ABSTRACT
Identities ascribed to research staff in face-to-face encounters with participants have been raised as key ethical challenge in transnational health research. 'Misattributed' identities that do not just deviate from researchers' self-image, but obscure unequivocal aspects of researcher identity - e.g. that they are researchers - are a case of such ethical problem. Yet, the reasonable expectation of unconcealed identity can conflict with another ethical premise: confidentiality; this poses challenges to staff visiting participants at home. We explore these around a case study of 'follow-up' staff, observed during an ethnographic study of a Kenyan HIV 'trial community', which included participant observation, conversations, and interviews with staff (n = 79) and participants (n = 89). We found that because of the need to maintain confidentiality and because of some suspicions towards researchers, research staff drew upon alternative identities - presenting themselves to non-participants as relatives or friends, rather than as researchers. Several staff experienced this as necessary but uncomfortable. Simultaneously, staff and participants forged close relations in line with their fictional identities, which however also posed challenges because they entailed personal responsibilities that were difficult to live up to, due to limited resources, and the trial's limited duration. Similar challenges may arise in transnational HIV treatment programmes and should be explored further in that context.
Subject(s)
Clinical Trials as Topic/ethics , Community-Based Participatory Research/ethics , Confidentiality/ethics , HIV Infections , Research Personnel/standards , Researcher-Subject Relations/ethics , Social Responsibility , Trust , Academies and Institutes , Adult , Anti-HIV Agents/administration & dosage , Clinical Trials as Topic/standards , Clinical Trials as Topic/trends , Community-Based Participatory Research/standards , Community-Based Participatory Research/trends , Female , Friends , HIV Infections/drug therapy , Humans , International Cooperation , Job Satisfaction , Kenya , Medication Adherence , Research Personnel/ethics , SiblingsABSTRACT
Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters' (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations.
Subject(s)
Clinical Trials as Topic/ethics , Community-Based Participatory Research/ethics , Research Personnel/ethics , Researcher-Subject Relations/ethics , Social Responsibility , Trust , Academies and Institutes , Centers for Disease Control and Prevention, U.S. , Clinical Trials as Topic/standards , Clinical Trials as Topic/trends , Community-Based Participatory Research/standards , Community-Based Participatory Research/trends , Ethics, Research , Humans , Interpersonal Relations , Kenya , Negotiating , Object Attachment , Power, Psychological , Research Personnel/standards , Trust/psychology , United States , VolunteersABSTRACT
Little is published about the disclosure of parents' own HIV status to their children in Africa. Research shows that keeping family secrets from children, including those related to a parent's HIV status, can be detrimental to their psychological well-being and to the structure of the family. Further, children with HIV-positive parents have been shown to be more vulnerable to poorer reproductive health outcomes. This qualitative study in Botswana conducted in-depth interviews among 21 HIV-positive parents on antiretroviral therapy. The data revealed that parents found discussing the issue of HIV with children difficult, including disclosing their own HIV status to them. Reasons for disclosing included: children being HIV positive, the rest of the family knowing, or the parent becoming very sick. Reasons for not disclosing included: believing the child to be too young, not knowing how to address the issue of HIV, that it would be "too painful" for the child/ren. Concern that other people might find out about their status or fear of children experiencing stigmatising behaviour. Interviews elucidated the difficulty that parents have in discussing their own HIV status and more general sexual health issues with their children. Parents and other guardians require support in managing age-appropriate disclosure to their children. This may further enable access to forums that can help children cope with their fears about the future and develop life skills in preparation for dealing with relationships of a sexual nature and sexual health as children move into adulthood. In developing such support mechanisms, changing family roles in Botswana need to be taken into consideration and the role of other family members in the upbringing of children in Tswana society need to be recognised and utilised.
Subject(s)
Child of Impaired Parents/psychology , HIV Infections , Health Status , Parents/psychology , Truth Disclosure , Adaptation, Psychological , Adult , Anti-Retroviral Agents/therapeutic use , Botswana , Child , Female , HIV Infections/drug therapy , HIV Infections/psychology , Humans , Male , Middle Aged , Parent-Child Relations , Social Isolation/psychology , Social Support , Stereotyping , Stress, Psychological , Young AdultABSTRACT
Reproductive health care for internally displaced persons (IDPs) is recognised by the Inter-Agency Working Group on Reproductive Health in Refugee Situations and the Reproductive Health Response in Conflict Consortium as a neglected area in humanitarian relief operations. To identify barriers to agencies providing reproductive health care to IDPs, and their strategies for overcoming these barriers, we interviewed representatives of 12 relief and development agencies providing health care to conflict-affected populations. Although material and human resources are significant constraints on agencies, the main challenge is to tackle ideological, managerial and policy barriers, and those related to donor influence. The absence of a legal instrument that recognises IDPs internationally has contributed to the difficulties agencies face in systematically reaching IDPs. Our findings suggest that considerable efforts are needed to close the gap between international commitments and the provision of services at field level. We recommend that agencies carry out awareness-raising activities internally and among partner organisations and donors, strengthen internal organisation and inter-agency collaboration and share expertise in order to maximise benefits and save resources at the local level. We also recommend exploring the possibility of an international convention to protect the rights of internally displaced persons.