Gendered negotiations for research participation in community-based studies: implications for health research policy and practice.

There is a growing literature documenting the complex realities of consent processes in the field, and the negotiations and ethical dilemmas involved. Much has also been written about how gender and power shape household decision-making processes. However, these bodies of literature have rarely been brought together to inform research theory and practice in low-income settings. In this paper, qualitative research (observation, focus group discussions and interviews) were used alongside large clinical community-based studies conducted on the Kenyan Coast to explore how gender and power relations within households and communities and between fieldworkers and communities shape consent processes and interactions. This exploration is embedded in relevant literature and the implications for community-based health research policy and practice are considered. Across diverse forms of households, we observed significant consultation on whether or not to participate in research. Although men are typically described as household decision-makers, in practice, decision-making processes are often far more nuanced, with many women using their agency to control, sometimes subtly, the decisions made. Where decisions are made without adequately consulting women, many find strategies to exercise their choice, in ways that safeguard important relationships within households in the longer term. We also found that the gender of field staff who typically conduct research activities in the field, including consent processes, can influence household dynamics and decision-making processes with important implications for the science and ethics of research. It is essential that frontline field staff and their supervisors are aware of the complex and gendered realities of consent processes at household level, and their implications, and that they develop appropriate context-informed approaches that support ethical practice

'All her children are born that way': gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya.

OBJECTIVES: To explore early experiences of sickle cell disorder (SCD) in families with a young affected child, and the way these experiences influence relations within families. To consider ways in which stigma could be counteracted in health and research programmes in sub Saharan Africa. DESIGN: A qualitative study was conducted in a rural area of coastal Kenya including in-depth interviews with 13 families affected by SCD and 12 staff of a local biomedical research progamme. Purposive selection aimed to maximize diversity in socioeconomic and educational status, religion, severity of illness burden and religion amongst families and draw on relevant experience for staffs. Interviews were recorded, transcribed and analysed using the constant comparative method for family interviews and a thematic framework approach for staff data. RESULTS: Low initial recognition of SCD and its cause were associated with lay practices of surveillance within affected families, contributing to stigmatisation that occurred independently of genetic knowledge. Blame was often placed on mothers, including a risk of blame for misaligned paternity. Mothers are often particularly affected by SCD through the loss of independent livelihoods and their limited options in coping with this chronic condition. CONCLUSIONS: Mothers of children with SCD were particularly vulnerable to stigmatisation within families, with underlying structural influences that suggest these findings may apply to other similar settings in Africa, and have relevance for other genetic conditions. The potential, nature and form of stigmatisation point to the role of effective communication and SCD management in addressing for blame and discriminative effects of having a child with SCD. The findings highlight the importance of broader social programmes targeting underlying gender and economic inequalities

Engaging communities to strengthen research ethics in low-income settings: selection and perceptions of members of a network of representatives in coastal Kenya.

There is wide agreement that community engagement is important for many research types and settings, often including interaction with 'representatives' of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members ('KEMRI Community Representatives', or 'KCRs') linked to a large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential

Enhancing fieldworkers' performance management support in health research: an exploratory study on the views of field managers and fieldworkers from major research centres in Africa

INTRODUCTION:Fieldworkers are part of the system that promotes scientific and ethical standards in research, through data collection, consenting and supporting research, due to their insider cultural knowledge and fluency in local languages. The credibility and integrity of health research, therefore, rely on how fieldworkers adhere to institutional and research procedures and guidelines. OBJECTIVES:This study mapped out existing practices in training, support and performance management of fieldworkers in Africa, described fieldworkers' and their managers' experiences, and lessons learnt. A consultative process, involving field managers from 15 international health research institutions, was used to identify appropriate ways of addressing the challenges fieldworkers face. METHODS:In phase 1, we conducted 32 telephone interviews with 20 field managers and 12 senior fieldworkers from 18 major research centres in Africa, Medical Research Council-UK and the INDEPTH Network Secretariat. In phase 2, we held a 2.5-day workshop involving 25 delegates, including 18 field managers from the institutions that were involved in phase 1 and 7 additional stakeholders from the KEMRI Wellcome Trust Research Programme (KWTRP). An earlier report from phase 1 was published in BMC Med ical Ethics in 2015. Data transcribed from the interviews and workshop proceedings were analysed thematically using NVivo V.10 software. RESULTS:Most institutions employed fieldworkers, usually with 12 years of formal education and residing within the geographical areas of research, to support studies. Although their roles were common, there were marked differences in the type of training, professional development schemes and fieldworkers support. Fieldworkers faced various challenges, with the potential to affect their ethical and scientific practices. DISCUSSION:Fieldworkers undertake vital tasks that promote data quality and ethical practice in research. There is a need for research institutions to develop a structured support system, provide fieldworkers with interpersonal skills training, and provide space for discussion, reflection and experience sharing to help fieldworkers tackle the practical and ethical challenges they face

Evolving friendships and shifting ethical dilemmas: fieldworkers' experiences in a short term community based study in Kenya.

Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes

Experience of Kenyan researchers and policy-makers with knowledge translation during COVID-19: a qualitative interview study

Objectives Researchers at the KEMRI-Wellcome Trust Research Programme (KWTRP) carried out knowledge translation (KT) activities to support policy-makers as the Kenyan Government responded to the COVID-19 pandemic. We assessed the usefulness of these activities to identify the facilitators and barriers to KT and suggest actions that facilitate KT in similar settings. Design The study adopted a qualitative interview study design. Setting and participants Researchers at KWTRP in Kenya who were involved in KT activities during the COVID-19 pandemic (n=6) were selected to participate in key informant interviews to describe their experience. In addition, the policy-makers with whom these researchers engaged were invited to participate (n=11). Data were collected from March 2021 to August 2021. Analysis A thematic analysis approach was adopted using a predetermined framework to develop a coding structure consisting of the core thematic areas. Any other theme that emerged in the coding process was included. Results Both groups reported that the KT activities increased evidence availability and accessibility, enhanced policy-makers’ motivation to use evidence, improved capacity to use research evidence and strengthened relationships. Policy-makers shared that a key facilitator of this was the knowledge products shared and the regular interaction with researchers. Both groups mentioned that a key barrier was the timeliness of generating evidence, which was exacerbated by the pandemic. They felt it was important to institutionalise KT to improve readiness to respond to public health emergencies. Conclusion This study provides a real-world example of the use of KT during a public health crisis. It further highlights the need to institutionalise KT in research and policy institutions in African countries to respond readily to public health emergencies

Community engagement in biomedical research in an African setting: the Kintampo Health Research Centre experience.

BACKGROUND: Community engagement (CE) is becoming relevant in health research activities; however, models for CE in health research are limited in developing countries. The Kintampo Health Research Centre (KHRC) conducts research to influence health policy locally and also internationally. Since its establishment in 1994 with the mandate of conducting relevant public health studies in the middle part of Ghana, KHRC has embarked on a series of clinical and operational studies involving community members. In these studies, community members have been engaged through community durbars before, during and also after all study implementations. Lessons learnt from these activities suggested the need to embark on further CE processes that could serve as a model for emerging research institutions based in African communities. METHODS: Interactive community durbars, workshops, in-depth discussions, focus group discussions and radio interactions were used as the main methods in the CE process. RESULTS: Community members outlined areas of research that they perceived as being of interest to them. Though community members expressed continual interest in our traditional areas of research in communicable, maternal, neonatal and child health, they were interested in new areas such as non- communicable diseases such as diabetes and hypertension. Misconceptions about KHRC and its research activities were identified and clarified. This research provided KHRC the opportunity to improve communication guidelines with the community and these are being used in engaging the community at various stages of our research, thus improving on the design and implementation of research. CONCLUSION: KHRC has developed a culturally appropriate CE model based on mutual understanding with community members. The experience obtained in the CE process has contributed to building CE capacity in KHRC. Other health research institutions in developing countries could consider the experiences gained