"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.

Mpoe Johannah Keikelame,Leslie Swartz

doi:10.1186/s12914-016-0084-0

Mpoe Johannah Keikelame, Leslie Swartz

Open Access

https://doi.org/10.1186/s12914-016-0084-0

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Abstract

BackgroundExisting 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.MethodsIndividual 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.ResultsThe 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.ConclusionsThe 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.

Highlights

Existing evidence shows that the majority of people with epilepsy in lower and middle income countries are not receiving appropriate treatment and care
This is of particular importance because various reports highlight that most patients with epilepsy (PWE) in low and middle income countries (LMICs) are not receiving appropriate treatment and care [3, 4]
What is of great concern is that neurological conditions in LMICs are commonly treated within the mental health sector which is described as “one of the notoriously underfunded sector” (p. 180) [5], with the median percentage of health expenditure estimated at 0.5 % in LMICs and 5.1 % in high income countries [5]

Summary

Introduction

Existing evidence shows that the majority of people with epilepsy in lower and middle income countries are not receiving appropriate treatment and care 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. The mhGAP puts emphasis on protection and promotion of human rights as well as the provision of community based care and support [12], it has been reported to lack focus on the social and cultural factors affecting mental health promotion [13] This is crucial especially with a condition such as epilepsy which is rooted in superstitious beliefs about its cause and treatment [14]. While there are indicators that have been set to assess and monitor the effectiveness and appropriateness of these epilepsy guidelines [15,16,17], Varley, Delanty, Normand et al [18] and Fitzsimons, Normand, Varley et al [19] state that they do not show any major improvements in the quality of care of PWE

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