Supplementary Material for: Care needs of adults on peritoneal dialysis and their informal caregiver: a qualitative study

Introduction
Peritoneal dialysis (PD) provides a sense of control, independence, freedom, and self-efficacy. However, it can also impact a patient’s physical, psychological, and social well-being, affecting both patients and family members. This study aims to investigate the experiences and needs of adults on PD and their informal caregivers to understand how a person-centred approach can improve the response to their needs.

Methods
This is a generic descriptive qualitative research study. Data were collected through semi-structured interviews, transcribed, and analysed using Braun and Clarke’s thematic analysis and NVivo® software. The data of patients and caregivers was triangulated to better understand their needs.

Results
Twelve patients and four informal caregivers were interviewed. We identified five macro themes: ‘Living with kidney disease and peritoneal dialysis and its needs’, ‘Preparation before initiating PD and its needs’, ‘Learning about PD and its needs’, ‘Impact of dialysis on the need of the patients and caregivers’ and ‘Experiences with the care team.’ The pre-dialysis period is crucial, with specific needs for information, education, shared decision-making, and support during the various psychological, physical, and organisational changes in treatment and the disease trajectory. Caregivers’ roles are essential and should always be included in the care path.

Conclusion
This study emphasizes the importance of continuity in care for patients with their care team and how delicate and important the pre-dialysis phase is for informed and shared decision-making regarding kidney replacement treatment. This understanding can help ensure a more person-centred care approach.

引言
腹膜透析（Peritoneal dialysis, PD）为患者带来控制感、独立性、自由度与自我效能感。然而，它也可能影响患者的生理、心理及社会福祉，对患者及其家属均产生作用。本研究旨在调查接受PD治疗的成人患者及其非正式照护者的经历与需求，以了解以人为中心的方法如何更好地响应他们的需求。

方法
本研究为通用描述性定性研究。通过半结构化访谈收集数据，转录后采用Braun和Clarke的主题分析法及NVivo®软件进行分析。对患者与照护者的数据进行三角验证，以更深入理解他们的需求。

结果
共访谈12名患者与4名非正式照护者。研究确定五个宏观主题：“肾病与腹膜透析患者的生活及其需求”、“PD启动前的准备及其需求”、“PD相关知识的学习及其需求”、“透析对患者和照护者需求的影响”以及“与照护团队的互动经历”。透析前期至关重要，在治疗与疾病轨迹中的各类心理、生理及组织变化过程中，患者对照护信息、教育、共同决策及支持存在特定需求。照护者的角色不可或缺，应始终纳入照护路径。

结论
本研究强调患者与照护团队间持续照护的重要性，以及透析前期对于肾脏替代治疗知情且共同决策的微妙性与关键价值。这一认知有助于推动更以人为中心的照护模式落地。