'It would help people to help me': Acceptability of digital phenotyping among young people with visual impairment and their families

Abstract

Objectives: To explore the acceptability of an eHealth App for vision-related monitoring and symptom reporting among young people with a visual impairment and their parents.

Methods: Qualitative investigation using virtual semi-structured focus groups (via Zoom software) of seven young participants with a genetic eye disorder including inherited retinal disease and structural eye abnormalities (e.g. microphthalmia), and 7 parents; all recruited from ocular genetic clinics at Moorfields Eye Hospital. Audio transcripts were analysed using thematic analysis.

Results: Data were coded into six key themes: (1) increased involvement in care, (2) opportunity for less hospital-centric care, (3) better representation of visual impairment in a real-world setting, (4) trust in a reputable service provider, (5) harnessing data for health purposes and (6) intended purpose of the app. Both young people and their families were accepting of an eHealth app and felt they would be empowered by greater involvement in their care plan, if privacy of the data was retained, and information was managed correctly. While parents endorsed the opportunity for mental health tracking, young people were hesitant towards its inclusion.

Conclusion: In summary, there was overall acceptability of an eHealth app among young people with a visual impairment and their parents. These findings will help to maximise the effective integration of digital phenotyping when monitoring and supporting young people experiencing sight loss.

Keywords: Digital phenotyping; acceptability; eHealth; smartphone application; visual impairment.

Figure 1.

Exemplar section of the digital activity leaflet given to focus group participants.

Figure 2.

Diagram of key themes and sub-themes that emerged from focus group data.