Browsing by Author "Masiye, Francis"

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    Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study
    (2016) Masiye, Francis; De Vries, Jantina; Mayosi, Bongani
    INTRODUCTION: Advances in genetic and genomic research have introduced new challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for a genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand the ethical challenges in obtaining informed consent in the RHDGen study. METHODS: We used a qualitative study methodology involving in-depth interviews and participant observations. Our research participants were RHDGen cases and controls as well as research staff involved in the recruitment of RHDGen research participants. In total, we conducted 32 in-depth interviews with RHDGen research participants, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen research participants. The in-depth interviews were conducted in English, audio-recorded and transcribed verbatim. All the data were analysed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa, and these sites were the Groote Schuur Hospital in Observatory, the Vanguard Community Health Centre in Bonteheuwel and the Heideveld Community in the Cape Flats.
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    Exploring the barriers to disclosure of life-threatening illness to children in Blantyre, Malawi
    (2009) Bunn, Mary; Gwyther, Liz; Masiye, Francis
    It is recognised in the western world that children with life-threatening or life-limiting illness benefit from sharing of information about their illness in an age-appropriate way as this enables children to feel empowered, in some control of their illness and less isolated. Currently in Malawi, as in the rest of Africa, there are increasing numbers of children facing the diagnosis of life-threatening or life-limiting illness and requiring compassionate palliative care. However, in Malawi, children are still told very little of their illness. This study was therefore designed to use qualitative methods to investigate the barriers to disclosure of life-threatening illness to children in Malawi. It sought to obtain information regarding Malawians' thoughts and feelings about childhood life threatening illness and their attitudes to talking about this to children. It also explored the cultural context and concerns leading to barriers to disclosing to children and identified what children would like to know about their illness. A set of recommendations for health workers in paediatric palliative care in Malawi have been developed from the findings of this study, to facilitate explanation and communication with children and families regarding life-threatening and life-limiting illness, in order to equip and empower children to participate in decision making and come to a position of acceptance and peace.
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    “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa
    (BioMed Central, 2017-02-15) Masiye, Francis; Mayosi, Bongani; de Vries, Jantina
    Background: Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study. Methods: We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases (patients), healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa. Results: Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease (diagnostic misconception). A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception. Conclusion: The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases.