Hospital care experiences of female relatives caring for patients with post-stroke dysphagia during the COVID-19: a qualitative study in China

BACKGROUND: Due to the COVID-19 epidemic, Chinese hospitals are forced to impose stringent regulations, which unavoidably affect patients with stroke who need continued rehabilitation and long-term disease treatment. However, there is a lack of qualitative studies in the literature on female relative caregivers of hospitalised patients who had a stroke with dysphagia during the COVID-19 pandemic. OBJECTIVE: In this study, we aimed to explore the experiences of female Chinese caregivers living in the hospital with patients with post-stroke dysphagia during the pandemic. DESIGN: We conducted a qualitative study using semi-structured interviews. SETTING(S): From May 2022 to July 2022, patients were selected from the Acupuncture and Moxibustion Ward and the Encephalopathy Ward of Shenzhen Chinese Medicine Hospital, which receives patients from across the country. PARTICIPANTS: 10 Chinese women who were caregivers of patients with post-stroke dysphagia were finally interviewed. METHODS: Interviews were transcribed verbatim and analysed using Colaizzi’s approach. RESULTS: The primary theme was determined to be ‘kidnapped’ lives. Other sub-themes evolved to depict the lives of female relative caregivers, including inevitable tasks and challenges, precise care, a special dietary pattern, solitary and forgotten, and an elusive future. Due to the trivial nature of caring for patients who had a stroke with dysphagia, the caregivers’ lives were tightly organised and entirely dictated by the patient’s caring needs. Consequently, the caregivers felt that their lives had been kidnapped. CONCLUSIONS: It is imperative that healthcare workers identify and understand the living conditions of female relative caregivers in the hospital, so as to determine their difficulties and needs. Finally, caregivers deserve adequate and effective support, such as technical support, financial support and nutritional guidance.