Encounters with power : health care seeking and medical encounters in tuberculosis care : experiences from Ujjain District, India

Sammanfattning: Background: Tuberculosis (TB) has been declared a government priority in India and public TB care is delivered by the Revised National Tuberculosis Control Programme (RNTCP). Despite having achieved a significant increase in reported cure rates and coverage, the RNTCP is associated with access barriers and there is no indication that the incidence of TB is declining. Private health care providers play a significant role in the delivery of tuberculosis care. While medical encounters in the private health care sector are described as patient-friendly, the encounters in the public health care sector are reportedly poor. Aim: This study examines health care seeking and medical encounters in the context of TB care in a rural district in central India. More specifically, the study focuses on how relations of power between health care providers and patients are created, altered and maintained during medical encounters in a diversified health system. Methods: The study was conducted in Ujjain district, Madhya Pradesh, India. In paper I, we conducted a population-based screening survey within a demographic surveillance site (n= 45,719) to identify and interview individuals who had had a cough for more than three weeks (paper I). In papers II-IV, I used qualitative methods including semi-structured interviews with 22 health care providers purposively selected from the public and private health care sectors in rural and urban areas (paper II), non-participant observations, including qualitative interviews, in four private health care clinics (paper III) and at a district tuberculosis centre (paper IV) and, finally, semi-structured interviews with 14 TB patients (paper III). Findings: Among the individuals with a cough (477 men and 167 women), 69% of the men and 71% of the women reported seeking health care, and the majority of both men and women visited a private provider first. Only 13% of those seeking care reported having had a sputum smear examination since the onset of their cough. In the medical encounters, health care providers adopted an authoritarian as well as a consumerist approach. The authoritarian approach was encapsulated in health care providers’ perceived need to persuade or force “the ignorant patient” to follow their advice. While young women in particular were perceived as incapable of understanding the doctor, the interactions between health care providers and female patients were often restricted because of gendered norms for communication. When guided by consumerism, private health care providers tried to meet patients’ needs and expectations, and an informal support system to the ‘poor’ was established through negotiations around treatment and payments between patients, relatives and providers. In the public health care facilities, on the other hand, hidden costs created an illusionary ‘free’ public TB care. In patients’ considerations of paying for care, affordability was defined in the interplay between perceived severity of symptoms, doctors’ status and capacity to treat and cure, opportunities to raise money, as well as considerations of social status and gender. A doctor’s dilemma within the RNTCP was identified as conflicting accountabilities. In an organization perceived as inefficient and resource-constrained, the doctor struggled to find a balance between meeting the obligations of the programme, and meeting the needs and expectations of the patients in the encounters. Conclusion: When medical encounters were guided by consumerism, patients had the chance to be active and negotiate decisions with health care providers. However, at the same time, the patients’ ability to pay was subject to assessment by the providers, and young women, in particular, were in the hands of others when it came to negotiating treatment and payments. Hence, both empowering and exploitive mechanisms seemed to be at play in the encounters that take place in the private health care sector, and these need to be considered in the ongoing strategies of including private providers in TB control activities in India. The dilemma of conflicting accountabilities indicates that encounters within the RNTCP are embedded in a system where not only patients but also doctors lack power to act. This suggests the need to support doctors and health care providers in implementing the programme as one step towards also increasing patients’ involvement in the encounters. Furthermore, the hidden costs associated with the ‘free’ public TB care need to be recognized in efforts to successfully attract and treat patients in the RNTCP.