Department of Bioethics, Lithuanian University of Health Sciences, Kaunas, Lithuania.
Department of Health Management, Lithuanian University of Health Sciences, Kaunas, Lithuania.
PLoS One. 2022 May 12;17(5):e0265165. doi: 10.1371/journal.pone.0265165. eCollection 2022.
Family caregivers are a great resource for providing dignified end-of-life care for terminally ill patients. Framed from the perspective of role theory and the relational nature of providing and receiving care, study objectives were as follows: (1) to capture caregivers' understanding of the process of taking on the role of main caregiver, (2) to conceptualize their understanding of the functions that they assume while being the main caregivers, and (3) to understand how they experienced the consequences they confronted.
The research team employed the methodological strategy of descriptive thematic analysis using a semi-structured interview guide. The sample consisting of 33 family caregivers was recruited using purposeful and snowball sampling strategies in 2020. Interview data was analyzed using content-driven inductive thematic analysis.
The data analysis revealed four main themes that structure the process of becoming the main care giver of a terminally ill family member and the meaning of the caregiver role: (1) inaccessibility and mistrust of public care services for persons with terminal illness, (2) moral obligations and responsibilities of immediate family and friends, (3) cultural traditions, (4) the caregiver feels responsible for everything. The themes describe the social role of family caregiver in social context, address the process of taking on the role of caregiver and living with systemic corruption.
Recognition of caregiving experiences is essential in planning better systems, in direct practice and in confronting corruption. The study suggests the need for open communication, accessibility of quality services, and the recognition of caregivers as care-team members. The larger implication is that the increasing numbers of distressed caregivers and aging populations can be considered as public health populations, and thus addressable through public health methods.
家庭护理员是为绝症患者提供有尊严的临终关怀的重要资源。本研究从角色理论和提供与接受护理的关系性质的角度出发，旨在：（1）了解护理员对承担主要护理员角色的过程的理解，（2）概念化他们对承担主要护理员角色时所承担的功能的理解，以及（3）了解他们是如何体验所面临的后果的。
研究小组采用描述性主题分析的方法策略，使用半结构化访谈指南。研究小组于 2020 年使用目的性和滚雪球抽样策略，招募了 33 名家庭护理员组成样本。使用内容驱动的归纳主题分析方法对访谈数据进行分析。
数据分析揭示了四个主要主题，这些主题构建了成为绝症患者主要护理员的过程和护理员角色的意义：（1）对公共临终关怀服务的不可及性和不信任，（2）直系亲属和朋友的道德义务和责任，（3）文化传统，（4）护理员对一切负责。这些主题描述了家庭护理员在社会背景下的社会角色，涉及承担护理员角色和应对系统腐败的过程。
认识护理经验对于规划更好的系统、直接实践和应对腐败至关重要。该研究表明需要开放沟通、提供高质量服务的可及性，并承认护理员是护理团队的成员。更广泛的含义是，越来越多的痛苦护理员和老龄化人口可以被视为公共卫生人群，并通过公共卫生方法加以解决。
