Exploring the lived experience of Chinese family caregivers caring for end-of-life cancer patients at home: a phenomenological study in Singapore

Purpose: The Chinese community constitutes the largest demographic and faces the highest rates of cancer incidence in Singapore. Given this, palliative care plays a crucial role in supporting individuals, particularly those nearing the end of life, with family serving as their primary source of support. Many Chinese family caregivers in Singapore reported significant unmet needs in cancer care provision, with studies indicating that they often bear the brunt of caregiving responsibilities. Despite this, there has been a lack of research exploring the needs and perspectives of Chinese Singaporean family caregivers caring for terminally ill cancer patients at home. Thus, this study seeks to address this gap by investigating the lived experiences of Chinese Singaporean family caregivers providing end-of-life cancer care in a home setting.

Methods: This study employed a hermeneutic phenomenological approach, guided by the framework developed by van Manen (1990), to uncover the essential meaning of each participant's lived experience. In-depth, semi-structured virtual interviews were conducted face-to-face with ten Chinese Singaporean family caregivers. These caregivers shared their personal journeys of caring for a loved one with advanced cancer during their final stage of life at home. The interviews were audio recorded, and open-ended questions were used to facilitate discussion. Each interview lasted between 30 and 60 min. The principal investigator manually transcribed all audio recordings. Additionally, an external transcriber translated the interviews into written form to ensure accuracy and authenticity. The interview texts were then analyzed and interpreted using the philosophical underpinnings rooted in phenomenology.

Results: The attempts to identify meanings and make sense of the Chinese Singaporean's lived experience led to the development of two main themes and eight sub-themes. Under the primary theme of "experiences from caregiving" comprises the sub-themes "being a caregiver," "suffering," and "well-being," and the major theme of "expectations in caregiving" encompasses the sub-themes "caregiving support," "decision-making," "communication," "spirituality," and "being a Chinese Singaporean".

Conclusion: In conclusion, addressing family caregivers' needs requires culturally sensitive nursing education, peer support initiatives, public awareness campaigns, and enhanced training for domestic helpers. These measures, coupled with further research into diverse cultural caregiving needs and male caregivers' experiences, will improve support systems and empower caregivers in their essential roles.