Caetano Paula, Querido Ana, Laranjeira Carlos
School of Health Sciences, Polytechnic University of Leiria, Morro do Lena, Campus 2, Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal.
Centro de Saúde de Ourém, Unidade Local de Saúde da Região de Leiria, Rua Dr. Armando Henrique dos Reis Vieira, 2490-546 Ourém, Portugal.
Healthcare (Basel). 2024 Sep 25;12(19):1915. doi: 10.3390/healthcare12191915.
Given the increasing occurrence of long-term illnesses, it is imperative to focus on adequately preparing and assisting those who assume the responsibility of caregiving. Our study aims to explore whether caregivers feel prepared to provide informal palliative home care, their experiences, and the usefulness of telehealth in managing daily activities. Using a descriptive qualitative research design and a purposeful sampling technique, thirteen primary family caregivers who provide informal palliative home care were recruited. Data collection was conducted through face-to-face individual interviews conducted from May 2023 to July 2023. Data were analyzed using Braun and Clarke's reflexive thematic analysis. Caregivers were mainly female (n = 8) with a mean age of 59.5 years (SD = 9.42). Based on our findings, three overarching themes emerged: (1) becoming a caregiver, (2) support-from-home palliative care team, and (3) telehealth in palliative home care. The reasons that influence the preparedness of family caregivers include their own desires, health conditions, their range of responsibilities, and the consequences that arise from the situation's complexity. Telehealth helps fulfill the patient's wishes to be at home in EoL and provides caregivers with access to professional guidance and support. Specialized home-based palliative care teams must be aware of caregivers' self-assurance, knowledge, skills, and aptitudes in carrying out daily responsibilities and in managing emotions to improve preparedness for caregiving, loss, and its aftermath. The provision of professional PC services in the home along with a robust support system for informal caregivers is invaluable.
鉴于长期疾病的发生率不断上升,当务之急是专注于充分准备并协助那些承担护理责任的人。我们的研究旨在探讨护理人员是否觉得自己有能力提供非正式的姑息家庭护理、他们的经历以及远程医疗在管理日常活动中的作用。采用描述性定性研究设计和目的抽样技术,招募了13名提供非正式姑息家庭护理的主要家庭护理人员。数据收集于2023年5月至2023年7月通过面对面的个人访谈进行。使用布劳恩和克拉克的反思性主题分析法对数据进行分析。护理人员主要为女性(n = 8),平均年龄59.5岁(标准差 = 9.42)。根据我们的研究结果,出现了三个总体主题:(1)成为护理人员,(2)家庭姑息治疗团队的支持,(3)姑息家庭护理中的远程医疗。影响家庭护理人员准备情况的因素包括他们自己的愿望、健康状况、责任范围以及情况复杂性所带来的后果。远程医疗有助于实现患者在生命末期在家的愿望,并为护理人员提供获得专业指导和支持的途径。专门的居家姑息治疗团队必须了解护理人员在履行日常职责和管理情绪方面的自信、知识、技能和能力,以提高对护理、失去亲人及其后果的准备程度。在家中提供专业的姑息治疗服务以及为非正式护理人员提供强大的支持系统是非常宝贵的。