"How can our children learn from us about our way of life or understand who they are?": Residential schools and their impact on the wellbeing of Indigenous youth in Attapadi, South India.

Residential schools are commonly used in India to provide education for Indigenous youth, which requires young people to stay for long periods at distance from their families and communities. Internationally, there is clear evidence for the deleterious effects of residential schools on the mental health and social and community outcomes of Indigenous children, however little is known about the Indian Indigenous experience. This study examined the impact of residential schooling on Indigenous children's wellbeing and that of their communities, using data from an ethnographic research project in Attapadi, Kerala, including interviews, focus group discussions and participant observation with Indigenous communities. Key outcomes from residential schooling reported by the participants include the fear of losing Indigenous identity, shame of being Indigenous, change in the attitude of young people when they returned from schools, and feelings of confusion and stress that young Indigenous participants felt trying to fit into their communities on their return. Findings suggest that these Indigenous youth felt disconnected from several factors that are known to promote resilience for Indigenous communities including a strong cultural identity, connection to the land and ancestors, thereby making them more vulnerable to poor mental health and negative impacts on their overall wellbeing. Addressing these concerns requires a detailed understanding of the specific factors influencing outcomes for Indigenous youth within the Indian residential schooling system, and designing and implementing data-informed conceptual, structural and policy change including the provision of culturally safe mental health services.

Does the presence of health insurance and health facilities improve access to healthcare for major morbidities among Indigenous communities and older widows in India? Evidence from India Human Development Surveys I and II.

In this paper, we examine whether access to treatment for major morbidity conditions is determined by the social class of the person who needs treatment. Secondly, we assess whether health insurance coverage and the presence of a PHC have any significant impact on the utilisation of health services, either public or private, for treatment and, more importantly, whether the presence of health insurance and PHC modify the treatment use behaviour for the two excluded communities of interest namely Indigenous communities and older widows using data from two rounds (2005 and 2012) of the nationally representative India Human Development Survey (IHDS). We estimated a multilevel mixed effects model with treatment for major morbidity as the outcome variable and social groups, older widows, the presence of a PHC and the survey wave as the main explanatory variables. The results confirmed access to treatment for major morbidity was affected by social class with Indigenous communities and older widows less likely to access treatment. Health insurance coverage did not have an effect that was large enough to induce a positive change in the likelihood of accessing treatment. The presence of a functional PHC increased the likelihood of treatment for all social groups except Indigenous communities. This is not surprising as Indigenous communities generally live in locations where the terrain is more challenging and decentralised healthcare up to the PHC might not work as effectively as it does for others. The social class to which one belongs has a significant impact on the ability of a person to access healthcare. Efforts to address inequity needs to take this into account and design interventions that are decentralised and planned with the involvement of local communities to be effective. Merely addressing one or two barriers to access in an isolated fashion will not lead to equitable access.

Engaging participants with research findings: A rights-informed approach.

BACKGROUND: Sharing research findings with participants is recognized as an ethical imperative for the research community. However, most discourse on this topic in mainstream public health takes a paternalistic approach, with researchers retaining the power to choose if, when, and how research findings are shared. METHODS: Fieldwork took place from August 2018 to January 2019 and again from August 2019 to December 2019 among two communities in the south Indian state of Kerala. We integrated participant engagement with study findings into the research protocol, using various collaborative strategies identified during the design stage, forming partnerships with participants and determining appropriate forms of dissemination for different participant groups during fieldwork. RESULTS: Findings from previous research projects undertaken with these communities by other researchers had not been shared with them. This was interpreted by the communities as researchers not being interested in making a difference to their situation. In the current study, building reciprocal relationships that minimized power disparities, and providing outputs in tailored formats that promoted active engagement were key factors that enabled participants to engage with results. This engagement added value by enabling us to co-develop study recommendations. This process also enabled the community to have ownership of the results and use them to advocate for health system change to improve access to health care. CONCLUSION: Research should be transformative for participating communities. Participants have a right to know the results of the research they participate in since their knowledge provides the research data which can in turn promote community change. Operationalising this requires researchers to build partnerships with participants and their communities from the outset. The role of participants must be reimagined, and adequate resources should be built into the research process. This is both socially responsible and ethical, but also improves the impact and legitimacy of research for the participants and the communities that they represent. PATIENT OR PUBLIC CONTRIBUTION: Participants of our research contributed to the design of various aspects of the engagement processes including the venue, the formats used for engagement, interpretation of the findings and recommendations from our research.

"Everything is provided free, but they are still hesitant to access healthcare services": why does the indigenous community in Attapadi, Kerala continue to experience poor access to healthcare?

BACKGROUND: Inequity in access to healthcare services is a constant concern. While advances in healthcare have progressed in the last several decades, thereby significantly improving the prevention and treatment of disease, these benefits have not been shared equally. Excluded communities such as Indigenous communities typically face a lack of access to healthcare services that others do not. This study seeks to understand why the indigenous communities in Attapadi continue to experience poor access to healthcare in spite of both financial protection and adequate coverage of health services. METHODS: Ethnographic fieldwork was carried out among the various stakeholders living in Attapadi. A total of 47 in-depth interviews and 6 focus group discussions were conducted amongst the indigenous community, the healthcare providers and key informants. The data was coded utilising a reflexive and inductive approach leading to the development of the key categories and themes. RESULTS: The health system provided a comprehensive financial protection package in addition to a host of healthcare facilities for the indigenous communities to avail services. In spite of this, they resisted attempts by the health system to improve their access. The failure to provide culturally respectful care, the discrimination of the community at healthcare facilities, the centralisation of the delivery of services as well as the lack of power on the part of the indigenous community to negotiate with the health system for services that were less disruptive for their lives were identified as the barriers to improving healthcare access. The existing power differentials between the community and the health system stakeholders also ensured that meaningful involvement of the community in the local health system did not occur. CONCLUSION: Improving access to health care for indigenous communities would require UHC interventions to be culturally safe, locally relevant and promote active involvement of the community at all stages of the intervention. Continuing structural power imbalances that affect access to resources and prevent meaningful involvement of indigenous communities also need to be addressed.

Community, system and policy level drivers of bovine tuberculosis in smallholder periurban dairy farms in India: a qualitative enquiry.

BACKGROUND: Rapid urbanization has led to expansion of peri-urban fringes, where intensive, industry-style livestock rearing has led to emerging vulnerabilities at the human-animal-environment interface. This study was undertaken to understand the health system and farm-level factors that influenced the risk of transmission of bovine Tuberculosis (bTB) in animals and humans in peri-urban smallholder dairy farms of India. METHODS: Thematic guides were developing through literature review and expert consultation. In-depth interviews were conducted till attainment of saturation. Identification of core themes was followed by etiological enquiry and generation of a conceptual model. RESULTS: Veterinarians were consulted as a last resort after home-remedies and quacks had failed. Damage control measures, especially with respect to- selling or abandoning sick animals, added to the risk of disease transmission. Although civic authorities believed in the adequacy of a functioning laboratory network, end users were aggrieved at the lack of services. Despite the presence of extension services, knowledge and awareness was limited, promoting risky behaviour. The absence of cogent policies in dealing with bTB was a significant barrier. Stakeholders did not consider bTB to be a major concern. It is possible that they underestimate the problem. CONCLUSION: The current study helps to identify gaps which need to be addressed through collaborative research, and OneHealth interventions to build community awareness.

The social biography of antibiotic use in smallholder dairy farms in India.

Background: Antimicrobial resistance (AMR) has been identified as one of the major threats to global health, food security and development today. While there has been considerable attention about the use and misuse of antibiotics amongst human populations in both research and policy environments, there is no definitive estimate of the extent of misuse of antibiotics in the veterinary sector and its contribution to AMR in humans. In this study, we explored the drivers ofirrational usage of verterinary antibiotics in the dairy farming sector in peri-urban India. Methods and materials: The study was conducted in the peri-urban belts of Ludhiana, Guwahati and Bangalore. A total of 54 interviews (formal and non-formal) were carried out across these three sites. Theme guides were developed to explore different drivers of veterinary antimicrobial use. Data was audio recorded and transcribed. Analysis of the coded data set was carried out using AtlasTi. Version 7. Themes emerged inductively from the set of codes. Results: Findings were presented based on concept of 'levels of analyses'. Emergent themes were categorised as individual, health systems, and policy level drivers. Low level of knowledge related to antibiotics among farmers, active informal service providers, direct marketing of drugs to the farmers and easily available antibiotics, dispensed without appropriate prescriptions contributed to easy access to antibiotics, and were identified to be the possible drivers contributing to the non-prescribed and self-administered use of antibiotics in the dairy farms. Conclusions: Smallholding dairy farmers operated within very small margins of profits. The paucity of formal veterinary services at the community level, coupled with easy availability of antibiotics and the need to ensure profits and minimise losses, promoted non-prescribed antibiotic consumption. It is essential that these local drivers of irrational antibiotic use are understood in order to develop interventions and policies that seek to reduce antibiotic misuse.

Motivating and demotivating factors for community health workers: A qualitative study in urban slums of Delhi, India.

Background Community health workers play an important role in delivering health-care services, especially to underserved populations in low- and middle-income countries. They have been shown to be successful in providing a range of preventive, promotive and curative services. This qualitative study investigated the factors motivating or demotivating community health workers in urban settings in Delhi, India. Methods In this sub-study of the ANCHUL (Ante Natal and Child Healthcare in Urban Slums) implementation research project, four focus-group discussions and nine in-depth interviews were conducted with community health workers and medical officers. Utilizing a reflexive and inductive qualitative methodology, the data set was coded, to allow categories of motivating and demotivating factors to emerge. Results Motivating factors identified were: support from family members for their work, improved self-identity, job satisfaction and a sense of social responsibility, prior experiences of ill health, the opportunity to acquire new skills and knowledge, social recognition and status conferred by the community, and flexible work and timings. Negative experiences in the community and at health centres, constraints in the local health system in response to the demand generated by the community health workers, and poor pay demotivated community health workers in this study, even causing some to quit their jobs. Conclusion Community-health-worker programmes that focus on ensuring the technical capacity of their staff may not give adequate attention to the factors that motivate or discourage these workers. As efforts get under way to ensure universal access to health care, it is important that these issues are recognized and addressed, to ensure that community health worker programmes are effective and sustainable.

How do parents and pediatricians arrive at the decision to immunize their children in the private sector? Insights from a qualitative study on rotavirus vaccination across select Indian cities.

Key debates on improving vaccination coverage tend to focus on factors that affect uptake in the public health system while ignoring the private sector that plays an important role in providing health services in any low or middle-income country setting. Using in-depth interviews, we explored factors that influenced the decision of parents as well as pediatricians working in the private sector across 8 Indian cities on whether their children should be vaccinated with a particular vaccine Pediatricians and their relationship with parents was an important factor that influenced the decision on whether parents vaccinated their children with a particular vaccine or not. The decision to recommend a vaccine is taken on the principle that it is better to be safe than sorry than on any objective assessment of whether a child requires a particular vaccine or not. Family members and social factors also played a major role in the decision-making. According to some parents, vaccinating their child added an aspirational value to their growth. This is especially true of the newer vaccines that are considered optional in India. The cost of a vaccine did not come up as an inhibiting factor in the decision to vaccinate a child. Access to appropriate evidence was limited for both pediatricians and parents and evidence per se played a minimal role in the final decision to vaccinate a child or not. Far more important were the influences of factors such as relationship with the pediatrician, the role of decisions related to vaccination taken by people in the immediate social network.

'I am doing fine only because I have not told anyone': the necessity of concealment in the lives of people living with HIV in India.

In HIV prevention and care programmes, disclosure of status by HIV-positive individuals is generally encouraged to contain the infection and provide adequate support to the person concerned. Lack of disclosure is generally framed as a barrier to preventive behaviours and accessing support. The assumption that disclosure is beneficial is also reflected in studies that aim to identify determinants of disclosure and recommend individual-level measures to promote disclosure. However, in contexts where HIV infection is stigmatised and there is fear of rejection and discrimination among those living with HIV, concealment of status becomes a way to try and regain as much as possible the life that was disrupted by the discovery of HIV infection. In this study of HIV-positive women and children in India, concealment was considered essential by individuals and families of those living with HIV to re-establish and maintain their normal lives in an environment where stigma and discrimination were prevalent. This paper describes why women and care givers of children felt the need to conceal HIV status, the various ways in which people tried to do so and the implications for treatment of people living with HIV. We found that while women were generally willing to disclose their status to their husband or partner, they were very keen to conceal their status from all others, including family members. Parents and carers with an HIV-positive child were not willing to disclose this status to the child or to others. Understanding the different rationales for concealment would help policy makers and programme managers to develop more appropriate care management strategies and train care providers to assist clients in accessing care and support without disrupting their lives.

Why women choose to give birth at home: a situational analysis from urban slums of Delhi.

OBJECTIVES: Increasing institutional births is an important strategy for attaining Millennium Development Goal -5. However, rapid growth of low income and migrant populations in urban settings in low-income and middle-income countries, including India, presents unique challenges for programmes to improve utilisation of institutional care. Better understanding of the factors influencing home or institutional birth among the urban poor is urgently needed to enhance programme impact. To measure the prevalence of home and institutional births in an urban slum population and identify factors influencing these events. DESIGN: Cross-sectional survey using quantitative and qualitative methods. SETTING: Urban poor settlements in Delhi, India. PARTICIPANTS: A house-to-house survey was conducted of all households in three slum clusters in north-east Delhi (n=32 034 individuals). Data on birthing place and sociodemographic characteristics were collected using structured questionnaires (n=6092 households). Detailed information on pregnancy and postnatal care was obtained from women who gave birth in the past 3 months (n=160). Focus group discussions and in-depth interviews were conducted with stakeholders from the community and healthcare facilities. RESULTS: Of the 824 women who gave birth in the previous year, 53% (95% CI 49.7 to 56.6) had given birth at home. In adjusted analyses, multiparity, low literacy and migrant status were independently predictive of home births. Fear of hospitals (36%), comfort of home (20.7%) and lack of social support for child care (12.2%) emerged as the primary reasons for home births. CONCLUSIONS: Home births are frequent among the urban poor. This study highlights the urgent need for improvements in the quality and hospitality of client services and need for family support as the key modifiable factors affecting over two-thirds of this population. These findings should inform the design of strategies to promote institutional births.