A qualitative study of lived experiences and needs of advanced cancer patients in Malaysia: Gaps and steps forward

Abstract

Abstract Purpose Due to the high burden of cancer-related suffering, it is paramount to understand the gaps in cancer care that lead to suffering. Advanced cancer patients have unmet needs and challenges that differ from those with early-stage cancer due to the rapid disease progression. By exploring advanced cancer patients' lived experiences and needs from the physical, psychological, social, and spiritual aspects, this study aims to identify gaps in the Malaysian health system and propose contextualised measures to improve cancer care. Methods Semi-structured, in-depth interviews were conducted to explore advanced cancer patients' lived experiences and needs from the physical, psychological, social, and spiritual aspects. The interviews were then transcribed and coded. Themes were developed from the codes using iterative thematic approach. Results The lived experiences and needs of nineteen patients converged into four major themes: disruption to daily lives, psychosocial and spiritual support system, information needs, and financial needs. This study described predominantly how cancer impacted patients’ lives and livelihood, how patients coped with their psychological conditions after diagnosis, the need for effective communication and trust in a multicultural society, and how finance affected access to and experience of cancer care. Conclusion Advanced cancer patients had different needs beyond receiving medical treatments. A concerted effort is required from clinicians, allied health professionals, social workers, support groups, and family members to understand and fulfil these needs.