Social and Cultural Insights into Healthy Aging: A Qualitative Study from the South Indian City of Bengaluru, India.

BACKGROUND: Qualitative methods through lived experience narratives provide relevant sociocultural insights into healthy aging. OBJECTIVES: The aim of this qualitative study was to explore social and cultural perceptions of healthy aging from older adults (OAs), their next of kin, and those involved in providing services to OAs in Bengaluru, India. MATERIALS AND METHODS: We conducted in-depth interviews with 28 participants, all purposefully selected based on specific inclusion criteria, to get as varied a sample as possible. A pilot-tested, open-ended topic guide was used for every interview which was audio recorded with the permission of the respondent. Verbatim data were transcribed, reviewed for errors, and coded using NVivo 12 software and the framework analysis method of combining deductive and inductive codes. RESULTS: In total, 794 codes covering concepts of healthy aging, enablers and threats to healthy aging, and perspectives for the future were categorized into four themes supporting healthy aging, namely emotional well-being and a sense of purpose, family and social support, financial security, and health-care access. Each of these had a bearing on the OA's physical and mental health. Across socioeconomic groups, a sense of purpose at the level of the self, family, and society emerged as a key emotional sustainer. Social and economic deprivations were key threats to healthy aging and hence required social security and governmental interventions. CONCLUSION: Sociocultural economic factors are key to healthy physical and mental aging in the context of India. The same factor could be an enabler and in its absence a threat.

Urgent need for planetary health education for healthcare professionals and students in India.

The current climate crisis has had a significant negative impact on human health across the globe including India. Climate change is leading to global heating, rising sea levels and more severe extreme weather events such as floods, cyclones and droughts. These events have direct and indirect detrimental impacts on human health such as increased risk of water-related illnesses, vector-borne diseases, malnutrition due to food insecurity and pollution-related poor health. These effects are disproportionately borne by vulnerable communities, primarily low socioeconomic groups, women, children, and the elderly. Health professionals need to be upskilled to anticipate, diagnose and manage climate-related health issues and respond to environmental emergencies. The emerging transdisciplinary field of planetary health is based on the principle of protecting the planet to protect the health of humans. The authors argue that it is an ethical imperative to include planetary health education in the curricula of medical and other health professions in a way that would help ensure both climate resilience and social justice.

Understanding the Challenges of Intensive Care Staff in Communicating With Patients and Patients' Families During the COVID-19 Crisis: A Qualitative Exploration.

Background Coronavirus disease 2019 (COVID-19) isolation protocols in India restricted family members of COVID-19 patients from visiting them in hospitals and in intensive care units, especially during the peak of the pandemic. This along with the elaborate personal protective equipment (PPE) created challenges for intensivists and nurses in COVID ICUs in effectively communicating with patients and patients' families, especially in shared decision-making processes. Methods This article is the outcome of a qualitative study using in-depth one-on-one interviews with 10 intensivists and four intensive care nurses in two teaching hospitals in Bengaluru, South India. Each participant, purposively selected till data saturation was reached, had spent extensive periods of time in a COVID ICU during both COVID-19 waves in 2020 and 2021. A framework of descriptive phenomenology led to the design of the study in which varied experiences and insights of participants were captured using an interview guide to understand their lived reality. The interviews were conducted online or in person between July 2021 and October 2021 and were audio recorded and transcribed verbatim. Coding of transcripts using the NVivo 12 (Burlington, MA: QSR International Pty Ltd) software helped with the thematic analysis. This was guided by interpretive phenomenological methods that derived meaning from participants' life experiences. Results Four themes involving challenges in effective communication in the COVID ICU emerged as follows: physical barriers, emotional and mental stressors, infrastructural challenges, and ethical and moral dilemmas. Sub-themes included personal protective equipment as a barrier, reduced energy levels, and isolation of family from patients under the domain of physical challenges; fears of the unknown, handling death of patients in isolation, and the frustrations of families were challenges under the emotional and mental domain. Infrastructural/systemic challenges included poor connectivity and insufficient mobile phones, and the absence of rules to handle interruptions. Privacy breaches, taking consent over the phone, end-of-life discussions, and medico-legal risks emerged as the subthemes under the domain of ethical and moral challenges. A mobile phone communication policy specifying usage times and operating methods, a mandatory communication and counseling training module for intensivists and intensive care nurses, and a set of protocols for highly restrictive, intensive care units in pandemic situations were recommendations and lessons learned. Conclusions The lack of face-to-face interactions was a serious barrier to communication between ICU staff and patients and their caregivers. It had a bearing on trust levels and had emotional and ethical consequences for healthcare teams to handle. Opportunities for self-care, venting of anxiety and distress, and opportunities to celebrate and reward special efforts and cooperation between consultants, residents, nurses, and technicians in stressful environments like a pandemic ICU were important to sustain empathy and keep care and communication humane.

Perceptions of healthcare providers and mothers on management and care of severely wasted children: a qualitative study in Karnataka, India.

OBJECTIVES: To explore perceptions of healthcare providers and mothers of children with severe wasting on the perceived reasons for severe wasting, constraints on the management and barriers to caregiving and care-seeking practices. DESIGN: In-depth qualitative interviews conducted with healthcare providers and mothers of children with severe wasting. SETTING: Urban and rural locations in Karnataka state, India. PARTICIPANTS: Healthcare providers (anganwadi workers, accredited social health activists, auxiliary nurse midwives, junior health assistant, medical officers, nutrition counsellors) from public healthcare centres and mothers of children with severe wasting. RESULTS: Forty-seven participants (27 healthcare providers, 20 mothers) were interviewed. Poverty of households emerged as the underlying systemic factor across all themes that interfered with sustained uptake of any intervention to address severe wasting. Confusion of 'thinness' and shortness of stature as hereditary factors appeared to normalise the condition of wasting. Management of this severe condition emerged as an interdependent phenomenon starting at the home level coupled with sociocultural factors to community intervention services with its supplemental nutrition programme and clinical monitoring with therapeutic interventions through an institutional stay at specialist referral centres. A single-pronged malnutrition alleviation strategy fails due to the complexity of the ground-level problems, as made apparent through respondents' lived experiences. Social stigma, trust issues between caregivers and care-seekers and varying needs and priorities as well as overburdened frontline workers create challenges in communication and effectiveness of services resulting in perpetuation of severe wasting. CONCLUSIONS: To ensure a continuum of care in children with severe wasting, economic and household constraints, coordinated policies across the multidimensional determinants of severe wasting need to be addressed. Context-specific interventions are necessary to bridge communication gaps between healthcare providers and caregivers.

The Covid-19 effect on medical students' perceptions of their profession: A mixed methods study from South India.

Covid-19 has devastated human lives and stretched the limits of the medical profession and health systems. Using the mixed methods of online survey and online focus group discussions, we assessed how medical students and interns of two medical colleges in South India viewed the profession they had chosen. Of the 900 participants, 571(63.4%) had a positive perception of the medical profession, 77(8.6%) a negative perception and 252(28%) were undecided. The year of study in medical school was significantly associated with their perception of the medical profession, with interns more likely to have a negative perception. An overwhelming 823(91.4%) participants remained confident of their career choice, but a higher proportion of interns were less confident or regretful about their choice of profession compared to first to fourth year students. Most participants experienced moral distress; they acknowledged a duty to care but were troubled by personal risk, inadequate protection, and limited resources. Gaps were identified in medical and ethics training particularly regarding uncertainties and coping with deficiencies of the health system as encountered in the pandemic. The essential role played by doctors with its required competence, care and ethics cannot be assumed or expected without investment in the making of the future doctor through more socially embedded medical education imparting the skills of understanding the public, responding to them and being the advocate for their equitable and optimal care. An ethics of responsiveness emerges as important for healthcare, also for medical education in preparation for future health crises.

A Qualitative Study of Traditional Bone Setters in South India: A Case Series.

Introduction: There are approximately 60,000 Traditional Bone Setters (TBS) in India, who have no formal education or training in modern medicine but treat approximately 60% of bone related trauma. This study investigated the history of TBS, why they are so popular, and their methods. Methods: From a list of TBS from four states in South India, a purposive and convenience sampling method identified participants. One lead TBS from each state was interviewed. With recommendations from these TBS, a total of six participants were interviewed on Zoom® in their native dialect and these interviews were transcribed into English. The data were analyzed using a constant comparative method which included several iterations to refine common themes and determine counterfactual and specific focal points from each interview. Results: Six overarching themes emerged: (1) history of traditional bone setters, (2) occupations outside bone setting, (3) training, certification, education, accolades, (4) patient characteristics and success stories, (5) infrastructure and approach to diagnosis/treatment, and (6) limitations of practice, challenges, and social relevance. The history of traditional bone setting is thousands of years old and passed down within families generationally. Conclusions: In rural India, where a large part of the population lives in poverty and without access to modern medicine, traditional healers provide a much-needed service, often without charge, and consequently, the income is not sufficient without other occupations such as farming. They follow a similar approach to diagnosis and treatment of simple fractures and dislocations as modern medical practitioners. Most would like to share their knowledge and collaborate with ayurvedic and allopathic practitioners and simply want to be respected and supported.

Between paternalism and illegality: a longitudinal analysis of the role and condition of manual scavengers in India.

Manual scavengers, or 'Safai Karamcharis', as they are known in India, are sanitation workers who manually clean human waste for a living and face considerable occupational health risks. They are subject to deep-seated, caste-based stigma associated with their perceived 'caste impurity' and lack of cleanliness, which result both in consistently dangerous substandard working conditions and lack of social mobility, with women facing greater hardships. The COVID-19 pandemic has further exacerbated their plight. Despite the considerable efforts of social advocates, organised movements and government institutions, reforms and criminalisation have produced mixed results and campaigners remain divided on whether banning manual scavenging is an effective solution. This article reviews the history of attempts to address scavenging in India. Starting in the colonial period and ending with the current government's Swachh Bharat Mission, it highlights how attempts to deal with scavenging via quick-fix solutions like legal bans criminalising their employment, infrastructure upgrades or paternalistic interventions have either failed to resolve issues or exacerbated scavengers' situation by pushing long-standing problems out of view. It argues that meaningful progress depends on abandoning top-down modes of decision-making, addressing the underlying sociocultural and infrastructural factors that perpetuate the ill health and social conditions of manual scavengers, collecting data on the true extent of scavenging, and investing in and providing political agency to communities themselves.

Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India.

Background: The promise of biobanking and genetic research (BGR) in the context of translational research towards improving public health and personalised medicine has been recognised in India. Worldwide experience has shown that incorporating stakeholders' expectations and values into the governance of BGR is essential to address ethical aspects of BGR.  This paper draws on engagement with various stakeholders in the South Indian city of Bengaluru to understand how incorporating people's values and beliefs can inform policy making decisions and strengthen BGR governance within India. Methods: We adopted a qualitative research approach and conducted six focus group discussions with civil society members and seven in-depth interviews with key informants in BGR, identified through a targeted web search and snowballing methods, until data saturation was reached. Data were thematically analysed to identify emergent patterns. Results: Specific themes relating to the ethics and governance of BGR emerged. Fears and uncertainty about future sample and data use, possibilities of discrimination and exploitation in the use of findings and the lack of comprehensive data protection policies in India along with expectations of enhanced contributor agency, control in future use of samples and data, benefit sharing, enhanced utility of samples, sustained BGR and public good, reflected tensions between different stakeholders' values and beliefs. Fair governance processes through an independent governance committee for biobanks and a system of ongoing engagement with stakeholders emerged as best practice towards building trust and respecting diversity of views and values. Conclusions: Ensuring public trust in BGR requires listening to stakeholders' voices, being open to counter narratives, and a commitment to long term engagement embedded in principles of participatory democracy. This is central to a 'people-centred governance framework' involving a negotiated middle ground and an equilibrium of governance which promotes social justice by being inclusive, transparent, equitable, and trustworthy.

Perceptions about controlled human infection model (CHIM) studies among members of ethics committees of Indian medical institutions: A qualitative exploration.

Introduction: Controlled Human Infection Model (CHIM) studies provide a unique platform for studying the pathophysiology of infectious diseases and accelerated testing of vaccines and drugs in controlled settings. However, ethical issues shroud them as the disease-causing pathogen is intentionally inoculated into healthy consenting volunteers, and effective treatment may or may not be available. We explored the perceptions of the members of institutional ethics committees (IECs) in India about CHIM studies. Methods: This qualitative exploratory study, conducted across seven sites in India, included 11 focused group discussions (FGD) and 31 in-depth interviews (IDI). A flexible approach was used with the aid of a topic guide. The data were thematically analyzed using grounded theory and an inductive approach. Emerging themes and sub-themes were analyzed, and major emergent themes were elucidated. Results: Seventy-two IEC members participated in the study including 21 basic medical scientists, 29 clinicians, 9 lay people, 6 legal experts and 7 social scientists. Three major themes emerged from this analysis-apprehensions about conduct of CHIM studies in India, a perceived need for CHIM studies in India and risk mitigation measures needed to protect research participants and minimize the associated risks. Conclusion: Development of a specific regulatory and ethical framework, training of research staff and ethics committee members, and ensuring specialized research infrastructure along with adequate community sensitization were considered essential before initiation of CHIM studies in India.

Reflective narratives during the Covid-19 pandemic: an outlet for medical students in uncertain times.

Reflective narratives on personal experiences, observations, thoughts and concerns were used as a method of helping medical students process the Covid-19 pandemic and their lives. This involved individual writing, anonymous submission, on-line group reading of selected narratives on a voluntary basis and facilitated discussions. Students felt that this was a safe method to voice their feelings and thoughts, to understand themselves better and to gain new perspectives. Though small numbers of students participated, there appears to be a greater potential to use reflective narrative writing coupled with facilitated group discussions in medical education to help students cope with external and internal stress, to better understand themselves, to relate to others and possibly to become more empathic. Keywords: Education, medical, reflective narrative, Covid-19, wellbeing strategies, humanities, medical students.

Public perceptions on Controlled Human Infection Model (CHIM) studies-a qualitative pilot study from South India.

Research using Controlled Human Infection Models is yet to be attempted in India. This study was conducted to understand the perceptions of the lay public and key opinion makers prior to the possible introduction of such studies in the country. 110 respondents from urban and rural Bangalore district were interviewed using qualitative research methods of Focus Group Discussions and In-depth Interviews. The data was analyzed using grounded theory. Safety was a key concern of the lay public, expressed in terms of fear of death. The notion of infecting a healthy volunteer, the possibility of continued effects beyond the study duration and the likelihood of vulnerable populations volunteering solely for monetary benefit, were ethical concerns. Public good outcomes such as effective treatments, targeted vaccines and prevention of diseases was necessary justification for such studies. However, the comprehension of this benefit was not clear among non-medical, non-technical respondents and suggestions to seek alternatives to CHIMs repeatedly arose. There was a great deal of deflection-with each constituency feeling that people other than themselves may be ideally suited as participants. Risk takers, those without dependents, the more health and research literate, financially sound and those with an altruistic bent of mind emerged as possible CHIM volunteers. While widespread awareness and advocacy about CHIM is essential, listening to plural voices is the first step in public engagement in ethically contentious areas. Continued engagement and inclusive deliberative processes are required to redeem the mistrust of the public in research and rebuild faith in regulatory systems.

Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.

Background: There is growing interest in advancing biobanking and genetic research in many countries, including India. Concurrently, more importance is being placed on participatory approaches involving the public and other stakeholders in addressing ethical issues and policymaking as part of a broader governance approach. We analyse the tools, purposes, outcomes and limitations of engaging people towards biobanking and genetic research governance that have been undertaken worldwide, and explore their relevance to India. Methods: Papers to be reviewed were identified through a targeted literature search carried out using ProQuest and PubMed. Retrieved papers were analysed with the Rpackage for Qualitative Data Analysis using inductive coding and thematic analysis, guided by the Framework Method. Results: Empirical studies on public and community engagement in the context of biobanking and or genetic research show a predominance towards the end of the last decade, spanning 2007 to 2019. Numerous strategies-including public meetings, community durbars, focus group discussions, interviews, deliberations, citizen-expert panels and community advisory boards-have been used to facilitate communication, consultation and collaboration with people, at the level of general and specific publics. Engagement allowed researchers to understand how people's values, opinions and experiences related to the research process; and enabled participants to become partners within the conduct of research. Conclusions: Constructs such as 'co-production', 'engagement of knowledges', 'rules of engagement' and 'stewardship' emerge as significant mechanisms that can address the ethical challenges and the governance of biobanking and genetic research in India. Given the inherent diversity of the Indian population and its varying cultural values and beliefs, there is a need to invest time and research funds for engagement as a continuum of participatory activity, involving communication, consultation and collaboration in relation to biobanking and genetic research. Further research into these findings is required to explore their effective employment within India.

The making of a "Citizen Doctor": How effective are value-based classes?

In 2018, the Division of Health and Humanities at St John's Research Institute introduced the "Citizen Doctor" course for first year medical students at St. John's Medical College. The focus was to expose future doctors to the wider framework of health and invoke a sense of citizenship, responsiveness, and critical thinking. Classes in Environmental sciences and the Constitution of India, advocated as beneficial for all undergraduate students in India, were used as the basis to design the Citizen Doctor Course. This paper is an evaluation of this innovative course. A structured feedback questionnaire was administered to students at the end of the course; an overwhelming majority found that these classes helped them identify and understand contemporary social and environmental issues. It evoked a sense of wider responsibility and responsiveness, thus laying the foundation for a "citizen doctor". The evidence suggests that this course should continue and expand to other years and other medical colleges Keywords: citizen, humanities, environmental science, constitution of India, social determinants of health, medical education.

The Eternal Grove - A garden of remembrance.

The Health and Humanities division, St John's Medical College, together with the student-led environment body Ecologics, initiated the plan to have a garden space dedicated to the remembrance of those who have donated their bodies to medical education.

'Life after Death - the Dead shall Teach the Living': a Qualitative Study on the Motivations and Expectations of Body Donors, their Families, and Religious Scholars in the South Indian City of Bangalore.

In India, there has been a shift from using unclaimed bodies to voluntary body donation for anatomy dissections in medical colleges. This study used in-depth qualitative interviews to explore the deeper intent, values and attitudes towards body donation, the body and death, and expectations of the body donor (N = 12), as well as their next of kin (N = 7) and representative religious scholars (N = 12). All donors had enrolled in a body bequest programme in a medical school in South India. This study concludes that body donors are philanthropists with deep-rooted values of altruism and service, who are often willing to forgo traditional religious and cultural death rituals. The next of kin are often uncomfortable with the donor's decision, and this suggests that it is important that dialogue/counselling occurs at the time of the bequest, if the donor's wishes are to be respected. Religious injunctions are often misinterpreted; this implies that religious leaders/scholars can play a significant role in addressing these misconceptions which are barriers to body donation. Body bequest programmes in India may be enhanced by positioning body donation as 'daana'-giving without any expectation of return for a higher purpose, including ceremonies of respect in medical colleges. Furthermore, increased public engagement and awareness about body bequest programmes are also important to enhance participation. When medical students internalise what body donors expect of them, i.e. altruism, empathy with patients and becoming 'good doctors', it will help to ensure that the donation was not in vain and that the dead truly teach the living.

Engagement and social acceptance in genome editing for human benefit: Reflections on research and practice in a global context.

While there are both practical and ethical reasons for public engagement in science and innovation, real-world detailed examples of engagement practice and the lessons to come from these are still hard to find. This paper showcases three contextually diverse case studies of engagement practice. Case 1 recounts the experiences of a government-funded initiative to involve scientists and policy makers as science communicators for the purpose of engaging the Argentine public on gene editing. Case 2 describes the research methodologies used to elicit diverse stakeholder views in the face of political uncertainty and institutional distrust in India. Finally, case 3 unpacks the tensions and gaps with existing international guidelines for ensuring local voices are respected in community decision-making in Burkina Faso. Each case shares its own compelling rationale for selecting the engagement method chosen and details the challenges encountered along the way. Each case shares its vision for creating legitimate opportunities for broader societal involvement in the planning, conduct and delivery of responsible science. These cases demonstrate the nuances, sensitivities and challenges of engaging with publics and broader stakeholders in discussions about genome editing for human benefit.

The Parallel Arts Festival at the 14th World Congress of Bioethics and the 7th National Bioethics Conference, Bengaluru.

The theme of the 14th World Congress of Bioethics (WCB) was "Health for All in an Unequal World; Obligations of Global Bioethics". The Parallel Arts Festival was embedded within the programme of the Congress and curated to reflect its theme.

Consultation on the feasibility and ethics of specific, probable Controlled Human Infection Model study scenarios in India: A report.

On March 6, 2019, a workshop was held as part of a larger public consultation exercise to evaluate the perceptions of participants from diverse backgrounds of studies involving Controlled Human Infection Models (CHIMs) (1,2) in India, through three specific case scenarios. This workshop was organised by the Health and Humanities Division of the St. John's Research Institute, Bangalore with funding from the Translational Health Science and Technology Institute (TSHTI), Faridabad (www.thsti.res.in), an autonomous institute of the Department of Biotechnology, Government of India This was an on-going effort of the Division to bring public discourse centre stage in the discussion on the use, ethics and regulations related to CHIM studies, and the introduction of such studies in India. Participants included epidemiologists, community/public health experts, microbiologists, infectious disease specialists, basic and translational scientists, ethicists, journalists and lawyers.

Health for all in an unequal world: Obligations of global bioethics.

The theme of the joint 14th World Congress of Bioethics and 7th National Bioethics Conference Congress "Health for all in an unequal world: Obligations of global bioethics" is of critical relevance in the present global context. Although the world is better off in terms of improved health status of people by many measures than before, there exist colossal gaps across and within populations. Much needs to be done to respond to the lack of access to healthcare, poor quality of living and working conditions, and deteriorating quality of overall environment which affects more adversely the already deprived. We take this opportunity to make a few observations about the current status of affairs on this front, and offer brief analytical insights into the complex origins of the global health scenario characterised by disparities. We revisit the original conception of bioethics and suggest that it is well placed to respond to the current global crisis of inexorably widening disparities in health and wealth, and that global bioethics has an obligation to engage with this crisis.

Public engagement in the context of a CHIM study.

Public engagement especially in new and contested areas of medical research is an essential ethical requirement. It helps to build trust, to embed ethical discourse in public beliefs and values and widen the accountability and the governance of biomedical research. Historically, ethical codes resulted from public protest following unethical medical research practices. Unethical practices do continue to a certain extent, primarily among unempowered communities. The need for public awareness, public deliberation and public advocacy are even more important in a country like India, where "research" is not understood, where paternalism on the part of the health professional, and the non-questioning attitude of the patient/participant have been customary, followed in recent times, by mistrust and an expectation of corruption in the public mind when dealing with a healthcare set up. CHIM studies carry various levels of unknowns. There are challenges of public non-comprehension of the need for being 'infected'; of families and communities being at risk; of possible high levels of compensation being offered as inducements; of other public health / preventive measures being supplanted. It is important for researchers and regulators in India not to rush into implementing such studies but to first engage with the public, listen to their concerns; and initiate deliberative mechanisms for public - researcher dialogue; and invest in public advocacy.