Qualitative interviews with non-national tuberculosis patients in Cairo, Egypt: understanding the financial and social cost of treatment adherence

Abstract

Limited data are available about the challenges of non-national TB patients undergoing long-term treatment courses in an urban setting. This study aimed to understand the financial and social cost of adherence of non-national TB patients in Cairo, Egypt as a means to inform the development of context-specific interventions to support treatment adherence. In 2011, 22 in-depth interviews were conducted with TB patients from Sudan, Ethiopia, Eritrea, Somalia and Djibouti to obtain qualitative data. Analysis was based on thematic analysis that aimed to identify recurrent themes and codes from the narratives. The study identified a number of factors that influence TB treatment adherence. Uncertain financial status due to limited or no employment was frequently discussed in interviews, which resulted in fear of not being able to support family, loss of pride, dependence on family and friends, fear of losing housing, food insecurity and limited food options. Respondents also feared infecting other household members and longed for opportunities to discuss their illness and treatment experiences with other individuals but their social networks were often limited. TB-related stigma was driven by shame and blame of infection. Respondents also believed stigma was based on their foreign origin. Stigma manifested in distancing and exclusion in various ways, resulting in isolation, psychological distress and reluctance to disclose TB status to others. Poverty-related factors and social context with a special focus on stigma should be considered when developing strategies for supporting long-term treatment courses for non-national patients in Cairo and other similar urban settings.

Patients’ perspectives of tuberculosis treatment challenges and barriers to treatment adherence in Ukraine: a qualitative study

“…Participants described psychological distress associated with TB diagnosis, and many voiced their desire for psychological support during treatment. Studies have similarly found high prevalence of depression and anxiety among patients with TB25 35 39; such negative emotional states contribute to non-adherence 40. At the same time, treatment of psychiatric comorbidities increases TB treatment adherence,39 and psychosocial support improves treatment success rates 41 42.…”

“…Many participants discussed the economic burden of TB treatment. Poverty is a risk factor for TB disease, and TB treatment exacerbates existing financial hardship and impairs treatment adherence 25 27 31 43–45. Studies have shown that cash transfers, and assistance with food and transport can increase treatment success rates 41 46.…”

“…Whereas DOT focuses on medical care to achieve TB cure, there is increasing recognition of the need to integrate such medical services with financial and psychosocial support. Low socioeconomic status broadly undermines healthcare-seeking behaviour and it is well known that poverty elevates risk of TB disease, which in turn renders patients poorer 25 27 31 43–45. Thus, TB control efforts in this setting must address socioeconomic factors that put patients at higher risk for TB and undercut their will to remain in care.…”

“…Failure to complete TB treatment may result in poor patient outcomes, and previous studies have identified many patient-related risk factors for loss to follow-up during treatment including unemployment, substance use disorder (SUD) and HIV 16–24. Qualitative studies from diverse social settings across the economic spectrum have also described barriers to TB treatment adherence such as stigma, financial burden, inadequate TB knowledge and treatment side effects 19 22 25 26. Qualitative evidence from Eastern Europe has revealed additional factors such as hospital-based treatment, lack of social support and poor patient–provider communication as drivers of poor treatment adherence, particularly among patients with MDR-TB 27–29…”

The socioeconomic impact of tuberculosis on children and adolescents: a scoping review and conceptual framework

“…Twelve papers described the financial impact of childhood or adolescent TB or TB affecting a household member. The financial consequences of TB were described as impacting multiple aspects of family life, causing anxiety, and impacting directly on child and adolescent nutrition and education [ 35 , 37 , 46 , 52 ]. While the financial impact resulted from direct and indirect costs of seeking and attending treatment, TB also caused a loss of income for the entire family due to caring responsibilities and treatment requirements, such as travel to the hospital [ 26 ].…”