Consumer and community involvement in paediatric intensive care research across Australia and New Zealand: a protocol for a mixed-methods environmental scan

Abstract

BACKGROUND: 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. METHODS: 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 Phase 1, a scoping review, will include published, unpublished, and ongoing PICU research, reporting information about study methodology and conduct, and CCI.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. DISCUSSION: 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.

BACKGROUND: Clinicians in the Paediatric Intensive Care Unit (PICU) provide care to some of the sickest children in the hospital. Research in this area can be difficult because children are often very unwell, and families may be distressed and unable to think about research. Because of this, it is important that research is planned carefully, in partnership with patients and families who have experienced the PICU. This makes sure research aligns with their priorities and is conducted in a way that meets their needs. In Australia and New Zealand, involving patients and families in the design, doing, and sharing of research is called Consumer and Community Involvement (CCI). CCI helps to make sure that research is important, useful, fair, and matches the needs and wants of PICU patients and families. Involving patients and families in research is important, but there are many different approaches, and we don’t know what works best in PICU research. This project will map how patients and families have been, and are currently, involved in research projects in PICUs across Australia and New Zealand. METHODS: This project will have two parts. First, we will find and summarise PICU studies to describe how patients and families have been and are involved in PICU research in Australia and New Zealand. Second, we will interview researchers and consumers to get a deeper understanding of their experience of CCI. DISCUSSION: We hope this study will provide a clearer picture of how patients and families are currently involved in PICU research, what’s working well, what isn’t, and where there is a need for improvement.

eng