Empowered But Isolated

Abstract

Background Family caregivers play crucial roles in the self-management of patients with heart failure (HF). However, little is known about caregiving experiences of Chinese family caregivers during acute HF. Objective The aim of this study was to describe Chinese family caregivers' experiences in symptom management and care-seeking during acute HF. Methods This is an exploratory, qualitative study using the Consolidated Criteria for Reporting Qualitative Research guidelines. Data were collected through semistructured interviews and analyzed with thematic analysis. Findings A total of 21 family caregivers of patients with acute HF were enrolled in this study. “Empowered but isolated” was identified as the overarching theme during data analysis, including 3 themes and 6 subthemes: (1) “Responsible symptom managers: leading the home-based symptom management,” including 2 subthemes, “Proxy in symptom management” and “Only knowing the surface, instead of the truth”; (2) “Powerless anchors: care-seeking is a torturous journey,” including 2 subthemes, “Facing discrepancies in care-seeking” and “Seeing a doctor is the last choice”; (3) “Carrying the weight forward: responsibility combing with emotional burnout,” including 2 subthemes, “Living on tenterhooks” and “Submitting to fate.” Conclusions In this study, we described Chinese family caregivers' experiences in symptom management and care-seeking during acute HF. Although empowered as proxy, they were also isolated bearing a great burden, receiving insufficient support from patients, family, and the medical system.