Family matters - living with diabetes in rural South India
Study life: India, with its 1.21 billion inhabitants has the largest diabetic population in the world. A Danish anthropology student spent eight months studying how patients from low-income households in rural areas manage their diabetes on a day-to-day basis.
Type 2 diabetes is a disease often associated with rapid urbanisation and a shift towards modern lifestyles. However, in India the disease is almost equally prevalent in rural and urban populations. People who are poor and living in rural areas have suboptimal long-term outcomes since their access to healthcare is limited. So how do individuals with unstable livelihoods - irregular income and inadequate resources - manage chronic disease care in daily life?
CHAD (Community Health and Development) program of the Community Health Department, Christian Medical College (CMC) Vellore, extends affordable primary and secondary care and health education to the community in a rural block of Tamil Nadu state. Under the guidance of Shantidani Minz (faculty in Community Health, CMC), two researchers Louise Borst (M.Sc. student at the Department of Anthropology at the University of Copenhagen) and Gifta P. Manohari (social worker at CHAD) followed ten individuals and their families for six months to find answer to this question.
To gain an idea of their life situation patients and their families were visited on a weekly basis to discuss topics related to their health and followed for clinical appointments. This ethnographic method, known as participant observation, was vital in demonstrating that a patient's health concerns are primarily social.
Diabetes is a household issue
"The patients we followed live in joint families with more generations under the same roof often sharing one room. Inevitably arguments occur. A common complaint is that diabetes has led to disputes between man and wife. Generally, wives worry about the health of their husbands and the financial burden incurred on the household should he become unable to work. They try to limit the quantity of food given, while husbands complain about weakness and discomfort caused by the lack of nutrition making them unable to work," says Louise Borst.
Networking for therapy
Family plays a great role when tackling diabetes. Patients from poor backgrounds with little or no support from household members are likely to suspend or stop-and-start treatment because other problems take up the time, money and energy that is needed to uphold continuous care of a chronic condition. Without the support of family members patients rely on their social network at large.
Patients learn about and gain access to affordable treatment sources through household members, neighbours, colleagues, peers, and health workers - be it the licensed doctor, the self-appointed pharmacist or the odd anthropologist.
"Knowing how medical treatment plans inflict on patients' everyday lives and the ways in which poor patients deal with treatment despite financial constraints is crucial to provide better prospects for chronic self-care. Listening to what individuals themselves have to say about their health and well being is essential to policy making," Louise Borst says.
Louise Borst is still situated in Vellore, and is currently writing papers for publication based on the study. She also tutors local Master of Public Health students in qualitative analysis along with co-researcher Gifta P. Manohari at the Christian Medical College Vellore.
The study is a collaboration between the Community Health & Training Centre of Christian Medical College Vellore (CMC) and Department of Anthropology at the University of Copenhagen. The two institutions have been collaborating on research and education in international health since 1998.