TY - JOUR
T1 - Experiences and perspectives by family caregivers on a palliative care journey
T2 - A case report from India
AU - Jacob, Soumya Liz
AU - Nayak, Malathi G.
AU - George, Linu Sara
AU - Macaden, Leah
AU - Braggs, Prathibha Lydia
N1 - Publisher Copyright:
© The Author(s) 2025. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
PY - 2025/1/1
Y1 - 2025/1/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/105013360692
UR - https://www.scopus.com/pages/publications/105013360692#tab=citedBy
U2 - 10.1177/26323524251355286
DO - 10.1177/26323524251355286
M3 - Article
AN - SCOPUS:105013360692
SN - 2632-3524
VL - 19
JO - Palliative Care and Social Practice
JF - Palliative Care and Social Practice
M1 - 26323524251355286
ER -
