Working together to design research for the paediatric intensive care unit: A practical example of researcher–family partnerships for paediatric intensive care unit research.
Despite increased requirements for the involvement of consumers (hereafter referred to as lived experience experts) in research, such involvement can be challenging in paediatric critical care. While guidelines exist, there are limited published examples of lived experience expert involvement in the...
| Publicado en: | Australian Critical Care Vol. 39; no. 4 |
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| Autores principales: | , , , , , , , |
| Formato: | research Journal Article |
| Publicado: |
Elsevier B.V.
Aug2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=195841369&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 195841369 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10367314 GZL jtl: Australian Critical Care issn: 10367314 maglogo: N pubinfo: dt: Aug2026 vid: 39 iid: 4 pid: 467 pub: Elsevier B.V. place: New York, New York artinfo: ui: 195841369 195841369 195841369 10.1016/j.aucc.2026.101629 195841369 ppct: 1 formats: tig: atl: Working together to design research for the paediatric intensive care unit: A practical example of researcher–family partnerships for paediatric intensive care unit research. aug: au: Butler, Ashleigh E. Appleyard, Jessica Steadman, Kristy Catania, Lisa Pereira, Melina Irvine, Candice Pawley, Suzanna Copnell, Beverley affil: School of Nursing and Midwifery, La Trobe University, Bundoora, Australia sug: subj: Intensive Care Units, Pediatric Research, Medical Professional-Family Relations Evaluation Research Personnel Researcher-Subject Relations Collaboration Life Experiences Australia Human Descriptive Statistics Critically Ill Patients Prospective Studies Multimethod Studies Research Subject Recruitment Data Collection Consent Emotions Critical Care ab: Despite increased requirements for the involvement of consumers (hereafter referred to as lived experience experts) in research, such involvement can be challenging in paediatric critical care. While guidelines exist, there are limited published examples of lived experience expert involvement in the design of paediatric intensive care research or how research teams and lived experience experts work together during this process. The aim of this study was to explore the process of and reflections on working with parents and siblings of critically ill children to design The PICU Siblings Study. The PICU Siblings Study is a prospective, multimethod, multistakeholder Australian study that aims to explore the process and practice of sibling inclusion in the paediatric intensive care unit (PICU) when a child is critically ill. Five PICU parents and eight siblings were involved in codesigning the study methods, from inception through to ethical approval. At the completion of the design phase, a reflective evaluation of the codesign process was undertaken by both the primary academic co-investigators and the parent partners to explore challenges, benefits, and outcomes. This article reports on our processes of codesign and the findings from the reflective evaluation. First, we describe our codesign processes for The PICU Siblings Study , undertaken with parents and siblings of critically ill children. We explore our iterative processes to codesign key aspects of our study, including recruitment methods, study populations, data collection methods, and consent processes. We then share reflections from the academic co-investigators and parents on our experiences, highlighting both the emotional and logistical challenges of codesign and the benefits for both parents and the academic co-investigators. Finally, we offer practical recommendations from PICU parents to help guide future research teams to include families in research codesign. Our experiences provide a unique insight into the research codesign process with PICU families, shedding light on a critical but often under-reported aspect of research. These experiences help to demonstrate the feasibility and impact of meaningful family involvement in PICU research and offer practical guidance for future codesign initiatives in critical care settings. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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