An investigation of a group of Khayelitsha parents' understanding of the causes and management of their childrens' epilepsy

Bibliography: leaves 53-57.The purpose of this dissertation was to document the findings of a study on what the parents of children with epilepsy understood as the cause of their childrens' condition, and how they managed it The study utilised the framework of medical, anthropological and eco - systemic models to gain an understanding of the causes and management of epilepsy. Twelve parents of children with epilepsy in Khayelitsha, a peri-urban township in Cape Town, were interviewed with the use of a semi- structured interview schedule. Interviews were recorded and later transcribed and data was analysed through the constant comparative method. The interview explored the causes of epilepsy and the factors that trigger the onset of seizures of which most respondents had no understanding. It further explored the medical management of epilepsy in regard to kind of treatment received by child, understanding of required dose and when medication bad to be taken

“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

Chronic Diseases in North-West Tanzania and Southern Uganda. Public Perceptions of Terminologies, Aetiologies, Symptoms and Preferred Management

Research outputs produced to support a quantitative population survey, quantitative health facility survey, focus groups and in-depth interviews performed by the projec

Perspectives on epilepsy on the part of patients and carers in a South African urban township

Thesis (PhD)--Stellenbosch University, 2016.ENGLISH ABSTRACT: In a setting where epilepsy support services are available but are inaccessible and where the population is of low-socio economic background and where there are experiences of marginalization and oppression, people with epilepsy and their carers may have difficulties in accessing appropriate treatment and care. This qualitative study provides rich description of perspectives and subjective experiences of adults who have epilepsy and their carers in an urban Xhosa-speaking Black township in Cape Town, South Africa. The study sought to gain an understanding of how adults who have epilepsy and their carers understand the illness (epilepsy). Its aim was to explore their perspectives and subjective experiences and the objectives were to describe and analyse these aspects and to provide information that can be used to guide policy and future research. The study used Kleinman’s (1980) Explanatory Model Framework and his theoretical framework of understanding systems of health care and healing and the Socioecological theory of Bronfenbrenner (1994, 2005) to guide the inquiry process. A total of sixty one adults who had epilepsy and were on seizure medication and their carers such as medical doctors, home-based carers, traditional healers, family members who included wives, partners, siblings and parents and other carers such as friends and neighbours volunteered to take part in the study. Individual in-depth interviews, focus group discussions and direct observations of interactions between health care professionals and adult patients with epilepsy in a health care setting from which they received their treatment and care were conducted to gain insight into the problem. The findings point to differences in the way epilepsy is understood and experienced by people living with the illness and their carers from different sectors of health care. They show how lack of appropriate, empathetic, collaborative and integrated care can affect the health and well-being of adults who have epilepsy and their carers in the setting in which the study was conducted. The study concludes by providing a tentative conceptual model for future research and recommendations for actions that can inform and influence local policy and enable adults who have epilepsy and their carers to attain a good quality of life.AFRIKAANSE OPSOMMING: In 'n omgewing waar epilepsie ondersteuningsdienste beskikbaar, maar nogtans ontoeganklik is, en waar die bevolking van ’n lae sosio-ekonomiese agtergrond met ervarings van marginalisering en onderdrukking bestaan, kan mense met epilepsie en hul versorgers probleme met toegang tot behoorlike behandeling en sorg ervaar. Hierdie kwalitatiewe studie bied 'n ryk beskrywing van die perspektiewe asook die subjektiewe ervarings van volwassenes met epilepsie en hul versorgers in 'n stedelike Xhosa-sprekende swart woonbuurt in Kaapstad, Suid-Afrika. Die studie het gesoek om 'n begrip van hoe volwassenes wat met epilepsie lewe en hul versorgers die siekte (epilepsie) verstaan. Die hoofdoel was om hulle perspektiewe en subjektiewe ervarings te verken, terwyl die hoof doelwitte die beskrywing en ontleding van sodanige aspekte om inligting wat gebruik kan word om die gids beleid en toekomstige navorsingsondernemings te voorsien. Hierdie studie gebruik Kleinman (1980) se verduidelikende model met sy teoretiese raamwerk oor die begrip van gesondheidsorg en genesings stelsels asook Bronfenbrenner (1994, 2005) se sosiologiese teorie om die ondersoek uitevoer. ‘n Totaal van een en sestig volwassenes met epilepsie wat medikasie ontvang en hul versorgers soos mediese dokters, tuisversorges, tradisionele genesers, familielede soos vrouens, broers, susters, eggenote, maats en ouers tot vriende en bure het aangebied om in hierdie studie deel te neem. Individu in-diepte onderhoude, fokusgroepbesprekings en direkte waarnemings van interaksies tussen wesopgeliede gesondheidswerkers en volwassenes pasiënte met epilepsie in die gesondheidsorg instelling waar hulle hul behandeling en versorging ontvang, is gedoen om insig in die probleem te kry. Die bevindings dui op die verskillende maniere hoe epilepsie verstaan en ervaar word deur volwassenes wat met epilepsie lewe en hul versorgers in die verskillende sektore van gesondheid. Dit wys hoe ‘n gebrek aan geskikte, empatiese, saamwerkende en geïntegreerde sorg die gesondheid en welstand van volwassenes met epilespsie en hul versorges in die omgewing waar die studie uitgevoer is kan bewerkstillig. Die studie sluit deur om ‘n voorlopige konseptuele model vir toekomstige navorsing, aanbevelings vir optredes wat kan inlig en plaaslike beleid kan beinvloed om vir volwassenes met epilepsie en hul versorgers te verskaf en in sodoene in staat stel om ‘n goeie lewensgehalte vir hulle te behaal

Parents' understanding of the causes and management of their children's epilepsy in Khayelitsha, Cape Town

This article shares the findings of a study done In Khayelitsha, a perl-urban township in Cape Town. The study explored what parents understood as the cause of their children's epilepsy and how they managed the condition. The objective was to provide information that may be used to inform the design of appropriate health promotion interventions to address the problem. Twelve parents of children with epilepsy were interviewed through a semi-structured interview schedule, Most participants did not know the cause of their children's epilepsy. The known medical causes were meningitis, tumour, and heredity, Evil spirits (amafufunyane) and bewitchment were reported by some participants as the cause of their children's epilepsy. Major findings were the lack of understanding of the correct use of seizure medication, the appropriate use of first aid measures, the importance of disclosing the condition, and regular check-up. Some participants reported having used traditional and Western treatment. Although the study findings cannot be generalised, they highlight potential implications for collaborative approaches to address epilepsy. These approaches should empower children with epilepsy and their carers through supportive health promotion interventions that address contextual factors impacting on the problem as a 'whole', There is also probably a need for training health care workers in epilepsy care and management. Further research is needed to investigate the difficulties encountered by children with epilepsy at school. © Psychological Society of South Africa. All rights reserved.Articl

‘‘It is always HIV/AIDS and TB’’ : home-based carers’ perspectives on epilepsy in Cape Town, South Africa

CITATION: Keikelame, M. J. & Swartz, L. 2016. ‘‘It is always HIV/AIDS and TB’’ : home-based carers’ perspectives on epilepsy in Cape Town, South Africa. International Journal of Qualitative Studies on Health and Well-being, 11: 30213, doi: 10.3402/qhw.v11.30213.The original publication is available at http://www.ijqhw.netPublication of this article was funded by the Stellenbosch University Open Access Fund.ENGLISH ABSTRACT: 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.http://www.ijqhw.net/index.php/qhw/article/view/30213Publisher's versio

Integrating the primary health care approach into a medical curriculum: a programme logic model

Primary health care (PHC) is an equity-driven approach to health care that formed the foundation of South African national health policy under the new democratic government in 1994. In August 1994 the Faculty of Medicine (later renamed the Faculty of Health Sciences) at the University of Cape Town (UCT) adopted a policy on the PHC approach in order to equip its graduates with the values and skills necessary to meet the changing demands of the new national health system. This policy committed the Faculty to make the PHC approach central to its teaching, research, clinical service, and engagement with communities

Mpathekombi, ya bantu abadala: elder abuse in black townships on the Cape flats

Commissioned by the Ikamvu Labantu Project, Marc

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

CITATION: Keikelame, M. J. & Swartz, L. 2017. Decolonising research methodologies : lessons from a qualitative research project, Cape Town, South Africa. Global Health Action, 12(1):1561175, doi:10.1080/16549716.2018.1561175.Publication of this article was funded by the Stellenbosch University Open Access Fund.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.https://www.tandfonline.com/doi/abs/10.1080/16549716.2018.1561175Publisher's versio