'I don`t need an eye check-up'. A qualitative study using a behavioural model to understand treatment-seeking behaviour of patients with sight threatening diabetic retinopathy (STDR) in India.

Diabetic Retinopathy (DR) affects about 27% of patients with diabetes globally. According to the World Health Organization (WHO), DR is responsible for37 million cases of blindness worldwide. The SMART India study (October 2020-August 2021) documented the prevalence of diabetes, and DR in people40 years and above across ten Indian states and one Union Territory by conducting community screening. About 90% of people with sight threatening diabetic retinopathy (STDR) were referred from this screening study to eye hospitals for management, but failed to attend. This qualitative study, a component of the SMART India study, explored perceptions of referred patients regarding their susceptibility to eye related problems in diabetes and the benefits/barriers to seeking care. Perceived barriers from the viewpoint of ophthalmologists were also explored. Guided by the Health Beliefs Model (HBM), 20 semi structured interviews were carried out with consenting patients diagnosed with STDR. They included nine patients who had sought care recruited from eight eye hospitals across different states in India and eleven patients who did not seek care. Eleven ophthalmologists also participated. Four themes of analysis based on the HBM were, understanding of DR and its treatment, perceptions about susceptibility and severity, perceived barriers, perceived benefits and cues to action. Findings revealed poor understanding of the effects of diabetes on the eye contributing to low risk perception. Prohibitive costs of treatment, difficulties in accessing care services and poor social support were major barriers to seeking care. Ophthalmologists acknowledged that the absence of symptoms and the slow progressive nature of the disease deluded patients into thinking that they were fine. The study attests to the need for greater health literacy around diabetes, DR and STDR; for making treatment more affordable and accessible and for the development of effective patient education and communication strategies towards increasing compliance.

Reduction in prevalence of spousal physical violence against women in India: evidence from three national surveys.

Spousal physical violence (PV) against women is considered to be major health issue in developing countries. Lifetime physical violence is a composite outcome consists of hit, kick, beat, slap and threatened with weapon, perpetrated by the husband. The study aims to examine changes in prevalence and specific risk factors for PV from 1998 to 2016 in India. This study analyzed data from a cross sectional epidemiological survey in 1998-1999, NFHS-3 (2005-2006) and NFHS-4 (2015-2016) data. There was a significant decline of about 10% (95% CI: 8.8%-11.1%) in PV. Major risk factors for change in PV were husband's use of alcohol, illiteracy and socio-economic status of the household. The Protection of Women from Domestic Violence Act may have played a role in reducing the PV. Even though there was a decline in PV, actions have to be implemented from the root level to ensure women empowerment.

Feeding At Sleep Time (FeAST) Scale: Assessing Risk for Developing Early Childhood Caries in South Indian Toddlers.

PURPOSE: The Feeding At Sleep Time (FeAST) scale was developed and validated to assess sleep time feeding practices for children younger than three years. The purpose of this study was to describe the process of scoring and find an optimum clinical cutoff score for early childhood caries (ECC) using receiver operating characteristics (ROC) analysis, thereby enabling researchers and clinicians to assess risk for devel- oping ECC. METHODS: The FeAST scale was administered to mothers of 527 toddlers, aged 12 to 36 months, attending four outpatient depart- ments. The score was calculated based on subconstructs of combined breast-feeding (CBR) and combined bottle-feeding (CBO), and suitable cutoff points were identified using ROC analysis. RESULTS: The study established a cutoff score greater than 14 for the CBR construct and a cutoff score greater than 11 for the CBO construct of the FeAST scale to determine a child's risk for developing ECC. The area under the curve (AUC), which measures the overall performance of a scale, has yielded statistically significant values (P<0.001) with fair (0.707) and good (0.788) perform- ance for the CBR and CBO constructs, respectively. CONCLUSION: The Feeding at Sleep Time scale, based on receiver operating characteristics analysis, can potentially be used by clinicians and researchers to screen toddlers at risk of developing early childhood caries.

Exploring the challenges in the management of childhood pneumonia-qualitative findings from health care providers from two high prevalence states in India.

India ranks among the top five countries in the world in child deaths due to pneumonia. Apart from poor public awareness, inadequate health infrastructure and treatment services have compromised effective management. This qualitative study guided by components of the Andersen-Newman's health care utilization framework explored contextual and community challenges faced by health care providers (HCPs) in the delivery of care services for children with pneumonia in select districts of Uttar Pradesh (UP) and Madhya Pradesh (MP). Semi structured interviews (SSIs) and focus groups discussions (FGDs) were carried out with a purposive sample of HCPs selected from three districts in each state. The HCPs included doctors and community health workers (CHWs). All SSIs and FGDs were audio- recorded, with consent, transcribed verbatim, entered into NVivo and analysed using thematic analysis. A total of 15 SSIs were conducted with doctors and eight FGDs were carried out with CHWs. Two themes that best explained the data were:, 1. Health systems: barriers faced in delivery of care services and 2. Evaluated Need: perceptions on community awareness and practices. According to the HCPs inadequacies in government health infrastructure both manpower and equipment, and skill deficits of paramedical staff and CHWs contributed to poor quality of care services for management of childhood pneumonia. This combined with inadequate understanding of pneumonia in the community, dependence on unqualified care providers and distrust of government hospitals acted as barriers to seeking appropriate medical care. Additionally, poor compliance with exclusive breast feeding practices, nutrition and hygiene had contributed to the high prevalence of the disease in these states. Strengthening public health facilities, instilling trust and confidence in people about the availability and the quality of these services and enhancing health literacy around childhood pneumonia would be critical towards protecting children from this disease.

Optimizing Care-Seeking for Childhood Pneumonia: A Public Health Perspective.

OBJECTIVE: This study examined the pattern of care-seeking behavior for childhood pneumonia and factors influencing it, in Madhya Pradesh (MP), Uttar Pradesh (UP) and Tamil Nadu (TN). METHODS: Using a mixed-methods design, consenting mothers of children less than 5 years with probable pneumonia participated in a household survey to assess their care-seeking behavior. A purposively selected sub-sample participated in semi-structured interviews (SSIs) to understand their perceptions on care sought, decision making abilities and cultural influences that governed these behaviors. Health care providers (HCPs) participated in SSIs and focus group discussions. RESULTS: A total of 2194 children were identified with probable pneumonia during the survey. 40 mothers and 41 HCPs participated in semi-structured interviews and focus group discussions. In MP, utilization of private allopathic care was high at 74%, about 8% went to unqualified care providers. In UP, 71% went to unqualified care providers and 5% did not seek care at all. In TN, 75% went to private allopathic doctors, and utilization of government care was higher (19%) compared to MP and UP. Qualitative findings revealed that cultural beliefs coupled with poor decision making abilities, poor understanding of illness and inappropriate care-seeking practices resulted in delays in care seeking, particularly in MP and UP. Inadequacies in government health infrastructure also contributed to their poor utilization. CONCLUSIONS: Promoting health literacy in communities and strengthening the reach of government health facilities will help in optimizing appropriate health care utilization for childhood pneumonia.

Understanding low mobilization for non-communicable diseases among people living with NCDs: A qualitative study on hypertension in urban South India.

There is low civil society mobilization for NCD policies in low- and middle-income countries (LMICs) despite a growing NCD burden. While existing research explains low mobilization largely through constraints such as inadequate funding and capacity at the organizational level, we explore the issue from the perspective of people living with NCDs and ask how lay understandings of hypertension may inform potential mobilization for multisectoral policy actions by people living with hypertension. To explore this question, we develop a theoretical framework that casts mobilization as a function of people's recognition of disease importance, attribution of NCD risk factors to government policies, beliefs about who bears responsibility for NCD prevention and management, and beliefs around efficacy of multisectoral policies. We present findings from 45 semi-structured interviews with people living with hypertension in a qualitative study in Chennai, India. Our thematic analysis reveals that respondents can dedicate limited time and resources to actions around hypertension. People living with hypertension also strongly internalize responsibility for developing and managing their condition and focus primarily on achieving lifestyle changes. Instead of demanding multisectoral policy action around hypertension, respondents recommend that government actions focus on measures that enable their lifestyle changes, such as increasing awareness and health care capacities, and express doubts about the efficacy of government policies. Our findings expand existing theories around mobilization by revealing how people's own understanding of their illness, its risk factors and their underlying drivers, as well as their perception of challenges in NCD policy making can present barriers to mobilization around multisectoral policies. Theory on health social movements would benefit from a deeper integration of individual perspectives and a closer consideration of the specific challenges of living with NCDs given the local context.

Development and validation of a scale to assess Feeding at Sleep Time (FeAST) among infants and toddlers.

BACKGROUND: Feeding practices adopted by parents play a critical role in the development of children's taste preferences, eating habits, nutrition and eventual weight status. Many scales have been developed to assess feeding practices among children of various age groups. This paper aimed to construct and validate a robust scale for the comprehensive assessment of sleep-time feeding practices for children aged 0-3 years and to establish the risk of developing Early Childhood Caries (ECC). METHODS: There were multiple phases to the development of the scale: (a) formation of a conceptual framework, (b) systematic development of an item pool, (c) refinement of the item pool by focus group discussion, cognitive interviewing and pretesting, (d) validity testing and (e) reliability testing. The conceptual framework was built based on four broad constructs: breastfeeding, bottle-feeding, other feeding modes and 'tooth and diet' constructs. Reviews of existing scales in related areas were instrumental in scale development and helped to generate an initial pool of 45 items, which was finally refined to 28 items. RESULTS: Cognitive interviews by the 'think-aloud protocol' helped to reduce ambiguity and maximize clarity of the questions. Pretesting the scale aided increased comprehension and specificity. Face and content validity were corroborated by 'subject matter experts' who endorsed the suitability and appropriateness of items. Reliability was assessed by test-retest, and a near-perfect agreement was obtained in 96% of the items. CONCLUSIONS: This is the first validated scale currently available for recording sleep-time feeding practices of children less than three years of age. This 28-item scale can be applied as a potential clinical scale to record sleep-time feeding history and the risk of developing ECC as well as a research scale to investigate the association of sleep-time feeding practices with ECC.

Where do mothers take their children for pneumonia care? Findings from three Indian states.

Childhood pneumonia accounts for 17% of IMR in India, posing a major health burden. With cultural beliefs influencing care seeking behaviour and disparities existing in health infrastructure across the country, an understanding of the underlying issues merits exploration. Study assessed prevalence of probable pneumonia and examined care seeking behaviour of mothers in three states, Madhya Pradesh (MP), Uttar Pradesh (UP) and Tamil Nadu (TN). This mixed methods study involved a household survey and qualitative interviews with mothers in three districts from each state. Households with children aged 2-59 months were screened to identify those with probable pneumonia; sub-sample of mothers participated in qualitative interviews. Care seeking behaviour was explored in the context of recognition of symptoms, nature of first care provided, time when care was sought outside the home and choice of health provider. Overall 17,442 children from 13,544 households were screened, of which 729 (MP), 752 (UP) and 713 (TN) children respectively, were identified with probable pneumonia; 72 mothers participated in the qualitative interviews. Three months period prevalence was estimated in study districts at 22.2%-MP 13.3%-UP and 8.4%-TN. Most mothers in MP and UP were not perceptive to severity of illness; type of care sought was often inappropriate, delayed, with home remedies and visits to unqualified care providers being their first response. In contrast, in TN, use of home remedies was minimal, going to untrained care providers, non-existent and more than 90% mothers sought appropriate care. Private doctors were the preferred choice among all mothers but utilization of government care was highest in TN (20%). Community health workers were underutilized, with less than 10% mothers consulting them. Need for educating mothers about appropriate care seeking and development of good health infrastructure as essential to attainment of better child health indices are advocated.

Development and validation of a scale to assess attitudes of health care providers towards persons affected by leprosy in southern India.

INTRODUCTION: Assessment of attitudes of health care professionals is important as negative attitude could constitute a major deterrent to care-seeking by persons affected by neglected tropical diseases (NTDs) such as leprosy. Leprosy continues to pose a major disease burden in India with an annual new case detection rate of 10.17 per 100,000 population. This paper reports on the development and validation of a culturally appropriate scale to measure attitude of health care providers (HCPs) towards persons affected by leprosy in Tamil Nadu, India. METHODOLOGY/PRINCIPAL FINDINGS: The Affective, Behavioural and Cognitive (ABC) model of attitudes guided the development of the scale. Steps in scale development included qualitative interviews and focus group discussions with medical officers and paramedical staff selected from high prevalence districts in Tamil Nadu, India which informed the development of the draft scale. Reviews of existing attitude questionnaires in related areas further contributed to scale development and together helped to generate a large pool of items which was then subjected to Thurston's scaling method for selection of items from this pool. Face and content validity were obtained, following which internal consistency and test, re-test reliability were assessed. Scaling exercise resulted in 11 items being discarded from an initial pool of 38, owing to the poor agreement among experts regarding relevance. Face and content validity were good with experts endorsing relevance and applicability of items. The intra-class correlation coefficient (ICC) for test re-test reliability of the 27 item scale was 0.6 (95% CI: 0.20-0.78) indicating marginal intra-class correlation. The overall Cronbach's alpha was 0.85 while the alphas for each of the affective and behavioural components was good at 0.78 and 0.69 respectively indicating a good degree of consistency and homogeneity between items but the alpha for the cognitive component was low at 0.53. CONCLUSIONS: The ABC model of attitudes guided the development of the scale, ensured a mix of 27 items tapping into the three domains of Affect, Behaviour and Cognition which best explained the attitude construct. With good validity and alphas for each of the affective, behavioural components and overall alpha estimates, this scale can be a valuable tool to provide accurate estimates of the true attitudes held by HCPs. This, in turn, would be useful to obtain insights for appropriate intervention programmes that would help change negative attitudes of HCPs towards persons affected by leprosy. With some adaptations, the scales can be validated for other NTDs as well.

Differential item functioning for items in Berger's HIV Stigma Scale: an analysis of cohorts from the Indian, Swedish, and US contexts.

PURPOSE: To examine whether items in Berger's HIV Stigma Scale function differently with persons of different age, gender, and cultural backgrounds. METHODS: Secondary data from cohorts, collected in South India (n = 250), Sweden (n = 193), and the US (n = 603) were reanalyzed to evaluate DIF within, between, and across these cohorts. All participants had answered the revised version of the HIV stigma scale consisting of 32 items forming the subscales Personalized stigma, Disclosure concerns, Concerns about public attitudes, and Negative self-image. Differential Item Functioning (DIF) for these items was assessed using hybrid ordinal regression-IRT technique. When DIF was detected, the cumulative impact of DIF on individual subscale scores was evaluated. RESULTS: DIF was detected for 9 items within, between, or across cohorts, but the DIF was negligible in general. Detected DIF between the Swedish and Indian cohorts had a cumulative salient impact on individual scores for the subscale Disclosure Concerns; Disclosure concerns were overestimated in the Swedish cohort and both over- and underestimated in the Indian cohort. CONCLUSIONS: The items in the 32-item version of the HIV stigma scale did not seem to be particularly prone to present DIF. The DIF between the Indian and Swedish cohort for items in the subscale Disclosure Concerns could, however, result in both type I and type II errors if scores should be compared between the Indian and Swedish cohort.

Sociocultural and structural perpetuators of domestic violence in pregnancy: A qualitative look at what South Indian women believe needs to change.

In India, reported rates of domestic violence rise as high as 31%. Abuse against pregnant women in India is associated with depressive and PTSD symptoms, and poor birth outcomes, yet no evidence-based interventions have been tested on this population. In this cross-sectional qualitative study, we sought perspective on South Indian women's concerns about abuse during pregnancy and what they believed would help. Participants cited economic dependence on husbands and sociocultural structures as factors perpetuating domestic violence. Women also described resilience factors that can protect against abuse. Our participants highlighted a requisite for interventions within health and social systems.

CASP - An intervention by community volunteers to reduce suicidal behaviour among refugees.

BACKGROUND: Refugees are at risk of psychiatric morbidity because of forced migration, traumatic events and resettlement in unfamiliar environments. Many live in low- and middle-income countries (LAMIC) under stressful conditions contributing to increased suicide risk. AIMS: This study assessed the feasibility of regular contact and use of safety planning cards (CASP) by community volunteers (CVs) in reducing suicidal behaviour among Sri Lankan refugees residing in camps in Tamil Nadu, South India. METHODS: A household survey was carried out on consenting adults in two refugee camps - one intervention and one control - randomly selected using lottery method. The primary outcome was reduction in suicidal behaviour. Experience of trauma during war and migration, depression, post-traumatic stress and alcohol use were documented. Individuals scoring >16 on Centre for Epidemiological Studies Depression (CESD) or >30 on Post-traumatic Stress Disorder (PTSD) or with active/passive suicidal ideation or a history of previous suicidal attempts were considered as high risk. CVs were trained to deliver CASP intervention to high-risk individuals. Change from baseline to follow-up was computed for intervention and control groups, and the difference between changes in suicide rates was compared using proportion test. RESULTS: In total, 639 refugees from intervention and 664 from control camps participated. Of the 288 high-risk refugees in intervention camp, 139 completed the intervention. In the control camp, 187 were categorised as high risk. Prevalence of suicide attempts was 6.1%. Following intervention, differences between sites in changes in combined suicide (attempted suicides and suicides) rates per 100,000 per year were 519 (95% confidence interval (CI): 136-902; p < .01). CONCLUSION: CASP, an intervention involving contact by CVs and use of safety planning cards, is feasible to implement and can reduce suicidal behaviour among refugees. Its replication in more settings will enhance validity.

The impact of domestic violence and depressive symptoms on preterm birth in South India.

PURPOSE: India has the highest absolute number of maternal deaths, preterm birth cases, and under-5 mortality in the world, as well as high domestic violence (DV) rates. We sought to examine the impact of DV and its psychosocial correlates on pregnancy and birth outcomes. METHODS: Women seeking antenatal care in Tamil Nadu, South India (N = 150) were assessed during pregnancy, and birth outcomes were abstracted from medical records after the babies were born. RESULTS: We found that psychological abuse (OR 3.9; 95% CI 1.19-12.82) and mild or greater depressive symptoms (OR 3.3; 95% CI 0.99-11.17) were significantly associated with increased risk of preterm birth. Physical abuse was also associated with increased risk of preterm birth, but this was not statistically significant (OR 1.9; 95% CI 0.59-6.19). In each of the above adjusted models, low maternal education was associated with increased risk of preterm birth, in the analysis with depressive symptoms OR 0.18, CI 0.04-0.86 and in the analyses with psychological abuse OR 0.19, CI 0.04-0.91. CONCLUSIONS: These findings suggest that future research should focus on understanding the psychosocial antecedents to preterm birth, to better target interventions and improve maternal child health in limited resource settings.

Input of stakeholders on reducing depressive symptoms and improving diabetes outcomes in India: Formative work for the INDEPENDENT Study.

AIMS: Depression and diabetes are highly comorbid, adversely affecting treatment adherence and resulting in poor outcomes. To improve treatment and outcomes for people dually-affected by diabetes and depression in India, we aimed to develop and test an integrated care model. In the formative phase of this INtegrated DEPrEssioN and Diabetes TreatmENT (INDEPENDENT) study, we sought stakeholder perspectives to inform culturally-sensitive adaptations of the intervention. METHODS: At our Delhi, Chennai, and Vishakhapatnam sites, we conducted focus groups for patients with diabetes and depression and interviewed healthcare workers, family members, and patients. These key informants were asked about experiences with diabetes and depression and for feedback on intervention materials. Data were analyzed using a grounded theory approach. RESULTS: Three major themes emerged that have bearing on adaptation of the proposed intervention: importance of family assistance, concerns regarding patient/family understanding of diabetes, and feedback regarding the proposed intervention (e.g. adequate time needed for implementation; training program and intervention should address stigma). CONCLUSIONS: Based on our findings, the following components would add value when incorporated into the intervention: 1) engaging families in the treatment process, 2) clear/simple written information, 3) clear non-jargon verbal explanations, and 4) coaching to help patients cope with stigma.

Positive coping strategies and HIV-related stigma in south India.

Whether perceived or enacted, HIV-related stigma is widespread in India, and has had a crippling effect on People Living with HIV/AIDS (PLHA). Research has shown that a positive attitude towards the illness sets a proactive framework for the individual to cope with his or her infection; therefore, healthy coping mechanisms are essential to combat HIV-related stigma. This qualitative study involving in-depth interviews and focus group discussions with PLHA affiliated with HIV support groups in South India explored positive coping strategies employed by PLHA to deal with HIV-related stigma. Interviews and focus group discussions were translated, transcribed, and analyzed for consistent themes. Taboos surrounding modes of transmission, perceiving sex workers as responsible for the spread of HIV, and avoiding associating with PLHA provided the context of HIV-related stigma. Despite these challenges, PLHA used several positive strategies, classified as Clear Knowledge and Understanding of HIV, Social Support and Family Well-Being, Selective Disclosure, Employment Building Confidence, and Participation in Positive Networks. Poor understanding of HIV and fears of being labeled immoral undermined healthy coping behavior, while improved understanding, affiliation with support groups, family support, presence of children, and financial independence enhanced PLHA confidence. Such positive coping behaviours could inform culturally relevant interventions.

Antiretroviral therapy adherence measurement in non-clinical settings in South India.

Optimal adherence to antiretroviral therapy (ART) is key to viral suppression, but may be impeded by psychosocial consequences of HIV-infection such as stigma and depression. Measures of adherence in India have been examined in clinic populations, but little is known about the performance of these measures outside clinical settings. We conducted a cross-sectional study of 151 Tamil-speaking people living with HIV/AIDS (PLHA) in India recruited through HIV support networks and compared single item measures from the Adult AIDS Clinical Trial Group (AACTG) scale, a visual analog scale (VAS), and a question on timing of last missed dose. Depression was measured using the Major Depression Inventory (MDI) and HIV-related stigma was measured using an adaptation of the Berger Stigma Scale. Mean age was 35.6 years (SD ± 5.9); 55.6% were male; mean MDI score was 11.9 (SD ± 9.1); and mean stigma score was 67.3 (SD ± 12.0). Self-reported perfect adherence (no missed doses) was 93.3% using the AACTG item, 87.1% using last missed dose, and 83.8% using the VAS. The measures had moderate agreement with each other (kappa 0.45-0.57). Depression was associated with lower adherence irrespective of adherence measure used, and remained significantly associated in multivariable analyses adjusting for age and marital status. Stigma was not associated with adherence irrespective of the measure used. The VAS captured the greatest number of potentially non-adherent individuals and may be useful for identifying PLHA in need of adherence support. Given the consistent and strong association between poorer adherence and depression, programs that jointly address adherence and mental health for PLHA in India may be more effective than programs targeting only one.

Cultural adaptation of the Brief COPE for persons living with HIV/AIDS in southern India.

Physical and psychological stressors of HIV infection demand adequate coping responses from persons living with HIV/AIDS (PLHA) and coping strategies may vary by cultural context. The Brief COPE is a well validated scale that has been used extensively to assess coping with cancer, depression, and HIV infection in other settings, but never in India. In this study we translated and validated the 28 item Brief COPE among 299 PLHA in South India, assessing reliability, validity, and cultural appropriateness. Although the original scale demonstrated acceptable internal consistency (alpha = 0.70) and good convergent validity with depression, the test-retest reliability was marginal (test-retest = 0.6) and the original factor structure demonstrated poor fit in a confirmatory factor analysis (CFA). An exploratory factor analysis yielded a 16 item scale with five factors (active planning, social support, avoidant emotions, substance use, religion). A second CFA demonstrated good model fit and acceptable reliability (alpha = 0.61) of the adapted scale.

A public health initiative for reducing access to pesticides as a means to committing suicide: findings from a qualitative study.

Widespread use of pesticides among farmers in rural India, provides an easy means for suicide. A public health initiative involving storage of pesticides in a central storage facility could be a possible strategy for reducing mortality and morbidity related to pesticide poisoning. This qualitative study explored community perceptions towards a central pesticide storage facility in villages in rural South India. Sixteen focus group discussions held with consenting adults from intervention and control villages were followed by eight more a year after initiation of the storage facility. Analysis revealed four themes, namely, reasons for committing suicide and methods used, exposure to pesticides and first-aid practices, storage and disposal of pesticides, and perceptions towards the storage facility. The facility was appreciated as a means of preventing suicides and for providing a safe haven for pesticide storage. The participatory process that guided its design, construction and location ensured its acceptability. Use of qualitative methods helped provide deep insights into the phenomenon of pesticide suicide and aided the understanding of community perceptions towards the storage facility. The study suggests that communal storage of pesticides could be an important step towards reducing pesticide suicides in rural areas.