Illness Experiences, Collective Decisions, and the Therapeutic Encounter in Indian Oncology

Abstract

Social science scholarship on cancer has been almost exclusively focused on Organization for Economic Cooperation and Development (OECD) countries, despite a significant epidemiological transition taking place in many non-OECD contexts, with cancer emerging as a prominent, and strongly feared, illness experience. With cancer gaining an increasingly high profile in India, there is an urgent need to explore how experiences of cancer may be socially and culturally embedded, and in turn, how localized practices may shape the therapeutic encounter. Here, drawing on interviews with 40 people living with cancer in Hyderabad, India, we focus on some specific components of their therapeutic journeys, including diagnostic and prognostic disclosure, collective versus individual decision making, the dynamics of medical authority, and the reception of cancer within their social milieu. These participants' accounts provide insight into a range of cultural sensibilities around illness and care, and reinforce the importance of understanding the cultural inflections of communication, decisions, and illness experiences.

Quality of Communication Process between Cancer Patients and Doctors

“…Patients, their family members, and clinicians are often stressed out by the factors related to socio-demographic and cultures. These factors will influence the choice of treatment methods adopted for diseases (26).…”

‘I don’t talk about my distress to others; I feel that I have to suffer my problems...’ Voices of Indian women with breast cancer: a qualitative interview study

“…Indian collectivist families promote interdependence rather than the 'individualism' of Western societies [29][30][31]. Indian women grow up in multi-generational households where the decision-making power rests with the male household members, initially fathers, then husbands, and then the adult son.…”

“…Indian women grow up in multi-generational households where the decision-making power rests with the male household members, initially fathers, then husbands, and then the adult son. Key decisions about treatment may be made by the oldest male relative or even by the whole family, but excluding the person being treated [31,32]. Exclusion from decision-making, exacerbated by language barriers, was a cause of psychological distress of Indian women in Canada [21].…”

Antimicrobial Resistance, Politics, and Practice in India

“…The "view from below" (i.e., from the perspectives of those caring, and eventually, those being cared for; Nundy & Gulhati, 2005) will provide critical insight into the range of competing forces, pressures from a clinician perspective, and may play out in a complex milieu such as AMR (Khan et al, 2019). Much of this work has been completed with clinicians in the Global North; for example, scholarship has routinely shown how acts of benevolence, professional norms, and legal/economic frameworks can shape the seemingly individualized "prescribing" of antibiotics (Broom et al, 2014(Broom et al, , 2015(Broom et al, , 2016a(Broom et al, , 2016b(Broom et al, , 2017a(Broom et al, , 2017b(Broom et al, , 2020a(Broom et al, , 2020b. Furthermore, such structural and social forces must necessarily be integrated into policy responses (e.g., Doron & Broom, 2019).…”