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Palliative Care Interventions from a Social Work Perspective and the Challenges Faced by Patients and Caregivers
Prajakta Dhavale1, Akhila Koparkar1, Prakash Fernandes2
1Department of Social Work, Cipla Palliative Care and Training Centre, Warje, Pune, Maharastra, India.
Aim:
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.
Methods:
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.
Results:
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.
Conclusion:
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.
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