Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal.
Chicago Center for Family Health, Chicago, IL, USA.
Palliat Support Care. 2024 Jun;22(3):499-510. doi: 10.1017/S1478951523001864.
Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.
An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.
Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.
This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.
医学和科学的进步使越来越多的人能够在患有慢性疾病(即癌症)的情况下长寿。然而,姑息治疗(PC)方法在患者及其家庭应对此类疾病时仍继续被引入和采用。因此,在我们的社会中,需要越来越多的人来照顾这一人群,由此产生了所谓的“非正式照顾者”。本研究旨在根据在这些环境中工作的卫生专业人员的看法和记录,检查照顾接受 PC 的癌症患者的非正式照顾者所面临的主要障碍。为了实现这一目标,分析了 2 家葡萄牙姑息治疗机构的书面档案。
进行了归纳主题分析,重点是卫生专业人员和家庭照顾者之间的接触,并基于卫生专业人员的记录。
确定了三个主要的总体主题:(1)负担,(2)疾病对家庭的影响,以及(3)网络脆弱性。其中包括强调家庭和社会支持的作用、这一时期存在的高心理发病率和照顾者负担,以及对疾病信息的强烈需求。
这项研究使人们更广泛地了解了家庭照顾者的日常挣扎,特别是那些在“角色”之间周旋的照顾者。了解照顾者在亲人临终阶段所经历的障碍范围至关重要,因为满足家庭的需求非常重要。未来的研究和从业者在为这一人群考虑新方法时,应该考虑到这些观察结果和主题,因为这些方法应该非常集中,并且时间很短,以满足人们的需求。