Living with loss

Abstract

PURPOSE: Cervical cancer is a leading cause of mortality in India. Although its economic burden is documented, the social impact on families across the caregiving journey remains underexplored. This study adopts a continuum-based perspective to understand the cascading social and emotional toll on caregivers in rural settings from diagnosis through long-term bereavement.

METHODS: We conducted a qualitative study in an underprivileged community in Tamil Nadu, India, using in-depth interviews with 16 purposively selected primary caregivers of women who died from cervical cancer. Data were analyzed using deductive thematic analysis to identify social impacts and unmet needs across the care trajectory.

RESULTS: Themes were categorized into three groups: (1) navigating the caregiving trajectory: diagnosis and treatment challenges; (2) compounding loss: the multifaceted impacts of mortality; and (3) unmet support needs across the care continuum. Participants reported treatment delays and financial depletion during the illness phase, which profoundly shaped the subsequent bereavement experience. After death, caregivers faced intense emotional distress, social stigma, and severe economic hardships, including asset liquidation and disrupted education for children. Caregivers emphasized a critical need for integrated emotional, financial, and childcare support extending from the initial diagnosis through the bereavement period. Caregivers endured substantial psychosocial strain that originated during treatment and persisted long after the patient's death.

CONCLUSION: Findings highlight the necessity for integrated, continuum-based strategies that support caregivers from the point of diagnosis through bereavement. Strengthening social support systems and initiating psychosocial interventions early in the care trajectory are essential for responsive, equitable policymaking in under-resourced settings.