Living with tuberculosis: a qualitative study of patients’ experiences with disease and treatment

Abstract

Background Although tuberculosis (TB) is a curable disease, treatment is complex and prolonged, requiring considerable commitment from patients. This study aimed to understand the common perspectives of TB patients across Brazil, Russia, India, China, and South Africa throughout their disease journey, including the emotional, psychological, and practical challenges that patients and their families face. Methods This qualitative market research study was conducted between July 2020 and February 2021. Eight TB patients from each country (n = 40) completed health questionnaires, video/telephone interviews, and diaries regarding their experiences of TB. Additionally, 52 household members were interviewed. Patients at different stages of their TB treatment journey, from a range of socioeconomic groups, with or without TB risk factors were sought. Anonymized data underwent triangulation and thematic analysis by iterative coding of statements. Results The sample included 23 men and 17 women aged 13–60 years old, with risk factors for TB reported by 23/40 patients. Although patients were from different countries and cultural backgrounds, experiencing diverse health system contexts, five themes emerged as common across the sample. 1) Economic hardship from loss of income and medical/travel expenses. 2) Widespread stigma, delaying presentation and deeply affecting patients’ emotional wellbeing. 3) TB and HIV co-infection was particularly challenging, but increased TB awareness and accelerated diagnosis. 4) Disruption to family life strained relationships and increased patients’ feelings of isolation and loneliness. 5) The COVID-19 pandemic made it easier for TB patients to keep their condition private, but disrupted access to services. Conclusions Despite disparate cultural, socio-economic, and systemic contexts across countries, TB patients experience common challenges. A robust examination of the needs of individual patients and their families is required to improve the patient experience, encourage adherence, and promote cure, given the limitations of current treatment.

Patient and provider perceptions of the relationship between alcohol use and TB and readiness for treatment: a qualitative study in South Africa

“…A key barriers to both the identi cation and treatment of TB and alcohol use problem as mentioned particularly by paticipants who were part of the focus group were that their decisions to utilize healthcare services, or disclose TB to peers whom they used alcohol with and family were affected by the fear of, and actual experience of, perceived judgment. These ndings are similar to previous research which found that widespread stigma is experienced by people living with TB in South Africa [43,44] and is a major challenge to service utilization. Recent local studies conducted with patients [21] found that stigma is indeed experienced at multiple levels for people with problem alcohol use, and is exacerbated if individuals are living with HIV, which often co-occurs with TB in this setting.…”

The impact of the COVID-19 pandemic on patients’ experiences obtaining a tuberculosis diagnosis in Peru: a mixed-methods study

“…Our qualitative findings show how the pandemic's impact on Peru's health system forced people affected by TB to suffer through prolonged illness, repeated attempts to access diagnostic services, and misdiagnoses. While we are not aware of other qualitative studies focused on the pandemic's impact on patients' experiences during the TB diagnostic process, patients who were already receiving treatment for TB have reported difficulty accessing health services for treatment monitoring [10]. In addition, a survey of health care workers from 64 countries found that most felt that people with TB and HIV faced greater challenges accessing health services during the pandemic, with reduced mobility and health facility closures frequently stated as reasons [19].…”

“…Despite the abundance of quantitative evidence of the pandemic's impact on TB diagnoses, there have been few published reports describing the ways in which the pandemic affected people's pathway to diagnosis from their own perspectives. Qualitative studies exploring patients' experience with TB during the pandemic have reported patients' concerns around the financial and social costs of lockdowns, their ability to continue accessing TB medications, and their fear of infection [8][9][10][11]. However, these studies have not identified ways in which the pandemic had impacted patients' experience obtaining a TB diagnosis.…”

Voices from the Patients: A Qualitative Study of Integration of HIV, Tuberculosis, and Primary Healthcare Services in O.R Tambo District, South Africa

“…Tuberculosis (TB) and human immunodeficiency virus (HIV) are strongly associated. People with healthy immune systems may not fall ill from latent TB infection (when a person has TB but does not have any symptoms), but people living with HIV with a low CD4 count are much more susceptible to active TB [1, 2,3]. The risk of developing active TB is estimated to be 20 times greater in people living with HIV than in people who are HIV-negative [4,5].…”

“…In 2017, 10 million people developed active TB, 9% of whom were also co-infected with HIV. According to the World Health Organization [2], around one-third of the 36.9 million people living with HIV and AIDS worldwide are infected with TB [2,3]. Sub-Saharan Africa is the most affected region, with 70% of the world's co-infection rate [6,7,8,9].…”