More than words: Parent, Patient and Public Involvement perspectives on language used by clinical researchers in neonatal care

Becky Moss; William Lammons; Samantha Johnson; Ricardo Ribas; Sabita Uthaya; Cheryl Battersby; Victoria Cornelius; Daphne Babalis; Neena Modi

doi:10.1016/j.earlhumdev.2022.105611

More than words: Parent, Patient and Public Involvement perspectives on language used by clinical researchers in neonatal care

Early Hum Dev. 2022 Aug:171:105611. doi: 10.1016/j.earlhumdev.2022.105611. Epub 2022 Jun 15.

Authors

Becky Moss¹, William Lammons², Samantha Johnson³, Ricardo Ribas², Sabita Uthaya², Cheryl Battersby², Victoria Cornelius⁴, Daphne Babalis⁴, Neena Modi²

Affiliations

¹ Neonatal Medicine Research Group, Imperial College London, Chelsea and Westminster NHS Foundation Trust, 369 Fulham Road, London SW10 9NH, UK. Electronic address: b.moss@imperial.ac.uk.
² Neonatal Medicine Research Group, Imperial College London, Chelsea and Westminster NHS Foundation Trust, 369 Fulham Road, London SW10 9NH, UK.
³ Department of Health Sciences, University of Leicester, Centre for Medicine, University Road, Leicester LE1 7RH, UK.
⁴ Imperial Clinical Trials Unit, Imperial College London, London, UK.

PMID: 35785689
DOI: 10.1016/j.earlhumdev.2022.105611

Abstract

In this qualitative study exploring parent views of information about research studies, we found they accepted uncertainty as justification, and that three key aspects of language - words, tone, and pace - influence parents' decision about their baby's inclusion. We recommend parents are routinely involved in developing information materials.

Keywords: Language; Neonatal; Parent Public Involvement; Qualitative.

MeSH terms

Humans
Infant, Newborn
Language*
Parents*
Qualitative Research