A phenomenological study on the lived experience and needs of end-stage heart failure from the patients’ perspective
10.12026/j.issn.1001-8565.2025.11.11
- VernacularTitle:患者视角下心力衰竭终末期真实体验和需求的研究
- Author:
Ying XIONG
1
;
Rong FU
1
;
Jingwen HU
1
Author Information
1. Department of Cardiovascular Medicine， the First Affiliated Hospital of Xi’an Jiaotong University， Xi’an 710061， China
- Publication Type:Journal Article
- Keywords:
heart failure;
hospice care;
need;
death education
- From:
Chinese Medical Ethics
2025;38(11):1453-1459
- CountryChina
- Language:Chinese
-
Abstract:
ObjectiveTo deeply understand the lived experience and needs of patients with end-stage heart failure， and to provide references for better implementing hospice care for patients with heart failure. MethodsA qualitative phenomenological research method was adopted to conduct in-depth interviews with 15 patients with end-stage heart failure. The Colaizzi 7-step analysis method was used to code， analyze， and extract themes from the interview data. ResultsFour themes and 10 sub-themes were identified： first， experiencing physical and psychological distress （a desire for relief from physical pain and a need for psychological counseling）； second， ambivalence towards family support （yearning for care but feeling guilty）； third， actively seeking social support （expecting to be understood and valued， facilitating access to support from the medical system， and differing perceptions of doctor-patient shared decision-making）； fourth， complex psychological experience regarding prognosis （experiencing fear and worry， feeling disappointed， living in the moment， and accepting death）. ConclusionMedical staff， family caregivers， and society should jointly pay attention to the physical and mental feelings and needs of patients with end-stage heart failure and provide targeted care. It is recommended to implement multidisciplinary team management， promote doctor-patient shared decision-making， meet individualized needs， and provide appropriate education on life and death concepts， thereby establishing a palliative and hospice care service model for end-stage heart failure with characteristics.
