Nurse perspectives on supporting children and youth who use augmentative and alternative communication (AAC) in the pediatric intensive care unit

Abstract

Many children who require hospitalization in the pediatric intensive care unit (ICU) are unable to or have difficulty communicating through speech, whether because of preexisting or acute conditions. Children who are unable to be heard and understood using only speech benefit from aided augmentative and alternative communication (AAC), including in hospital settings. This qualitative interview study sought to understand the perspectives of nurses on care and support for children who use or would benefit from aided AAC in the pediatric ICU. Participants were six nurses who worked in pediatric intensive care at a tertiary care unit of a children’s hospital in the United States. Three main themes were identified related to nurses’ views about supporting children’s communication: (a) Caring for the Whole Child, (b) Needing Support from Others and Moving between Roles, and (c) Working with Available Resources and Demands. Nurses emphasized the importance of a holistic approach to care, the impact of others’ support and knowledge, and a desire for building greater capacity for promoting children’s access to effective communication. Findings offer insight that could improve patient-centered care for children with complex communication needs and support for nurses themselves, particularly within the broader context of ICU liberation.

Keywords:

• Augmentative and alternative communication (AAC)
• Communication
• ICU liberation
• Nurses
• Pediatric intensive care unit (PICU)

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Words used to describe people are powerful. This study is focused on children and youth in the pediatric ICU who cannot use only speech to be heard and understood. This includes children with limited or no use of verbal speech prior to their admission to the pediatric ICU, and it includes children for whom speech becomes difficult or impossible as a result of circumstances associated with their hospital admission. We periodically use the phrase ‘children with complex communication needs’ in the manuscript because, at the time of writing, this an often-utilized and well-recognized phrase to describe this population, particularly in the research context. However, we also deeply respect the right of each person to describe themselves however they choose. Terminology evolves over time. We encourage readers to explore resources about the words self-advocates use to describe themselves. One such resource has been published by CommmunicationFIRST and can be accessed at https://communicationfirst.org/wp-content/uploads/2023/07/C1st-The-Words-We-Use-Style-Guide-v1-July-2023.pdf

Additional information

Funding

This study was supported by the Vanderbilt Institute for Clinical and Translational Research through CTSA award UL1TR002243 from the National Center for Advancing Translational Sciences. Its contents do not necessarily reflect official views of the National Center for Advancing Translational Sciences or the National Institutes of Health.