A Phenomenological Qualitative Study of Primary Informal Caregiver of Chinese Patients with Advanced Stage COPD: An In-Depth Exploration of Experiences and Needs

Background: Chronic obstructive pulmonary disease (COPD) is a progressive respiratory disorder. It poses significant challenges in its advanced stages and requires frequent hospitalizations and complex care strategies. The burden on informal caregivers, who play a crucial role in managing the disease, is profound and multifaceted, involving physical, emotional, and social challenges. Objective: This study aimed to explore the lived experiences and needs of primary informal caregivers for patients with advanced COPD in China, with a focus on their emotional, physical, and social challenges and coping strategies. Methods: A phenomenological qualitative approach was employed to provide an in-depth understanding of caregiver experiences. Data were collected through face-to-face semi-structured interviews with 15 primary informal caregivers of advanced COPD patients from Central China. The interviews were analyzed using Colaizzi’s method to extract key themes. Results: Caregivers reported significant emotional burdens, including anxiety and fear related to the patient’s health and future. Physical challenges were prevalent, with many caregivers experiencing fatigue and health deterioration due to the demands of caregiving. Social isolation was also a critical issue, as caregiving responsibilities limited personal time and social interactions. Despite these challenges, caregivers employed various coping strategies, though these were often insufficient to fully mitigate the stress of caregiving. Conclusion: Informal caregivers of patients with advanced COPD often face intense physical and psychological burdens and need comprehensive support systems. Enhancements in caregiver education, the development of targeted psychological supports, and the integration of caregivers into formal care plans are essential to improve the health outcomes of both caregivers and patients. Keywords: chronic obstructive pulmonary disease, informal caregiving, caregiver burden, caregiver support, emotional stress, social isolation, caregiver coping strategy