Periodic Reporting for period 1 - LIDIA (Living with Others, Living with Diabetes: Relational Care among Diabetes Patients in Delhi, India)
Période du rapport: 2018-09-03 au 2020-09-02
This research project has contributed to the fields of cultural and social anthropology, South Asian studies and public and global health by examining relational care among diabetes patients and their families in Delhi, India. In the face of the ‘global diabetes epidemic’, 70 mln. of affected patients live in India. Addressing diabetes epidemic efficiently and innovatively requires a global perspective explaining the underpinnings of diabetes globally and in specific social, cultural and economic contexts. The project has generated knowledge an in-depth understanding of how diabetes care and care more generally is enfolded in patient’s familial and community relationships in the everyday settings, and how patients’ experience, treatment and encounters with medical institutions are dependent on their social relations.
The research project has challenged the conventional understanding of diabetes care that focuses on individual lifestyle choices and self-care. Bringing diverse ethnographic material and literature together, it has demonstrated how both, lifestyle and care are deeply social and relational, and cannot be reduced to autonomous individual choices made by social actors. Diabetes experience and care in India are tightly linked to kinship and community relational norms, related ethical regimes and significant life events. However, while it is depended on people’s social relationships, diabetes care cannot be reduced merely to normative moral regimes about family care provision. Just like kinship relationships are not necessarily supportive and facilitate positive experience in people’s lives, so too diabetes experience is often underscored by contestations and ethical dilemmas about care and its distribution in domestic realm. These research findings help rethink diabetes care beyond the clinical settings and improve our understanding of patients in their social worlds without stigmatising and stereotyping them.
By drawing attention to diabetes patients’ and their families’ social lives, the project paves the way for impacting and improving patients’ overall experience and medical interventions that focus on diabetes care in everyday life beyond clinical settings.
The project achieved the following aims:
First, it has gathered and analysed an in-depth ethnographic data about relational care among diabetes in India and has initiated anthropological account contributing to the social science debates on care and diabetes in India. Second, the project situated this data against the social and economic context in India in order to compare diabetes experience among patients from middle-class and poor backgrounds. Third, the project has contributed to the existing social science approaches to diabetes care by developing theoretical insights about the role of kin and community relationships in care provision. Fourth, the project has generated new knowledge and debate about the role of familial care and kinship in diabetes that is scalable and facilitates understanding of other chronic conditions beyond diabetes and in diverse sociocultural contexts beyond India. Fifth, the project has consolidated researcher’s research profile and career development through diverse training activities and participation in research community at the University of Edinburgh and internationally. Finally, the research project results were disseminated over academic, general and professional audiences.
The research project has challenged the conventional understanding of diabetes care that focuses on individual lifestyle choices and self-care. Bringing diverse ethnographic material and literature together, it has demonstrated how both, lifestyle and care are deeply social and relational, and cannot be reduced to autonomous individual choices made by social actors. Diabetes experience and care in India are tightly linked to kinship and community relational norms, related ethical regimes and significant life events. However, while it is depended on people’s social relationships, diabetes care cannot be reduced merely to normative moral regimes about family care provision. Just like kinship relationships are not necessarily supportive and facilitate positive experience in people’s lives, so too diabetes experience is often underscored by contestations and ethical dilemmas about care and its distribution in domestic realm. These research findings help rethink diabetes care beyond the clinical settings and improve our understanding of patients in their social worlds without stigmatising and stereotyping them.
By drawing attention to diabetes patients’ and their families’ social lives, the project paves the way for impacting and improving patients’ overall experience and medical interventions that focus on diabetes care in everyday life beyond clinical settings.
The project achieved the following aims:
First, it has gathered and analysed an in-depth ethnographic data about relational care among diabetes in India and has initiated anthropological account contributing to the social science debates on care and diabetes in India. Second, the project situated this data against the social and economic context in India in order to compare diabetes experience among patients from middle-class and poor backgrounds. Third, the project has contributed to the existing social science approaches to diabetes care by developing theoretical insights about the role of kin and community relationships in care provision. Fourth, the project has generated new knowledge and debate about the role of familial care and kinship in diabetes that is scalable and facilitates understanding of other chronic conditions beyond diabetes and in diverse sociocultural contexts beyond India. Fifth, the project has consolidated researcher’s research profile and career development through diverse training activities and participation in research community at the University of Edinburgh and internationally. Finally, the research project results were disseminated over academic, general and professional audiences.
The project researcher has conducted fieldwork, gathered and analysed an in-depth ethnographic data and interviews and has initiated anthropological account contributing to the social science debates on care and diabetes in India. The project has generated new knowledge and debate about the role of familial care and kinship in diabetes that is scalable and facilitates understanding of other chronic conditions beyond diabetes and in diverse sociocultural contexts beyond India.
The researcher’s research profile and career development have been consolidated through diverse training activities and participation in research community at the University of Edinburgh and internationally. The researcher has participated in numerous talks, research seminars and conferences. She has received training in academic skills, such as publishing, Hindi, editing and reviewing scientific journal articles, writing grant applications, publishing first academic book, and ethical research practice. The researcher has gained new skills in higher education by giving guest lectures on several courses at the SSPS of the University of Edinburgh, and acting as an MA thesis advisor and examiner. The researcher has organised and convened an international workshop on chronic illness kinship and family care.
The research project has disseminated research results over academic, general and professional audiences. It resulted in publications and in-preparation manuscripts for academic research journals, including a special issue article collection, an academic blog post, a book review, a book forum piece and a book proposal manuscript. The project has achieved impact and reached the stakeholders - organisations working on diabetes globally and in India, and presented them with the research results. She has also prepared a policy brief and disseminated it to the organisations.
The researcher’s research profile and career development have been consolidated through diverse training activities and participation in research community at the University of Edinburgh and internationally. The researcher has participated in numerous talks, research seminars and conferences. She has received training in academic skills, such as publishing, Hindi, editing and reviewing scientific journal articles, writing grant applications, publishing first academic book, and ethical research practice. The researcher has gained new skills in higher education by giving guest lectures on several courses at the SSPS of the University of Edinburgh, and acting as an MA thesis advisor and examiner. The researcher has organised and convened an international workshop on chronic illness kinship and family care.
The research project has disseminated research results over academic, general and professional audiences. It resulted in publications and in-preparation manuscripts for academic research journals, including a special issue article collection, an academic blog post, a book review, a book forum piece and a book proposal manuscript. The project has achieved impact and reached the stakeholders - organisations working on diabetes globally and in India, and presented them with the research results. She has also prepared a policy brief and disseminated it to the organisations.
The research project has challenged the conventional understanding of diabetes care that focuses on individual lifestyle choices and self-care. Bringing diverse ethnographic material and literature together, it has demonstrated how both, lifestyle and care are deeply social and relational, and cannot be reduced to autonomous individual choices made by social actors. Diabetes experience and care in India are tightly linked to kinship and community relational norms, related ethical regimes and significant life events, such as familial loss. However, while it is depended on people’s social relationships, diabetes care cannot be reduced merely to normative moral regimes about family care provision. These research findings help rethink diabetes care beyond the clinical settings and improve our understanding of patients in their social worlds without stigmatising and stereotyping them. Furthermore, the data indicates how middle-class women assert gendered identity in relationship to self-care and chronic-illness challenges. This expands the accounts of women neglecting their health in order to care for their families. Women contest and confront such discourses of gendered sacrifice.
By drawing attention to diabetes patients’ and their families’ social lives, the project paves the way for impacting and improving patients’ and their families’ overall experience in seeking care and caring for themselves and others in everyday life. By emphasizing the need for attention to non-normative understating of family care and family-centred approach to care and lifestyle guidelines, the project has a potential to improve medical interventions and medical guidance and advise for patients in medical outpatient settings. It’s focus on both, urban poor and middle class highlight the class inequalities and argues for a strengthened public health policies that include family-centred approach and comprehensive primary healthcare. Finally, the project can potentially be commercially exploited by private medical practitioners and pharmaceutical industry who develop diabetes care packages and devises for self-care in domestic settings.
By drawing attention to diabetes patients’ and their families’ social lives, the project paves the way for impacting and improving patients’ and their families’ overall experience in seeking care and caring for themselves and others in everyday life. By emphasizing the need for attention to non-normative understating of family care and family-centred approach to care and lifestyle guidelines, the project has a potential to improve medical interventions and medical guidance and advise for patients in medical outpatient settings. It’s focus on both, urban poor and middle class highlight the class inequalities and argues for a strengthened public health policies that include family-centred approach and comprehensive primary healthcare. Finally, the project can potentially be commercially exploited by private medical practitioners and pharmaceutical industry who develop diabetes care packages and devises for self-care in domestic settings.