PURPOSE: To identify specific health-related quality of life and visual function concerns affecting children with bilateral visual impairment as expressed by children or one of their parents (proxy) and concerns affecting the parents themselves.METHODS: A total of 37 children <16 years of age with visual impairment (visual acuity worse than 20/70 in the better eye) and one parent for each child were prospectively enrolled. Semistructured individual interviews were performed with children 5-15 years of age (n = 16) and with one parent for each child (ages 0-15 years, N = 37). Interview transcripts were analyzed using NVivo software. Categories of concern were identified from both child and parent interviews, from which broad themes were identified. The frequencies of the themes and specific categories of concerns were calculated.RESULTS: Regarding the child's experience, categories of concern were grouped into 6 themes: visual function (expressed by 13 of 16 children [81%] and 33 of 37 parents [89%]), treatment (63% and 54%), emotions (50% and 68%), social (50% and 70%), physical discomfort (50% and 22%), and worry (38% and 8%). Concerns expressed regarding the parents' own experience were grouped into 5 themes: worry (100%), compensate-adjust for condition (89%), treatment (84%), emotions (81%), and affects family (46%).CONCLUSIONS: Individual interviews identified a wide spectrum of concerns in children with visual impairment and their parents, affecting functional, emotional, social and physical domains. Specific concerns will be used to develop patient-derived questionnaires for quantifying the effects of visual impairment on children and parents in everyday life.
Adolescent Adult