Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada.
Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada.
Am J Kidney Dis. 2019 Oct;74(4):474-482. doi: 10.1053/j.ajkd.2019.02.006. Epub 2019 Apr 2.
RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support.
Descriptive qualitative study using semi-structured interviews and focus groups.
SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada.
Thematic analysis.
3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals).
Participants were primarily white, educated, married, and English speaking, which limits generalizability.
There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
在照护者和医护人员的支持下，培养患者自我管理慢性肾脏病（CKD）的能力，可能会减缓疾病进展并改善健康结局。然而，对于此类患者对自我管理干预的需求，我们知之甚少。本研究旨在确定并描述 CKD 患者及其非专业照护者对 CKD 自我管理支持的需求。
采用半结构式访谈和焦点小组的描述性定性研究。
来自加拿大各地的 6 个焦点小组（37 名参与者）和 11 个电话访谈，参与者为 CKD 成人（1-5 期，未接受肾脏替代治疗）及其非专业照护者。
主题分析。
确定了 3 个主要主题：（1）通过知识赋予权力（了解和理解 CKD、饮食挑战、药物和替代疗法、感知身体、经济影响、身心健康后果、旅行和交通限制以及维持工作和教育）；（2）通过信息共享激活（获取、有意义和相关、时间和数量）；（3）健康之旅的有形支持（家庭、社区和专业人员）。
参与者主要是白人、受过教育、已婚和讲英语，这限制了研究结果的推广。
通过解决与良好生活相关的知识以及分享信息和提供有形支持的优先领域，有机会增强 CKD 自我管理支持。未来的工作可能会根据本研究中确定的患者和照护者的多样化需求，考虑开发创新的 CKD 自我管理支持干预措施。
