'I cry every day': experiences of patients co-infected with HIV and multidrug-resistant tuberculosis.

OBJECTIVES: To understand patients' challenges in adhering to treatment for MDR-TB/HIV co-infection within the context of their life circumstances and access to care and support. METHODS: Qualitative study using in-depth interviews with 12 HIV/MDR-TB co-infected patients followed in a Médecins Sans Frontières (MSF) clinic in Mumbai, India, five lay caregivers and ten health professionals. The data were thematically analysed along three dimensions of patients' experience of being and staying on treatment: physiological, psycho-social and structural. RESULTS: By the time patients and their families initiate treatment for co-infection, their financial and emotional resources were often depleted. Side effects of the drugs were reported to be severe and debilitating, and patients expressed the burden of care and stigma on the social and financial viability of the household. Family caregivers were crucial to maintaining the mental and physical health of patients, but reported high levels of fatigue and stress. Médecins Sans Frontières providers recognised that the barriers to patient adherence were fundamentally social, rather than medical, yet were limited in their ability to support patients and their families. CONCLUSIONS: The treatment of MDR-TB among HIV-infected patients on antiretroviral therapy is hugely demanding for patients, caregivers and families. Current treatment regimens and case-holding strategies are resource intensive and require high levels of support from family and lay caregivers to encourage patient adherence and retention in care.

What 'outliers' tell us about missed opportunities for tuberculosis control: a cross-sectional study of patients in Mumbai, India.

BACKGROUND: India's Revised National Tuberculosis Control Programme (RNTCP) is deemed highly successful in terms of detection and cure rates. However, some patients experience delays in accessing diagnosis and treatment. Patients falling between the 96th and 100th percentiles for these access indicators are often ignored as atypical 'outliers' when assessing programme performance. They may, however, provide clues to understanding why some patients never reach the programme. This paper examines the underlying vulnerabilities of patients with extreme values for delays in accessing the RNTCP in Mumbai city, India. METHODS: We conducted a cross-sectional study with 266 new sputum positive patients registered with the RNTCP in Mumbai. Patients were classified as 'outliers' if patient, provider and system delays were beyond the 95th percentile for the respective variable. Case profiles of 'outliers' for patient, provider and system delays were examined and compared with the rest of the sample to identify key factors responsible for delays. RESULTS: Forty-two patients were 'outliers' on one or more of the delay variables. All 'outliers' had a significantly lower per capita income than the remaining sample. The lack of economic resources was compounded by social, structural and environmental vulnerabilities. Longer patient delays were related to patients' perception of symptoms as non-serious. Provider delays were incurred as a result of private providers' failure to respond to tuberculosis in a timely manner. Diagnostic and treatment delays were minimal, however, analysis of the 'outliers' revealed the importance of social support in enabling access to the programme. CONCLUSION: A proxy for those who fail to reach the programme, these case profiles highlight unique vulnerabilities that need innovative approaches by the RNTCP. The focus on 'outliers' provides a less resource- and time-intensive alternative to community-based studies for understanding the barriers to reaching public health programmes.

Balancing authority, deference and trust across the public-private divide in health care: tuberculosis health visitors in western Maharashtra, India.

While concepts such as 'partnership' are central to the terminology of private-public mix (PPM), little attention has been paid to how social relations are negotiated among the diverse actors responsible for implementing these inter-sectoral arrangements. India's Revised National Tuberculosis Control Programme (RNTCP) has used intermediary agents to facilitate the involvement of private providers in the expansion of Directly Observed Therapy, Short-Course (DOTS). We examine the roles of tuberculosis health visitors (TB HVs) in mediating working relationships among private providers, programme staff and patients that underpin a PPM-DOTS launched by the RNTCP in western Maharashtra. In addition to observations and informal interactions with the programme and participating health providers, researchers conducted in-depth interviews with senior programme officers and eight TB HVs. Framed by a political discourse of clinical governance, working relationships within the PPM are structured by the pluralistic context, social and professional hierarchies and paternalism of health care in India. TB HVs are at the nexus of these relationships, yet remain undervalued partly because accountability is measured through technical rather than social outcomes of the 'partnership'. Close attention to the dynamics of power relations in working practices within the health system can improve accountability and sustainability of partnerships.

Sustaining PPM-DOTS: the case of Pimpri Chinchwad, Maharashtra, India.

BACKGROUND: Globally, Public-Private Mix (PPM) models of service delivery are recommended as a strategy for improving tuberculosis (TB) control. Several models of PPM-DOTS have been initiated under the Revised National TB Control Programme (RNTCP) in India, but scaling up and sustaining successful projects has remained a challenge. AIM: This paper examines factors accounting for the sustainability of a PPM-DOTS initiated in 1998 in Pimpri Chinchwad (PC), a city in Maharashtra, India. METHODS: A two-year intervention research project documented the workings of the PPM-DOTS programme. This paper draws on in-depth interviews with programme officers and staff, and semi-structured interviews with private practitioners (PP) practising in the study area. RESULTS: PPM-DOTS was originally introduced in PC, in order to increase access to DOTS. Over the years it has become an integral part of the RNTCP. Multiple approaches were employed to involve and sustain private providers' participation in PPM-DOTS. Systems were developed for supervision and monitoring DOTS in the private sector. Systematic use of operations research and successful mobilisation of available local resources helped set future direction for expanding and strengthening the PPM. The private sector's contribution to case detection and treatment success has increased, however ensuring referrals of TB suspects from all private providers continues to present a challenge. CONCLUSION: PPM-DOTS in PC is one of the few Indian models implemented as envisaged by global and national policy makers. Its successful operation for over a decade reiterates the importance of public sector initiative and leadership and makes it an interesting case for study and replication.