Purpose.
To identify through focus groups of visually impaired children and their parents, relevant content for a vision-targeted health-related
quality of life (HRQoL) questionnaire designed for children aged 6 to 12 years.
Methods.
Six focus groups of children with vision impairment aged 6 to 12 years and six focus groups of their parents were conducted by trained facilitators using a guided script. Sessions were recorded, transcribed, and coded as per a standardized protocol for content analysis. Comments were placed in thematic categories and each was coded as positive, negative, or neutral.
Results.
Twenty-four children (mean age: 9.4 years) with vision impairment from a variety of causes and 23 parents participated in the study. The child focus groups generated 1,163 comments, of which 52% (n = 599) were negative, 12% (n = 138) were neutral, and 37% (n = 426) were positive. The three most common topical areas among children were: glasses and adaptive equipment (18%), psychosocial (14%), and school (14%). The parent focus groups generated 1952 comments of which 46% (n = 895) were negative, 16% (n = 323) were neutral, and 38% (n = 734) were positive. The three most common topical areas among parents were: school (21%), expectations or frustrations (14%), and psychosocial (13%).
Conclusions.
Pediatric vision impairment has significant effects on HRQoL, as reported by children with vision impairment and their parents in their own words. These findings will provide the content to guide construction of a survey instrument to assess vision-specific, HRQoL in children with vision impairment.
