Suhita Chopra Chatterjee

The Experiences of Adolescents With Thalassemia in West Bengal, India

In disadvantaged settings, where medical and socioeconomic support structures are inadequately developed, adolescent thalassemic patient respondents (ATPRs) live a dismal existence. In this article, the authors explore the experiences of ATPRs in West Bengal, India, with a view to addressing the question of whether thalassemia can be considered a disability, using a qualitative research design involving a purposive sampling method. The authors conducted in-depth interviews with 36 patients. The findings show that culture and education play a major role in illness experiences. The consequence of thalassemia is extremely stressful, and patients face a variety of physical, psychological, and social problems. Considering these experiences, the study concludes that thalassemia might be officially considered as a disability in India, requiring a multiple theoretical as well as a multipronged intervention method to tackle it adequately.

Discourses on aging and dying

Introduction PART 1 AGING AND DYING: SPIRITUAL PERSPECTIVES Aging and Dying - The Vedantic Perspective - Swami H H Bhaktisvarupa Damodaran (Dr T D Singh) The Art of Dying with Dignity - Swami Prabhananda Life and Immortality in Indian Thought - Swami Jitatmananda Death and Dying in Islam: Psychological and Spiritual Perspectives - Manisha Sen and Shafi Shaikh Death and Dying: A Buddhist Analysis - Madhumita Chattopadhay The Buddhist Way to Overcome Jara-Maranam - Aiswarya Biswas Death as Divine Wedding - The Sant-Mat Perspective - P Bhatnagar PART II AGING AND DYING: ISSUES IN THE CARE OF THE ELDERLY Socio-Ethical Issues in the Existing Paradigm of Care for the Older Persons: Emerging Challenges and Possible Responses - Anupama Datta Gender Issues in Care Giving - Amrita Bagga Views on Aging and Dying Among Middle Class Bengali Hindu Elderly Residents of Kolkata - Paromita Ghosh and Anindita Dey A Plea for a Holistic Approach to Aging PART III AGING AND DYING: END-OF-LIFE CARE - K R G Nair Old Age, Disease and Terminal Care: A Hindu Perspective - S K Jindal Paternalistic Decisions for the Comate and Dying Aged: A Neo-Vedantic Perspective - K J George Dying with Dignity - Chandralekha Duttagupta Culture Specific and Culture Sensitive End-of-Life Care: A Case Study Based on Kashi Labh Mukti Bhawan, Benaras - Umesh K Singh Index

Understanding the Experiential World of the Dying: Limits to Sociological Research

In recent years there has been a proliferation of literature on Sociology of Dying. However, sociologists often treat the experience of those who are critically ill as similar to those who are really dying. This article argues that the level of emotional experience of one who is facing death is different from one who is critically ill but can intellectually anticipate it as the end of ones existence. In other words, dying, though mostly contiguous with illness experience, is not to be treated as synonymous with it. This study further shows how the complex issues related to the dying persons world defy a systematic sociological enquiry, as many of the conventional methods of sociological research fail to gain access to the self of the dying. It concludes by suggesting the need for a thoroughgoing rejuvenation of sociological methods and theories to accommodate the dying phenomenon.

Challenges Faced by Accredited Social Health Activists (ASHAs) in a Vulnerable Block of Odisha, India:

Abstract Janani Suraksha Yojna (JSY), implemented under the National Rural Health Mission (NRHM) since 2005, focused on strengthening accredited social health activists (called ASHAs) to improve maternal health in the community. The purpose of this paper is to identify various issues and challenges faced by the ASHAs in pregnancy care under JSY. Focus group discussions and in-depth interviews were conducted with ASHAs employed in tribal pockets of Jaleswar block, which may be considered a vulnerable area due to its demographic profile and inaccessible terrain. Data were analysed and grouped thematically based on government operational guidelines. The study shows ASHAs face challenges in various stages of pregnancy care, particularly during antenatal and natal stages. There are considerable limitations in identifying target groups, assisting pregnant women and in providing counseling. Many of them stem from their poor capacity to operate in vulnerable communities, thereby, showing inadequate training and capacity building of the ASHAs. The paper concludes by proposing a model for improving competency of ASHAs by taking into account both administrative as well as community inputs.

Spiritual Interventions in Grief Resolution: A Personal Narrative

This article is a personal narrative of grief and bereavement following the sudden, unexpected death of the authors husband. The author identifies the complex array of emotions that she underwent, which transposed her into a world where survival lost its purpose, and the world its coherence. The different components of Hindu understanding and the practice of spirituality which helped her to address these emotional issues and resolve her grief are discussed. In addition, the article tries to chart out the actual process of the awakening of the spiritual orientation which gave her a new meaning and purpose in life.

Death and the Discourse of the Body

A meaningful discourse on death needs to take into account the various ways in which the body is “constructed” in different cultures. Biomedicine, which is rooted in western culture, places a great deal of importance on the body and this creates an anxiety over death. In contrast, the Indian science of medicine draws heavily from an ancient philosophical tradition in which metaphysical ideas about the soul have contributed to the relative insignificance of the body. Both disease and death have been understood in meta-body terms and there is a cultural embrace of death rather than its denial. The article concludes by suggesting the need to move away from sheer biological essentialism in understanding the human dimension of death in different cultures.

Food in Captivity: Experiences of Women in Indian Prisons:

This article demonstrates how prison food is controlled by the state through denying female prisoners’ choices in food consumption and excluding them from active roles in cooking. Narratives of women in three prisons of India have been used to analyze their experiences with prison food. A majority of inmates perceived food as negatively affecting their health during imprisonment. Some were found to use it as a medium to recreate special identities for themselves, contesting the power of the prison. The study suggests the need for better articulation of the intricate relationship between power, health, and food in Indian prison settings.

Dying in intensive care units of India: Commentaries on policies and position papers on palliative and end-of-life care ☆ ☆☆

Purpose: This study critically examines the available policy guidelines on integration of palliative and end‐of‐life care in Indian intensive care units to appraise their congruence with Indian reality. Materials and methods: Six position statements and guidelines issued by the Indian Society for Critical Care Medicine and the Indian Association of Palliative Care from 2005 till 2015 were examined. The present study reflects upon the recommendations suggested by these texts. Result: Although the policy documents conform to the universally set norms of introducing palliative and end‐of‐life care in intensive care units, they hardly suit Indian reality. The study illustrates local complexities that are not addressed by the policy documents. This include difficulties faced by intensivists and physicians in arriving at a consensus decision, challenges in death prognostication, hurdles in providing compassionate care, providing “culture‐specific” religious and spiritual care, barriers in effective communication, limitations of documenting end‐of‐life decisions, and ambiguities in defining modalities of palliative care. Moreover, the policy documents largely dismiss special needs of elderly patients. Conclusion: The article suggests the need to reexamine policies in terms of their attainability and congruence with Indian reality. HighlightsSince early 2000, India has joined the global discourse on implementing EoLC within ICUs.Policies, position statements, and guidelines related to foregoing life support treatments and introducing palliative care and EoLC within ICU are critically reviewed with reference to the contextual realities.The “oversimplistic” EoLC recommendations proposed in these documents overlook the medicolegal and medicoethical complexities prevailing in the country.Also, voices of nurses and large group of health care professionals are excluded, “culture” is undermined, heterogeneity in the ICU infrastructure is unaddressed, and “risk aversion” aptitude of the physicians is apparent in the documents.These documents need to be recast to suit Indian reality.

Assessment of private homes as spaces for the dying elderly

Aim: This study makes an assessment of end-of-life care of the elderly in private homes in Kolkata, West Bengal, India. Participants and Methods: Primary data were collected from private homes which supported elder care through observation and semi-structured interviews with primary family caregivers of the elderly. Results: The study finds that the major factors preventing private homes from providing adequate care to the elderly were architecturally inadequate housing conditions, paucity of financial support, and scarcity of skilled caregivers. Besides, considerable neglect and domestic abuse of the elderly was also found in some private homes. In addition, the peripheral location of private homes within public health framework and inadequate state palliative policy, including stringent narcotic regulations, accentuated the problems of home care. Conclusion: The study concludes by questioning the rhetoric of private homes as spaces for the dying elderly in Kolkata and suggests remedial measures to improve their capacity to deliver care.

Dissociated reality vis-a-vis integrative planning of AYUSH in Maternal Health Program: A situational analysis in Jaleswar block of Balasore district of Odisha, India

Mainstreaming of AYUSH and revitalization of local health traditions is one of the innovative components of the National Rural Health Mission (NRHM) in the state of Odisha, India. In this study, an attempt was made to assess the potential of collocating AYUSH to improve maternal health services in tribal dominated Jaleswar block of the Balasore district. In addition, the study aimed at unearthing the underlying challenges and constraints in mainstreaming AYUSH and linking it with the Maternal Health Program. Review of the policy documents and guidelines, both central and state government, was made to assess the implementation of AYUSH in Odisha. Primary data were collected through interviews with AYUSH doctors, district and block level health administrators, and tribal women. The study revealed the inadequacy of basic amenities, infrastructure, drugs, and consumables in the health centers for integrating AYUSH in the delivery of maternal health services. Analysis of the job chart and work pattern of AYUSH doctors showed underutilization of their specialized knowledge to treat patients. Lack of continued medical education, standard operating procedures for treatment and spatial marginalization made suboptimal utilization of AYUSH services. This is unfortunate given the fact that such regions are economically underdeveloped and already have a distinct orientation toward indigenous health systems. AYUSH, on account of its holistic approach and proven cost-effectiveness, could be a viable option for improving maternal health in the region. The study concluded that although there is huge scope for integrating AYUSH in Maternal Health Program under the ongoing NRHM, the full potential is yet to be exploited.