Abstract
OBJECTIVES: To investigate the self-management challenges and influencing factors faced by patients during the waiting period for heart transplantation through the lens of social ecology as well as to explore the family management needs of Chinese patients with end-stage heart disease during this critical waiting period. DESIGN: During March 2023 to March 2024, purposive sampling was adopted to conduct in-depth interviews with 11 patients awaiting heart transplantation and their primary caregivers at a Class III Grade A hospital in Nanjing, China. A phenomenological research approach was adopted, and Colaizzi's method was applied to analyse the data and extract the key themes. SETTING: The study involved face-to-face interviews at a Grade A hospital in Nanjing, China. PARTICIPANTS: During March 2023 to March 2024, face-to-face interviews were conducted with 11 patients and their primary caregivers. RESULTS: The analysis identified the primary reasons for patients' limited self-management capacity, yielding 3 overarching themes with 12 subthemes. At the micro level, physical discomfort and inadequate self-management abilities were prominent, as patients experienced persistent physical discomfort, challenges in alleviating symptoms, insufficient knowledge about self-management, a lack or loss of belief in their ability to manage their health and prolonged periods of anxiety and depression. At the meso level, the study identified limited family support, inadequate professional medical assistance and insufficient social support. These issues manifested as limited caregiving capacity within families, increased financial burdens on households, insufficient educational resources and guidance provided by medical staff, a lack of continuity in care across different settings and the absence of supportive social networks. At the macro level, systemic challenges such as the unequal distribution of medical resources and the absence of a comprehensive long-term follow-up mechanism were identified as significant barriers to effective patient management. CONCLUSION: The dynamic interaction among the micro, meso and macro systems significantly influenced patients' motivation and capacity for self-management, thereby ultimately affecting the progression of their disease and their overall quality of life. To address these challenges, healthcare providers must prioritise comprehensive health guidance for patients during the heart transplantation waiting period. Emphasis should be placed on developing robust family-centred management plans tailored to the unique needs of these patients. In addition, there is a pressing need to establish a coordinated, three-tiered management system that integrates hospitals, families and community resources so as to provide holistic and continuous care for patients awaiting heart transplantation.