Barriers to childhood cataract services across India. A mixed methods study using the Theoretical Domains Framework (TDF) of behaviour change

Purpose : Early identification and presentation for childhood cataract surgery remains a major challenge in developing countries. The main aim of this study was to identify potential barriers to childhood cataract services from the perspective of parents’ and carers’, as a critical step towards achieving the timely uptake of cataract services.\ud \ud Methods : We used a mixed methods explanatory sequential study and interviewed 572 parents/carers attending tertiary hospitals in 8 states across India for their child's cataract surgery. We collected information on barriers to accessing services using a 12-item questionnaire and for each reported barrier, responses recorded on a 5 point scale ranging from “low to high importance”. Based on the quantitative data, in-depth interview questions were prepared and 35 interviews were conducted with randomly selected parents/ carers. Majority of these interviews were conducted at the hospital and /at home for those who did not undergo the surgery. Quantitative questionnaires were completed by the trained interviewer and responses were recorded in a pre-designed format. In-depth interviews were audio taped and transcribed for analysis. Quantitative data were analysed using SPSS 22 while qualitative data were organised with NVivo 11 and a thematic analysis was conducted utilising TDF, an integrative framework of theories.\ud \ud Results : From the 831 responses the 5 most important barriers were: economic (40%; n=222); child too young for surgery (17%; n=97); the problem was not felt as severe (16%; n=90); distance (14.5%; n=83) and no one to accompany to the hospital (9.5%; n=54). In addition, being advised by a local ophthalmologist to delay the surgery was also reported (n=16). Domains identified by the TDF included “Knowledge”, “Beliefs about consequences”, “Intentions”, “Goals”, “Decision processes”, “Environmental context and resources”, “Social influences and emotion”. This comprehensive TDF approach enabled us to understand the parents perceived barriers to access services for the children.\ud \ud Conclusions : Barriers to accessing childhood cataract services include both practical concerns relating to the family’s socio economic status as well as obstacles from the providers. Mapping out the barriers is necessary to design appropriate intervention for achieving positive behaviour change that can have potential social and economic impact.