Lived experience of parent-caregivers of children with medical complexity in Singapore: a qualitative study

Children with Medical Complexity (CMC) have conditions that ultimately lead to death despite curative efforts. In Singapore, while CMCs remain a small population, they are steadily growing—placing complex emotional, financial, and social demands on parent-caregivers. Despite evolving paediatric care systems, limited research explores their lived experiences, particularly within Asian contexts where caregiving practices, cultural norms, and family values may differ from Western settings. This study aims to understand the needs, concerns, and coping strategies of Singaporean parent-caregivers of CMCs to inform more effective support systems. We conducted a qualitative descriptive study aimed at characterizing the lived experiences of parent-caregivers of CMCs in Singapore. 17 families were purposefully selected to participate in semi-structured interviews exploring caregiving journeys, social support, personal reflections, and future concerns. Six key themes characterised the lived experiences of parent-caregivers of CMCs in Singapore: (1) Early days of Trauma, (2) Learning to care, (3) Support of social networks, (4) Navigating complex systems of care, (5) Challenges of Disability Inclusion in Singapore, and (6) Confronting the future. While certainly not a linear journey, these themes reframe parent-caregivers not simply as managers of their child’s medical needs, but as individuals who must continually negotiate intimate personal experiences and broader structural forces to provide the best possible care for their children. The themes also reveal uniquely Singaporean aspects of caregiving such as the involvement of migrant domestic workers (MDWs) in care work and manifestations of social stigma within structures like aid organisations. This study provides in-depth insights into the lived experiences of parent-caregivers caring for a CMC in Singapore. Multidimensional, individualized interventions across personal, relational, and structural domains are essential to improve outcomes for families of CMCs.