Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program

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 de...

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Autores principales:	Sainath Raman, Alana English, Meagan O'Keefe, Amanda Harley, Mary Steele, Jess Minogue, Kate Weller, Debbie Long, Adam Irwin, Paula Lister
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	sepsis post sepsis syndrome paediatric consumer family support Pediatrics RJ1-570
Acceso en línea:	https://doaj.org/article/8bed8d444ff44f3d957232a3e524aa03
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spelling	oai:doaj.org-article:8bed8d444ff44f3d957232a3e524aa032021-11-18T06:33:53ZDesigning Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program2296-236010.3389/fped.2021.759234https://doaj.org/article/8bed8d444ff44f3d957232a3e524aa032021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fped.2021.759234/fullhttps://doaj.org/toc/2296-2360Introduction: 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.Sainath RamanSainath RamanSainath RamanAlana EnglishAlana EnglishMeagan O'KeefeMeagan O'KeefeAmanda HarleyAmanda HarleyAmanda HarleyAmanda HarleyMary SteeleJess MinogueKate WellerKate WellerDebbie LongDebbie LongAdam IrwinAdam IrwinAdam IrwinPaula ListerPaula ListerPaula ListerFrontiers Media S.A.articlesepsispost sepsis syndromepaediatricconsumerfamily supportPediatricsRJ1-570ENFrontiers in Pediatrics, Vol 9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	sepsis post sepsis syndrome paediatric consumer family support Pediatrics RJ1-570
spellingShingle	sepsis post sepsis syndrome paediatric consumer family support Pediatrics RJ1-570 Sainath Raman Sainath Raman Sainath Raman Alana English Alana English Meagan O'Keefe Meagan O'Keefe Amanda Harley Amanda Harley Amanda Harley Amanda Harley Mary Steele Jess Minogue Kate Weller Kate Weller Debbie Long Debbie Long Adam Irwin Adam Irwin Adam Irwin Paula Lister Paula Lister Paula Lister Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
description	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.
format	article
author	Sainath Raman Sainath Raman Sainath Raman Alana English Alana English Meagan O'Keefe Meagan O'Keefe Amanda Harley Amanda Harley Amanda Harley Amanda Harley Mary Steele Jess Minogue Kate Weller Kate Weller Debbie Long Debbie Long Adam Irwin Adam Irwin Adam Irwin Paula Lister Paula Lister Paula Lister
author_facet	Sainath Raman Sainath Raman Sainath Raman Alana English Alana English Meagan O'Keefe Meagan O'Keefe Amanda Harley Amanda Harley Amanda Harley Amanda Harley Mary Steele Jess Minogue Kate Weller Kate Weller Debbie Long Debbie Long Adam Irwin Adam Irwin Adam Irwin Paula Lister Paula Lister Paula Lister
author_sort	Sainath Raman
title	Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
title_short	Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
title_full	Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
title_fullStr	Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
title_full_unstemmed	Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program
title_sort	designing support structures post sepsis in children: perspectives of the queensland paediatric sepsis program
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/8bed8d444ff44f3d957232a3e524aa03
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Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program

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