Experiences and perspectives by family caregivers on a palliative care journey: A case report from India
Palliative care plays a vital role in supporting individuals with terminal illnesses, yet its integration and acceptance in Indian society confront significant challenges. This is despite the fact that 5.4 million people in India require palliative care annually, and <2% receive the same. Underst...
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2025-07-01
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| Series: | Palliative Care and Social Practice |
| Online Access: | https://doi.org/10.1177/26323524251355286 |
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| author | Soumya Liz Jacob Malathi G. Nayak Linu Sara George Leah Macaden Prathibha Lydia Braggs |
| author_facet | Soumya Liz Jacob Malathi G. Nayak Linu Sara George Leah Macaden Prathibha Lydia Braggs |
| author_sort | Soumya Liz Jacob |
| collection | DOAJ |
| description | Palliative care plays a vital role in supporting individuals with terminal illnesses, yet its integration and acceptance in Indian society confront significant challenges. This is despite the fact that 5.4 million people in India require palliative care annually, and <2% receive the same. Understanding the palliative care journey from the caregivers’ perspective is particularly important in the Indian context, as caregivers play a central role from diagnosis to end-of-life care and beyond. This study explores the impact of caregiving on family members of terminally ill patients in India, examining the physical, emotional, psychological, and social challenges they encounter. It unfolds the coping mechanisms and the resilience they develop throughout their caregiving journey while providing insight into their experiences, perceptions, and the complexities of their decision to choose palliative care. The study utilizes a focused ethnographic approach, collecting data from the caregivers of an older gentleman who was diagnosed with terminal alveolar cancer and metastasis along with multimorbidity through three unstructured interviews at different periods of the illness trajectory, coupled with participant observation and field notes. While highlighting caregivers' various stressors, the findings indicate that access to palliative care led to benefits such as alleviating physical burden, professional support, social inclusion, and preparation for loss. However, societal reluctance and stigma toward palliative care were evident, with family caregivers feeling inadequate or a sense of failing their duties by placing their loved one in a palliative care center. Destigmatizing palliative care can foster a more supportive and understanding environment for patients and caregivers. These findings offer insights into the complexities of the caregiving process and can potentially inform future broader investigations in the region. |
| format | Article |
| id | doaj-art-285cae280897483d84afd36fed87bcd2 |
| institution | Kabale University |
| issn | 2632-3524 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Palliative Care and Social Practice |
| spelling | doaj-art-285cae280897483d84afd36fed87bcd22025-08-20T03:58:40ZengSAGE PublishingPalliative Care and Social Practice2632-35242025-07-011910.1177/26323524251355286Experiences and perspectives by family caregivers on a palliative care journey: A case report from IndiaSoumya Liz Jacob0Malathi G. Nayak1Linu Sara George2Leah Macaden3Prathibha Lydia Braggs4Department of Community Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, IndiaDepartment of Community Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, IndiaDepartment of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, IndiaNursing Studies, School of Health in Social Science, The University of Edinburgh, UKDepartment of Mental Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, IndiaPalliative care plays a vital role in supporting individuals with terminal illnesses, yet its integration and acceptance in Indian society confront significant challenges. This is despite the fact that 5.4 million people in India require palliative care annually, and <2% receive the same. Understanding the palliative care journey from the caregivers’ perspective is particularly important in the Indian context, as caregivers play a central role from diagnosis to end-of-life care and beyond. This study explores the impact of caregiving on family members of terminally ill patients in India, examining the physical, emotional, psychological, and social challenges they encounter. It unfolds the coping mechanisms and the resilience they develop throughout their caregiving journey while providing insight into their experiences, perceptions, and the complexities of their decision to choose palliative care. The study utilizes a focused ethnographic approach, collecting data from the caregivers of an older gentleman who was diagnosed with terminal alveolar cancer and metastasis along with multimorbidity through three unstructured interviews at different periods of the illness trajectory, coupled with participant observation and field notes. While highlighting caregivers' various stressors, the findings indicate that access to palliative care led to benefits such as alleviating physical burden, professional support, social inclusion, and preparation for loss. However, societal reluctance and stigma toward palliative care were evident, with family caregivers feeling inadequate or a sense of failing their duties by placing their loved one in a palliative care center. Destigmatizing palliative care can foster a more supportive and understanding environment for patients and caregivers. These findings offer insights into the complexities of the caregiving process and can potentially inform future broader investigations in the region.https://doi.org/10.1177/26323524251355286 |
| spellingShingle | Soumya Liz Jacob Malathi G. Nayak Linu Sara George Leah Macaden Prathibha Lydia Braggs Experiences and perspectives by family caregivers on a palliative care journey: A case report from India Palliative Care and Social Practice |
| title | Experiences and perspectives by family caregivers on a palliative care journey: A case report from India |
| title_full | Experiences and perspectives by family caregivers on a palliative care journey: A case report from India |
| title_fullStr | Experiences and perspectives by family caregivers on a palliative care journey: A case report from India |
| title_full_unstemmed | Experiences and perspectives by family caregivers on a palliative care journey: A case report from India |
| title_short | Experiences and perspectives by family caregivers on a palliative care journey: A case report from India |
| title_sort | experiences and perspectives by family caregivers on a palliative care journey a case report from india |
| url | https://doi.org/10.1177/26323524251355286 |
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