Abstract
Relatively few studies to-date have examined research communities’ perspectives on fundamental characteristics of health research. This study contributes to the literature by investigating what selected local communities in Botswana understand to be the nature and value of health research for their communities, and the distinction they make between health research and medical intervention. Semi-structured focus groups and in-depth interviews were conducted with participants from two ethnic groups that represent dominant linguistic populations in Botswana. Thematic content analysis was used to identify emerging themes. Results showed that participants viewed health research as a process of increasing and generating knowledge about health-related issues. Some viewed participation in health research as equivalent to receiving medical care. Interference with traditional practices and beliefs were identified as some of the challenges that may impede research participation. Although local communities’ participation in health-related research may have strategic and intrinsic value for the promotion of societal health outcomes, the perceptions that communities have about health research and medical or health care continue to be blurred. This study unearthed some of the uncertainties that researchers may take for granted, particularly when research communities confuse research and medical care.
Introduction
Health research around the world is increasingly being conducted in community settings and involves people who may have limited prior exposure to research conduct. In Botswana, the context where the present study was conducted, there are active clinical and epidemiological research activities in such communities. Fueled, in part, by its high prevalence of HIV, Botswana has had a growing number of biomedical research initiatives funded by international institutions such as the U.S. National Institutes of Health (NIH), the Bill and Melinda Gates Foundation, the United States President’s Emergency Plan for AIDS Relief (PEPFAR), and others. Alongside local researchers, international institutions frequently engage in local research initiatives such as Botswana-Harvard AIDS Institute, Botswana United States of America Project (BOTUSA), and the Baylor International Paediatric AIDS Initiative (BIPAI; Barchi et al., 2015). To address growing health problems, Botswana opened its first medical school in 2009, the University of Botswana School of Medicine, to complement other privately and publicly funded institutions that were recently established to introduce health, life sciences, and public health research and programs. This has contributed to many health-related studies being conducted in the country, including community-based research. In this context, questions have emerged about how communities in Botswana perceive health research, and how they distinguish it from provision of health care.
While Botswana does not have a broad legal definition of research, the U.S. Common Rule defines research as “a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge” (Protection of Human Subjects in Research, 45 CFR Part 46, 2018). People who do not have regular exposure to research or research regulations may understand “research” in ways that differ from how researchers, research institutions, and research oversight entities conceptualize it. For instance, several studies have demonstrated a disconnect between researchers’ and study participants’ understanding of the benefits, risks, and motivations for health research (Friedman et al., 2013; Paré Toe et al., 2013; Van Nuil et al., 2020). This can have implications for participation in research, the validity, reliability, and trustworthiness of findings and the ethical quality of engagement.
Scholars have emphasized health research as being imperative for improving the quality of health care. For instance, IJsselmuiden and Matlin (2006) viewed health research as an “indispensable component of growth and development for people and nations” as it contributes to the continuous development of health interventions meant to improve quality of health care delivery. Similarly, in their literature review of research studies that reported the societal impact of health research, Buxton et al. (2004) identified multiple potential contributions of health research, including cost savings that may result from the discovery of new less expensive treatments. Some studies have also identified community perspectives on the value of health research. For instance, in New Mexico, members of rural and urban Hispanic and Native American communities highlighted the potential for research to be beneficial to health and society, but also identified several negative elements and fears that were seen as important to address in order to realize this potential (Williams et al., 2010). Similar sentiments were held by individuals across other settings, who identified health research as being valuable to promoting and monitoring access to quality health care, if conducted ethically (Fogel, 2018; Townsend and Cox, 2013).
One threat to understanding research is the therapeutic misconception, which occurs when a research participant views a clinical trial as essentially equivalent to clinical care in its therapeutic potential, when in fact this is not known to be the case (Lidz and Appelbaum, 2002). This can undermine a core goal of informed consent, namely ensuring that individuals enter research with sufficient comprehension of key features of a research activity. As such, therapeutic misconception is based on the premise that participants may misconceive the intentions of researchers as therapeutic (Litton and Miller, 2005) or may misunderstand the study as a whole, or specific study procedures in particular, as being “designed to provide personal medical benefit” (Miller et al., 2008: 271).
The therapeutic misconception is a complex phenomenon that can emerge due to many factors. Researchers may frame clinical trials in terms of hoped-for intervention efficacy; institutions known for providing exemplary health care may also be the same ones conducting field-leading research; companies developing novel interventions and media outlets covering their efforts may promote “promising” results from early phase or pre-clinical studies; and participants may seek out clinical trials under time pressures and where alternative therapies are limited, to address pressing health needs. As a result, the notion of research as being a vehicle for access to the “newest and best” treatment is common, and can indeed be readily transferred from the clinic to the community.
To add further potential for uncertainty about the goals and nature of research, for important ethical reasons, calls have been made for researchers to provide “fair benefits” to research communities, and to address certain “ancillary care needs” of research participants. The latter is commonly understood as health care that research participants need “but that is required neither to successfully answer the researchers’ scientific question nor to avoid or mitigate harm resulting from participation in the research.” (Participants in 2006 Georgetown University Workshop on Ancillary-Care Obligations of Medical Researchers Working in Developing Countries (2008: 0709). Similarly, Botswana’s Guideline for Regulating the Conduct of Clinical Trials Using Medicines in Human Participants (Republic of Botswana, 2012) recommends that researchers ensure that there is provision of medical care for those who participate in clinical trials in case there are any adverse events, and when medical care is needed for any intercurrent ailments that researchers discover. While well-meaning, this emphasis in the literature and guidelines can further contribute to research participants and community members understanding research to be something that is designed to address their immediate health, and potentially other, needs.
Describing the goals of health research, and how it differs from other types of health-related activities that people may be familiar with, is of immense importance before confirming peoples’ participation in research. Studies continue to show that public awareness regarding the meaning and value of health research is diverse and limited, especially in low-resource settings, and that more work needs to be done to address misconceptions surrounding health research (Paré Toe et al., 2013). In general, many communities would value more information about research than they are typically exposed to. A study conducted by Pelletier et al. (2020) found that rural communities from northern British Columbia, Canada expressed the need for more robust health research communication to increase understanding of how to effectively include community members as partners on research teams. There are also indications of community dissatisfaction with how researchers conduct research when it is perceived that inadequate information about a study is provided (Wallerstein and Duran, 2006).
A body of empirical and conceptual literature has emerged from Botswana in recent years to begin to uncover several important research ethics perspectives and considerations. This includes scholarship on the implications of adhering to “western” bioethical ways of knowing and how they can clash with cultural ways of knowing in research processes (Shaibu, 2007); methods and challenges of gatekeeping and various community understandings of how “respect” can be demonstrated during research (Koloi-Keaikitse et al., 2021; Ramabu, 2020); the need for capacity building for academic staff and IRB members on research and ethics standards (Barchi et al., 2015; Hyder et al., 2013; Ralefala et al., 2018); and applications and analyses of philosophical and traditional moral constructs as applied to research in Botswana (Gaie and Mmolai, 2007; Steyn, 2012). Additional research has explored community perspectives on return of genomic research results (Ralefala et al., 2023); on the collection, use and storage of human biological samples for research (Barchi et al., 2015); and on whether principles of solidarity and reciprocity underpin researcher obligations, locally, to provide genetic research results (Ralefala et al., 2020).
This study contributes to this literature by investigating what selected local communities in Botswana understand to be the nature and value of health research for their communities, and the distinctions they make between health research and medical intervention. To our knowledge, no prior study in Botswana has directly examined this topic. Findings of this study could inform development of communication strategies that can benefit researchers, as well as those invited to participate in research in the country, and potentially beyond. The findings of this study are also pertinent to efforts that seek to align key stakeholders’ perspectives on health research within the country to advance more effective, efficient, and ethical research practice, oversight, and policy.
Methods
Research design
This qualitative study investigated what selected local communities in Botswana understood to be the nature and value of participating in health research and how they perceived the meaning of health research and medical intervention. Data were collected through semi-structured focus group discussions (FGDs) and in-depth interviews (IDIs) with homogeneous subsets of two ethnic groups that represent dominant linguistic populations in Botswana. A multiple case study design provided an opportunity to reveal potential differences and similarities between groups (Anaf et al., 2007).
Study setting
Botswana has 16 major ethnic groups. Of these, traditionally, nine are preferentially Setswana speaking, while seven are preferentially non-Setswana speaking. To ensure some representation, one ethnic group from the south (Bakwena) was selected from the nine preferentially Setswana speaking groups, and one ethnic group from the north-east (Bakalaka) was selected from the seven preferentially non-Setswana speaking groups. The Bakalaka peoples are predominantly non-Setswana speaking when conversing within their ethnic group, but many can understand and speak Setswana
Study population and recruitment procedures
There were several types of participants in this study. IDIs were conducted with the paramount chiefs of both the Bakwena (n = 1) and Bakalaka (n = 1) tribes, as they are the main custodians of local cultural norms and traditions. FGDs were conducted with a purposive sample of village headmen who assumed the role of main administrative community leader and who worked with ward representatives from each ethnic group (n = 7 and 9, respectively). FGDs were also completed with traditional healers (n = 4 and 3), elderly persons (n = 5 and 4), and young adults (n = 7 and 7) who were selected with the support and advice of village headmen from each of the selected ethnic groups. Asking headmen for their assistance with recruitment was important to reaching relevant groups in a manner that was both effective and culturally appropriate. A total of five focus group discussions were conducted in Molepolole (a large village in the Bakwena tribal region) and five in Masunga (a village in the Bakalaka region). Focus group members were purposefully recruited to reflect the noted range of roles in the community and demographic characteristics such as gender, ethnicity, and age.
The first author and a research assistant visited the paramount chiefs in kgotlas (traditional places of official assembly) and used recruitment scripts to invite them to participate in the IDIs. The same process was followed with headmen for FGDs. Headmen were then provided with scripts to facilitate identification of elderly persons, traditional healers, and young adults who may be interested in meeting with the research team to learn more about the study and consider participation.
Data collection and analysis
There were two data collection instruments: a brief demographic survey to document participants’ ethnic group, gender, age, type of job if working and length of experience; and a semi-structured discussion guide used for both the IDIs with paramount chiefs and the FGDs with other participants. Informed by literature and developed by the research team (SK-K, JA, and GG), the guide was designed to collect local community perceptions about the nature and value of health research as well as to document their perceptions regarding health research and medical intervention. The guide was improved through pilot interviews, which resulted in a few adjustments, including changes to some items to clarify meaning, and the addition of some examples.
At the initial stage of data collection, permission to consult with local communities was obtained from paramount chiefs of selected ethnic groups in Molepolole and Masunga. Recruitment scripts were used to inform participants about the study and to solicit their participation. Informed consent was obtained from individuals who expressed interest in participating in the study. Focus group discussions for each subgroup (headmen, elderly persons, traditional healers, and young adults) were conducted in private kgotla offices and lasted for 1 hour 30 minutes on average. In-depth interviews with paramount chiefs were conducted in their offices and lasted 60 minutes on average. Participants were asked open-ended and follow-up questions to solicit further clarifications, as needed. All FGDs and IDIs were conducted in Setswana language based on participant preference, though a member of the data collection team could speak the local Bakalaka language, if needed. All discussions were audio recorded with permission. A research assistant helped with taking notes. Participants were provided with refreshments and given thirty Botswana pula ($3.00 USD) to cover their transportation costs.
We adopted a manual, thematic content analysis method suitable for analyzing data across multiple researchers with different linguistic, geographic, and cultural backgrounds. First, to support construction and maintenance of local semantic meaning, all transcripts were initially reviewed by (SKK & DJ) in Setswana, and an initial set of codes were developed. Transcripts were also translated to English with back translation to check consistency. Over several meetings, the initial codes were then discussed with other research team members (JA, GG, and EW), in English, to support the first author (a post-doctoral fellow) with developing additional reflections and insights. Codes were revised through this process and re-applied to the transcripts. From this, a first set of grouped themes were identified, compiled, and discussed within the study team. Some themes and codes were re-adjusted and re-associated with content to achieve consensus.
Before initiation of data collection, the research team obtained ethical approval from Institutional Review Boards (IRBs) of the Johns Hopkins University Bloomberg School of Public Health (USA) and the University of Botswana. Permission to collect data from local communities was obtained from the Botswana Ministry of Local Government and Rural Development. Paramount chiefs in Molepolole and Masunga were also consulted to obtain permission to conduct focus group discussions and in-depth interviews within their communities. Individual informed consent was sought from each participant as well as permission to audio record the discussions.
Results
Participant characteristics
Collectively, two in-depth interviews and 10 focus group discussions were conducted with a total of 48 participants from both villages. Of the 48 total participants, 32 were male, and participants’ ages were widely distributed given the intentional creation of groups that had both younger and older people. Thirty-six participants had no prior research participation experience. Headmen, followed by young adults, were more likely to have participated in research compared to elderly persons (See Table 1).
Demographic characteristics of focus group discussion and in-depth interview participants.
FGD: focus group discussion; IDI: in depth interview.
Discussions with focus group and in-depth interview participants revealed several key findings, including a general appreciation for the value of health research, as well as variations in understandings of the difference between health research and health care, in articulation of conditions for participation in health research, as well as in potential community- and individual-level challenges for research implementation.
Value of health research
When asked about why they or members of their community might participate in health research, some focus group participants understood health research as offering the potential to increase and generate knowledge about health-related issues. Several participants also viewed health research as a process for improving or strengthening the health care delivery system.
There are so many diverse types of diseases nowadays it may be helpful to participate in health research to have an increased knowledge of how to fight such diseases (Headman 07). I can participate in health research because it can strengthen health care (Elderly Person 10). [Research] can indicate to health workers where a major health problem is in the community (Headman 03). Health care is especially important and can be improved through research (Young Person 07).
Perspectives about how health research and health care relate
When asked specifically about how health research related to health care, participants had mixed perceptions about the distinction between the two. A spectrum of viewpoints emerged, with at one end a few participants articulating clear differences between research and medical care, as suggested in the following statements:
Yes ma’am, in my knowledge there is a difference in research and medical care. At the hospital, consultation is done. In research, researchers may look at broad based factors, internal/external, [and] test a hypothesis. However, our elderly people and some of our community members in our villages may lack knowledge to distinguish between research and medical care. That is why it is important that our communities are educated on these matters for informed decisions (Paramount Chief 02). There is a difference between research and medical care. In research, one may want to understand how the disease came and what can be done to prevent that disease. For example, research can be done to understand the cause of cancer and what to do to prevent cancer. In medical care a patient is given relevant care to help alleviate their ailment. That is my little understanding of these two unless I am wrong (Headman 12).
However, the majority of participants (in the middle of the spectrum) said that research is part of medical or health care given to those who volunteer to participate. These participants believed, based on their experience, that those who are asked to participate in health research will receive health care in the process, but explained their views in a way that potentially signals some understanding of the complex relationship between research and health care access. For example, many health studies provide some health-related services as part of the research activities. This sentiment is reflected in the following:
I know that when health workers ask people to participate in health research that is part of them to receive medical care. For example, when HIV started, I believe people who were asked to be part of HIV research received some medication for HIV so I believe health research can help people receive medication before other people receive it (Headman 15).
At the other end of the spectrum, participants (particularly those who were older) viewed health research as integral to medical intervention, intimately tied together in one professional act. For these individuals, research was viewed as how doctors identify the causes of disease and make diagnoses, prognoses, and treatment recommendations. Research was not seen as separate from uncovering information about individual patients and what they need in order to advance their care. For example, participants shared:
When a medical doctor diagnoses a patient, the doctor conducts research to understand the course of the disease. Hence medical intervention starts with research (Headman 09). I am of the view that medical intervention starts with research to understand the cause of the disease. I do not see the difference; this is because when a doctor heals a patient it is important for him/her to conduct some research so that they give appropriate medical care. When a medical doctor collects blood from a patient to assess what could be ailing them, that is research (Elderly Person 08).
Conditions for participation in health research
Even though there were positive attitudes toward participation in health research, some participants (particularly those who were younger) articulated conditions for participation, such as the need for detailed information, competent researchers, respect for community values and integrity by researchers, and full disclosure of risks and findings of research. It was believed particularly important that research be directed toward the interests and well-being of the community, as illustrated in the following sentiments:
Yes, health research can be of value to the community only on condition that results are shared with the community. And those who conduct this type of research are competent about what they do (Young Person 02). Health research ought to be conducted even though there are some challenges. This is because it can have value for revealing knowledge about health issues. But I can participate if it is done with respect and paying attention to community values and their integrity (Headman 12). I think I can participate in health research if ever asked to participate. . .this is because I believe this type of research can have good effects on the community for improving health care, but I can only participate if I am fully informed of the research, what it means and risks that may come with it (Young Person 11).
Challenges for research implementation
Participants also provided their perspectives on some of the challenges they attributed to health research. Some suggested that health research can clash with traditional practices which, when not observed by researchers, can have some negative implications for research participants, communities, and even researchers. For example, as is true in many parts of the world, if researchers do not adequately account for local privacy expectations and follow customs for requesting confidential information, there may be reluctance to share personal information for research purposes.
In Botswana some of us believe in traditional healing. Research can be a problem if it interferes with community belief systems (Headman 01). When a female researcher has just had a miscarriage and passes through some pregnant cows, she can cause them to miscarriage as well. She will be putting such cows in danger. She is therefore supposed to inform their owner to protect them before she can go through such cows (Traditional Healer 06). Health research cannot be without setbacks. . .this is because some of us believe that personal health is confidential. Therefore, it can cause personal conflict for some members of the community and make them reluctant to participate in health research (Traditional Healer 01).
Despite the challenges, participants still maintained the need for participation in health research because of the value they attach to improving health outcomes. But they reinforced the need to recognize and respect community values and community members’ feelings.
Yes, health research must be conducted even if there are some conflicts as it can unearth some of the health issues. But what is important is to take cognizance community feelings and their values (Headman 05).
Discussion
The goal of this study was to understand the nature and value of health research from the perspectives of two different ethnic communities in Botswana. We identified no meaningful differences between participants from the two ethnic groups. Our findings have shown that some participants perceived health research and medical care as different and synergistic, confirming perspectives held by study participants in Malawi who denoted the difference between the two as follows: “research people can take part even if they are not sick which is not the case with health care.” Participants in Malawi also distinguished between health research and medical care based on the kind of care given. Some believed that care offered in research, in their context, was superior because of confirmed diagnoses, whereas medical care on its own was perceived to be inferior because of the more substantial reliance on self-reported medical history (Mfutso-Bengo et al., 2008).
This noted, a central finding from our study was that for many participants, particularly those who were older, research and health care were seen as essentially synonymous. This suggests some potential susceptibility to therapeutic misconception amongst such individuals, which could be studied more thoroughly with the use of existing validated measures designed to assess this phenomenon (something we did not do in our exploratory study). Other research studies qualitatively assessing individuals’ understanding of research and medical care found related results. For instance, research in British Columbia and Manitoba, Canada showed that “participants perceived standard medical care to be a ‘trial and error’ process akin to research, which further blurred the boundaries between research and treatment” (Townsend and Cox, 2013: 1).
We note that the Republic of Botswana’s 2012 Guideline for Regulating the Conduct of Clinical Trials Using Medicines in Human Participants emphasizes the importance of informed consent processes that clearly explain that an activity is “research,” and it recommends provision of ancillary care for research participants, as noted. The guidelines, however, are silent about how to sensitize participants about the difference between health research and traditional medical intervention. Our study suggests that further attention to this matter, in guidelines and other public-facing educational resources, could be helpful.
More generally, many of our participants valued health research as a process that can increase knowledge about health-related issues and strengthen the health care delivery system. This is consonant with many understandings of research, and these beliefs can reasonably be held alongside other beliefs about research also sometimes providing direct benefits to participants. For example, participants in Townsend and Cox’s (2013) study saw research as a way of accessing: “(1) medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness” (p. 1). Similarly, Fogel (2018) and others have indicated that patients in hospitals often view participation in clinical trials as proving a prospect for better personal treatment as well as the potential to generate benefits for others in the future. Participants in our study also expressed the need for reciprocity as an essential condition for their likely participation in health research. In this context, participants highlighted the need for researchers to share research results with communities and that researchers respect community integrity and values. The notion of reciprocity has been numerously cited as integral to community respect in research in Botswana. For example, Ralefala et al. (2020) pointed out that “when reciprocity obligations are respected, participants feel appreciated and valued” (p. 8). The challenge and opportunity moving forward is in further defining the practicalities of operationalizing such reciprocity-based commitments across a range of study types, in partnership with research community members who can help guide the way.
Along these lines, our participants placed immense value not only on health research, but also on the need to recognize and respect community interests during everyday research practices. It was suggested that failure to safeguard individual and community well-being, and failure to respect traditional practices and beliefs, can impede participation in health research. Some participants were concerned with revealing health information which they deemed as private. Similarly, in one study in Pakistan, Memon et al. (2021) identified religious principles, moral emphasis on autonomy and privacy, respect and trust, cultural differences, and other cultural customary practices of giving and hospitality as important for promoting research participation by Indigenous communities. In Korea, a study by Choi et al. (2016) identified value in participation in health research; however, the study also found participants’ concern for safety, fear, and lack of trust were some of the main potential deterrents to community participation. Similarly in New Mexico, Williams et al. (2010) reported that Hispanic and Native American communities expressed barriers to research participation that included social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income) concerns. Despite the challenges, most participants maintained the need for participation in health research because of its value in improving health outcomes.
Overall findings of our study highlight the need for researchers and community members to work together to develop well-grounded understandings of the nature of health research (in all its various forms), how it is conducted, and how it is overseen, in an endeavor to further strengthen knowledge, respect and trust, and to empower participants to make informed decisions about participation in health research (Barchi et al., 2015; Kamuya et al., 2013; Koloi-Keaikitse et al., 2021; Pelletier et al., 2020). Additionally, our study has highlighted that understandings of health research were often blurred with those of health care, amongst several of our participants, and that in some instances, this mixed understanding appeared to be reasonably held. Especially so where understandings of research were informed by experiences wherein superior health services accompanied community-based research endeavors. In other instances, our study demonstrated a likely confused belief, amongst some, that health care service delivery typically includes a research component which is necessary for clinicians to do the work of diagnosis and treatment. One interpretation of this (mis)understanding might be that when these participants heard the word “research,” they understood the concept to mean any inductive or deductive process, without appreciating that at its core, research is designed to produce generalizable knowledge, rather than individual recommendations for care. This noted, some scholars, like Kass et al. (2013), have drawn attention to the phenomenon common to an increasing number of clinical contexts whereby health research is integrated with health delivery within “learning health systems,” intentionally blurring boundaries between research and treatment to identify the relative merits of common health care practices in real-world settings. Outside the clinical context, and especially in lower-resourced countries, this phenomenon is also increasingly common within community-based implementation research where, for example, implementation strategies for delivery of known effective interventions are the targets of investigation, rather than the interventions themselves.
Reflexivity
This study was led by a relatively senior educator and academic researcher from an institution of higher education in Botswana, who was also a bioethics post-doctoral fellow at the time of data collection and analysis. The lead author was influenced by this experiential background and leveraged it to her advantage to make meaning of conversations with study participants, drawing from shared understandings of language and culture. She was also previously trained in approaches to qualitative research that are rooted in uncovering and addressing social injustices. While not a particular motivation for this study, it’s possible that this methodological background influenced interpretation of data or development of lines of inquiry with participants through probes and the like. Other members of the research team had very different backgrounds (culturally, and to an extent, methodologically), which may have also influenced the study in ways that could be viewed positively, negatively or neutrally.
It is with the lead author’s local insights and experiences in view that she devised the snowballing sampling recruitment approach adopted for our study. This included working with village headmen to help identify potential participants across other study groups. Though this was the most appropriate sampling and recruitment strategy in the study context given norms, it could have introduced bias or undue influence if headmen were highly selective in identifying individuals who they knew to have views that reflected favorably on their own views, or if they took steps to inappropriately convince potential participants to take part in the study. We do not believe there were particularly problematic influences along these lines in our study, especially since we had an independent opportunity to speak with potential participants and to engage them in separate recruitment and informed consent processes, but we were cognizant nonetheless of the potential influence of such practices. Especially so given the common Setswana saying “lefoko la Kgosi le agelwa mosako,” translated as “a traditional leader’s word must be honoured.”
Finally, power dynamics can emerge in focus groups, and this may be visible in the interactions between researchers and participants, as well as between the participants themselves. Participants may have positioned the interviewers as experts linked to the University of Botswana, who like many other prior researchers who came to their communities to conduct their studies, were primarily concerned with collecting and using their data for personal and professional growth. While we have no concrete evidence of this belief, it is nonetheless our commitment to the study communities that we return information about our findings and use the improved understanding to work with the communities to think through next steps. In particular, we heard from participants an interest in getting more involved in the enhancement of national research policies that prioritize community interests, and we hope to help facilitate such efforts in the future.
Limitations
Our study was conducted among two selected ethnic groups in Botswana, members of which were recruited from villages away from the capital city. As such, respondent views may not represent those of some individuals living in more urban settings. There is need for more research of this nature in other regions to garner diverse public opinions about the nature and value of health research. In this regard, our study was exploratory in nature. There was also gender imbalance in our study population, with more males than females participating, which may have resulted in meaningful gender differences going undetected. While there was an imbalance overall, our impressions from the FGDs was that there wasn’t an obvious gender-associated dominance of conversations. There was cordial respect between all participants.
The two ethnic groups selected for our study are historically considered to be some the more researched communities in Botswana. In this regard, our findings, which are likely associated with participants’ general level of familiarity with research, may not be generalizable to other settings. That said, only one-third of participants in our study personally had previous experience participating in research, thereby lessening this concern, to an extent.
Conclusions
This study unearthed difficulty that some within local communities in Botswana have in distinguishing between health research and usual medical care. We also identified tensions that communities experience between the value placed on research participation on the one hand, and impediments to research participation, on the other. Many participants were motivated to participate in research for the sake of perceived personal benefit and improvements in community health outcomes, but felt it necessary to emphasize the need for respectful, culturally sensitive research practices. While some participants could identify legitimate instances where research and beneficial medical practices overlapped, providing the potential for direct benefit through research, others did not seem to understand that research was conceptually distinct from medical practice, namely in that the former primarily aims to produce generalizable knowledge, while the latter does not. While relatively common in many parts of the world, this gap in understanding is cause for some concern. At the same time, it could potentially be addressed through additional efforts within basic formal educational settings, as well as in less formal contexts, like community gatherings (as noted below).
Implications for research
For most any large-scale health research to be successful and meet its objectives, including research at national and international levels, there ought to be strong collaboration with local communities. It is important to assess the perceptions that communities have regarding the distinction between research and medical care and how their perceptions may have implications for the perceived and actual quality of research. Such an assessment would reveal whether there is a disconnect between how diverse groups may conceptualize research, and what impact that research actually has on individuals and communities. Efforts to further explore this are welcome, as are those that seek to integrate formal measures of therapeutic misconception with deeper qualitative inquiry to derive underlying meaning from such phenomena in lower-resourced and more rural settings.
Implications for community and researcher empowerment
Study findings have provided important insights from the perspectives of participating ethnic groups that can be used to inform the development of improved communications and innovative educational strategies that are context relevant. Researchers can use such strategies to meaningfully reach out to local communities with information about the distinction between health research and medical care, among other things. Findings of this study can also be used to facilitate development of capacity strengthening programs in Botswana that are geared toward bi-directional learning to enhance expertise in community-based research and informed research decision making, with an eye toward community empowerment and increasing researcher awareness for common research-related beliefs and experience.
Footnotes
Acknowledgements
The authors greatly appreciate and thank community members and leaders who participated in this study.
Funding
This study was conducted as part of a post-doctoral fellowship program supported by the Fogarty International Center of the U.S. National Institutes of Health, award number D43TW010512. The views expressed are those of the authors and do not necessarily represent the U.S. National Institutes of Health.
Ethics approval
The study was approved by the IRBs of the Johns Hopkins University Bloomberg School of Public Health (United States) and the University of Botswana. Permission to collect data from local communities was also obtained from the Botswana Ministry of Local Government and Rural Development. Permission to conduct the focus group discussions and in-depth interviews were sought and obtained from paramount chiefs in Molepolole and Masunga as required. Individual informed consent was obtained from each participant as well as permission to audio record the discussions.
