Rationale & Objective

Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy.

Study Design

Qualitative study.

Setting & Participants

18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation.

Analytical Approach

Semistructured interviews were conducted. Interview transcripts were thematically analyzed.

Results

The 18 participants were aged 20 to 78 years; 13 (72%) were female, and 13 (72%) were the spouse/partner of the patient. We identified 5 themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation); financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy); ongoing psychological trauma (concern for neglect and stress on children, long-term emotional distress); overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems); and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime).

Limitations

The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings.

Conclusions

Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed.

Plain-Language Summary

This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure.

中文翻译：

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澳大利亚农村护理人员在支持肾衰竭患者接受透析和肾脏移植方面的经验：一项定性研究

理由和目标

来自农村社区的慢性肾病患者的护理人员在获得透析和移植方面发挥着至关重要的作用，但他们面临许多挑战，包括地理距离、经济困难和支持有限。本研究旨在通过描述澳大利亚农村社区肾衰竭患者的护理人员在获得肾脏替代疗法方面的经验，为克服这些挑战的策略提供信息。

学习规划

定性研究。

设置和参与者

澳大利亚农村肾衰竭患者的 18 名成年护理人员接受透析或肾移植治疗。

分析方法

进行了半结构化访谈。访谈记录按主题进行了分析。

结果

18 名参与者年龄在 20 至 78 岁之间；13 名 (72%) 为女性，13 名 (72%) 为患者的配偶/伴侣。我们确定了 5 个主题：破坏性的社会隔离（艰难的分离期、被同龄人排斥、被迫搬迁）；财务依赖和牺牲（不断增加的自付费用、工作生活中断、放弃自主权）；持续的心理创伤（对儿童的忽视和压力的关注，长期的情绪困扰）；被多方面的角色和期望所淹没（患者宣传、驾驭多个卫生系统的不确定性）；和持续的责任负担（丧失自我认同、持续的旅行需求、缺乏社会心理支持、对治疗制度没有准备）。

限制

该研究是在一个拥有全民健康保险的高收入英语国家进行的，这可能会限制研究结果的可移植性。

结论

接受维持性透析或移植治疗的肾衰竭患者的澳大利亚农村护理人员经历着令人筋疲力尽的身体、经济和心理负担。需要制定应对这些深刻挑战的战略。

通俗易懂的摘要

这项基于访谈的研究揭示了照顾接受透析或肾移植的农村城镇患者的人和家庭成员所面临的挑战。报告的障碍和困难包括长途旅行、需要搬到更大的城镇和离开家园、担心对孩子的长期影响、身体疲惫和财务问题。需要做出更多努力来确定农村城镇的护理人员及其家人可以获得支持以护理肾衰竭患者的方式。