Dhavale Prajakta, Koparkar Akhila, Fernandes Prakash
Department of Social Work, Cipla Palliative Care and Training Centre, Warje, Pune, Maharastra, India.
Department of Palliative Care Partnerships, Cipla Foundation, Mumbai, Maharastra, India.
Indian J Palliat Care. 2020 Jun;26(Suppl 1):S58-S62. doi: 10.4103/IJPC.IJPC_149_20. Epub 2020 Jun 30.
The aim of this article is to describe the range of challenges faced by both patients and caregivers during the lockdown due to the COVID-19 pandemic. It also seeks to describe the nature of interventions provided by the social work team to address these challenges. In addition, it aims to highlight the lessons that can be learnt in supporting families on palliative care in such unique disaster situations.
This exploratory study uses a qualitative approach and analyses the perceptions of patients, their caregivers, and the staff in providing care. Out of 30 patients worked with during the lockdown period, a total of nine families were selected that had received services during this time. The challenges faced and the interventions provided were analyzed using Framework analysis. We then used this framework to develop the themes that have been presented in the article.
The analysis indicates that the range of challenges faced by patients included physical distress due lack of availability of medicines and nursing care; emotional distress due to the interruption of cancer treatment; financial and social distress about loss of incomes, isolation; and spiritual distress due to the uncertainty of last rites as well as fulfilment of last wishes. The concerns outlined by caregivers included: living with guilt due to the inability to ease their relative's distress; the stress of constant care giving; lack of information about available services and confidence to ask for help from others as well as the dealing with the grief of a dying relative. These families were supported through telephone calls and home visits for critical patients with the social work team providing active listening, reassurance, empathy, and networking to assist patients and families at this time.
Palliative care is an essential component, especially in a disaster-related situation such as the COVID pandemic as patients and caregivers are left more vulnerable at this time. Telephonic and video calls play an important role in supporting patients and caregivers and in the most critical cases. However, it is also important to find the ways to provide direct home-based support to patients and families at this time so that they feel less alone, cope better, and experience meaningful support to build their resilience.
本文旨在描述在因新冠疫情而实施封锁期间患者和护理人员所面临的一系列挑战。它还试图描述社会工作团队为应对这些挑战而提供的干预措施的性质。此外,其目的是强调在这种独特的灾难情况下为姑息治疗家庭提供支持时可吸取的经验教训。
这项探索性研究采用定性方法,分析患者、其护理人员以及提供护理的工作人员的看法。在封锁期间与之合作的30名患者中,总共挑选了在此期间接受过服务的9个家庭。使用框架分析法分析所面临的挑战和提供的干预措施。然后我们利用这个框架来形成本文所呈现的主题。
分析表明,患者面临的挑战包括:因药品和护理服务难以获得而导致的身体痛苦;癌症治疗中断引起的情绪困扰;因收入损失、隔离而产生的经济和社会困扰;以及因临终仪式的不确定性和遗愿的实现而产生的精神困扰。护理人员所表达的担忧包括:因无法减轻亲人的痛苦而感到内疚;持续护理的压力;缺乏关于可用服务的信息以及向他人求助的信心,以及应对亲人临终时的悲痛。社会工作团队通过电话和家访来支持这些家庭,为重症患者提供积极倾听、安慰、同理心和建立联系,以在此时协助患者和家庭。
姑息治疗是一个重要组成部分,尤其是在像新冠疫情这样与灾难相关的情况下,因为此时患者和护理人员更加脆弱。电话和视频通话在支持患者和护理人员方面发挥着重要作用,在最危急的情况下也是如此。然而,此时找到为患者和家庭提供直接居家支持的方法也很重要,这样他们会感觉不那么孤单,能更好地应对,并体验到有意义的支持以增强他们的复原力。