Living with TB: the ‘career’ of the tuberculosis patient in the Free State, South Africa

This thesis has three main aims. The first aim is to profile the ‘career’ of tuberculosis patients. In this regard, the focus is broadly on the socio-economic and socio-cultural variables impinging on the health-seeking behaviour and adherence to treatment of pulmonary TB patients. Secondary to this aim, the intention is to provide all stakeholders with insight into the living circumstances and experiences of pulmonary TB patients. The third main aim is to propose criteria for innovative behavioural prevention strategies and health-seeking behaviour for TB patients. The study was conducted at nine primary health care clinics in three geographic areas or health districts in the Free State province (South Africa). The areas were purposively selected to represent different regions in the Free State, including rural and urban areas. Together, the selected areas represent the broad spectrum of socio-economic and socio-cultural variables impinging on the illness ‘career’ of TB patients. The study was conducted using a combination of quantitative and qualitative research methods. Face-to-face interviews was conducted with 220 randomly selected pulmonary TB patients. In addition, nine focus group discussions (FGDs) were conducted with 85 PTB patients. Fifty-five percent of interviewed patients were male and 45% female. The majority of patients were new patients (68%), while almost a third was re-treatment patients (32%). Of the retreatment patients, just more than half were on re-treatment following previous cure (53%), while just more than a fifth (21%) was on re-treatment following treatment completion. A third (35%) of the patients was married. On average, the patients lived in families of 4.4 persons per household with an average of 2.1 persons per room.The majority of the patients indicated that they had access to electricity (80%), piped water (85%) and to refuse removal services at least once a week (77%). However, a third (35%) reported having no proper sanitation. While the average monthly per capita income of patients increased from R985.36 immediately prior to illness with TB to R1 113.16 afterwards, the mean cumulative monthly household income decreased from R1 214.50 before being diagnosed with TB to R946.85 afterwards. It was shown that the illness ‘career’ of individuals with TB is characterised as a long-term experience in which the individuals had to rely families and friends to overcome daily challenges. In an attempt to provide a meaningful separation of events constituting the illness experience, the illness ‘career’ of the TB patient was divided into five different phases from experiencing symptoms, to assuming the sick role, to contacting a health care provider, to being a patient and, finally, relinquishing the sick role. The findings indicate that the patients in this study not only had to cope with physical disabilities and the side effects of treatment, but also with the psychological traumas of fear of recurrence of the disease and social stigma, and the disappointment of a considerably reduced range of future possibilities for career and marriage. It was also indicated that few of the patients in this study were treated negatively by their spouses/partners, family members or their communities. Living with TB in “modern” society where stress, AIDS and an array other social and psychological factors are seen to threaten the individuals, is an enormous burden In respect of determinants of treatment adherence, the quantitative evidence shows that stigma, the socio-economic circumstances of the patient, and migrancy play an important role in explaining non-adherence. In addition, patients whose tablet taking was supervised were more likely to adhere to treatment. Based on the qualitative evidence, some of the perceived factors affecting adherence included lack of knowledge about TB, non-sustainability of educational campaigns, side effects of drugs, hunger and lack of family support, stigma attached to TB, and the attitude of health care workers and the long delay in obtaining a diagnosis. Based on this evidence, recommendations are made regarding a number of provider-, patientand communitycentred interventions that can improve adherence. SECTION ONE Chapter 1: Introduction “While one-fifth of the world's 5 billion people can now expect to live to see their 80th birthday, nearly half of the rest--about 1.6 billion people--suffer overwhelmingly the world's burden of unavoidable illness and premature death. Increasingly, citizens of developing countries are coming to believe that at the root of such inequity lies an attempt to apply "first world" solutions without sufficient adaptation to the realities of the third world” (Commission on Health Research for Development, 1990).