“The others look at you as if you are a grave”: a qualitative study of subjective experiences of patients with epilepsy regarding their treatment and care in Cape Town, South Africa

BACKGROUND: Existing evidence shows that the majority of people with epilepsy in lower and middle income countries are not receiving appropriate treatment and care. Although this problem has been reported as one of the factors affecting the quality of lives of people with epilepsy, very few studies have investigated patients’ perspectives and their experiences about the problem. This qualitative study explored perspectives and subjective experiences of people with epilepsy about their illness in an urban township in South Africa. METHODS: Individual face-to-face interviews included twelve people who had epilepsy. A semi-structured interview guide which was based on Kleinman (1980) Explanatory Models Framework was used to elicit participants’ perspectives and subjective experiences about their illness and its treatment. Thematic analysis method was used to analyse the data. RESULTS: The main theme reflecting participants’ verbatim accounts was about their perceived difficulties affecting their access to treatment and care during their routine clinical follow up visits. These concerned rushed consultations which focussed on seizure frequency and adherence to medication with no attention to personal concerns. They perceived that part of the problem could be that some health care practitioners were not adequately trained and lacked empathy, interest, respect and listening skills. We argue that in a health system where patients feel that they are not respected and their concerns are not listened to or are ignored, they may lack trust in the system and this may violate their right to access treatment and care. CONCLUSIONS: The findings provide a glimpse of the extent to which the power and nature of the routine task-centred system can lead to violation of patients’ health rights – especially with epilepsy which is poorly understood and stigmatized. Appropriate interventions are needed to address health system factors affecting the treatment and care of this marginalized and vulnerable group of patients.