Browsing by Author "Keikelame, Mpoe Johannah"

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    Decolonising research methodologies : lessons from a qualitative research project, Cape Town, South Africa
    (Taylor & Francis Open, 2017) Keikelame, Mpoe Johannah; Swartz, Leslie
    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.
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    ‘‘It is always HIV/AIDS and TB’’ : home-based carers’ perspectives on epilepsy in Cape Town, South Africa
    (Co-Action Publishing, 2016-06-01) Keikelame, Mpoe Johannah; Swartz, Leslie
    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.
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    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
    (BioMed Central, 2016-03) Keikelame, Mpoe Johannah; Leslie, Leslie Swartz
    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.
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    Perspectives on epilepsy on the part of patients and carers in a South African urban township
    (Stellenbosch : Stellenbosch University, 2016-12) Keikelame, Mpoe Johannah; Swartz, Leslie; Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology.
    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.