah Cantrell