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1.
Indian J Palliat Care ; 26(Suppl 1): S58-S62, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33088090

RESUMO

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.

2.
Indian J Palliat Care ; 26(Suppl 1): S63-S69, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33088091

RESUMO

BACKGROUND: With the COVID-19 pandemic wreaking havoc globally, the extremely vulnerable subset of cancer palliative care patients has to go through the worst nightmare. Difficulty in accessing medical care in the event of increased symptom burden, obstacles in reaching hospitals at time of emergencies or end of life, limited access to medication, social distancing causing isolation, leading to psychosocial burden, lack of bereavement support, are few of the issues we identified. Palliative home care is an important tool to allay the anxieties and address the fears of cancer patients and caregivers, by ensuring continuity of care and providing the much needed handholding in these difficult times. This article aims to highlight the home-based care strategy and experience of the Cipla Palliative Care and Training Center during the COVID-19 lockdown. MATERIALS AND METHODS: We have utilized the data of documentation of the process of designing the protocol, the data entered by the team on unique data management software that is used at the palliative care center to record all palliative care interventions and reflections of the team on their experience of home visits during this period. RESULTS: Continuity of care through home visits will ensure better management of patients in terms of physical symptoms, psychosocial support, allaying fears, and anxieties, as well as the ultimate goal of an improved quality of life. Physical symptoms (24%), morphine drop off (19%), psychosocial support (15%), end of life care (33%), and procedures (9%) were the major indications of visits. CONCLUSION: The COVID-19 pandemic has increased the need for support, thus reiterating the importance of continuity of care. With abundant precautions and protocols in place, home care through visits is possible. With the lockdown and restrictions now entering their fourth phase, we need to be ready now more than ever to adapt to changing times and evolving definitions of the "New Normal."

3.
Indian J Palliat Care ; 26(Suppl 1): S17-S20, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33088080

RESUMO

INTRODUCTION: The COVID 19 pandemic has created difficulties for children registered under Children's Palliative Care in Mumbai. 2 hospitals who have started Services last year would like to share their experiences on difficulties faced by Children and their families and unique ways in which solutions were found to help them surmount all odds. RESULTS: Some difficulties faced included transport to visit hospitals for doctor's care and essential medications; for those in native place, unavailability of doctors and medications. Difficulty to return home for those from out of Mumbai and vice versa. Unavailability of rations for those who were not original Mumbai residents. CONCLUSIONS: Unique solutions were found for each family. These are presented in this paper.

4.
Wellcome Open Res ; 4: 54, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31489380

RESUMO

Background: We describe the development of a theory of change for community mobilisation activities to prevent violence against women and girls. These activities are part of a broader program in urban India that works toward primary, secondary, and tertiary prevention of violence and includes crisis response and counselling and medical, police, and legal assistance. Methods: The theory of change was developed in five phases, via expert workshops, use of primary data, recurrent team meetings, adjustment at further meetings and workshops, and a review of published theories. Results: The theory summarises inputs for primary and secondary prevention, consequent changes (positive and negative), and outcomes. It is fully adapted to the program context, was designed through an extended consultative process, emphasises secondary prevention as a pathway to primary prevention, and integrates community activism with referral and counselling interventions. Conclusions: The theory specifies testable causal pathways to impact and will be evaluated in a controlled trial.

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