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.
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。