Caregiving Amid Challenges: Bereaved Caregivers’ Experiences of End-of-Life Cancer Care in Marginalised Coastal Hamlets During the COVID-19 Pandemic

Objectives: To explore the lived experiences of bereaved informal caregivers who provided end-of-life care to patients with cancer in marginalised coastal hamlets of Pondicherry and Chennai during the COVID-19 pandemic. Materials and Methods: This qualitative study used a hermeneutic phenomenological approach guided by van Manen’s interpretive framework. Ten bereaved informal caregivers were purposively recruited for in-depth, voice-only interviews conducted in Tamil between July 2022 and April 2023. The caregivers had provided care to patients with cancer who died between April 2020 and December 2021. Recruitment ceased after the ninth and tenth interviews yielded no new themes, as determined by the research team. Data were analysed manually using an interpretive approach informed by van Manen’s framework. Results: Two overarching themes were identified: (1) barriers to supportive and end-of-life care, encompassing societal, institutional and personal factors; and (2) unmet needs across physical, psychological, spiritual, social and informational domains. Participants described financial hardship, fear of infection, interruptions in healthcare services, difficulties accessing information and medicines, disrupted cultural and religious practices, and restrictions on family presence at the end of life. These accounts informed the overarching interpretation of compounded abandonment arising from the interaction of pandemic-related disruptions and pre-existing structural disadvantages. Conclusion: Bereaved caregivers in the participating coastal communities described substantial challenges in providing end-of-life cancer care during the COVID-19 pandemic. The findings highlight the need to strengthen community-based palliative care, improve access to essential medicines and information, develop culturally responsive bereavement support, and maintain continuity of care during public health emergencies.