Perspectives and impediment to eye care in caregivers of children with childhood glaucoma

PURPOSE: To study the perceptions, attitude, knowledge of the disease, and impediments to seeking early eye care in caregivers of children with childhood glaucoma. METHODS: The study included new and old children diagnosed with childhood glaucoma (which included congenital glaucoma and developmental glaucoma) at a tertiary hospital of east India. The caregivers were administered a video-based questionnaire through open-ended questions intended to collect demographic and other personal details such as caregiver's socioeconomic status, knowledge, attitude towards eye health, and other social barriers. The responses were analyzed using thematic analysis technique into different buckets such as social status, knowledge/attitude, and sociocultural beliefs while individual responses in each bucket were analyzed. RESULTS: Of a total of 43 patients included, >75% of patients came from places >200 km from the eye care centre with >50% coming from >300 km. Most patients presented either <1 year (42%, n = 18) or >3 years (52%, n = 22) with only 2% (n = 3) presenting between 1–3 years of age. The mother was the first person of contact to diagnose the eye abnormality in >45% of patients. Comparing differences among children who presented within 1 year of first diagnosis and those that presented later, caregivers hailing from long-distance >200 km from an eye care center, monthly income <5000 INR, and those with social/cultural taboos (like children's eyes should not be operated) were more likely to seek delayed eye care for congenital glaucoma, P < 0.001. CONCLUSION: Impediments in seeking early eye care for blinding diseases in children (including distance from the nearest hospital, low socioeconomic constraints, and sociocultural beliefs/taboos) mandate serious policies towards improving education about eye disease and eye health among caregivers.