目的 探索患方、医护方及管理方对我国血液透析专家型患者应具备的核心能力、培养方式及评价方法的看法和观点。方法 运用质性研究中的现象学研究方法,于2022年11—2023年2月采用目的抽样法对3所三级甲等医院14例有疾病管理经验的血液透析患者、5名血液净化专科护士、3名血液净化科医师和3名护理管理者进行一对一半结构式访谈,并采用Colaizzi 7步分析法分析资料、提炼主题。结果 共提炼出4个主题及12个亚主题：（1）血液透析患者参与专家型患者计划意愿的影响因素（积极因素、消极因素）;（2）血液透析专家型患者的角色定位和核心能力（角色定位、自我管理能力、健康信息素养、共同决策能力、沟通协调能力、教育指导能力）;（3）血液透析专家型患者需要进行专业化培训与考核评价（入选条件、培训内容、培训形式、评价方法）;（4）血液透析专家型患者的培养有赖于完整的支持网络。结论 建立、健全一套完整且可持续的专家型患者培养体系及支持体系,建议赋能血液透析患者,提升其主动健康意识与能力,增强专家型患者计划参与意愿,对血液透析专家型患者进行专业化培养与考核评价,重视和加强对血液透析专家型患者的自我管理能力、健康信息素养、共同决策能力、沟通协调能力、教育指导能力等几种重要核心能力的培养。

Objective To explore the perspectives of patients, healthcare practitioners and hospital administrators on the core competency, cultivation and evaluation of hemodialysis expert patients in China. Methods Purposive sampling was used to select 14 hemodialysis patients with disease management experience, 5 hemodialysis nurse specialists, 3 hemodialysis physicians, and 3 nursing administrators in 3 tertiary grade-A hospitals between November 2022 and February 2023. With phenomenological research method in qualitative research, one-to-one semi-structured interviews were conducted. The Colaizzi 7-step analysis was used to analyze the data and refine themes. Results Four themes and twelve sub-themes were extracted:(1) Influencing factors of hemodialysis patients' willingness to participate in expert patient planning (positive factors and negative factors);(2) role orientation and core competence of hemodialysis expert patients (role orientation, self-management ability, health information literacy, joint decision-making ability, communication and coordination ability, and education and guidance ability); (3) professional training and evaluation (eligibility requirements, training contents and forms, and evaluation methods); (4) a complete support network for the cultivation of hemodialysis expert patients. Conclusion It is recommended to establish a complete and sustainable expert patient cultivation system and support system. It is proposed to empower hemodialysis patients to enhance their proactive health awareness and ability, and strengthen their willingness to participate in expert patient programs. Professional training and assessment evaluation should be conducted for hemodialysis expert patients, with emphasis on and reinforcement of cultivating several important core capabilities of self-management ability, health literacy, shared decision-making ability, communication and coordination ability, and educational guidance ability.