Background Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy collaboratively developed by researchers and (...) study communities in a multicountry study. Methods The study was carried out in two research naïve communities; Gwanda, Zimbabwe and uMkhanyakude, South Africa. The multicentre study was a community based participatory ecohealth multicentre study. A qualitative case study approach was used to explore the CE strategy. Data was collected through Focus Group Discussions, Key Informant Interviews and Direct Observations. Data presented in this paper was collected at three stages of the community engagement process; soon after community entry, soon after sensitisation and during study implementation. Data was analysed through thematic analysis. Results The communities generally had positive experiences of the CE process. They felt that the continuous solicitation of their advice and preferences enabled them to significantly contribute to shaping the engagement process. Communities also perceived the CE process as having been flexible, and that the researchers had presented an open forum for sharing responsibilities in all decision making processes of the engagement process. Conclusions This study has demonstrated that research naïve communities can significantly contribute to research processes if they are adequately engaged. The study also showed that if researchers put in maximum effort to demystify the research process, communities become empowered and participate as partners in research. (shrink)

Task shifting is increasingly used to address human resource shortages impacting HIV service delivery in low- and middle-income countries. By shifting basic tasks from higher- to lower-trained cadres, such as Community Health Workers, task shifting can reduce overhead costs, improve community outreach, and provide efficient scale-up of essential treatments like antiretroviral therapies. Although there is rich evidence outlining positive outcomes that CHWs bring into HIV programs, important questions remain over their place in service delivery. These challenges often reflect concerns over (...) whether CHWs can mitigate HIV through a means that does not overlook the ethical and practical constraints that undergird their work. Ethical and practical guidance thus needs to become the cornerstone of CHW deployment. This paper analyzes such challenges through the lens of Ethical Principlism. We examined papers identifying substantive and ethical challenges impacting CHWs as they provide HIV services in low- and middle-income contexts. To do this, we analyzed papers written in English and published from year 2000 or later. These articles were identified using MEDLINE, Cochrane Database of Systematic Reviews, and Google Scholar databases. In total, 465 articles were identified, 78 of which met our inclusion criteria. Article reference lists and grey literature were also examined. CHWs experience specific challenges while carrying out their duties, such as conducting emotionally- and physically-demanding tasks with often inadequate training, supervision and compensation. CHWs have also been poorly integrated into health systems, which not only impacts quality of care, but can hinder their prospects for promotion and lead to CHW disempowerment. As we argue, these challenges can be addressed if a set of ethical principles is prioritized, which specifically entail the principles of respect for persons, justice, beneficence, proportionality and cultural humility. CHWs play a crucial role in HIV service delivery, yet the ethical challenges that can accompany their work cannot be overlooked. By prioritizing ethical principles, policymakers and program implementers can better ensure that CHWs are combatting HIV through a means that does not exploit or take their critical role within service delivery for granted. (shrink)

Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.

The integrity of biomedical research depends heavily on the quality of research data collected. In turn, data quality depends on processes of data collection, a task undertaken by frontline research staff in many research programmes in Africa and elsewhere. These frontline research staff often have additional responsibilities including translating and communicating research in local languages, seeking informed consent for study participation and maintaining supportive relationships between research institutions and study participants and wider communities. The level of skills that fieldworkers need (...) to undertake these responsibilities clearly affects the quality of data collected, the ethics of research ‘on the ground’ and the short and long term acceptability of research.We organised an international workshop in Kenya in July 2014 to discuss the role of frontline staff in scientific research. A total of 25 field managers from 9 African countries and the UK met for 2.5 days to discuss the relationship between data quality and institutional performance management systems and how they affect career progression and supportive supervision policies of research frontline staff.From this workshop, and supporting an expanding literature on the role of fieldworkers in international health research, participants agreed that fieldworkers’ roles present them with practical and ethical challenges that their routine training does not adequately prepare them for. We argue that the common and complex challenges facing fieldworkers should in part be addressed through increased investment and collaborative agreements across types of research institutions in Africa. We call for standardization of core elements of training for this critically important cadre of research staff who perform similar roles and encounter similar challenges in many African settings. Although many valuable training elements are offered in institutions, there is a need to develop broader, more grounded and innovative strategies to address complex realities for fieldworkers, and support the integrity and ethics of health research in these settings. (shrink)