Amrita Daftary

HIV testing and disclosure: a qualitative analysis of TB patients in South Africa

Abstract In South Africa, more than 60% of TB patients have HIV co-infection. Voluntary counseling and testing (VCT) is critical to effective HIV prevention, and TB facilities are optimal venues for delivery of these services. This study employed qualitative research methods to explore the decision-making processes for HIV testing and serostatus disclosure by 21 patients hospitalized with multi/extensively-drug resistant TB (M/XDR-TB) in Durban, KwaZulu Natal. Data collected from in-depth interviews characterized 3 broad themes: HIV testing history, experiences and perceptions of stigma and disclosure, and the relationship between TB and HIV/AIDS. Fear of AIDS-related stigma, the singular stress of TB infection, the absence of partners consent, asymptomatic or incurable disease, and uncertainty about subsequent eligibility for antiretroviral treatment while still receiving TB treatment were identified as potential barriers to the uptake of VCT. HIV serostatus disclosure was impeded by the felt stigma of a ‘discreditable’ infection, manifested by social rejection and discrimination. The Public disclosure of TB illness helped relieve some co-prevention measures such as VCTare likely to be more effective within TB facilities if greater sensitivity is paid to TB patients’ specific social issues and perceptions. These patients are not only at greater risk for HIV co-infection but also for experiencing the double stigma of TB and HIV/AIDS.

HIV and tuberculosis: The construction and management of double stigma

Mitigation of the tuberculosis (TB) and HIV syndemic is undermined by critical clinical, operational and social challenges of which the social aspects have been least explored. This paper examines the lived experience of TB disease and HIV from the perspective of affected individuals to analyze how they may think about their dual illness; how they understand their illness with TB in relation to HIV, and vice versa; and how they characterize their (stigmatized) experiences in the context of their perceptions and identities. From February-August 2009, qualitative, semi-structured interviews were conducted with 40 adults with HIV and TB disease at three ambulatory clinics in KwaZulu-Natal, South Africa. Subjective meanings of illness experience were analyzed using modified grounded-theory. Emergent themes on illness perception and disclosure revealed how patients constructed dichotomous identities associated with TB and HIV through social constructs of moral susceptibility and (im)permanence. Each identity was associated with relatively disparate degrees of stigma as a product of labeling, negative stereotyping and discrimination. HIV bore the least desirable identity and invoked the greatest stigma. However, the confluence of the two epidemics rendered TB symbolic and symptomatic of HIV, and enhanced the visibility of AIDS. Dual illness thus introduced a paradox to patients identity constructions, and produced a unique, overlapping double stigma. This facilitated new forms of stigma against TB, and aggravated existing stigma against HIV. It also conferred visibility to some forms of extra-pulmonary TB. Patients managed their double stigmas through novel forms of information sharing that relied on segregating their dual illness identities. Patients deflected the dominant stigma of HIV through concurrent processes of HIV othering - their symbolic distancing from persons affected by HIV, and covering - their selective disclosure of illness (and identity associated) with TB over that of HIV. Findings call for greater consideration to the complex role of stigma in the delivery of TB/HIV healthcare.

Social constraints to TB/HIV healthcare: Accounts from coinfected patients in South Africa

Abstract There is a growing imperative to improve the coordination and collaboration of tuberculosis (TB) and HIV healthcare services in response to escalating rates of TB/HIV coinfection. Patient-specific challenges associated with the delivery of TB/HIV care have been minimally explored in this regard. As part of a larger study conducted in South Africa, this article highlights coinfected patients experiences with TB and HIV healthcare in light of their broader social environments. Qualitative, in-depth interviews were conducted with 40 adult, coinfected patients (24 women and 16 men) and eight key-informant healthcare workers at three urban/peri-urban, ambulatory, public health clinics in the high-burden province of KwaZulu-Natal. Transcribed interviews were analyzed under a modified grounded theory approach to capture subjective meanings of healthcare experience subsequent to patients codiagnosis with TB and HIV. Emerging analytic themes highlighted critical sociomedical constraints to TB/HIV care in relation to patients income and employment, eligibility for social assistance and antiretroviral treatment, fears around illness disclosure, social and material support, and treatment adherence. Patients healthcare experiences were bound by their poor access to essential resources, multiple life responsibilities, disparate gender roles, limits within the healthcare system, and the stigmatizing social symbolism of their illness. Overlapping social inequalities perpetuated coinfected patients experiences with stigma and collectively mediated their health decisions around disclosure, adherence, and retention in medical care. The study urges a contextualized understanding of the social challenges associated with TB/HIV healthcare and helps inform more patient-sensitive and socially responsive interventions against the co-epidemic.

Quality of tuberculosis care in high burden countries: the urgent need to address gaps in the care cascade

Despite the high coverage of directly observed treatment short-course (DOTS), tuberculosis (TB) continues to affect 10.4 million people each year, and kills 1.8 million. High TB mortality, the large number of missing TB cases, the emergence of severe forms of drug resistance, and the slow decline in TB incidence indicate that merely expanding the coverage of TB services is insufficient to end the epidemic. In the era of the End TB Strategy, we need to think beyond coverage and start focusing on the quality of TB care that is routinely offered to patients in high burden countries, in both public and private sectors. In this review, current evidence on the quality of TB care in high burden countries, major gaps in the quality of care, and some novel efforts to measure and improve the quality of care are described. Based on systematic reviews on the quality of TB care or surrogates of quality (e.g., TB diagnostic delays), analyses of TB care cascades, and newer studies that directly measure quality of care, it is shown that the quality of care in both the public and private sector falls short of international standards and urgently needs improvement. National TB programs will therefore need to systematically measure and improve quality of TB care and invest in quality improvement programs.

Preferential adherence to antiretroviral therapy over tuberculosis treatment: A qualitative study of drug-resistant TB/HIV co-infected patients in South Africa

Adherence to antiretroviral therapy (ART) and second-line antituberculosis medications is essential to achieve successful outcomes among individuals co-infected with HIV and multi or extensively drug-resistant TB (M/XDR-TB). In 2012–2013, we designed a qualitative study to explore barriers to adherence in KwaZulu-Natal, South Africa. We conducted six focus groups comprising 23 adults receiving treatment for either MDR-TB (n = 2) or XDR-TB (n = 21); 17 were on concurrent ART. Participants expressed a preference for ART over M/XDR-TB treatment as a result of greater tolerability, lower pill burden and a commitment to ART. Treatment outcomes and the social morbidity associated with M/XDR-TB, characterised by public notification, stigma and social isolation, were perceived to be worse than with HIV. Poor communication, low patient involvement and provider supervision of treatment exacerbated participants negative experiences with TB care. To improve adherence, it is critical that new regimens for drug-resistant TB be developed with better efficacy, lower pill burden and fewer adverse effects. For the first time, such improved regimens are on the horizon. In parallel and equally important is the implementation of a cohesive approach that promotes patient involvement, empowerment and treatment literacy for HIV and for TB.

The contrasting cultures of HIV and tuberculosis care.

The growing burden of HIV and tuberculosis (TB) coinfection has prompted enhanced collaboration or integration of services between HIV and TB programs in high-burden countries. The disparate paradigms or cultures of HIV and TB care, however, have challenged integration efforts. Historically, TB programs have been based in a traditional, public health approach whereas HIV programs have been rooted in an individualized, patient-centred approach. While these distinct approaches may be a product of their diverse social and clinical epidemiologies, and the disparate levels of political support and advocacy tied to HIV and TB disease control, they may influence the ways in which dual services are accepted and utilized by affected communities. We urge HIV and TB programs to recognize and address their cultural differences in integration efforts to build a more cohesive and successful framework of HIV/TB care.

Re-inventing adherence : toward a patient-centered model of care for drug-resistant tuberculosis and HIV.

BACKGROUNDnDespite renewed focus on molecular tuberculosis (TB) diagnostics and new antimycobacterial agents, treatment outcomes for patients co-infected with drug-resistant TB and human immunodeficiency virus (HIV) remain dismal, in part due to lack of focus on medication adherence as part of a patient-centered continuum of care.nnnOBJECTIVEnTo review current barriers to drug-resistant TB-HIV treatment and propose an alternative model to conventional approaches to treatment support.nnnDISCUSSIONnCurrent national TB control programs rely heavily on directly observed therapy (DOT) as the centerpiece of treatment delivery and adherence support. Medication adherence and care for drug-resistant TB-HIV could be improved by fully implementing team-based patient-centered care, empowering patients through counseling and support, maintaining a rights-based approach while acknowledging the responsibility of health care systems in providing comprehensive care, and prioritizing critical research gaps.nnnCONCLUSIONnIt is time to re-invent our understanding of adherence in drug-resistant TB and HIV by focusing attention on the complex clinical, behavioral, social, and structural needs of affected patients and communities.

“When treatment is more challenging than the disease” : a qualitative study of MDR-TB patient retention.

Background One-fifth of the patients on multidrug-resistant tuberculosis treatment at the Drug-Resistant-TB (DR-TB) Site in Gujarat are lost-to-follow-up(LFU). Objective To understand patients’ and providers perspectives on reasons for LFU and their suggestions to improve retention-in-care. Design Qualitative study conducted between December 2013-March 2014, including in-depth interviews with LFU patients and DOT-providers, and a focus group discussion with DR-TB site supervisors. A thematic-network analysis approach was utilised. Results Three sub-themes emerged: (i) Struggle with prolonged treatment; (ii) Strive against stigma and toward support; (iii) Divergent perceptions and practices. Daily injections, pill burden, DOT, migratory work, social problems, prior TB treatment, and adverse drugs effects were reported as major barriers to treatment adherence and retention-in-care by patients and providers. Some providers felt that despite their best efforts, LFU patients remain. Patient movements between private practitioners and traditional healers further influenced LFU. Conclusion The study points to a need for repeated patient counselling and education, improved co-ordination between various tiers of providers engaged in DR-TB care, collaboration between the public, private and traditional practitioners, and promotion of social and economic support to help patients adhere to MDR-TB treatment and avoid LFU.

Integrating patients perspectives into integrated tuberculosis-human immunodeficiency virus health care.

BACKGROUNDnEscalating rates of tuberculosis-human immunodeficiency virus (TB-HIV) co-infection call for improved coordination of TB and HIV health care services in high-burden countries such as South Africa. Patient perspectives, however, are poorly understood in the context of current integration efforts.nnnMETHODnUnder a qualitative research framework, we interviewed 40 HIV-positive adult TB patients and eight key-informant health care workers across three clinics in KwaZulu-Natal Province to explore non-clinical and non-operational aspects of TB-HIV health care.nnnFINDINGSnQualitative analysis highlighted critical social and ethical considerations for the concurrent delivery of TB and HIV care. Co-infected patients navigating between TB and HIV programs are exposed to missed opportunities for TB and HIV service integration, fragmented or vertical care for their dual infections and contrasting experiences within TB and HIV clinics. These intersecting issues appear to affect patients health-related decisions, particularly nondisclosure of HIV status to non-HIV health care workers and their preferences for integrated health care.nnnCONCLUSIONnOur study highlights the imperative to address service fragmentation, HIV medical confidentiality and provider mistrust within the health care system, and the cultural differences associated with TB and HIV disease control.

Using mHealth for HIV/TB Treatment Support in Lesotho: Enhancing Patient-Provider Communication in the START Study.

Background: mHealth is a promising means of supporting adherence to treatment. The Start TB patients on ART and Retain on Treatment (START) study included real-time adherence support using short-text messaging service (SMS) text messaging and trained village health workers (VHWs). We describe the use and acceptability of mHealth by patients with HIV/tuberculosis and health care providers. Methods: Patients and treatment supporters received automated, coded medication and appointment reminders at their preferred time and frequency, using their own phones, and