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Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
Sainath Raman1,2,3, Alana English1,4, Meagan O'Keefe1,2
1Queensland Paediatric Sepsis Program, Brisbane, QLD, Australia.
Insights
Paediatric post sepsis syndrome (PPS) care needs improvement. The Queensland Paediatric Sepsis Program developed a novel, consumer-co-designed family support structure (FSS) to address PPS-related morbidities and unmet family needs.
Area of Science:
- Pediatric critical care
- Public health
- Family medicine
Background:
- Paediatric post sepsis syndrome (PPS) is a poorly defined condition leading to significant physical, neurocognitive, and psychosocial morbidity in children.
- Families of sepsis survivors frequently report unmet needs throughout the care continuum.
- Current global provision of post-sepsis care is limited, with insufficient evidence for effective clinical support pathways.
Purpose of the Study:
- To describe the development and structure of the Queensland Paediatric Sepsis Program (QPSP) Family Support Structure (FSS).
- To highlight the co-design and consumer-led delivery aspects of the FSS.
- To outline the FSS's role in improving care for childhood sepsis survivors and their families.
Main Methods:
- The QPSP FSS was developed in partnership with consumers, incorporating their guidance and experiences.
- The FSS offers online, multimodal education and peer support for families.
- A multidisciplinary team (MDT) collaborates with local clinicians to deliver FSS interventions.
Main Results:
- The FSS provides a registry for families to connect with the MDT at any stage of their sepsis journey.
- Consumer co-designed media and digital campaigns aim to improve public awareness of paediatric sepsis.
- The FSS integrates evaluation to guide its ongoing evolution and improvement.
Conclusions:
- The QPSP FSS represents a novel approach to managing paediatric post sepsis syndrome by co-designing and partly delivering interventions with consumers.
- The FSS addresses the full spectrum of morbidities affecting survivors and their families, not solely physical sequelae.
- Embedded evaluation will ensure the FSS evolves to meet consumer requirements and improve outcomes.
Abstract:
Introduction: Paediatric post sepsis syndrome is poorly defined and causes physical, neurocognitive, psychosocial morbidity, and family dysfunction. Families of sepsis survivors report unmet needs during care. Worldwide, the provision of post sepsis care is in its infancy with limited evidence to design clinical support pathways. Perspective: The Queensland Paediatric Sepsis Program (QPSP) developed a family support structure (FSS) to improve care during all stages of childhood sepsis. It was designed in partnership with consumers guided by information from consumers and it is partly delivered by consumers. Key areas include online, multimodal education for families and the ability to connect with other families affected by sepsis. The FSS is delivered by a multidisciplinary team (MDT) acting with clinicians local to the child. Families can join the FSS registry at any stage of their sepsis journey which connects them to our MDT team and opens opportunities to participate in future research and other initiatives. Improving public awareness is a critical outcome for our consumers and they have co-designed media and digital campaigns. Discussion: The ideal FSS for post sepsis syndrome management is a clinical pathway designed in partnership with consumers of interventions proven to improve outcomes from sepsis that meets their requirements. The QPSP FSS is novel as it is co-designed with, and partly delivered by, consumers with interventions aimed to improve the entire spectrum of morbidities suffered by survivors and their families, not just physical sequelae. Evaluation is embedded in the program and outcomes will guide evolution of the FSS.