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.