Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya

Abstract

Health research in low-resource settings often involves individuals and populations defined as ‘vulnerable’. There is growing attention in the literature to the ethical dilemmas that frontline research staff face while conducting such research. However, there is little documented as to how research staff might support one another in identifying and handling these dilemmas in different contexts. Over the course of conducting empirical ethics research embedded in the Childhood Acute Illness & Nutrition Network, we developed an approach to examine and respond to the ethical issues and dilemmas faced by the study teams, particularly frontline staff. In this paper we describe the specific tools and approach we developed, which centred on regular cross-team ethics reflection sessions, and share lessons learnt. We suggest that all studies involving potentially vulnerable participants should incorporate activities and processes to support frontline staff in identifying, reflecting on and responding to ethical dilemmas, throughout studies. We outline the resources needed to do this and share piloted tools for further adaptation and evaluation. Such initiatives should complement and feed into—and certainly not in any way replace or substitute for—strong institutional ethics review, safeguarding and health and safety policies and processes, as well broader staff training and career support initiatives.

Layered vulnerability and researchers’ responsibilities: Learning from research involving Kenyan adolescents living with perinatal HIV infection

“…At the same time, public sector referrals do not cover all needs, sometimes leaving young people and their families unsupported or research teams to support in ad hoc ways that often generate ethical dilemmas for front line staff. We argue here and elsewhere for the importance of a grounded, structured policy response to ancillary care responsibilities in research in low resource settings, as an institutional responsibility to study participants and front line staff (52).…”

Vulnerability and agency in research participants’ daily lives and the research encounter: A qualitative case study of participants taking part in scrub typhus research in northern Thailand

“…Our results combined with ongoing engagement with the community and frontline research staff will help to design studies with further context specific adaptations to minimise research burdens while maximising benefits for participants. Regular review and reflection sessions during study implementation may help to identify unexpected burdens or hidden vulnerabilities and provide a forum to discuss possible actions and solutions [ 47 ]. While we did not set out to draw clinical or public health implications from this work many of the findings are relevant to clinicians working in the area, particularly the barriers to accessing healthcare such as the need for formal translators, indirect medical costs and the costs of care for those not entitled to UHC.…”

Considering Risks to Researchers and Staff in Low-Resource Settings during Public Health Crises: A Proposed Conceptual Model

“…A growing body of international research ethics scholarship has underscored the importance of informing researchers’ ethical obligations and responsibilities with detailed knowledge and appreciation of the local context, communities, and health systems [ 2 , 4 , 5 , 6 , 9 , 16 , 17 , 18 ]. Guidance on risk assessment for research participants has been well-explored, weighing potential benefits of the research to the potential harms [ 19 , 20 , 21 ].…”

“…While awareness of the challenges and ethical dilemmas experienced by research staff is increasing [ 16 , 17 , 18 , 27 , 31 , 32 ], there is a lack of robust assessment of the full range of risks and drivers of risk for research teams. Attempts to characterize these as occupational risk is a useful starting point, but limited in scope [ 25 , 33 ].…”

“…Many struggled with the scope and complexity of needs they witnessed and often felt powerless to help in a sustainable way. Feeling a strong sense of responsibility but lacking the power and resources to respond adequately led to significant psychological and moral distress [ 18 ]. A recent systematic review by Steinhert and colleagues confirmed this complex moral distress experienced by frontline research teams in LRS, arising from feelings of guilt and role conflicts when participants asked for help [ 22 ].…”