"By working together and caring for one another we can win this fight": A qualitative exploration of a traditional healer's perspectives of care of people with epilepsy in a South African urban township in Cape Town.

There is a gap in knowledge about the construction of care in the Global South where biomedical care remains largely inaccessible to many people, resulting in people seeking health care from the indigenous sector of health care. As part of a larger study, in this, article we present findings from a single individual interview with an indigenous healer using a semi-structured interview guide that was based on Kleinman's Explanatory Model Framework. Key themes that emerged from the thematic analysis of our indigenous healer's audio-recorded transcribed transcript were about "care". The four overarching subthemes were the following: (i) care in the family, (ii) care in the community, (iii) care in the health system, and (iv) respondents' construction of care. A key feature of care, for this healer, is its explicit location in lineages of community - care is seen not as an individual or organizational issue, but part of the shared social fabric. We argue that it is crucial to attend to the lay understandings and practices of care which reflect diverse ways of understanding care and relationality in context. Future research is needed to close this gap.

Ghanaian traditional and faith healers' explanatory models for epilepsy.

Epilepsy is the most common neurological condition in sub-Saharan Africa. A significant number of people with epilepsy in low- and middle-income countries do not receive formal biomedical care. They utilize the services of various traditional and alternative medicine practitioners. However, there is relatively little information about the beliefs and methods of alternative healthcare providers about epilepsy in many African countries. Using explanatory models of illness framework, we interviewed thirty-six traditional and faith healers in Ghana on their beliefs and perceptions about epilepsy, as well as how they would treat epilepsy. The healers' beliefs about the nature of epilepsy were reflected in the labels they assigned to the condition. These indicated a belief in the influence of the moon in epilepsy. Furthermore, the participants held multiple, simultaneous explanatory models of causes for epilepsy, including biological, social, and supernatural causes. Epilepsy was also considered to have serious social implications for patients, especially for women. Finally, their treatment methods involved a range of herbal and spiritual practices. These varied based on the identified cause of the condition, as well as the orientation of the healer. We discuss these findings with reference to their implications for potential collaboration between biomedical and alternative healthcare systems.

"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.

Lost opportunities to improve health literacy: observations in a chronic illness clinic providing care for patients with epilepsy in Cape Town South Africa.

Low health literacy (LHL) is reported globally as a barrier to achieving quality of life of patients with epilepsy. In South Africa, despite reports that epilepsy is poorly managed and understood, little attention has been paid to promote health literacy of patients suffering from the condition and those providing their care. We used observation to gain a picture of interactions between patients with epilepsy and health care providers in a chronic illness clinic serving the marginalized population groups in Cape Town. The observation data were compiled into descriptive field notes which were content analyzed. Our findings revealed some patient and health care provider health literacy-related factors affecting the understanding of epilepsy and treatment outcomes. There were also some lost opportunities where health literacy could have been promoted. However, these results cannot be generalized, but they highlight a true picture of contextual health system factors that need to be addressed.

A lay carer's story about epilepsy in an urban South African context: they call it an illness of falling or an illness of fitting because a person shakes and eventually falls.

In South Africa, epilepsy is poorly understood and managed. The different cultural understandings and terms used to explain the condition across the diverse population groups exacerbate this problem. In this article, we describe the findings from a single story about epilepsy which we elicited through a semistructured interview guide in the respondents' natural setting. We used Kleinman and Benson's mini-ethnographic questions to explore the lay carer's explanatory models about epilepsy. Our respondent had different descriptors for epilepsy which include 'an illness of falling', 'an illness of fitting', and 'a thing'. His explanatory models concerning epilepsy were predominantly sociocultural, psychological, economical, and political in nature and were supported by personal examples from his past and present experiences. Key to this man's story is the reality of a strong cultural base of understanding epilepsy, with the added reality of an urbanized world in which people feel alienated from one another and do not necessarily share the same cultural beliefs and practices. Instead of viewing understandings of epilepsy as either 'traditional' or 'western', community-based health promotion interventions must therefore recognize both cultural issues and urban realities and should also incorporate approaches that foster a common ground for patients and carers with very diverse views. The findings of this one interview cannot be generalized but have implications for managing epilepsy in an urban African context.

General practitioners' perceptions on management of epilepsy in primary care settings in Cape Town, South Africa: an exploratory pilot study.

In a context where there are few neurologists, excellent management of patients with epilepsy at a primary care level is imperative. In South Africa, most uninsured patients suffering from epilepsy and other chronic illnesses are managed by general practitioners in state-provided primary care settings. We conducted a qualitative pilot study to explore perceptions of doctors working in primary care settings in Cape Town regarding the quality of epilepsy management. Our analysis revealed that these clinicians believe that epilepsy is poorly managed. Attributing factors were consistent with those found in literature. Although study findings cannot be generalized, we conclude that lack of attention to factors impacting on management of epilepsy is a serious concern and may lead to violations of health rights. Urgent prioritization, advocacy, collaboration, and empowerment of healthcare professionals, patients, lay carers, and the general public are needed to improve the management and quality of care of PWE.

Decolonising research methodologies: lessons from a qualitative research project, Cape Town, South Africa.

BACKGROUND: It is becoming increasingly important for researchers to critically reflect on approaches that can have a positive impact on the health outcomes of indigenous people. Such issues are of great importance and perhaps of special relevance to researchers in the Global South, and to the African context in which we work. OBJECTIVE: To share some lessons learned from our fieldwork to contribute to current knowledge and conversations on decolonising research process. METHODS: We used an African lens to critically reflect upon some issues raised from individual interviews and focus group discussions with our participants which we deem to be important for consideration in a decolonising research process. RESULTS: The major issues that we raise are about important structures such as power, trust, cultural competence, respectful and legitimate research practice and recognition of individual and communities' health assets in a decolonising research process. CONCLUSIONS: Our paper argues for alternative approaches which are culturally appropriate for health research and for improved health outcomes of marginalised groups. In addition, we argue that participatory and transformative research methods which recognises individual and communities' assets are needed. We hope that the lessons that we share in this paper can contribute towards a respectful and good research practice among the marginalised population groups in our context.

"I wonder if I did not mess up .": Shame and resistance among women with epilepsy in Cape Town, South Africa.

PURPOSE: Literature shows that there has been more attention paid to epilepsy stigma, with less focus on issues of shame and resistance. This article provides an in-depth understanding of processes of shame and resistance strategies which emerged from the analysis of individual stories of four adult Xhosa -speaking women with epilepsy in an urban Black township in Cape Town, South Africa. METHODS: Our data collection method involved individual in-depth face to face interviews using a semi-structured interview guide adapted from Kleinman's Explanatory Model Framework. This framework enabled participants to openly share their experiences and perspectives of living with the illness. Their audio-recorded qualitative interview data were transcribed and analysed using a thematic data analysis method. RESULTS: Two main themes about processes of shame and resistance strategies emerged. Two women stories provided insights about the different types of emotions related to shame such as feelings of anger, guilt, regret and grief. Resistance strategies against actions of discrimination, unfair treatment and abuse were evident from the stories of the other two women with epilepsy. Being a bully was another form of violent strategy to fight victimization. CONCLUSION: The findings demonstrate a need for a closer examination of these issues in future epilepsy studies in the study setting - and these should also be examined among men with epilepsy.

"It is always HIV/AIDS and TB": Home-based carers' perspectives on epilepsy in Cape Town, South Africa.

The study highlights the complex cultural religious factors affecting epilepsy and a need for integrated home-based care services. Two focus group discussions exploring home-based carers' (HBCs) perspectives on epilepsy were conducted using a semi-structured focus group interview guide, which was based on Kleinman's explanatory model framework. The audio-recorded data were transcribed verbatim, and a thematic analysis was done. The three main themes were epilepsy names and metaphors, religious beliefs about the cause and treatment of epilepsy, and HBCs' perceived roles and strategies for engaging in epilepsy care. Findings provide some insights for research, policy, and practice.

'Whom will I give him to? The difficulty is mine' : Psychosocial difficulties experienced by care givers of patients with epilepsy in Cape Town, South Africa.

Epilepsy has been reported as one condition that can cause psychological difficulties and distress to care givers of patients suffering from the condition. This study explored psychological difficulties experienced by lay care givers of patients with epilepsy in an urban township in South Africa. Nine individual in-depth interviews were conducted with lay carers who provide care to their relatives, friends and neighbours who have epilepsy. A thematic data analysis method was used. Some fears, social concerns and worries affecting care giving were reported. Community interventions that promote cultural sensitivity in mental health care and empowerment of these carers are needed.

'A thing full of stories': Traditional healers' explanations of epilepsy and perspectives on collaboration with biomedical health care in Cape Town.

The experience of epilepsy is profoundly culturally mediated and the meanings attributed to the condition can have a great impact on its social course. This qualitative study used Kleinman's Explanatory Model framework to explore traditional healers' perspectives on epilepsy in an urban township in Cape Town, South Africa. The healers who participated in the study were Xhosa-speaking, had experience caring for patients with epilepsy, and had not received any training on epilepsy. Six individual in-depth interviews and one focus group with nine traditional healers were conducted using a semi-structured interview guide. Traditional healers identified several different names referring to epilepsy. They explained epilepsy as a thing inside the body which is recognized by the way it presents itself during an epileptic seizure. According to these healers, epilepsy is difficult to understand because it is not easily detectable. Their biomedical explanations of the cause of epilepsy included, among others, lack of immunizations, child asphyxia, heredity, traumatic birth injuries and dehydration. These healers believed that epilepsy could be caused by amafufunyana (evil spirits) and that biomedical doctors could not treat the supernatural causes of epilepsy. However, the healers believed that western medicines, as well as traditional medicines, could be effective in treating the epileptic seizures. Traditional healers were supportive of collaboration with western-trained practitioners and highlighted that the strategy must have formal agreements in view of protection of intellectual property, accountability and respect of their indigenous knowledge. The findings suggest a need for interventions that promote cultural literacy among mental health practitioners. Research is urgently needed to assess the impact of such collaborations between biomedical services and traditional healers on epilepsy treatment and care.

Perceptions of HIV/AIDS leaders about faith-based organisations' influence on HIV/AIDS stigma in South Africa.

The extent of the HIV pandemic-particularly in the hardest-hit countries, including South Africa-has prompted a call for greater engagement of all groups, including faith-based organisations (FBOs). Although FBOs are known to play a substantial role in providing care and support to those affected by HIV and AIDS, empirical evidence in regard to their actions in the broader context of stigma is limited. A qualitative, key-informant survey was conducted in South Africa as part of a six-country international study to examine perceptions of how FBOs have contributed to reduction in HIV risk, vulnerability and related impacts. The special emphasis of this paper is the influence of FBOs on stigma and discrimination. In-depth interviews were held with 34 senior-level key informants who act as key decision-makers in the response to HIV and AIDS in South Africa. Secular and faith-based respondents shared their perceptions of the faith-based response, including FBOs' actions in relation to HIV/AIDS stigma and discrimination. Our study revealed that while FBOs were perceived as taking some action to address stigma in South Africa, FBOs were also thought to contribute to HIV/AIDS- discrimination through conflating issues of sexuality and morality, and through associating HIV and AIDS with sin. The interviewees indicated a number of internal and external challenges faced by FBOs to deal effectively with stigma, including lack of information and skills, the difficulty of maintaining confidentiality in health services, and self-stigmatisation which prevents HIV-infected persons from revealing their status. Findings from this study may help both faith-based and secular groups capitalise on the perceived strengths of FBOs as well as to elucidate their perceived weaknesses so that these areas of concern can be further explored and addressed.