Patient and provider perspectives on barriers to screening for Diabetic Retinopathy: An 3 exploratory study from Southern India

Objective: Diabetic retinopathy is one of the leading causes of visual impairment after cataract and uncorrected refractive error. It has major public health implications globally, especially in countries such as India where the prevalence of diabetes is high. With timely screening and intervention, the disease progression to blindness can be prevented, but several barriers exist. As compliance to diabetic retinopathy screening in people with diabetes is very poor in India, this study was conducted to explore understanding of and barriers to diabetic retinopathy screening from the perspectives of patients and healthcare providers. Methods: Using qualitative methods, 15 consenting adult patients with diabetes were selected purposively from those attending a large tertiary care private eye hospital in southern India. Eight semistructured interviews were carried out with healthcare providers working in large private hospitals. All interviews were audiotaped, transcribed verbatim and analysed using the framework analytical approach. Results: Four themes that best explained the data were recognising and living with diabetes, care-seeking practices, awareness about diabetic retinopathy and barriers to diabetic retinopathy screening. Findings showed that patients were aware of diabetes but understanding of diabetic retinopathy and its complications was poor. Absence of symptoms, difficulties in doctor–patient interactions and tedious nature of follow-up care were some major deterrents to care seeking reported by patients. Difficulties in communicating information about diabetic retinopathy to less literate patients, heavy work pressure and silent progression of the disease were major barriers to patients coming for follow-up care as reported by healthcare providers. Conclusions: Enhancing patient understanding through friendly doctor–patient interactions will promote trust in the doctor. The use of an integrated treatment approach including education by counsellors, setting up of patient support groups, telescreening approaches and use of conversation maps may prove more effective in the long run

Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India.

Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone

Experiences of stigma and discrimination of people with schizophrenia in India.

Stigma contributes greatly to the burden of schizophrenia and is a major obstacle to recovery, yet, little is known about the subjective experiences of those directly affected in low and middle income countries. This paper aims to describe the experiences of stigma and discrimination of people living with schizophrenia (PLS) in three sites in India and to identify factors influencing negative discrimination. The study used mixed methods and was nested in a randomised controlled trial of community care for schizophrenia. Between November 2009 and October 2010, data on four aspects of stigma experienced by PLS and several clinical variables were collected from 282 PLS and 282 caregivers and analysed using multivariate regression. In addition, in-depth-interviews with PLS and caregivers (36 each) were carried out and analysed using thematic analysis. Quantitative findings indicate that experiences of negative discrimination were reported less commonly (42%) than more internalised forms of stigma experience such as a sense of alienation (79%) and significantly less often than in studies carried out elsewhere. Experiences of negative discrimination were independently predicted by higher levels of positive symptoms of schizophrenia, lower levels of negative symptoms of schizophrenia, higher caregiver knowledge about symptomatology, lower PLS age and not having a source of drinking water in the home. Qualitative findings illustrate the major impact of stigma on 'what matters most' in the lives of PLS and highlight three key domains influencing the themes of 'negative reactions' and 'negative views and feelings about the self', i.e., 'others finding out', 'behaviours and manifestations of the illness' and 'reduced ability to meet role expectations'. Findings have implications for conceptualising and measuring stigma and add to the rationale for enhancing psycho-social interventions to support those facing discrimination. Findings also highlight the importance of addressing public stigma and achieving higher level social and political structural change

Spectacle compliance among adolescents in Southern India: Perspectives of service providers

Purpose: Compliance to spectacle wear is vital to elimination of avoidable blindness among schoolchildren. This study aims to understand the barriers to compliance and strategies to overcome the barriers from the perspectives of the service providers of the school vision-screening model. Methods: A snapshot qualitative study using focus group discussions (FGDs) was conducted among the service providers including eye care professionals (ECPs) and social workers that are part of the school screening program. Sessions were audio recorded and transcribed. Themes were formed following inductive coding using a conceptual framework. Results: Out of the three FGDs, two were with ECPs and one with social workers. Four subthemes identified under the barriers were poor awareness, spectacle-related, psychosocial, and financial barriers. Unique barriers according to the service providers included nonuse of spectacles by asymptomatic children, children with unilateral refractive errors and those with emmetropic parents. Service providers also brought out parent's feelings of guilt, doubts about their children's impaired vision, the negative self-image among children, and difficulties in obtaining funding to support the costs of screening. Solutions that emerged included the personal visit of professionals for spectacle distribution and counseling parents, demonstration of improvement in vision for activities that were difficult for the children without spectacles and rewarding, and role modeling of compliant children. Conclusion: This study had identified unique barriers and solutions from the perspectives of the service providers. The suggested strategies would aid in an effective schoolchildren vision screening practice to enhance compliance to spectacle wear