Abstract / Summary
Background or context: Children and young adults with serious long-term conditions frequently have multidimensional palliative care needs before specialist palliative care referral. However, evidence from Asian populations regarding reported care outcomes and the care needs of children, young adults, and their families remains limited.
Objective: To compare patient- or proxy-reported outcomes across levels of professionally assessed palliative care needs and explore felt and unmet care needs from the perspectives of family caregivers and healthcare professionals.
Design: A convergent mixed-methods design.
Setting and participants: Participants included 88 caregiver-patient dyads from three medical centres in Taiwan. Patients were aged 1-25 years, had Paediatric Palliative Screening Scale (PaPaS) scores ≥ 15, and had not received specialist palliative care. Twelve family caregivers and 14 healthcare professionals were interviewed.
Main outcome measures: PaPaS Scale, the African Children's Palliative Care Outcome Scale (C-POS), and semi-structured interviews.
Results: Participants with PaPaS scores ≥ 20 had poorer outcomes for pain, crying, and playing than those scoring 15-19, and their caregivers had greater difficulty sharing their feelings (all p < 0.05; standardised mean differences, 0.35-0.55). Maternal employment status was associated with total C-POS scores (p = 0.005). Four themes described seeking evolving care guidance, integrating care into family routines, sharing enduring caregiving responsibilities, and balancing present living with future preparation. Integration showed that greater normative needs were accompanied by challenges in symptom recognition, everyday participation, and caregiver emotional communication. Although caregivers generally reported receiving adequate support, the qualitative findings indicated that support was most useful when translated into coordinated and practical care plans tailored to family routines and readiness.
Conclusion: Integrating professional assessments, reported outcomes, and caregiver and healthcare professional experiences identified complementary care needs. The findings support coordinated child- and family-centred care that addresses evolving symptoms, everyday routines, caregiver burden, emotional communication, and families' changing time orientations before referral to specialist palliative care.
Patient or public contribution: A parent expert reviewed study materials and recruitment strategies and contributed to interpretation of the findings.