"You're listening but you're not hearing": qualitative exploration of parents' lived experience of paediatric sepsis.

Background: Sepsis is a life-threatening condition of significant mortality and morbidity burden in children. There is limited evidence exploring the lived experiences of parents whose children have survived or died from sepsis, nor their support needs, despite growing awareness of poor sepsis outcomes. Objective: This study aims to understand the lived experiences of parents of children affected by sepsis, both surviving and bereaved, and identify gaps in support services to inform future interventions. Methods: A phenomenological-hermeneutic design was used, with data collected through a focus group and individual interviews with 11 parents of children treated for paediatric sepsis in Queensland, Australia. Reflexive thematic analysis was used to analyse the data. Results: Four themes were generated that present an in-depth understanding of parents' lived experiences of having a child with sepsis and what their support needs are: 1. Conclusion: Parents of children affected by sepsis experience profound distress and isolation, compounded by a lack of awareness, inadequate communication, and limited specialised support services. They identified that urgent action is needed to develop paediatric sepsis-specific family support networks, enhance public and clinical education, and implement trauma-informed care to reduce the burden of sepsis on all families.