Consumer and community involvement in paediatric intensive care research across Australia and New Zealand: a protocol...

Paediatric intensive care provides specialist expertise and support for critically ill children, often with complex conditions or in life-threatening circumstances. Hospitalisation of a child in a Paediatric Intensive Care Unit (PICU) can be extremely stressful for both the child and family which makes research in this area challenging. The involvement of patients and families (consumers) in the design and conduct of research in PICU is essential to ensure research is aligned with their priorities and meets their needs. However, the current level of consumer and community involvement (CCI) in Australia and New Zealand (ANZ) PICU research is unknown.

This protocol reports a mixed-methods environmental scan employing two phases. Phase 1, a scoping review, will include published, unpublished, and ongoing PICU research, reporting information about study methodology and conduct, and CCI. Quantitative data will be primarily reported using descriptive statistics, and inductive content analysis will be used for qualitative data. Phase 2, semi-structured interviews, will be conducted with purposive sampling of research teams and consumers to gather insights about their experiences of CCI in PICU research, using content analysis to identify key concepts.

Environmental scanning is an effective approach to information gathering and has been used in healthcare as an optimal method for studying real-world interventions. Our study will advance understanding of the current state of CCI in PICU research, identifying strengths, challenges, and areas for improvement. With the assessment of the needs of both consumers and the research community, our study will enable the development of strategies for improving CCI and subsequently the quality of PICU research. A multifaceted approach to dissemination of the findings of this environmental scan, informed by consumer advisors, will be used to reach diverse audiences. This may include email distribution, social media, academic journals, conferences or relevant institutional symposiums.