Background/Objectives: The quality of life is a complex concept that is insufficiently assessed in clinical practice. It is influenced by different factors, as follows: the individual’s characteristics, personal values and beliefs, physical and mental state, and relationship to other members of their community. The quality of life of the primary caregiver influences their health and the quality of their care interventions. This study aims to investigate how the quality of life of caregivers changes during palliative patients’ care. Methods: This is a prospective longitudinal study that assesses the different aspects of the quality of life of primary caregivers who care for patients with palliative needs. The tool used in this study was the Medical Outcomes Scale-Short Form 36 (MOS-SF36). Results: This study included 140 caregivers, of which 63 were involved in the care of patients with cancer and 77 were involved in the care of patients with non-oncological diseases. Almost 9 out of 10 caregivers were a family member of the patient and over two-thirds of these were women. The caregivers of patients with non-malignant diseases had a decreased quality of life in the following aspects: limitations in their usual role due to emotional problems, social functioning, energy, and their perception of their general health. In the group of oncological patients, the caregivers displayed limitations in their daily role due to physical health, emotional problems, and social functioning. Conclusions: The large number of responsibilities, the long time spent caring, and the uncertainty about the evolution of the disease as well as the marginalization and lack of time for oneself are some of the elements that increase caregiver burden. Along with this, the quality of life of caregivers decreases significantly in different aspects, such as physical, psycho-emotional, and social, with the perception of deteriorating general health.
背景/目的：生活质量是一个复杂概念，在临床实践中尚未得到充分评估。其受多种因素影响，包括个体特征、个人价值观与信念、身心状态以及与社区其他成员的关系。主要照护者的生活质量直接影响其健康状况及照护干预的质量。本研究旨在探讨在姑息治疗患者照护过程中，照护者生活质量的变化情况。研究方法：本研究采用前瞻性纵向设计，评估承担姑息治疗需求患者照护任务的主要照护者生活质量的多个维度。研究工具采用医疗结局研究简表36项（MOS-SF36）。研究结果：本研究共纳入140名照护者，其中63名照护癌症患者，77名照护非肿瘤疾病患者。近九成照护者为患者家属，其中超过三分之二为女性。非恶性疾病患者的照护者在以下维度呈现生活质量下降：因情绪问题导致的日常角色受限、社会功能、精力水平及总体健康自评。在肿瘤患者组中，照护者表现出因身体健康问题、情绪问题及社会功能导致的日常角色受限。结论：繁重的责任负担、长期的照护时间、疾病进展的不确定性，以及自我边缘化与个人时间缺失，是加重照护者负担的重要因素。与此同时，照护者的生活质量在生理、心理情感及社会功能等多维度显著下降，并伴随总体健康状况恶化的主观感受。
肿瘤(癌症)患者之家