Li Fei, Zhang Xiao-Min, Chen Yu-Hong, Chen Juan, Liu Si-Yu, Liu Shan-Shan
Department of Cardiothoracic Surgery, Nanjing First Hospital,Nanjing Medical University, Nanjing, Jiangsu, China.
Department of Cardiothoracic Surgery, Nanjing First Hospital,Nanjing Medical University, Nanjing, Jiangsu, China
BMJ Open. 2025 Jun 4;15(6):e099231. doi: 10.1136/bmjopen-2025-099231.
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.
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.
The study involved face-to-face interviews at a Grade A hospital in Nanjing, China.
During March 2023 to March 2024, face-to-face interviews were conducted with 11 patients and their primary caregivers.
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.
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.
从社会生态学角度调查心脏移植等待期患者面临的自我管理挑战及影响因素，并探索中国终末期心脏病患者在这一关键等待期的家庭管理需求。
2023年3月至2024年3月，采用目的抽样法，对中国南京一家三级甲等医院的11名等待心脏移植的患者及其主要照顾者进行深入访谈。采用现象学研究方法，运用Colaizzi法分析数据并提取关键主题。
该研究在中国南京一家甲等医院进行面对面访谈。
2023年3月至2024年3月，对11名患者及其主要照顾者进行面对面访谈。
分析确定了患者自我管理能力受限的主要原因，产生了3个总体主题和12个子主题。在微观层面，身体不适和自我管理能力不足较为突出，患者经历持续的身体不适、缓解症状的挑战、自我管理知识不足、对自身健康管理能力缺乏或丧失信心以及长期的焦虑和抑郁。在中观层面，研究发现家庭支持有限、专业医疗援助不足和社会支持不足。这些问题表现为家庭内照顾能力有限、家庭经济负担加重、医务人员提供的教育资源和指导不足、不同环境下护理缺乏连续性以及缺乏支持性社会网络。在宏观层面，医疗资源分配不均和缺乏全面的长期随访机制等系统性挑战被确定为有效患者管理的重大障碍。
微观、中观和宏观系统之间的动态相互作用显著影响患者的自我管理动机和能力，从而最终影响其疾病进展和整体生活质量。为应对这些挑战，医疗服务提供者必须在心脏移植等待期优先为患者提供全面的健康指导。应强调制定针对这些患者独特需求的强有力的以家庭为中心的管理计划。此外，迫切需要建立一个整合医院、家庭和社区资源的协调的三级管理系统，以便为等待心脏移植的患者提供全面和持续的护理。
