ABSTRACT
Objective: To ascertain why children with end-stage retinopathyof prematurity (ROP) become blind, and to explore the impact ofblindness on families.Design: Mixed quantitative and qualitative methods.Setting: Tertiary-care eye hospital in India.Participants: Children with end-stage ROP and their carers.Intervention: Cases presenting between June 2009 and July2016 were identified from medical records and data extracted.Carers were contacted for missing information, if required. Datawere analyzed to explore where failure had occurred in theprocess of screening and treatment. A subset of carers wereselected for in-depth interviews to explore the impact of having ablind child. Interviews were recorded, transcribed and analyzedusing a thematic framework.Main outcome measures: Parental perceptions.Results: 66 children were included: median age 4.3 y (range 3mo– 6 y), 58% boys. 74% were blind due to ‘screening failure’,which was associated with lower maternal education (P=0.03). Ofthe 17 case of treatment failure (24.6%), majority (12, 70%) hadaggressive posterior ROP. A subset of carers of 18 children (50%boys) were interviewed, mostly mothers. Most reportedimpoverishment as a result of having a blind child, and manyreported lack of access to special education, negative attitudes ofothers and concerns about the future.Conclusions: Screening for retinopathy of prematurity needs tobe expanded and counselling improved. Access to specialeducation and rehabilitation need to be improved.