Incorporating Patient Perspectives in Speech-Language Pathology Research: Moving Towards Digital Outcome Measurement in Pediatrics
Abstract
The Focus on the Outcomes of Communication Under Six (FOCUS) is a parent-report participation-focused outcome measure that can be used with preschoolers with communication impairments. Speech-language pathologists suggest a digital solution as implementation barriers exist when accessing scores that are needed to understand outcomes and make clinical decisions. To date, caregivers’ perspectives have not been studied. Fifteen caregivers were engaged for 30-60 minutes in virtual focus groups and individual interviews to understand their experiences completing the FOCUS-34, perceptions of how a digital solution may be helpful, and recommendations to include. Four themes were identified using thematic analysis: caregivers’ current experiences and expectations for outcome measurement, the need for support to complete the FOCUS-34, belief a digital solution would improve service experience, and suggested features for a digital solution. These results provide insights into caregivers’ perspectives on outcome measurement and will inform efforts to improve the clinical utility of the FOCUS-34.
The Focus on the Outcomes of Communication Under Six (FOCUS) is a parent-report participation-focused outcome measure that can be used with preschoolers with communication impairments. Speech-language pathologists suggest a digital solution as implementation barriers exist when accessing scores that are needed to understand outcomes and make clinical decisions. To date, caregivers’ perspectives have not been studied. Fifteen caregivers were engaged for 30-60 minutes in virtual focus groups and individual interviews to understand their experiences completing the FOCUS-34, perceptions of how a digital solution may be helpful, and recommendations to include. Four themes were identified using thematic analysis: caregivers’ current experiences and expectations for outcome measurement, the need for support to complete the FOCUS-34, belief a digital solution would improve service experience, and suggested features for a digital solution. These results provide insights into caregivers’ perspectives on outcome measurement and will inform efforts to improve the clinical utility of the FOCUS-34.