Determinants of Caregiver Burden Among Spouses of Patients With Kidney Failure: A Qualitative Study.

IF 9.4 1区 医学 Q1 UROLOGY & NEPHROLOGY American Journal of Kidney Diseases Pub Date : 2025-01-07 DOI:10.1053/j.ajkd.2024.11.005
Esmee Driehuis, Imre Demirhan, Wanda S Konijn, Theodôr J F M Vogels, Namiko A Goto, Marjolein I Broese van Groenou, Marianne C Verhaar, Brigit C van Jaarsveld, Alferso C Abrahams
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Abstract

Rationale & objective: Spousal caregivers participate extensively in the care of patients with kidney failure. Although previous studies suggested that these caregivers experience a high burden, a comprehensive understanding of the determinants of this burden and strategies to alleviate it are needed. Therefore, this study sought to explore the contributing and alleviating determinants of burden in spousal caregivers of patients with kidney failure.

Study design: A qualitative interview study with 15 spousal caregivers.

Setting & participants: Dutch-speaking, adult spousal caregivers were recruited and interviewed by the Dutch Kidney Patients Association for the Kidney Decision Aid.

Analytical approach: A directed qualitative content analysis using the stress-appraisal model of caregiver burden as a framework to inform a disease-specific model on spousal caregiver burden for kidney failure that characterizes the impact of care provision on all aspects of spousal caregivers' lives, the burden associated with it, and possible mitigating factors.

Results: Providing care for patients with kidney failure is complex and burdensome for spousal caregivers and results in many lifestyle changes, which is largely caused by kidney failure-specific tasks and the shifting responsibility for daily life tasks. Spouses identified disease-specific determinants of burden including the impact of kidney disease on afflicted spouses as well as the associated caregiver tasks, e.g., adjusting to dietary restriction and attending dialysis appointments. Dialysis options (e.g., the choice for home or in-center dialysis) were kidney failure-specific moderators of burden. Support of spousal caregivers by healthcare providers plays a key role in preventing overburdening.

Limitations: Potential limited transferability owing to the study of only Dutch-speaking spouses willing to be interviewed and videotaped.

Conclusions: This comprehensive overview of the contributing and alleviating determinants of burden experienced by spousal caregivers of patients with kidney failure highlights four principal areas; 1) personal and relational, 2) social environment, 3) healthcare, and 4) work and legislation, in which such burdens occur and may be alleviated.

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肾衰竭患者配偶照顾者负担的决定因素:一项定性研究。
理由与目的:配偶照顾者广泛参与肾功能衰竭患者的护理。虽然以前的研究表明,这些照顾者经历了很高的负担,全面了解这种负担的决定因素和策略,以减轻它是必要的。因此,本研究旨在探讨肾衰竭患者配偶照顾者负担的影响因素。研究设计:对15名配偶照顾者进行定性访谈研究。环境和参与者:荷兰肾脏患者协会招募了讲荷兰语的成年配偶照顾者,并对他们进行了采访。分析方法:使用照顾者负担的压力评估模型作为框架进行直接定性内容分析,以告知配偶照顾者肾衰竭负担的疾病特定模型,该模型表征了照顾提供对配偶照顾者生活的各个方面的影响,与之相关的负担,以及可能的减轻因素。结果:对配偶照顾者来说,照顾肾衰竭患者是一项复杂而繁重的工作,并导致许多生活方式的改变,这在很大程度上是由肾衰竭特异性任务和日常生活任务的责任转移引起的。配偶确定了负担的特定疾病决定因素,包括肾病对患病配偶的影响以及相关的照顾者任务,例如适应饮食限制和参加透析预约。透析选择(例如,家庭或中心透析的选择)是肾衰竭特有的负担调节因子。医疗保健提供者对配偶照顾者的支持在防止负担过重方面起着关键作用。局限性:由于研究对象只有说荷兰语的配偶愿意接受采访和录像,因此可转移性可能有限。结论:这项对肾衰竭患者配偶照顾者所经历的负担的贡献和减轻决定因素的全面概述突出了四个主要领域;1)个人和关系,2)社会环境,3)医疗保健,以及4)工作和立法,这些负担在其中发生并可能得到减轻。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
American Journal of Kidney Diseases
American Journal of Kidney Diseases 医学-泌尿学与肾脏学
CiteScore
20.40
自引率
2.30%
发文量
732
审稿时长
3-8 weeks
期刊介绍: The American Journal of Kidney Diseases (AJKD), the National Kidney Foundation's official journal, is globally recognized for its leadership in clinical nephrology content. Monthly, AJKD publishes original investigations on kidney diseases, hypertension, dialysis therapies, and kidney transplantation. Rigorous peer-review, statistical scrutiny, and a structured format characterize the publication process. Each issue includes case reports unveiling new diseases and potential therapeutic strategies.
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