India: Why Social Context and Family Relationships Are Important in Diabetes Care

Representative Photo: Gyan Shahane / Unsplash

• India has an increasing number of diabetic patients which is paying increasing attention to the individual choices and lifestyles of the people who make them sick.
• However, people’s relationships with others and social forces shape their health and their experience of illness, as well as the occurrence of chronic illnesses.
• “My ethnographic research on nursing and diabetes among the urban poor in Delhi has shown that nursing was never an individual choice,” writes anthropologist Emilija Zabiliūtė.

Kalavati1, a woman in her 60s, lives in an urban slum on the outskirts of Delhi. She no longer has insulin to inject every day. Every month she receives a free monthly supply of medication from the city’s All India Institute of Medical Sciences after being examined and tested there.

“I couldn’t go this time,” she tells me. “Nobody in the family would come with me.”

As in many other cases, our conversation about her diabetes concerns turns to her family – the challenges and happiness it brings. The importance of family relationships in the experience and care of patients with diabetes raises questions not only about access to health care, but also about the limits of medical approaches that focus on self-care and lifestyle when it comes to chronic disease.

India has an increasing number of diabetic patients which is paying increasing attention to the individual choices and lifestyles of people that make them sick and make them difficult to cope with their conditions. However, people’s relationships with others and social forces shape their health and their experience of illness, as well as the occurrence of chronic illnesses. And if medical practice is to take people’s relationships seriously, it must also be careful not to stereotype and pathologize them.

Over the past decade, more and more people have been diagnosed with diabetes in India. The International Diabetes Federation has forecast that the number of people with diabetes will have exceeded the 77 million mark in 2019 and that this number will almost double by 2045 – to 134 million2.

The disease is not new to the Indian subcontinent – it is even mentioned in native Ayurvedic medical writings – but the number of diagnoses and the awareness of chronic diseases together have marked a new era in Indian public health.

In this scenario, practitioners, media professionals and policy makers were more likely to focus on people’s lifestyles and their self-care practices3. As a complex and opaque category in itself, commentators use the term “lifestyle” to refer to specific habits that people maintain in their daily lives. The equally complex and ubiquitous term “self-care” – popularly, in the social sciences and in biomedicine – generally refers to what people do to manage their chronic illnesses and wellbeing.

Taken together, lifestyle and self-care are often perceived as choices that result from the exercise of free and rational will, in accordance with practices that conform to biomedical advice: healthy eating, exercise, introspection, and the proper use of medication.

However, we need to see both self-care and lifestyle choices in the context of social and cultural processes and historically conditioned socio-economic structures.

The turn in the public health system and in general medical discourse towards the increasingly important chronic diseases is rooted in the widespread acceptance of the legendary epidemiological transition theory. The theory holds that the leading causes of mortality will shift from infectious diseases to chronic diseases as countries’ economic development accelerates and the life expectancy of their populations increases.

The simplified approach that this transition implies has been criticized several times. Diseases such as cancer and diabetes have long coexisted with several infectious diseases, but the transition itself has a complex history4. Indeed, the transition makes the distribution of disease more unequal – because it emerges from colonial violence and the economic and racial domination of the global North and colonial powers5.

For example, sugar plantations and colonial labor management have resulted in some world populations suffering disproportionately from diabetes6. Similarly, a theory proposed by Indian doctors suggests that deprivation and maternal malnutrition increase the risk of diabetes7. This idea not only contradicts the myth that diabetes is a “middle class disease” that saves India’s poor from a “disease of the modern age”; it also shows a direct link between social and economic conditions and chronic diseases.

Another example of the influence of economic and social contexts on people’s lifestyles concerns unhealthy eating habits. It is known that foods that are considered unhealthy from a biomedical point of view are often cheaper, more readily available and aggressively promoted by the food processing industry. These facts reveal direct links between lifestyle and self-care on the one hand and social, political and economic forces and the environment on the other. And as such, we cannot reduce the reality of the people who consume these foods to individual choices.

So there are limits to how much we can determine the importance of lifestyles and choices when it comes to the incidence, prevention, and care of chronic diseases.

If lifestyle is determined by social forces, so is care. Looking at care outside the reach of biomedical self-care guidelines and from the perspective of social life serves to expand the narrow access to chronic diseases that hold individuals responsible for poor self-care.

For doctors dealing with chronic illness, a common problem is a non-compliant patient with a chronic illness who does not follow certain guidelines for self-care. Regarding individuals and their unique bodies, self-care counseling often neglects the fact that humans are fully relational beings8. People’s living and caring practices are associated with obligations and dependencies towards the caregivers in their lives.

My ethnographic research on nursing and diabetes among the urban poor of Delhi has shown that nursing has never been a matter of individual choice. In addition, care was not limited to practices directly related to the disease, such as B. following certain diets, exercising, and monitoring blood sugar levels. Instead, care encompassed various areas of life such as family finances, gainful employment and housework. These families saw many types of everyday activities as meaningful forms of caring for others and for themselves.

Self-care in the biomedical sense is only one form of care in this broad concept of care – and not even the most common.

People I interacted with thought of “caring” as an obligation to themselves and others that helps maintain their relationships and family ideals on a day-to-day basis. And their motivation to care for themselves and others could not only be traced back to their investment in their health, but based on their ideas about the relationships and the life they wanted to lead. In other words, patients and their family members generally did not (or did not) care for themselves and others, not because they consciously chose to do so in order to achieve certain goals, such as better health, but because they were entangled in complex social relationships .

For example, women often cited children and families as reasons to take care of their health. At the same time, some stated that family responsibilities leave them little time to deal with the demands associated with high sugar levels, for example. Kalavati also had to rely on her family for her hospital visits. For their family members, the challenges and willingness to respond to their needs depended on how time and financial resources were allocated in the family – and how this allocation was based on moral obligations to one another.

An emphasis on self-care that assigns responsibility to an autonomous individual creates a dissonance between medical advice and the everyday life of the patient. For example, think of an elderly woman worried about who will give her insulin shots after her daughter is married and lives elsewhere. Or think of a woman who feels that her diabetes is out of control when the family has other problems. In all cases, for these women it will not be a question of “how to live well with chronic illnesses” but rather “how to live well with others”. Illness is intertwined with their concerns about their relationships.

So how can doctors who deal with the chronically ill take advantage of the fact that people do things in life not just as autonomous actors, but because they share and live their lives with others? Of course, medical professionals do not completely ignore family care dilemmas. Research has shown that doctors, at least in India, pay attention to patient family relationships when diagnosing or defining mental disorders9.

While it is important to recognize the importance of social relationships, it is equally important not to reduce a patient’s relationships to a simplified scheme of social norms and expectations. In India, as in many other places, people have certain moral ideals regarding family welfare; however, they often remain too short and are challenged in everyday life10.

For example, family members do not always take care of one another, even when they want to and even when dominant societal norms expect it to be. However, a medical practice that pays attention to social relationships risks stereotyping and pathologizing them, especially if they do not meet societal expectations and moral norms. The challenge for medicine is to recognize the relationships of patients in certain situations and that their health habits and experiences are shaped by much larger contexts and factors than the autonomous will or the degree of adherence to biomedical guidelines.

The possibilities and constraints of patients and families to achieve good health and receive adequate care are profoundly social.

Emilija Zabiliūtė is an anthropologist working on public health, urban poverty and kinship issues in India. She works at the University of Copenhagen.

The research for this article is based on the University of Edinburgh funded by a Marie-Marie-Sklodowska-Curie Fellowship from the European Commission Research Fund (H2020-MSCA-IF-2017, Grant Agreement 798706).

source https://www.bisayanews.com/2021/09/12/india-why-social-context-and-family-relationships-are-important-in-diabetes-care/