Indian Journal of Palliative Care
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 ORIGINAL ARTICLE
Year : 2020  |  Volume : 26  |  Issue : 3  |  Page : 306--311

Experiences of caregivers in a home-based palliative care model – A qualitative study


1 Centre for Health and Mental Health, School of Social Work, Tata Institute of Social Sciences, Mumbai, Maharashtra, India
2 PALCARE - The Jimmy S Bilimoria Foundation, Mumbai, Maharashtra, India

Correspondence Address:
Aneka Paul
F-33, 1:1, Prem Sagar CHSL, Sector 29, Vashi, Navi Mumbai - 400 703, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/IJPC.IJPC_154_19

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Background: Family caregivers are of vital support to patients receiving home-based palliative care. Aims and Objectives: This study sought to identify and comprehend the challenges that caregivers face while taking care of a terminally ill patient in a home-based palliative care setting and the mechanisms that facilitated their coping. Materials and Methods: A qualitative approach was employed to understand the perceptions of primary caregivers through 3 focus group discussions and 4 in-depth interviews, across 3 socioeconomic categories and 3 geographic zones of Mumbai. Results: Caregivers expressed that they wished they had been introduced to palliative care earlier. Being trained on minor clinical procedures and managing symptoms, and receiving emotional support through counselling were found beneficial. Caregivers did not perceive the need for self-care as the period of active caregiving was often short. Bereavement counselling was felt to be of much help. Conclusion: The study helped understand the caregivers' perceptions about the factors that would help them in patient as well as self-care. Recommendations for designing interventions for future caregivers and recipients were also made.






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