nts and caregivers. Background Many patients with CKD experience loneliness and social isolation, which are associated with a higher risk of mortality, morbidity, and poor mental health. We aimed to describe the perspectives of patients with CKD and their caregivers on loneliness and social isolation, to inform strategies to increase social participation. Methods A secondary analysis of qualitative data from the Standardized Outcomes in Nephrology initiative dataset (36 focus groups, three Delphi surveys, and seven consensus workshops) was conducted. We extracted and thematically analyzed data from patients with CKD, including those receiving hemodialysis or peritoneal dialysis and those with a kidney transplant, as well as their caregivers, on the perspectives and experiences of loneliness and social isolation. Results Collectively, the studies included 1261 patients and caregivers from 25 countries. Six themes were identified: restricted by the burdens of disease and treatment (withdrawing from social activities because of fatigue, consumed by the dialysis regimen, tethered to treatment, travel restrictions); external vulnerability (infection risk, anxiety of dining out); diminishing societal role (grieving loss of opportunities, social consequences of inability to work); fending for oneself in health care (no one to relate to, lost in uncertainty, unmet psychosocial needs); undermining self-esteem (unable to engage in activities which previously defined self, shame and self-consciousness about appearance, hindering confidence for intimate relationships); and feeling ostracized (disconnected by family and friends, fear of stigma and being misunderstood, guilt of burdening others). Conclusions For patients with CKD and their caregivers, social participation is substantially impaired by the burden of CKD and its treatment and fear of risks to health such as infection. This undermines patient and caregiver mental health, particularly self-esteem and sense of belonging. Additional interventions are needed to improve social connections among people with CKD and their caregivers....

中文翻译：

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慢性肾病患者的社会孤立和孤独体验：二次定性分析


NTS 和护理人员。背景 许多 CKD 患者经历孤独和社会孤立，这与更高的死亡风险、发病率和心理健康状况不佳有关。我们旨在描述 CKD 患者及其护理人员对孤独和社会孤立的看法，为增加社会参与的策略提供信息。方法 对来自肾脏病学标准化结果倡议数据集 （36 个焦点小组、3 个 Delphi 调查和 7 个共识研讨会） 的定性数据进行了二次分析。我们提取并主题分析了 CKD 患者的数据，包括接受血液透析或腹膜透析的患者和肾移植患者，以及他们的护理人员，关于孤独和社会孤立的观点和经历。结果 这些研究总共包括来自 1261 个国家的 25 名患者和护理人员。确定了六个主题：受疾病和治疗负担的限制（因疲劳而退出社交活动、被透析方案消耗、与治疗挂钩、旅行限制）;外部脆弱性（感染风险、外出就餐的焦虑）;社会作用减弱（悲痛失去机会、无法工作的社会后果）;在医疗保健中自生自灭（没有人可以联系，迷失在不确定性中，社会心理需求未得到满足）;破坏自尊（无法从事以前定义自我、羞耻和对外表的自我意识的活动，阻碍了对亲密关系的信心）;以及感到被排斥（与家人和朋友断开连接，害怕耻辱和被误解，对给他人带来负担的内疚）。 结论 对于 CKD 患者及其护理人员，CKD 及其治疗的负担和对感染等健康风险的恐惧严重损害了社会参与。这会损害患者和照护者的心理健康，尤其是自尊和归属感。需要额外的干预措施来改善 CKD 患者及其护理人员之间的社会联系。