Jacob Soumya Liz, Nayak Malathi G, George Linu Sara, Macaden Leah, Braggs Prathibha Lydia
Department of Community Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, India.
Department of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Karnataka, India.
Palliat Care Soc Pract. 2025 Jul 28;19:26323524251355286. doi: 10.1177/26323524251355286. eCollection 2025.
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.
姑息治疗在为绝症患者提供支持方面发挥着至关重要的作用，然而其在印度社会的整合与接受面临重大挑战。尽管印度每年有540万人需要姑息治疗，但接受姑息治疗的人数不到2%。在印度的背景下，从护理者的角度理解姑息治疗历程尤为重要，因为护理者在从诊断到临终关怀及之后的整个过程中都发挥着核心作用。本研究探讨了护理对印度绝症患者家庭成员的影响，考察了他们所面临的身体、情感、心理和社会挑战。研究揭示了他们在整个护理过程中所形成的应对机制和恢复力，同时深入了解了他们的经历、看法以及选择姑息治疗这一决定的复杂性。该研究采用了聚焦民族志方法，通过对一位被诊断患有晚期肺泡癌并伴有转移及多种合并症的老年男性患者的护理者在疾病轨迹的不同阶段进行三次非结构化访谈，同时结合参与观察和实地记录来收集数据。研究结果在突出护理者面临的各种压力源的同时，还表明获得姑息治疗带来了减轻身体负担、专业支持、社会包容以及为失去做准备等益处。然而，社会对姑息治疗的不情愿和污名化现象明显，家庭护理者因将亲人安置在姑息治疗中心而感到自己做得不够或有失职之感。消除对姑息治疗的污名化能够为患者和护理者营造一个更具支持性和理解性的环境。这些研究结果为护理过程的复杂性提供了见解，并有可能为该地区未来更广泛的调查提供参考。
