9 found
Order:
  1.  12
    A chronological discourse analysis of ancillary care provision in guidance documents for research conduct in the global south.Blessings M. Kapumba, Nicola Desmond & Janet Seeley - 2022 - BMC Medical Ethics 23 (1):1-16.
    Introduction Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  2.  37
    ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi.Deborah Nyirenda, Salla Sariola, Kate Gooding, Mackwellings Phiri, Rodrick Sambakunsi, Elvis Moyo, Chiwoza Bandawe, Bertie Squire & Nicola Desmond - 2017 - Developing World Bioethics 18 (4):420-428.
    Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group members’ selection processes and functions in Malawi. A qualitative research design was used; (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  3.  12
    Guardians and research staff experiences and views about the consent process in hospital-based paediatric research studies in urban Malawi: A qualitative study.Nicola Desmond, Michael Parker, David Lalloo, Ian J. C. MacCormick, Markus Gmeiner, Charity Gunda, Neema Mtunthama Toto & Mtisunge Joshua Gondwe - 2022 - BMC Medical Ethics 23 (1):1-15.
    BackgroundObtaining consent has become a standard way of respecting the patient’s rights and autonomy in clinical research. Ethical guidelines recommend that the child’s parent/s or authorised legal guardian provides informed consent for their child’s participation. However, obtaining informed consent in paediatric research is challenging. Parents become vulnerable because of stress related to their child’s illness. Understanding the views held by guardians and researchers about the consent process in Malawi, where there are limitations in health care access and research literacy will (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  4.  24
    Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa.Deborah Nyirenda, Salla Sariola, Patricia Kingori, Bertie Squire, Chiwoza Bandawe, Michael Parker & Nicola Desmond - 2020 - BMC Medical Ethics 21 (1):1-10.
    Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  5.  17
    How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi.Helen Mangochi, Kate Gooding, Aisleen Bennett, Michael Parker, Nicola Desmond & Susan Bull - 2019 - BMC Medical Ethics 20 (1):32.
    Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  6.  17
    “Not just dogs, but rabid dogs”: tensions and conflicts amongst research volunteers in Malawi.Mackwellings Phiri, Kate Gooding, Deborah Nyirenda, Rodrick Sambakunsi, Moses Kelly Kumwenda & Nicola Desmond - 2018 - Global Bioethics 29 (1):65-80.
    ABSTRACTBuilding trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting (...)
    No categories
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  7.  19
    Considerations for a Human Rights Impact Assessment of a Population Wide Treatment for HIV Prevention Intervention.Johanna Hanefeld, Virginia Bond, Janet Seeley, Shelley Lees & Nicola Desmond - 2013 - Developing World Bioethics 15 (3):115-124.
    Increasing attention is being paid to the potential of anti-retroviral treatment for HIV prevention. The possibility of eliminating HIV from a population through a universal test and treat intervention, where all people within a population are tested for HIV and all positive people immediately initiated on ART, as part of a wider prevention intervention, was first proposed in 2009. Several clinical trials testing this idea are now in inception phase. An intervention which relies on universally testing the entire population for (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  8.  13
    “Are we getting the biometric bioethics right?” – the use of biometrics within the healthcare system in Malawi.Mphatso Mwapasa, Kate Gooding, Moses Kumwenda, Marriott Nliwasa, Kruger Kaswaswa, Rodrick Sambakunsi, Michael Parker, Susan Bull & Nicola Desmond - 2020 - Global Bioethics 31 (1):67-80.
    Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns surrounding the appropriate use of biometrics have been raised, especial...
    No categories
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  9.  11
    ‘Guidance should have been there 15 years ago’ research stakeholders’ perspectives on ancillary care in the global south: a case study of Malawi.Janet Seeley, Nicola Desmond, Deborah Nyirenda & Blessings M. Kapumba - 2023 - BMC Medical Ethics 24 (1):1-18.
    BackgroundMedical researchers in resource-constrained settings must make difficult moral decisions about the provision of ancillary care to participants where additional healthcare needs fall outside the scope of the research and are not provided for by the local healthcare system. We examined research stakeholder perceptions and experiences of ancillary care in biomedical research projects in Malawi. MethodsWe conducted 45 qualitative in-depth interviews with key research stakeholders: researchers, health officials, research ethics committee members, research participants and grants officers from international research funding (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark