School of Nursing and Midwifery, Queen's University Belfast, Belfast, United Kingdom.
Regional Nephrology Unit, Belfast City Hospital, Belfast Health & Social Care Trust, Belfast, United Kingdom.
PLoS One. 2022 Nov 3;17(11):e0277241. doi: 10.1371/journal.pone.0277241. eCollection 2022.
Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.
肾性恶病质是终末期肾病（ESRD）患者以患者为中心护理中需要重点考虑的问题。然而，由于与肾性恶病质相关的临床指南基本缺失，这是一种未满足的护理需求。为了为指南和未来的肾脏服务计划提供信息，迫切需要了解个体对肾性恶病质的体验以及他们生活中护理者的相关体验。在此，我们报告了一项解释性现象学研究的方案，该研究将探讨这种生活体验。采用目的抽样策略，将在英国两个医疗信托机构的两个肾病学主任部门中招募患有 ESRD 且患有恶病质的个体及其护理者。根据饱和度，最多将招募 30 名参与者（每组 15 名）。正在接受血液透析的患有肾性恶病质的个体将通过临床守门员招募，随后将邀请他们的护理者参加研究。将为参与者提供面对面、虚拟或电话访谈的机会。访谈将被录音、逐字记录，并使用解释性现象学分析进行分析。将使用 NVivo 进行数据管理。这项研究的伦理批准已获得北爱尔兰研究伦理委员会办公室（REC 参考：22/NI/0107）的批准。科学证据往往侧重于可衡量的心理、社会和生活质量结果，但很少有研究深入了解患有肾脏疾病且正在经历肾性恶病质的个体的观点。迫切需要这些信息，以便更好地为医疗保健提供者做好准备，进而支持 ESRD 患者及其护理者。这项研究将帮助医疗保健提供者了解 ESRD 个体及其护理者在面对恶病质时面临的挑战，并旨在为未来的临床实践指南提供信息，并开发出能够识别和响应这一人群需求的支持性干预措施。
