PDF(Pubmed)
Abstract：
BACKGROUND: Unhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic kidney disease (CKD) prior to kidney failure, and no tools exist in nephrology care to identify and support patients with unhelpful illness perceptions. Therefore, this study aims to: (1) identify meaningful and modifiable illness perceptions in patients with CKD prior to kidney failure; and (2) explore needs and requirements for identifying and supporting patients with unhelpful illness perceptions in nephrology care from patients\' and healthcare professionals\' perspectives.
METHODS: Individual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles.
RESULTS: Illness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients\' illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future.
CONCLUSIONS: Several meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD.
METHODS: Individual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles.
RESULTS: Illness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients\' illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future.
CONCLUSIONS: Several meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD.
摘要：
背景：无帮助的疾病认知可以通过干预措施改变，并可以改善预后。然而,对慢性肾脏病（CKD）患者在肾衰竭之前的疾病认知知之甚少，并且在肾脏病护理中没有工具来识别和支持对疾病无帮助的患者。因此,本研究旨在:(1)确定肾衰竭前CKD患者的有意义和可改变的疾病认知;(2)从患者和医疗保健专业人员的角度探讨在肾脏病治疗中识别和支持无帮助的疾病认知患者的需求和要求.
方法：对荷兰CKD患者（n=17）和专业人员（n=10）的故意异质样本进行了个人半结构化访谈。使用混合的归纳和演绎方法对成绩单进行了分析：此后根据自我调节的常识模型对主题分析中确定的主题进行了组织原则。
结果：被认为最有意义的疾病感知与严重性（疾病身份，后果,情绪反应和疾病关注)和可管理性(疾病一致性，CKD的个人控制和治疗控制)。随着时间的推移,患者产生了更多无益的严重性相关疾病认知和更有用的可管理性相关疾病认知，由：CKD诊断，疾病进展,医疗保健支持和接近肾脏替代疗法。实施识别和讨论患者疾病感知的工具被认为是重要的，之后，应该为对疾病无帮助的患者提供支持。应特别注意在结构上为患者和护理人员提供心理社会教育支持，以应对CKD相关症状，后果,对未来的情绪和担忧。
结论：一些有意义和可改变的疾病观念并没有通过肾病学护理而变得更好。这强调了需要识别和公开讨论疾病感知，并支持对疾病感知没有帮助的患者。未来的研究应该调查实施基于疾病感知的工具是否确实会改善CKD的预后。
方法：对荷兰CKD患者（n=17）和专业人员（n=10）的故意异质样本进行了个人半结构化访谈。使用混合的归纳和演绎方法对成绩单进行了分析：此后根据自我调节的常识模型对主题分析中确定的主题进行了组织原则。
结果：被认为最有意义的疾病感知与严重性（疾病身份，后果,情绪反应和疾病关注)和可管理性(疾病一致性，CKD的个人控制和治疗控制)。随着时间的推移,患者产生了更多无益的严重性相关疾病认知和更有用的可管理性相关疾病认知，由：CKD诊断，疾病进展,医疗保健支持和接近肾脏替代疗法。实施识别和讨论患者疾病感知的工具被认为是重要的，之后，应该为对疾病无帮助的患者提供支持。应特别注意在结构上为患者和护理人员提供心理社会教育支持，以应对CKD相关症状，后果,对未来的情绪和担忧。
结论：一些有意义和可改变的疾病观念并没有通过肾病学护理而变得更好。这强调了需要识别和公开讨论疾病感知，并支持对疾病感知没有帮助的患者。未来的研究应该调查实施基于疾病感知的工具是否确实会改善CKD的预后。
