The importance of cultural competence for effective, patient-centered healthcare and participant-centered research is largely undisputed, though consensus on its definition is elusive. Since its inception more than 50 years ago, our parent company, FHI 360, has placed cultural competence at the center of its mission, which has carried through our work with communities worldwide at FHI Clinical. Providing culturally sensitive and unbiased care helps reduce disparities in access to the research that can improve communities’ health.1
FHI Clinical team members acknowledge the value of cultural competence in their work. They consider showing respect, caring for participants and being able to problem-solve collaboratively essential elements in good trial outcomes and high-quality data. Watch the video to hear directly from our team.
Challenges around defining and achieving cultural competence are driven by the inherently nuanced social and cultural contexts in which we exist. Peopledo not necessarily fit into discrete categories, and a single person can belong to and identify with many cultures (e.g., race/ethnicity, sexual orientation, family status, gender identity, language, profession, religion, socioeconomic status). In addition, researchers bring their own experiences and identities to every interaction.
Understanding how cultural complexity influences the research process and adopting strategies to minimize the influence of personal biases can contribute to successful research that includes diverse populations.
Hard to define AND worth the effort
The scope of cultural competence varies across the literature and includes:
- The ability to work effectively with individuals of different cultural backgrounds2
- Awareness of the unique and defining characteristics of the populations from which they wish to enroll clinical research participants3
- Multidimensional and lifelong learning process that integrates transcultural skills and involves self-efficacy (confidence)4
- Respect for the diversity in the patient population and cultural factors that can affect health: language, communication styles, beliefs, attitudes and behaviors1
Key to reaching target communities
The goal of much health research, and the researchers behind it, is to improve the health of the populations affected by the target disease. Yet, many research studies fail to reach the communities who would benefit most from their intervention. Although there are many reasons for this (including site inequity, which our Vice President of Global Strategy, Ghiorghis Belai, discussed in a recent article), research has shown that, despite a willingness of community members to participate and the use of study materials that are translated into local languages, not doing the following negatively impacts engagement and, therefore, recruitment3:
- Identifying outcomes that are important for the community
- Communicating the study in a way that resonates with the participants
- Placing the study within a culturally appropriate context
- Accessing the target population
Respect for others at center stage
Research has shown that cultural competence can be effectively taught and fostered,2 and the Cultural Competence and Confidence (CCC) model suggests that it should be a continuous learning process since cultures, and our understanding of them, are dynamic.4
Interventions aiming to better engage different cultures are most effective when applied as a value and focus across the organization, from the individual researcher or provider level to the system level.1 For the target population, strategies could include those that address any physical barriers to accessing research.
Experts in the area have also suggested that cultural humility — lifelong learning, self-reflection and self-critique — should lie at the heart of researcher-participant interactions.5 Achieving an “other-oriented” perspective involves changing attitudes and self-awareness, which can be applied to all interactions, versus learning specific facts about other cultures, which could risk stereotyping and oversimplifying culture complexities. This “other-oriented” approach centers around respect for other people’s lived experiences and unique challenges that might influence how they interact with research, as well as the recognition that each person, both the researcher and participant, brings their unique value to the relationship.
Strategies for success
Incorporating cultural considerations can facilitate positive research interactions, successful research participation and positive research and health outcomes. For example, improvements in hepatitis B-related knowledge for Indigenous Australians have been reported using a culturally appropriate intervention.6
Starting in the study design phase, the following should be considered:
- How participants’ perspectives might influence their willingness to consider, enroll or stay in a research study
- The political, social and individual contexts that could influence an understanding of the research and the informed consent process
- How to accomplish bi-directional information exchange and what information (and in what formats) is relevant to the target population
- Whether existing data collection tools are valid and appropriate for the setting and population
- If the interventions should be adapted to align with cultural beliefs, values and practices
Three different types of strategies have been suggested: community, cultural and language.7
A community- or participant-driven approach contributes to understanding whether the research will be considered valuable to the community and how to structure the trial to gain the engagement required for successful enrollment and retention. This was discussed within the African setting in our recent webinar, highlighting the importance of community engagement for successful trials in a continent as diverse as Africa. Community partnerships, meetings with community gatekeepers, community advisory boards, use of community spaces (religious facilities, community centers, tribal clinics) and relevant media,7 as well as cooperation with traditional healers and community health workers8 should be considered.
Community advisory boards contribute to a trial’s success | |
|---|---|
Contextualizing the informed consent process and protocol | Schizophrenia genomics study in South Africa:
Recommended field workers use simple language + visuals, schizophrenia explanation, separate consent for HIV testing9 |
Sensitizing and managing rumors in the community | Malaria IPTp study testing for placental malaria in Malawi: Responded to “researchers are selling women’s placentas”10 |
Assisting with participant recruitment, tracking and retention
| Malaria IPTp + insecticide-treated bed nets in Tanzania: Recommended community health workers directly supervise drug administration and bed net use11 |
Commonly used cultural adaptations include recognizing family involvement and the role of extended family, as well as the use of culturally relevant metaphors or interactive, visual intervention resources.7 Staffing a study with local researchers and frontline staff who reflect the participant population or the community’s diversity can aid with acceptance of the research by participants.12 At FHI Clinical, we’ve found having staff on the ground where we’re conducting research has been particularly helpful in engaging communities.
“The Social Mobilization and Communication unit in PREVAIL is a unique group of people that is directly involved with the communities during social science research or clinical trials. They help mobilize the community and explain what the program is about — the benefits and risks — in language the community will understand.”
The presence of local researchers also helps overcome potential language barriers. Other ways to make interventions linguistically appropriate are to adapt them to the local language or to primarily use visual resources. Information can be provided by trained community members. This will minimize the risk of misinterpretation on both sides — of the materials by potential participants and of participant responses by researchers.
Help to those who need it most
Incorporating cultural awareness, sensitivity, humility and respect into clinical trial design contributes to overall trial success by ensuring that the research will be relevant, well-communicated and accepted by the target communities. This also means that health research is more likely to reach populations who would benefit the most, even in challenging circumstances, as our local resources found when supporting a study of a Chikungunya vaccine.
Want to learn how we can help you with your global research? Contact us today.
References
- Improving Cultural Competence to Reduce Health Disparities for Priority Populations. Agency for Healthcare Research and Quality. July 8, 2014. Available from https://effectivehealthcare.ahrq.gov/products/cultural-competence/research-protocol.
- Lawless ME, Muellner J, Sehgal AR, Thomas CL, Perzynski AT. Cultural Competency Education for Researchers: A Pilot Study Using a Neighborhood Visit Approach. SOCRA Source. 2014;81:12-21.
- O’Brien RL, Kosoko-Lasaki O, Cook CT, et al. Self-Assessment of Cultural Attitudes and Competence of Clinical Investigators to Enhance Recruitment and Participation of Minority Populations in Research. J Natl Med Assoc 2006;98(5):674-682.
- Jeffreys MR. Teaching cultural competence in nursing and health care: Inquiry, action, and innovation (3rd ed). 2016. Springer. https://doi.org/10.1891/9780826119971
- Hook JN, Davis DE, Owen J, et al. Cultural humility: Measuring openness to culturally diverse clients. Journal of Counseling Psychology 2013;60(3):353-366 doi:10.1037/a0032595
- Davies J, Bukulatjpi S, Sharma S, et al. Development of a culturally appropriate bilingual electronic app about hepatitis B for indigenous Australians: towards shared understandings. JMIR Res Protoc 2015;4(2):e70. doi:10.2196/resprot.4216
- Jongen CS, McCalman J, Bainbridge RG. The implementation and evaluation of health promotion services and programs to improve cultural competency: a systematic scoping review. Frontiers in Public Health 2017;5.
- Brach C, Fraserirector I. Can cultural competency reduce racial and ethnic health disparities? A review and conceptual model. Med Care Res Rev 2000;57(Suppl 1(4)):181–217. doi:10.1177/107755800773743655/
- Campbell MM, Susser E, de Vries J, et al. Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study. BMC Med Ethics 2015;16:45. https://doi.org/10.1186/s12910-015-0037-5
- Manda-Taylor L. Establishing community advisory boards for clinical trial research in Malawi: Engendering ethical conduct in research. Malawi Medical Journal 2014;25(4). https://www.ajol.info/index.php/mmj/article/view/102066
- Mtove G, Kimani J, Kisinza W, et al. Multiple-level stakeholder engagement in malaria clinical trials: addressing the challenges of conducting clinical research in resource-limited settings. Trials 19, 190 (2018). https://doi.org/10.1186/s13063-018-2563-1
- Hussen SA, Kuppalli K, Castillo-Mancilla J, et al. Cultural Competence and Humility in Infectious Diseases Clinical Practice and Research. The Journal of Infectious Diseases 2020;222(Supplement_6):S535-S542,
https://doi.org/10.1093/infdis/jiaa227
