Central Clinical School (E.S.), University of Sydney, Sydney, Australia.
Department of Palliative Medicine (M.B., R.P.), Royal Prince Alfred Hospital, Sydney, Australia; Institute for Ethics and Society (M.B.), University of Notre Dame Australia, Sydney, Australia.
J Pain Symptom Manage. 2022 May;63(5):737-746. doi: 10.1016/j.jpainsymman.2021.12.024. Epub 2021 Dec 22.
Renal Supportive Care Services (RSCS) were introduced in Australia to provide patient-centred care with a focus on better symptom management and improved quality of life in end stage kidney disease (ESKD) patients managed with or without dialysis. While RSCS have demonstrated clinical benefits with reduced length of hospital stay and symptom burden, there is a gap in understanding the experience of patients referred to RSCS.
To identify patient attitudes, beliefs, and perspectives on the RSCS.
Qualitative interviews were conducted with 20 participants from both dialysis and conservative treatment pathways. Transcripts were then thematically analysed and primary themes identified, which were reviewed with a stakeholder group that included doctors, nurses and allied health staff to provide triangulation.
Patients perceived the RSCS as a provider of multidisciplinary, holistic and patient-centred care that, in addition, helped to ensure prognostic awareness and timely end-of-life care planning. This contributed to an overall sense of patient empowerment with healthcare decisions. This study identified three major themes: (1) Expectations of care; (2) Experience of care; and (3) Understanding patient needs.
The study found that RSCS support patient-centred and family-orientated initiatives in decision making and control over healthcare management. This is empowering for patients. Additional patient values, needs and wants from the RSCS were also identified and these could be addressed to improve the patient experience. Our findings support the ongoing use of RSCS to improve the experience of ESKD patients.
澳大利亚引入了肾脏支持性护理服务 (RSCS),旨在为终末期肾病 (ESKD) 患者提供以患者为中心的护理,重点是更好地管理症状和提高生活质量,无论患者是否接受透析治疗。RSCS 已证明具有临床益处,可缩短住院时间和减轻症状负担,但对于接受 RSCS 转介的患者的体验,仍存在理解上的差距。
确定患者对 RSCS 的态度、信念和观点。
对来自透析和保守治疗途径的 20 名参与者进行了定性访谈。然后对转录本进行主题分析,并确定主要主题,这些主题与包括医生、护士和专职医疗人员在内的利益相关者小组进行了审查,以提供三角验证。
患者认为 RSCS 是多学科、全面和以患者为中心的护理提供者,此外,它还有助于确保预后意识和及时进行临终关怀计划。这有助于患者对医疗保健决策产生整体的赋权感。本研究确定了三个主要主题:(1) 护理期望;(2) 护理体验;(3) 了解患者需求。
研究发现,RSCS 支持以患者为中心和以家庭为导向的决策制定和对医疗保健管理的控制举措。这对患者具有赋权作用。还确定了患者对 RSCS 的其他价值、需求和期望,这些需求和期望可以得到满足,以改善患者体验。我们的研究结果支持继续使用 RSCS 来改善 ESKD 患者的体验。