目的:探讨工作年龄的成年人如何体验患者参与医院血液透析。
背景:终末期肾脏疾病是一种进行性,慢性疾病使患者的治疗负担高,健康相关生活质量低。患者面临多种与肾衰竭相关的医疗决定。鉴于他们与卫生服务机构的频繁互动,患者参与可能具有特殊价值。
方法:采用叙事方法的定性设计。
方法:2018年,11名35-64岁接受医院血液透析的患者参加了个人访谈。所有访谈都使用叙述方法进行分析。报告遵循报告定性研究指南的合并标准。
结果:患者参与的叙述包括三个主题,遵循他们的医疗轨迹:知情,但不参与治疗选择;护理和控制的二重性;以及反映合作缺陷的脆弱信任。患者获得了关于透析的良好信息,但不参与治疗方式的选择。专业工作,以及治疗的性质,限制了患者的自主权。患者的信任遭受了合作缺陷,导致他们的治疗轨迹延迟,患者将他们的责任延伸到过渡的协调中,作为应对这些问题的一种方式。
结论:该研究发现了与患者参与和跨学科合作相关的挑战。通过对话让患者参与并承认他们的经历,偏好和生活方式可能会加强患者-专业人士对治疗的理解。尽管人们越来越关注无缝轨迹,患者在卫生服务的跨学科合作和协调方面面临障碍。
结论:研究结果表明,需要对需要透析的人进行个性化护理。患者需要参与治疗方式的选择以及与当前治疗相关的决定。信息必须包括不同治疗方式的潜在后果。卫生服务需要加强合作,以确保治疗的连续性和患者的参与。
OBJECTIVE: To explore how working-age adults experience patient participation in hospital haemodialysis.
BACKGROUND: End-stage kidney disease is a progressive, chronic condition imposing patients with high treatment burdens and low health-related quality of life. Patients face multiple medical decisions related to living with kidney failure. Given their frequent interaction with health services, patient participation may be of special value.
METHODS: Qualitative design with a narrative approach.
METHODS: In 2018, eleven patients aged 35-64 years undergoing hospital haemodialysis participated in individual interviews. All interviews were analysed using a narrative approach. Reporting followed the Consolidated criteria for Reporting Qualitative Research guidelines.
RESULTS: The patients\' narratives of participation comprised three themes following their healthcare trajectory: Informed, but not involved in treatment choices; Duality of care and control; and Frail trust reflecting collaborative deficiencies. The patients received good information about dialysis, but were not involved in choice of treatment modality. Professional work, as well as the nature of treatment, contributed to restricted patient autonomy. Patients\' trust suffered from collaborative deficiency generating delays in their treatment trajectories, and patients extended their responsibility into the coordination of transitions as a way of coping with these issues.
CONCLUSIONS: The study identified challenges related to patient involvement and interdisciplinary collaboration. Involving patients through dialogue and acknowledging their experiences, preferences and lifestyles may strengthen the mutual patient-professional understanding of treatment. Despite increased focus on seamless trajectories, patients face obstacles regarding interdisciplinary collaboration and coordination of health services.
CONCLUSIONS: The findings indicate a want of individually customised care for people requiring dialysis. Patients need to be involved in the choice of treatment modality as well as decisions related to the current treatment. Information must include potential consequences of the different treatment modalities. Health services need to strengthen collaboration in order to secure treatment continuity and patient involvement.