Family perceptions and barriers towards rehabilitation of visually disabled people: A qualitative survey from Western Uttar Pradesh

Abstract

Looking at the number of visually disabled people population of Uttar Pradesh, there has been a paucity of evidence available on their perception and rehabilitation. This study was conducted to explore the perceptions and possible barriers to the uptake of visual rehabilitation services among visually disabled patients and their families in western Uttar Pradesh.A qualitative investigation using one-to-one interviews with the convenience sampling method in the subjects severely visually disabled (Blind) participants, and their family members. The unstructured interviews were conducted by an independent interviewer. All the interviews were conducted in Hindi. The anonymous quotes of transcripts were translated into English for reporting purposes.A total of 32 interviews were conducted. 16 Participants were between 12 to 52 years of age. Parents of participants who were less than 18 years of age were present during the interview. For the rest 16 patients below 10 years of age, interviews were conducted with their parents. The discussion of each interview was transcribed. The interviews ranged in length from 12 to 30 minutes. From content analysis, four main themes were identified. They are; 1) the denial phase of parents, 2) over protective families, 3) social stigma, and 4) awareness of rehabilitation services, training centers, and government policies in communities. While the majority (95%) were aware of railway discounts many participants had not been aware of other welfare schemes run by the state government. Only 15% had heard of rehabilitation services in the state and vocational training facilities.This study highlights three major challenges in the rehabilitation of visually disabled people in western Uttar Pradesh: 1) The availability of rehabilitation services in the study area, 2) The awareness of visually disabled people about these services, and, 3) The robust strategy for creating awareness about these services at the community level.