Lived experiences of diabetes self-management among persons with disabilities in rural Tamil Nadu - a case study approach.

BACKGROUND: People with disabilities have numerous challenges in diabetes self-management. Poor self-management leads to the worsening of disability and secondary complications of diabetes. This study was conducted to explore the challenges in diabetes self-management and the factors influencing diabetes self-management among people with disabilities. METHODS: We conducted 16 case studies among people with physical, neurological, visual, hearing, and multiple disabilities who were affected by diabetes. We adopted a thematic content analysis approach to analyse the data. RESULTS: People with disabilities have challenges in adopting healthy diets as they are unable to purchase and consume fruits and vegetables which are costly, unavailable, and inaccessible. They have difficulty in doing physical activity due to lack of inclusive public spaces which are inaccessible, lack of motivation, and dependence on others for their mobility. Irregular drug supply in the public health system and unaffordable cost of drugs hamper adherence to medications. Laboratories are inaccessible to people with disabilities thus preventing monitoring of blood sugars. They have poor quality of life, life with pain and mental health issues, which prevent adoption of self-management behaviors. The intersectionality of age and gender with disability worsens self-management behaviors. Inaccessible health system, poor quality of health care and insensitive health care providers further complicate self-management. CONCLUSION: This study documents the challenges faced by persons with disabilities in practicing diabetes self management. There is a need for public health policy and planning that is inclusive of persons with disabilities to make access to diabetes care universal.

'Makkalai Thedi Maruthuvam' scheme in Tamil Nadu: an intersectionality-based analysis of access to NCD care.

There are gross inequities in access to non-communicable disease (NCD) care in India. The Indian state of Tamil Nadu recently launched the "Medicine at people's doorstep" (Makkalai Thedi Maruthuvam - MTM) scheme in which screening and medications for NCDs are delivered at people's doorsteps. This is likely to improve geographical access to NCD services in the community. The objective of this study is to analyse the MTM scheme and recommend policy interventions for improved and equitable access to NCD services in the community. We analysed the MTM policy document using the intersectionality-based policy analysis framework. This analysis was supplemented further with literature review to enhance understanding of the various intersecting axes of inequities, such as gender discrimination, caste oppression, poverty, disabilities and geographical access barriers. The MTM policy document, while it removes the physical access barrier, does not frame the problem of NCDs from an intersectionality perspective. This can increase the chances of inequities in access to NCD services persisting despite this scheme. We also recommend interventions for the short, intermediate and long term to make NCD care more accessible. Creation of a gender, caste, class, geographical access, and disabilities disaggregated database of patients with NCDs, using this database for monitoring the delivery of MTM services, dynamic mapping of vulnerability of the target populations for delivery of MTM services and long term ongoing digital surveillance of factors inducing inequities to access of NCD services can all help reduce inequities in access to NCD care.

Ethical Framework to Address Barriers to Healthcare for People with Disabilities in India.

Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived from the basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India.

"Medicines is all that I can sometimes offer them": challenges of providing primary diabetes care to persons with disabilities in Tamil Nadu.

BACKGROUND: Persons with disabilities have a higher risk for and poorer outcomes of type 2 diabetes. Primary health care providers face several challenges in providing primary diabetes care for them. This study was conducted to explore the challenges faced by primary health care providers in delivering primary diabetes services to persons with disabilities. METHODS: We performed a qualitative research study by conducting in-depth interviews among 13 primary health care providers including medical officers, staff nurses, community health workers and a physiotherapist. We adopted a descriptive qualitative research approach to data collection and analysis. RESULTS: Primary health care providers often could only prescribe medications to persons with diabetes by proxy due to poor accessibility of the facilities. They felt that these patients also had poor compliance to treatment. They felt that the lack of standard guidelines for diet and exercise for persons with disabilities prevented them from giving them appropriate advice on the same and even if they did, persons with disabilities would find it very difficult to adopt dietary changes and physical activity as they were dependent on others for even their daily activities. They also felt that they couldn't perform annual screening tests due to lack of accessibility to higher facilities. Some primary care providers did local innovations such as formation of peer support groups, utilization of resources of other programs to reach out to persons with disabilities and innovative physical activity techniques to care for persons with disabilities. They recommended that there is a need for specific guidelines for management of diabetes among persons with disabilities, treatment of chronic diseases among persons with disabilities must be incentivized and there must be intersectoral coordination between social welfare department and health department to achieve the goal of care for persons with disabilities. CONCLUSIONS: Primary health care providers faced substantial challenges in providing primary diabetes care for persons with disabilities. There is a need for an effective public health policy to address these challenges.