The lived experience of inpatient cancer treatment of family caregivers during the COVID-19 lockdown in Shanghai: a descriptive phenomenological study

Abstract
Aims: This study aimed to capture and explore family caregivers’ lived experience of caring for hospitalized patients with cancer during the lockdown.
Background: The unprecedented lockdown episodes due to COVID-19 have brought significant changes in the hospital visiting policies and caregiving practices. As part of the precautionary measures for hospital visits, the bedside companion was restricted to one caregiver for patients with cancer in Shanghai hospitals.
Design: This study adopted a descriptive phenomenological approach.
Methods: Data were collected among 20 family caregivers recruited from the Oncology department of a tertiary hospital in Shanghai in May 2022, using purposive sampling method and followed by unstructured, open-ended interviews. Colaizzi’s seven-step data analysis method was used to analyze the data to reveal the emergent themes and subthemes of the phenomenon.
Results: Four themes were generated on family caregivers’ lived experience of caring for hospitalized patients with cancer during the lockdown, including 1) Feeling scared for the patient; 2) Living a life feeling trapped under COVID-19 surveillance; 3) Feeling neglected and unseen; 4) Growing resilience and appreciation.
Conclusions: The lockdown exacerbated the burden of family caregivers when they cared for the hospitalized patients with cancer during the lockdown period. However, positive reframing of the lived experience facilitated their coping with the challenging situation.
Relevance to clinical practice: Findings from this study highlighted the potential proactive roles the healthcare providers could play in improving family caregivers’ health and supporting them during and beyond the COVID-19 pandemic.