Delalibera Mayra, Barbosa António, Leal Isabel
Instituto Superior de Psicologia Aplicada, Lisboa, Portugal,
Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal.
Cien Saude Colet. 2018 Apr;23(4):1105-1117. doi: 10.1590/1413-81232018234.12902016.
Family caregivers play an important role in advanced disease patient care. The goal of this study was to characterize the family caregiver in palliative care, evaluating the circumstances and consequences of care and preparation for the loss of the loved one. This is a quantitative, prospective and longitudinal study. The sample consisted of 60 family caregivers, mostly women, married with an average age of 44.53 years. Most caregivers cohabit with the patient, and they spend the greater part of their day caring for the patient and a significant part quit their jobs or reduce working hours to be with the patient. The highest burden caregivers also showed higher levels of anxiety, depression, somatization and less social support. The most dysfunctional family caregivers reported little social support and those caregivers who were less prepared for the death of the patient showed more symptoms of peritraumatic dissociative experience. Most caregivers were aware of the severity of the illness of their family member and the proximity of death, and considered that the patient was very well taken care of in the palliative care service.
家庭照顾者在晚期疾病患者护理中发挥着重要作用。本研究的目的是描述姑息治疗中的家庭照顾者，评估护理的情况、后果以及对亲人离世的准备情况。这是一项定量、前瞻性的纵向研究。样本包括60名家庭照顾者，大多数为女性，已婚，平均年龄44.53岁。大多数照顾者与患者同住，他们一天中的大部分时间都在照顾患者，相当一部分人辞去工作或减少工作时间以陪伴患者。负担最重的照顾者也表现出更高水平的焦虑、抑郁、躯体化症状，且社会支持较少。功能最失调的家庭照顾者报告的社会支持很少，而那些对患者死亡准备不足的照顾者表现出更多创伤周围解离体验的症状。大多数照顾者意识到其家庭成员疾病的严重性和死亡的临近，并认为患者在姑息治疗服务中得到了很好的照顾。
