澳大利亚农村社区患者对透析和肾移植可及性的看法。
Patients' Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia.
作者信息
Scholes-Robertson Nicole, Gutman Talia, Howell Martin, Craig Jonathan C, Chalmers Rachel, Tong Allison
机构信息
Sydney School of Public Health, The University of Sydney, Sydney, Australia.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia.
出版信息
Kidney Int Rep. 2021 Nov 23;7(3):591-600. doi: 10.1016/j.ekir.2021.11.010. eCollection 2022 Mar.
INTRODUCTION
This study aimed to describe the perspectives of patients from rural communities on access to all forms of kidney replacement therapy to inform strategies to address such inequity.
METHODS
Semistructured interviews were conducted. Transcripts were thematically analyzed.
RESULTS
There were 28 participants, of whom, 14 (50%) were female and 5 (17%) Aboriginal or Torres Strait Islander. The mean distance to a nephrologist was 107 km, and transplant center was 447 km. We identified the following 5 themes: encumbered by transportation hardship (burdening of family and friends, frustration at lack of transportation options, heightened vulnerability to road trauma, unrelenting financial strain); deprived of treatment and care (isolated from centralized services, unresolved psychological distress, vulnerable without care, disadvantaged by limited options); confused by multiple information sources (despair at fragmented care, fear of unfamiliar health settings and treatments); compounding economic consequences (depletion of income/leave, coping with unexpected expenses); and the looming threat of relocation (devastated by displacement, resigned to periods of separation, uncertainty in sourcing appropriate accommodation).
CONCLUSION
Patients with chronic kidney disease (CKD) in rural communities face profound economic, logistical, and psychological obstacles to accessing dialysis and transplant, leaving them feeling vulnerable and confused. To achieve equity of access and improved health outcomes for rural patients with CKD, barriers to dialysis, transplantation, and psychological services in this population require addressing through policy and alternate models of health service delivery, in consultation with rural communities and those families affected by CKD.
引言
本研究旨在描述农村社区患者对于获得各种形式肾脏替代治疗的看法,以为解决此类不平等问题的策略提供参考。
方法
进行了半结构化访谈。对访谈记录进行了主题分析。
结果
共有28名参与者,其中14名(50%)为女性,5名(17%)为原住民或托雷斯海峡岛民。到肾病专家处的平均距离为107公里,到移植中心的平均距离为447公里。我们确定了以下5个主题:受交通困难困扰(给家人和朋友带来负担、因缺乏交通选择而沮丧、更容易遭受道路创伤、持续的经济压力);被剥夺治疗和护理(与集中式服务隔绝、未解决的心理困扰、无人照顾时易受伤害、因选择有限而处于不利地位);被多个信息来源弄得困惑(对分散的护理感到绝望、害怕不熟悉的健康环境和治疗方法);经济后果加剧(收入/假期耗尽、应对意外开支);以及搬迁的潜在威胁(因流离失所而崩溃、无奈接受分离期、寻找合适住所存在不确定性)。
结论
农村社区的慢性肾脏病(CKD)患者在获得透析和移植方面面临巨大的经济、后勤和心理障碍,这让他们感到脆弱和困惑。为了实现农村CKD患者获得治疗的公平性并改善健康结果,需要通过政策以及与农村社区和受CKD影响的家庭协商后的替代医疗服务提供模式,来解决该人群在透析、移植和心理服务方面的障碍。