Research In Zambia Research Articles

Patient-reported reasons for declining same-day antiretroviral therapy initiation in routine HIV care settings in Lusaka, Zambia: results from a mixed-effects regression analysis.

IntroductionIn the current “test and treat” era, HIV programmes are increasingly focusing resources on linkage to care and same‐day antiretroviral therapy (ART) initiation to meet UNAIDS 95‐95‐95 targets. After observing sub‐optimal treatment indicators in health facilities supported by the Centre for Infectious Disease Research in Zambia (CIDRZ), we piloted a “linkage assessment” tool in facility‐based HIV testing settings to uncover barriers to same‐day linkage to care and ART initiation among newly identified people living with HIV (PLHIV) and to guide HIV programme quality improvement efforts.MethodsThe one‐page, structured linkage assessment tool was developed to capture patient‐reported barriers to same‐day linkage and ART initiation using three empirically supported categories of barriers: social, personal and structural. The tool was implemented in three health facilities, two urban and one rural, in Lusaka, Zambia from 1 November 2017 to 31 January 2018, and administered to all newly identified PLHIV declining same‐day linkage and ART. Individuals selected as many reasons as relevant. We used mixed‐effects logistic regression modelling to evaluate predictors of citing specific barriers to same‐day linkage and ART, and Fisher’s Exact tests to assess differences in barrier citation by socio‐demographics and HIV testing entry point.ResultsA total of 1278 people tested HIV positive, of whom 126 (9.9%) declined same‐day linkage and ART, reporting a median of three barriers per respondent. Of these 126, 71.4% were female. Females declining same‐day ART were younger, on average, (median 28.5 years, interquartile range (IQR): 21 to 37 years) than males (median 34.5 years, IQR: 26 to 44 years). The most commonly reported barrier category was structural, “clinics were too crowded” (n = 33), followed by a social reason, “friends and family will condemn me” (n = 30). The frequency of citing personal barriers differed significantly across HIV testing point (χ2 p = 0.03). Significant predictors for citing ≥1 barrier to same‐day ART were >50 years of age (OR: 12.59, 95% CI: 6.00 to 26.41) and testing at a rural facility (OR: 9.92, 95% CI: 4.98 to 19.79).ConclusionsGiven differences observed in barriers to same‐day ART initiation reported across sex, age, testing point, and facility type, new, tailored counselling and linkage to care approaches are needed, which should be rigorously evaluated in routine programme settings.

Effect of Enhanced Adherence Package on Early Retention in Care Among HIV-Positive Pregnant Women in Zambia: An Individual Randomized Controlled Trial

Background: Suboptimal retention may undermine the individual and public health benefits of immediate lifelong antiretroviral therapy (ART) for HIV-positive pregnant women (i.e., Option B+). We evaluated the effect of an intervention called the B-plus Enhanced Adherence Package (BEAP) on early ART uptake and short-term retention among newly diagnosed HIV-positive pregnant women in Lusaka, Zambia. Methods: Pregnant women at 3 public sector facilities in Lusaka urban district who were 18+ years old, HIV-positive, and ART naA¯ve were enrolled between March 02, 2017 and December 18, 2017 and randomized 1:1 to BEAP versus standard of care (SOC) services. All participants were eligible for Option B+ per national guidelines. BEAP involved early (within 1-2 weeks of eligibility for option B+) phone calls and home visits from a male-female pair of community health workers (CHW) to provide additional counseling, engage male partners in HIV testing, and follow-up any missed ART appointments. CHW documented all BEAP activities. The primary outcome, initiation and retention on ART per pharmacy records at 30 days after Option B+ eligibility, was compared by study arm in an intention to treat (ITT) analysis using logistic regression. In a per protocol analysis we also assessed the impact of BEAP on initiation and retention among those women who were confirmed to have received BEAP services. In pre-planned subgroup analyses, we also evaluated the BEAP's impact according to participant age, parity, baseline HIV partner disclosure status and baseline CD4+ count. Findings: Among 454 women enrolled, 229 were randomized to BEAP and 225 to SOC. The two arms were balanced with respect to age (p=0.16) and gestational age (p=0.09). Within 30 days of Option B+ eligibility, 445 (98.2%) initiated ART; however, only 369 (82.9%) of those women who started ART were still in care at 30 days. In ITT analysis, the proportion initiating and remaining on ART at 30 days was similar between women randomized to BEAP versus SOC (82.5% versus 80.4%; crude relative risk [RR], 1.03; 95% confidence interval [CI], 0.91-1.16). After exclusion of 92 participants (40.2%) due to not receiving BEAP services based on CHW documentation and 1 participant due to ineligibility, BEAP was associated with being on ART at 30 days versus SOC (91.9.0% versus 80.4%; crude RR 1.14; 95% CI, 1.02-1.29). No significant variation was found in the effect of BEAP in subgroup analyses based on parity, age, baseline HIV disclosure status, and/or baseline CD4+ count. Interpretation: Uptake of Option B+ within 30 days of eligibility was nearly universal among HIV-positive pregnant women in urban Zambia. Women who received the BEAP intervention were statistically more likely to be on ART at 30 days compared to those receiving standard services. This difference, though modest, supports the potential of targeted early interventions to optimize the implementation of Option B+. Trial Registration: The trial was also registered at ClinicalTrials.gov (trials number NCT02459678). Funding Statement: This research has been supported by the President's Emergency Plan for AIDS Relief (PEPFAR) through the United States Centers for Disease Control and Prevention (CDC) under the terms of cooperative agreement number U01GH000530. Additional investigator support was provided by the National Institutes of Health (K24 AI120796). Declaration of Interests: MM declares that the Centre for Infectious Disease Research in Zambia (CIDRZ), received a grant from the Centers for Disease Control and Prevention (CDC) (grant number: GH000530) to carry out this study. The rest of the authors declare no conflict of interest. Ethics Approval Statement: Approval for the study was obtained from the University of Zambia Biomedical Research Ethics Committee (Lusaka, Zambia) and the University of North Carolina at Chapel Hill Instituitional Review Board (Chapel Hill, NC, USA). The study was reviewed in accordance with the Centers for Disease Control and Prevention (CDC) human research protection procedures and was determined to be research, but CDC investigators did not interact with human subjects or have access to identifiable data or specimens for research purposes. Women who were eligible and agreed to participate provided written informed consent.

Evaluating health research priority-setting in low-income countries: a case study of health research priority-setting in Zambia

Priority-setting (PS) for health research presents an opportunity for the relevant stakeholders to identify and create a list of priorities that reflects the country’s knowledge needs. Zambia has conducted several health research prioritisation exercises that have never been evaluated. Evaluation would facilitate gleaning of lessons of good practices that can be shared as well as the identification of areas of improvement. This paper describes and evaluates health research PS in Zambia from the perspectives of key stakeholders using an internationally validated evaluation framework.MethodsThis was a qualitative study based on 28 in-depth interviews with stakeholders who had participated in the PS exercises. An interview guide was employed. Data were analysed using NVIVO 10. Emerging themes were, in turn, compared to the framework parameters.ResultsRespondents reported that, while the Zambian political, economic, social and cultural context was conducive, there was a lack of co-ordination of funding sources, partners and research priorities. Although participatory, the process lacked community involvement, dissemination strategies and appeals mechanisms. Limited funding hampered implementation, monitoring and evaluation. Research was largely driven by the research funders.ConclusionsAlthough there is apparent commitment to health research in Zambia, health research PS is limited by lack of funding, and consistently used explicit and fair processes. The designated national research organisation and the availability of tools that have been validated and pilot tested within Zambia provide an opportunity for focused capacity strengthening for systematic prioritisation, monitoring and evaluation. The utility of the evaluation framework in Zambia could indicate potential usefulness in similar low-income countries.

Implementing large-scale health system strengthening interventions: experience from the better health outcomes through mentoring and assessments (BHOMA) project in Zambia

BackgroundUnder the Doris Duke Charitable Foundation’s African Health Initiative, five Population Health Implementation and Training partnerships were established as long-term health system strengthening projects in five Sub-Saharan Countries. In Zambia, the Centre for Infectious Disease Research in Zambia began to implement the Better Health Outcomes through Mentorship and Assessments (BHOMA) in 2009. This was a combined community and health systems project involving 42 public facilities and their catchment populations. The impact of this intervention is reported elsewhere, but less attention has been paid to evaluation approaches that generate an understanding of the forces shaping the intervention. This paper is focused on understanding the implementation practices of the BHOMA intervention in Zambia.MethodsQualitative approaches were employed to understand and explain health systems intervention implementation practices between 2014 and 2016. We purposively sampled six clinics out of the 42 that participated in the BHOMA project within three districts of Lusaka province in Zambia. At the facility-level we targeted health centre in-charges, health workers, and community health workers. In-depth interviews (n = 22), focus group discussions (n = 3) and observations were also collected and synthesised.ResultsThe major health system challenges addressed by the BHOMA project included poor infrastructure, lack of human resources, poor service delivery, long distances to health centres and inadequate health information systems. In order to implement this in the districts it was necessary to engage with the Ministry of Health and district managers, however, these partners were not actively engaged in intervention design There was great variation in perceptions about the BHOMA interventions. The implementation team considered BHOMA as a ‘proof of concept pilot project’, running parallel to the public health system, while district health officials from the Ministry of health understood it as a ‘long term partner’ and were therefore resistant to the short-term nature of the intervention.ConclusionsThe Normalization Process Theory provided a useful framework to understand and explain implementation processes for the BHOMA intervention in Zambia. We clearly demonstrated the applicability of all the four main components of the NPT: coherence (or sense-making); cognitive participation (or engagement); collective action and reflexive monitoring. We demonstrated how complex and dynamic the intervention played out among different actors and how implementation was affected by difference in appreciation and interpretation of the goal of the intervention. Our findings support the growing demand for process evaluations to use theory based approaches to examine how context interact with local interventions to affect outcomes intended or not.Trial registrationClinicalTrials.gov Identifier: NCT01942278. Registered: September 13, 2013 (Retrospectively registered).

Ethical challenges in research on post-abortion care with adolescents: experiences of researchers in Zambia

ABSTRACT Post-abortion care (PAC) research is increasingly being conducted in low- and middle-income countries (LMICs) to help reduce the high burden of unsafe abortion. This study aims to help address the evidence gap about ethical challenges that researchers in LMICs face when carrying out PAC research with adolescents. Employing an explorative qualitative approach, the study identified several ethics challenges encountered by PAC researchers in Zambia, including those associated with seeking ethics and regulatory approvals at institutional and national levels. Persistent stigma around abortion and community perceptions that PAC studies encourage adolescents to seek abortion affected adolescents’ right to exercise their autonomy and to make decisions as well as exposed adolescents to social stigmatization risks. Challenges with recruitment was reported to result in abandoning of studies, thereby undermining development of PAC services that are more responsive to adolescent needs. Training needs identified included knowledge of best practices for conducting and disseminating PAC research. Strategies for addressing the ethical challenges included trust building and using less value-laden terminology when seeking permission and consent. It is essential to the future of PAC research in Zambia and globally that these important challenges be addressed through the development of comprehensive ethics guidance.

Using Open Source Tools for Analysis of the Mutation Rate of African Cassava Mosaic Virus

Popular tools used in studies in life sciences are often costly. This often pauses challenges to researchers in spite of the fact that research continues to be a key to the successful systematic development of new knowledge and a fundamental aspect to the usefulness of all higher education. Particularly, higher education also aims to advance, create and disseminate knowledge through research. Such critical studies like mutation studies therefore require affordable and fast results yielding software. In such research, open source software tools become handy in place of expensive proprietary tools. In order to provide alternative software tools for research, we decided to use a case study of the mutation of the African Cassava Mosaic Virus (ACMV) done by researchers in Zambia. The study of ACMV mutation is hampered by fragmented and non-user-friendly tools, which are currently available. A number of the tools used also depend on network connection, especially the Internet, to access and analyze data. To help alleviate this problem this research proposes the use of open source libraries in biopython to generate cost efficient and user-friendly solutions. Additionally, we propose the use of an open standard using XML as a standard protocol to share data between applications or stages in genomic data analysis of the ACMV. In our strife to provide open source solutions we analysed various tools and noted that biopython is quite popular. During our study of biopython our initial results show that it’s possible to use free tools to analyze data in the life sciences and consequently reduce the time and cost required to analyze ACMV. Based on this case study we propose the adoption of such open source libraries in order to make research much more affordable for scientists in the life sciences for researches that operate within a constrained budget.

Estimating the real-world effects of expanding antiretroviral treatment eligibility: Evidence from a regression discontinuity analysis in Zambia.

BackgroundAlthough randomized trials have established the clinical efficacy of treating all persons living with HIV (PLWHs), expanding treatment eligibility in the real world may have additional behavioral effects (e.g., changes in retention) or lead to unintended consequences (e.g., crowding out sicker patients owing to increased patient volume). Using a regression discontinuity design, we sought to assess the effects of a previous change to Zambia’s HIV treatment guidelines increasing the threshold for treatment eligibility from 350 to 500 cells/μL to anticipate effects of current global efforts to treat all PLWHs.Methods and findingsWe analyzed antiretroviral therapy (ART)-naïve adults who newly enrolled in HIV care in a network of 64 clinics operated by the Zambian Ministry of Health and supported by the Centre for Infectious Disease Research in Zambia (CIDRZ). Patients were restricted to those enrolling in a narrow window around the April 1, 2014 change to Zambian HIV treatment guidelines that raised the CD4 threshold for treatment from 350 to 500 cells/μL (i.e., August 1, 2013, to November 1, 2014). Clinical and sociodemographic data were obtained from an electronic medical record system used in routine care. We used a regression discontinuity design to estimate the effects of this change in treatment eligibility on ART initiation within 3 months of enrollment, retention in care at 6 months (defined as clinic attendance between 3 and 9 months after enrollment), and a composite of both ART initiation by 3 months and retention in care at 6 months in all new enrollees. We also performed an instrumental variable (IV) analysis to quantify the effect of actually initiating ART because of this guideline change on retention. Overall, 34,857 ART-naïve patients (39.1% male, median age 34 years [IQR 28–41], median CD4 268 cells/μL [IQR 134–430]) newly enrolled in HIV care during this period; 23,036 were analyzed after excluding patients around the threshold to allow for clinic-to-clinic variations in actual guideline uptake. In all newly enrolling patients, expanding the CD4 threshold for treatment from 350 to 500 cells/μL was associated with a 13.6% absolute increase in ART initiation within 3 months of enrollment (95% CI, 11.1%–16.2%), a 4.1% absolute increase in retention at 6 months (95% CI, 1.6%–6.7%), and a 10.8% absolute increase in the percentage of patients who initiated ART by 3 months and were retained at six months (95% CI, 8.1%–13.5%). These effects were greatest in patients who would have become newly eligible for ART with the change in guidelines: a 43.7% increase in ART initiation by 3 months (95% CI, 37.5%–49.9%), 13.6% increase in retention at six months (95% CI, 7.3%–20.0%), and a 35.5% increase in the percentage of patients on ART at 3 months and still in care at 6 months [95% CI, 29.2%–41.9%). We did not observe decreases in ART initiation or retention in patients not directly targeted by the guideline change. An IV analysis found that initiating ART in response to the guideline change led to a 37.9% (95% CI, 28.8%–46.9%) absolute increase in retention in care. Limitations of this study include uncertain generalizability under newer models of care, lack of laboratory data (e.g., viral load), inability to account for earlier stages in the HIV care cascade (e.g., HIV testing and linkage), and potential for misclassification of eligibility status or outcome.ConclusionsIn this study, guidelines raising the CD4 threshold for treatment from 350 to 500 cells/μL were associated with a rapid rise in ART initiation as well as enhanced retention among newly treatment-eligible patients, without negatively impacting patients with lower CD4 levels. These data suggest that health systems in Zambia and other high-prevalence settings could substantially enhance engagement even among those with high CD4 levels (i.e., above 500 cells/μL) by expanding treatment without undermining existing care standards.

Reputations count: why benchmarking performance is improving health care across the world.

This paper explores what motivates improved health care performance. Previously, many have thought that performance would either improve via choice and competition or by relying on trust and altruism. But neither assumption is supported by available evidence. So instead we explore a third approach of reciprocal altruism with sanctions for unacceptably poor performance and rewards for high performance. These rewards and sanctions, however, are not monetary, but in the form of reputational effects through public reporting of benchmarking of performance. Drawing on natural experiments in Italy and the United Kingdom, we illustrate how public benchmarking can improve poor performance at the national level through 'naming and shaming' and enhance good performance at the sub-national level through 'competitive benchmarking' and peer learning. Ethnographic research in Zambia also showed how reputations count. Policy-makers could use these effects in different ways to improve public services.

Michael Patrick Stuart Irwin (1925–2017)

Michael Patrick Stuart Irwin (1925–2017)

Visions from behind a desk? Archival performance and the re‐enactment of colonial bureaucracy

Can ten weeks of archival research be considered a re‐enactment of the daily life of black African clerks who created the records? What would such a claim entail when it is made by a white female scholar? Drawing from my experience of archival research in Zambia, and from recent enthusiasm in historical geography for “enlivening” or “animating” the past, I analyse what parameters would be necessary for this re‐enactment to be considered a success. This paper explores how breaking up historical situations into units of gesture and experience affects the narrating of history. It asks what models of the self are implied by re‐enactive historical investigation; in relation to the agency of historical actors, and also to the performativity of their original gestures. It argues that performative investigation of the social and cultural geographies of the subaltern sits uncomfortably with current scholarly practices in historical geography. This is in part because that work is largely carried out by lone scholars, but also because of the highly individualised, self‐conscious and self‐possessed modes through which the outcomes of performative research are narrated. Finally, borrowing the term “acts of transfer” (from the performance scholar Diana Taylor), this paper proposes that this contemporary performance of clerical work is only one route through which the colonial past resonates, or acts, in the present. The lives of the colonial clerks were locked into structures of racial and socioeconomic inequality that survive outside my performance. Does “performing” the past overwrite or obscure these other continuities? To avoid such an erasure, both the ethical consequences and epistemological goals of performative research in historical geography need to be more clearly articulated in relationship to the sociomaterial geographies of the present.

Relational wellbeing: re-centring the politics of happiness, policy and the self

The ubiquity of references to happiness and wellbeing indicates widespread anxiety that all may not be well, reflecting the erosion of the social in late capitalist modernity. The paper finds that, rather than helping to solve this problem, individualist formulations of wellbeing in policy mimic or deepen the underlying pathology. Drawing on empirical research in Zambia and India, it advocates an alternative approach, relational wellbeing, which is grounded in a relational ontology that can challenge dominant ideologies of the self, places central the generative quality of relationality which is critical to societal change and engenders a socially inclusive political vision.

DEFEATING POVERTY-RELATED AND NEGLECTED DISEASES IN AFRICA: HARNESSING RESEARCH FOR EVIDENCE-INFORMED POLICIES

DEFEATING POVERTY-RELATED AND NEGLECTED DISEASES IN AFRICA: HARNESSING RESEARCH FOR EVIDENCE-INFORMED POLICIES

COMMUNITY ENGAGEMENT IN TB VACCINE RESEARCH AND DEVELOPMENT IN ZAMBIA

BackgroundCommunity engagement (CE) is an essential component of clinical research. In 2000, the National Institute of General Medical Sciences recommended that researchers obtain community input into all phases of research,...

IMPACT OF TARGETED INTERVENTIONS AGAINST DIARRHOEA IN ZAMBIA

BackgroundDiarrhoea is a leading cause of morbidity and mortality with the brunt of diarrhoea felt most in developing countries like Zambia where 13% of all deaths of children between 1–59...

STRENGTHENING PRISON HEALTH SYSTEMS: FEASIBILITY AND CHALLENGES OF INTRODUCING PRISON HEALTH COMMITTEES (PRHCS) IN ZAMBIAN CORRECTIONAL FACILITIES

BackgroundIn Zambia, prison health and health services are in a state of ‘chronic emergency’. Since 2013, the Zambian Corrections Service (ZCS) partnered with Centre for Infectious Disease Research in Zambia...

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Genomic research in Zambia: confronting the ethics, policy and regulatory frontiers in the 21st Century.

Genomic research has the potential to increase knowledge in health sciences, but the process has to ensure the safety, integrity and well-being of research participants. A legal framework for the conduct of health research in Zambia is available. However, the ethical, policy and regulatory framework to operationalise genomic research requires a paradigm shift. This paper outlines the current legal and policy framework as well as the ethics environment, and suggests recommendations for Zambia to fully benefit from the opportunity that genomic research presents. This will entail creating national research interest, improving knowledge levels, and building community trust among researchers, policymakers, donors, regulators and, most importantly, patients and research participants. A real balancing act of the risk and benefits will need to be objectively undertaken.

Assessing the feasibility of police initiation of HIV post-exposure prophylaxis for sexual violence survivors in Lusaka, Zambia

[Extract] Globally, more than 1 in 3 women have experienced physical or sexual violence (SV) from intimate partners or SV from non-partners [1]. Furthermore, over 10% of all girls are estimated to have experienced a forced sexual act, with the highest rates of SV against girls found in sub-Saharan Africa [2]. Although public recognition of SV is growing in Zambia, reliable data on the nature and extent of such violence is limited. Approximately 20% of Zambian women aged 15 to 49 have experienced some form of sexual violence; however, this is likely underestimated due to underreporting [3]. Previous research in Zambia suggests that exposure to SV is equally pervasive among adolescent girls [4,5]. The risks associated with SV, especially among young women, are numerous. Immediate health consequences include unwanted pregnancy, physical trauma, mental distress and acquisition of HIV and other sexually-transmitted infections. The linkage between sexual and gender-based violence (SGBV) and risk of HIV has been well documented in Africa and is especially pronounced in countries with high HIV prevalence, such as Zambia [3,6-8]. Growing awareness of these negative consequences of SGBV led the Government of Zambia to develop a set of national guidelines for the management of SGBV, highlighting the need for a response system linking the health, police, and social services sectors. A critical component of this response is the prevention of HIV infection in SV survivors through the provision of preventive anti-retroviral therapy, or HIV post-exposure prophylaxis (PEP). The initial dose of PEP must be taken within 72 hours of exposure to HIV [9]. Given the time sensitivity of PEP and the fact that police and health services are often the first points of contact for SV survivors, strong coordination between these two sectors is central to the effective medical management of SV cases in Zambia [10]. Building on the results of previous research in Zambia, which demonstrated that trained Victim Support Unit (VSU) police officers could effectively administer the emergency contraception pill to SV survivors, the Population Council, Zambia Police Service, and Ministry of Health aimed to assess the feasibility of having trained VSU police officers safely and effectively provide a PEP starter dose to SV survivors with immediate referral to comprehensive medical services [10].

Liminal Spaces and the Transgender Experience

INTRODUCTIONThis research explores the experiences of a sample of gendernonconforming individuals who are attempting to achieve independence in a society that dictates identity based on genitalia and a rigid binary conception of male/female and woman/man. The expression of alternative forms of often meets with disdain and in some instances, violence. Individuals who change rules and refuse to conform in socially prescribed ways of expression often fall somewhere between female or male. In other words, they enter a liminal space. The term liminality was first coined by Victor Turner based on his field research in Zambia during the 1950s. We argue that at least for a time, some non-conforming individuals experience liminality as they transition from one identity to the other. Others may embrace this space and still others accept their liminal status with at least some amount of trepidation (Nestle, Howell, & Wilchins, 2002, pp. 98-99). For the purposes of this research project, liminality refers to an in-between status or what occurs before/during identity transition. In some cases, transitional liminality may result in a personal transfonnation that is helped along by ritual processes and the formation of supportive communities. In other cases, more permanent, socially imposed liminality may produce insecurity and/or vulnerability; especially for individuals who exhibit ambiguity in their presentation and may or may not be transsexual.We examine the experiences of a non-random sample of 21 individuals who identify with the transgender community but may not necessarily be transgender. For example, several participants identified specifically as genderqueer but not transgender. One young woman, Olivia, identified as 'cisgender' which is technically a term for people who identify as the they were assigned at birth. However, she also identified with the transgender community in that she liked to play with her and explore other ways of being. Her expression/presentation is somewhere in the middle of the binary and her sexual orientation is bisexual. Borrowing from Bornstein (1994), Olivia might just be a gender outlaw as are some of the other individuals who shared their stories with us. For the purposes of this study we apply the term transgender to every category not covered by the words man, woman, female, and male. Borrowing from Stone's categorizations (1991) we include the following in our working definition of transgender: transsexuals, transvestites, cross-dressers, individuals with an intersex condition, individuals who have chosen to perform ambiguous social genders, and people who have chosen to perform no at all.During the time of the interviews, some of our participants were in varying stages of physical transition while others were coming to tenus with complex identity management issues that did not involve surgical/hormonal intervention. Some participants were attempting to step outside of the binary and identified in either bi-gender or multi-gender ways. Others chose to transition from either male to female (MTF) or female to male (FTM) and integrate into society by adhering to traditional ideas about sex and gender. The stories they share provide an opportunity to understand how a sample of non-conformists make sense of the world as they achieve and manage their identities.Of particular interest to the researchers is the exploration of how individuals who do not conform to normative rules negotiate their identities either with the help of surgical/hormonal intervention or by moving between categories in pursuit of freedom. Transgender individuals are often in-between traditional binary labels or they may inhabit 'outside boundaries' of what is defined as male and female in Western culture. Many transsexuals make a break with existing expectations resulting from their sex at birth and forge new identities based on who they really are. …

Improving validity of informed consent for biomedical research in Zambia using a laboratory exposure intervention.

BackgroundComplex biomedical research can lead to disquiet in communities with limited exposure to scientific discussions, leading to rumours or to high drop-out rates. We set out to test an intervention designed to address apprehensions commonly encountered in a community where literacy is uncommon, and where complex biomedical research has been conducted for over a decade. We aimed to determine if it could improve the validity of consent.MethodsData were collected using focus group discussions, key informant interviews and observations. We designed an intervention that exposed participants to a detailed demonstration of laboratory processes. Each group was interviewed twice in a day, before and after exposure to the intervention in order to assess changes in their views.ResultsFactors that motivated people to participate in invasive biomedical research included a desire to stay healthy because of the screening during the recruitment process, regular advice from doctors, free medical services, and trust in the researchers. Inhibiting factors were limited knowledge about samples taken from their bodies during endoscopic procedures, the impact of endoscopy on the function of internal organs, and concerns about the use of biomedical samples. The belief that blood can be used for Satanic practices also created insecurities about drawing of blood samples. Further inhibiting factors included a fear of being labelled as HIV positive if known to consult heath workers repeatedly, and gender inequality. Concerns about the use and storage of blood and tissue samples were overcome by a laboratory exposure intervention.ConclusionSelecting a group of members from target community and engaging them in a laboratory exposure intervention could be a useful tool for enhancing specific aspects of consent for biomedical research. Further work is needed to determine the extent to which improved understanding permeates beyond the immediate group participating in the intervention.