Patricia Kingori

A randomised controlled trial of computer-assisted interviewing in sexual health clinics

Objectives To assess the impact of computer-assisted interview compared with pen and paper on disclosure of sexual behaviour, diagnostic testing by clinicians, infections diagnosed and referral for counselling. Methods Two-centre parallel three-arm randomised controlled open trial. Computer-generated randomisation with allocation concealment using sealed envelopes. Setting Two London teaching hospital sexual health clinics. Participants 2351 clinic attenders over the age of 16 years. Interventions Computer-assisted self-interview (CASI). Computer-assisted personal interview (CAPI). Pen and paper interview (PAPI). Main Outcome Measures Diagnostic tests ordered, sexually transmitted infections (STI). Secondary Outcomes Disclosure of sexual risk, referral for counselling. Results 801, 763 and 787 patients randomly allocated to receive CASI, CAPI and PAPI. 795, 744 and 779 were available for intention-to-treat analysis. Significantly more diagnostic testing for hepatitis B and C and rectal samples in the CAPI arm (odds for more testing relative to PAPI 1.32; 95% CI 1.09 to 1.59). This pattern was not seen among CASI patients. HIV testing was significantly lower among CASI patients (odds for less testing relative to PAPI 0.73; 95% CI 0.59 to 0.90). STI diagnoses were not significantly different by trial arm. A summary measure of seven prespecified sensitive behaviours found greater reporting with CASI (OR 1.4; 95% CI 1.2 to 1.6) and CAPI (OR 1.4; 95% CI 1.2 to 1.7) compared with PAPI. Conclusion CASI and CAPI can generate greater recording of risky behaviour than traditional PAPI. Increased disclosure did not increase STI diagnoses. Safeguards may be needed to ensure that clinicians are prompted to act upon disclosures made during self-interview. Trial registration ISRCTN: 97674664.

Per diems in Africa: a counter-argument.

An open and frank discussion about the extent and impact of per diems on the functioning of health interventions, systems and research is important. While the ‘culture of per diems’ can be associated with civil servants involved in health care projects and delivery, we suggest that a more balanced argument would be presented, if per diems were discussed in relation to macroeconomic and structural influences. This does not preclude examination in an African context but it is a reminder that this issue is not inherently African. All actors in global health should be named and examined accordingly.

Good and Bad Research Collaborations: Researchers' Views on Science and Ethics in Global Health Research.

There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors as important to successful research collaboration. This is surprising given that their decisions are likely to play a key role in the sustainability and effectiveness of global health research initiatives. In this paper, we report on qualitative research with leading scientists involved in major international research collaborations about their views on good and bad collaborations and the factors that inform their decision-making about joining and participating actively in research networks. We identify and discuss eight factors that researchers see as essential in judging the merits of active participation in global health research collaborations: opportunities for active involvement in cutting-edge, interesting science; effective leadership; competence of potential partners in and commitment to good scientific practice; capacity building; respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. Our findings suggest that the sustainability and effectiveness of global health research collaborations has an important ethical or moral dimension for the research actors involved.

The 'empty choice': A sociological examination of choosing medical research participation in resource-limited Sub-Saharan Africa.

This article explores the views of frontline research staff in different Sub-Saharan African contexts on the notion of choice in biomedical research. It argues that the current emphasis on individual choice, in the conduct of biomedical research, ignores significant structural and contextual factors in resource-limited settings. These factors severely constrain individual options and often make biomedical research enrolment the most amenable route to healthcare for the world’s poorest. From the position of frontline research staff, local contextual factors and structural issues narrowly frame the parameters within which many prospective participants are asked to choose, to such an extent that individuals are effectively presented with an ‘empty choice’. The article draws on ethnographic and interview data and insights gained through graphic elucidation techniques. It demonstrates that for frontline research staff, macro-level structural factors and their bearing on everyday realities shape what choice in biomedical research participation means in practice.

“You have to keep fighting”: maintaining healthcare services and professionalism on the frontline of austerity in Greece

BackgroundGreece has been severely affected by the 2008 global economic crisis and its health system was, and still is, among the national institutions most shaped by its effects.MethodsIn 2014, this qualitative study examined these changes through in-depth interviews with 22 frontline healthcare professionals in five different locations in mainland Greece. These interviews with nurses, doctors and pharmacists explored perceptions of austerity and how ideas of professionalism were challenged and revised by these measures.ResultsParticipants reported working conditions characterised by dramatic increases in public hospital admissions alongside decreases in personnel, consumables, materials, and also many hospital closures. Many drew on analogies of war and fighting to describe the effects of healthcare reforms on their working lives and professional conduct. Despite accounts of deteriorating conditions and numerous challenges, healthcare professionals presented themselves as making every effort to meet patients’ needs, while battling to resist guidelines which they perceived diminished their roles to production-line operatives.ConclusionsParticipants considered it their duty to defend their professional ethos and serve patients without compromising standards, even if this meant liberal interpretation and implementation of regulations. These professionals regarded themselves on the frontline of healthcare provision but also the frontline defence in a war on their professional standards from austerity.

Beliefs and practices during pregnancy, post-partum and in the first days of an infant’s life in rural Cambodia

BackgroundThe aim of this study was to record the beliefs, practices during pregnancy, post-partum and in the first few days of an infant’s life, held by a cross section of the community in rural Cambodia to determine beneficial community interventions to improve early neonatal health.MethodsQualitative study design with data generated from semi structured interviews (SSI) and focus group discussions (FGD). Data were analysed by thematic content analysis, with an a priori coding structure developed using available relevant literature. Further reading of the transcripts permitted additional coding to be performed in vivo.This study was conducted in two locations, firstly the Angkor Hospital for Children and secondarily in five villages in Sotnikum, Siem Reap Province, Cambodia.ResultsA total of 20 participants underwent a SSIs (15 in hospital and five in the community) and six (three in hospital and three in the community; a total of 58 participants) FGDs were conducted. Harmful practices that occurred in the past (for example: discarding colostrum and putting mud on the umbilical stump) were not described as being practiced. Village elders did not enforce traditional views. Parents could describe signs of illness and felt responsible to seek care for their child even if other family members disagreed, however participants were unaware of the signs or danger of neonatal jaundice. Cost of transportation was the major barrier to healthcare that was identified.ConclusionsIn the population examined, traditional practices in late pregnancy and the post-partum period were no longer commonly performed. However, jaundice, a potentially serious neonatal condition, was not recognised. Community neonatal interventions should be tailored to the populations existing practice and knowledge.

When the science fails and the ethics works: ‘Fail-safe’ ethics in the FEM-PrEP study

This paper will explore the concept of ‘fail safe’ ethics in the FEM PrEP trial, and the practice of research and ethics on the ground. FEM-PrEP examined the efficacy of PrEP in African women after promising outcomes in research conducted with MSM. This was a hugely optimistic time and FEM-PrEP was mobilised using rights-based ethical arguments that women should have access to PrEP. This paper will present data collected during an ethnographic study of frontline research workers involved in FEM-PrEP. During our discussions, ‘fail-safe’ ethics emerged as concept that encapsulated their confidence that their ethics could not fail. However, in 2011, FEM-PrEP was halted and deemed a failure. The women involved in the study were held responsible because contrary to researchers expectations they were not taking the oral PrEP being researched. This examination of FEM-PrEP will show that ethical arguments are increasingly deployed to mobilise, maintain and in some cases stop trials in ways which, at times, are superseded or co-opted by other interests. While promoting the interests of women, rights-based approaches are argued to indirectly justify the continuation of individualised, biomedical interventions which have been problematic in other women-centred trials. In this examination of FEM-PrEP, the rights-based approach obscured: ethical concerns beyond access to PrEP; the complexities of power relationships between donor and host countries; the operations of the HIV industry in research-saturated areas and the cumulative effect of unfilled expectations in HIV research and how this has shaped ideas of research and ethics.

Museum of failed HIV research

If a museum existed that contained a collection of failed artefacts related to HIV research what would that look like? How would failure be defined such that items could be representative of it and what would these definitions tell us about HIV research? These were some of the lines of enquiry which prompted the exploration of the Museum of Failed HIV Research as a conceptual space for scholars to examine these failure. This special issue is a collection of papers that have interrogated these questions and they present on display some of the possible ways of considering failure in HIV research.

The Acceptability of Online Consent in a Self-Test Serosurvey of Responders to the 2014-2016 West African Ebola Outbreak.

Abstract Online participation in research is used increasingly to recruit geographically dispersed populations. Obtaining online consent is convenient, yet we know little about the acceptability of this practice. We carried out a serostudy among personnel returning to the UK/Ireland following deployment to West Africa during the 2014–2016 Ebola epidemic. We used an online procedure for consenting returnees and designed a small descriptive study to understand: how much of the consent material they read, how informed they felt and if they preferred online to traditional face-to-face consent. Of 261 returnees, 111 (43 per cent) completed the consent survey. Participants indicated a high level of engagement with the consent materials, with 67 per cent reporting having read all and 20 per cent having read ‘most’ of the materials. All participants indicated feeling completely (78 per cent) or mostly (22 per cent) informed about the purpose, methods and intended uses of the research, as well as what participation was required and what risks were involved. Only three participants indicated a preference for face-to-face consent. Free-text comments suggested that online consent may be an acceptable modality for uncomplicated and low-risk studies. The study sample was largely composed of health professionals, suggesting acceptability of online consent within this population.

If you come from a well-known organisation, I will trust you: Exploring and understanding the community's attitudes towards healthcare research in Cambodia.

Objective To explore Cambodian community members’ understanding of and attitudes towards healthcare research. Design This qualitative study generated data from semi-structured interviews and focus group discussions. This study was conducted at a non-governmental paediatric hospital and in nearby villages in Siem Reap province, Cambodia. A total of ten semi-structured interviews and four focus group discussions were conducted, involving 27 participants. Iterative data collection and analysis were performed concurrently. Data were analysed by thematic content analysis and the coding structure was developed using relevant literature. Results Participants did not have a clear understanding of what activities related to research compared with those for routine healthcare. Key attitudes towards research were responsibility and trust: personal (trust of the researcher directly) and institutional (trust of the institution as a whole). Villagers believe the village headman holds responsibility for community activities, while the village headman believes that this responsibility should be shared across all levels of the government system. Conclusions It is essential for researchers to understand the structure and relationship within the community they wish to work with in order to develop trust among community participants. This aids effective communication and understanding among all parties, enabling high quality ethical research to be conducted.