Abstract
BACKGROUND: Many people diagnosed with Mycobacterium tuberculosis (TB) in tertiary and district hospitals in South Africa do not arrive at their primary care clinic for continued care after they are discharged from the hospital. This loss to follow up is a major, ongoing problem for public health in South Africa, and contributes to drug-resistant TB strains. The objective of this paper was to explore patients' experiences and perceptions of diagnosis and treatment before their discharge from hospital. We use a framework known as patient-centred care to illustrate how these patient narratives point to lapses in these principles within the hospital system, and to show how such lapses may contribute to loss to follow up and inconsistent TB care. METHODS: We employed a qualitative study using semi-structured interviews to investigate patient and healthcare workers' experiences and perceptions of TB care in two Western Cape hospitals. We purposefully sampled 17 patients, 10 healthcare workers, and two key informant policy makers, all of whom had relevant experiences and insights. Data collection was done between October 2015 and February 2017. Data were analysed using Miles and Huberman's qualitative analysis framework. RESULTS: Hospitals did not achieve patient-centred care. Newly diagnosed patients were provided with inadequate TB education, diseased-focused approaches were favoured over patient-focused approaches, and there was limited engagement with patients to understand their needs and feelings during the critical period between diagnosis and discharge. Consequently, some patients felt anxious prior to their discharge from hospital. Coupled with their overwhelming socio-economic barriers and complex family situations, some patients felt hopeless and powerless as they prepared for discharge. Finally, there was a lack of patient-provider partnership due to problems including healthcare workers' time constraints and heavy workloads, which detracted from a focus on patients' needs and feelings. CONCLUSIONS: Improving the three intersecting elements of patient-centred care (health education, engaging with patients' needs and feelings, and shared decision-making) has the potential to positively influence patients' continuity of care for TB in South Africa. It would be helpful to also proactively address how patients plan to stay connected to care, on treatment, and supported, in light of their family situation or socio-economic circumstances. Detailed and unique pre-discharge counselling for each patient may be valuable in this regard.