Faculty of Health Science, University of Stavanger, Stavanger, Norway.
Department of Nephrology, Stavanger University Hospital, Stavanger, Norway.
BMC Nephrol. 2020 Jul 29;21(1):314. doi: 10.1186/s12882-020-01973-9.
Patients with chronic kidney disease make day-to-day decisions about how to self-manage their disease. Chronic kidney disease (CKD) includes a risk for progression towards end-stage renal disease and the development of comorbidities, such as cardiovascular disease, which represents the leading cause of death among these patients. To reduce these risks, CKD patients are recommended to follow a healthy lifestyle with physical activity, food and fluid restrictions, and adherence to complex medication regimes throughout all phases of the disease. To manage the complexity of this health situation, health literacy (HL) is considered essential. The current prevailing understanding is that HL is a multidimensional concept and comprises a range of cognitive, affective, social, and personal skills that determine the motivation and ability to gain access to, understand, and use health information. Recently, we investigated multiple aspects of HL in CKD patients in a quantitative cross-sectional study utilizing the Health Literacy Questionnaire (HLQ) and observed that finding good health information and appraising health information were the most challenging aspects of HL. This study aimed to explore CKD patients' lived experiences of different dimensions of HL presented in the HLQ.
This qualitative study utilized in-depth semistructured interviews. Twelve patients with different levels of HL were included. The interviews were analyzed using thematic analysis as described by Braun and Clarke.
We identified three main themes that were significant for CKD patients' HL: 1. Variation in people's attitudes and behavior as health information seekers, 2. The problem of fragmented healthcare in the context of multimorbidity makes the healthcare system challenging to navigate, and 3. The value of a good relationship with healthcare providers.
CKD patients take different approaches to health information. Limiting or avoiding health information may be a strategy used by some individuals to cope with the disease and does not necessarily mean that health information is inaccessible or difficult to understand. Comorbidity and a fragmented healthcare system can make the healthcare system challenging to navigate. A good and trusting relationship with healthcare providers seems to promote several aspects of HL and should be promoted to optimize CKD patients' HL.
慢性肾脏病患者每天都要做出自我管理疾病的决策。慢性肾脏病（CKD）包括向终末期肾病进展的风险以及合并症的发生，如心血管疾病，这是此类患者的主要死亡原因。为降低这些风险，CKD 患者被建议遵循健康的生活方式，包括体力活动、饮食和液体限制，以及在疾病的所有阶段都要坚持复杂的药物治疗方案。为了应对这种复杂的健康状况，健康素养（HL）被认为是必不可少的。目前的普遍理解是，HL 是一个多维度的概念，包括一系列认知、情感、社会和个人技能，这些技能决定了获取、理解和使用健康信息的动机和能力。最近，我们在一项利用健康素养问卷（HLQ）的横断面研究中调查了 CKD 患者的 HL 多个方面，观察到寻找和评估健康信息是 HL 最具挑战性的方面。本研究旨在探讨 CKD 患者在 HLQ 中呈现的 HL 不同维度的生活体验。
本定性研究采用了深入的半结构式访谈。纳入了 12 名不同 HL 水平的患者。访谈采用 Braun 和 Clarke 描述的主题分析进行分析。
我们确定了三个对 CKD 患者 HL 具有重要意义的主题：1. 作为健康信息寻求者，人们的态度和行为存在差异；2. 多病共存背景下的医疗碎片化问题使得医疗系统难以驾驭；3. 与医疗保健提供者建立良好关系的价值。
CKD 患者对健康信息的态度和处理方式各不相同。一些人可能会选择限制或避免获取健康信息，这可能是他们应对疾病的一种策略，并不一定意味着健康信息无法获取或难以理解。合并症和碎片化的医疗系统使得医疗系统难以驾驭。与医疗保健提供者建立良好和信任的关系似乎可以促进 HL 的多个方面，应加以推广以优化 CKD 患者的 HL。
