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

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

Chinese forms the largest population and has the highest incidence rates of cancer in Singapore. Palliative care is required to provide care for this group of people especially those who are approaching the end-of-life and family is their first line of support. Most Chinese family caregivers in Singapore reported greater unmet needs in the provision of cancer care. Studies found that family caregivers often shoulder the care burden. However, no research has been done to understand the needs and perceptions of Chinese Singaporean family caregivers caring for a dying person with cancer at home. Therefore, this study aims to fill this research gap by examining the lived experience of Chinese Singaporean family caregivers providing end-of-life cancer care at home.

This study utilised a hermeneutic phenomenological approach, guided by the work of van Manen (1990) to identify the essential meaning of each participant’s lived experience. In-depth, semi-structured virtual interviews were carried out face-to-face with ten Chinese Singaporean family caregivers who shared their personal journey of caring for a loved one living with advanced cancer during their last phase of life at home. The interviews were audio-recorded, and the questions posed during the interview were open-ended. Each interview took approximately 30 minutes to an hour to complete. All audio-recorded interviews were self-transcribed manually by the researcher. The verbatim transcripts were subsequently crosschecked by an external transcriber who independently translated the oral interviews into written form to verify the authenticity of the textual data. The interview texts were then analysed and interpreted using the philosophical underpinnings rooted in phenomenology.
The attempts to identify meanings and make sense of the Chinese Singaporean’ 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’.

The results of this study have several important implications for practice, policy, and future research to support the Chinese family caregivers to ease their burden of caring.

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