Sampaio Carlos, Renaud Isabel, Leão Paula Ponce
Universidade Católica Portuguesa. Porto, Portugal.
Universidade de Coimbra. Coimbra, Portugal.
Rev Bras Enferm. 2019 Jan-Feb;72(1):162-169. doi: 10.1590/0034-7167-2018-0645.
To explore the meaning of being a family caregiver for a relative with advanced heart failure (HF) in their own home, and to gain an understanding of how dignity is upheld in family caregiving contexts.
We used a phenomenological-hermeneutical method inspired by the Ricoeurian philosophy. Portuguese caregivers for relatives with advanced HF participated in two reflective interviews over a four-month period.
The ten family caregivers enrolled in this study included two daughters and eight spouses with a mean age of 70 years. We identified two main themes: (1) Struggle between inner force and sense of duty; (2) Struggle between feelings of burden and security.
People with HF have debilitating symptoms associated with psychological stress, which can burden both them and their family caregivers. Findings support that family caregivers require participation in the planning and execution of their relative's health care.
探讨在自己家中作为晚期心力衰竭（HF）亲属的家庭照顾者的意义，并了解在家庭照顾背景下如何维护尊严。
我们采用了受利科哲学启发的现象学-诠释学方法。晚期HF亲属的葡萄牙照顾者在四个月的时间里参加了两次反思性访谈。
本研究纳入的10名家庭照顾者包括2名女儿和8名配偶，平均年龄为70岁。我们确定了两个主要主题：（1）内心力量与责任感之间的挣扎；（2）负担感与安全感之间的挣扎。
HF患者有与心理压力相关的衰弱症状，这会给他们及其家庭照顾者带来负担。研究结果支持家庭照顾者需要参与其亲属医疗保健的规划和实施。
