Community-Engaged Approaches to Cervical Cancer Prevention and Control in Sub-Saharan Africa: A Scoping Review

"...because cultural context is central to uptake of services of behavior change, identifying and partnering with community networks is essential for the success of any research effort that aims to change perceptions and behavior of the community."

The high incidence of cervical cancer in Sub-Saharan Africa (SSA) is a complex issue with social, cultural, and economic components. There are various barriers surrounding cervical cancer prevention and control in this context, such as a lack of knowledge about the human papillomavirus (HPV) vaccine and perceptions that this key preventive measure will encourage socially unacceptable behaviour among young recipients. One method for understanding such barriers is community-based participatory research (CBPR), wherein community members are active participants from the onset of the entire research process, which can result in more education, empowerment, and trust. Through a scoping review, this study sought to explore CBPR in cervical cancer prevention and control in SSA and to describe best practices.

As outlined here, "community engagement" usually signifies including community members in research, but within a limited scope. For example, community members are often invited to share their experiences in focus groups and/or interviews, but CBPR - a specific type of community-engaged research - is a tool for taking this practice to the next level. The CBPR framework consists of 8 principles: recognising community as a unit of identity, building on strengths and resources within the community, facilitating collaborative partnerships in all phases of the research, integrating knowledge and action for mutual benefit of all partners, promoting a co-learning and empowering process that attends to social inequities, involving a cyclic and iterative process, addressing health from both positive and ecological perspectives, and disseminating findings and knowledge gained to all partners. These principles emphasise the importance of partnership between the researchers and the community, leading to attention to and action addressing community needs, as well as implementation and dissemination of research findings within community networks.

After searching 5 databases, screening 620 titles and abstracts, and reviewing 56 full-text articles, the researchers found 9 articles (published between 2005 and 2019 and describing research in Ghana, Kenya, Zambia, Senegal, South Africa, and Nigeria) that met the selection criteria. While all 9 articles may not have explicitly referenced CBPR, they articulated use of CBPR principles. The articles describe work that largely took place in rural settings predominantly among women age 15-65 years. Selected findings:

• In all 9 studies, the community-engaged approach was appropriate because of the existing social networks among community partners that researchers used to spread information about cervical cancer and its prevention. Those community groups provided both a platform for the research effort and a context for future implementation of community-based cervical cancer prevention strategies. Examples of use of CBPR principles included identifying and engaging the intended population through tribal leaders, religious leaders, and community health workers in order to increase knowledge about cervical cancer and increase screening.
• In terms of aspects of cervical cancer research where community engagement has been used, the articles focused on 3 themes: (i) assessing perceptions about cervical cancer, (ii) adapting existing cervical cancer screening strategies, and (iii) identifying and leveraging community partners. For example, on (i), the articles identified community radio and local health talks as viable routes for information dissemination and attitude change around cervical cancer. The authors found that the use of reputable community resources was a promising approach, with support from spouses and community leaders a key motivator in increasing use of prevention services. However, community stakeholders emphasised that health-seeking behaviour occurs in a context shaped by economic, structural, and interpersonal conditions and that health interventions need to address the multiple anxieties and lived experiences of the intended population group.
• Based on reported outcomes from each of the included studies, best practices for CBPR with the goal of cervical cancer prevention and control include: (i) working within existing community social support structures; (ii) including members of the intended community and their social networks in the implementation of the research effort; and (iii) training those members to disseminate study findings to other members of those groups. In addition, creating a social culture in which women are empowered to seek out and receive cervical cancer preventative services removed barriers that women face.

"Across all the studies, engaging local community leaders - chiefs, pastors, educators, and other leaders - yielded favorable results for increasing knowledge and use of cancer screening services. Interestingly, studies found that husbands also played an influential role in determining whether women would get screened....[F]urther research on knowledge about and acceptability of cervical cancer screening among men is necessary to provide further context about the sociocultural influences on cervical cancer screening utilization among women."

The researchers delve into the use of the 8 CBPR principles in the included articles, suggesting that these principles "are an important research guiding tool and a means to enhance community engagement practices in tangible ways, because they can aid in anticipating and addressing research limitations that are commonly observed when working in underserved populations before the research is completed."

Despite the promise of the CBPR approach, there are several challenges and limitations with the implementation of the CBPR principles that arose across the studies. For instance:

• Across both rural and urban settings, researchers encountered local dialects and languages that did not have a word for "cancer". This finding emphasises the importance of community engagement and supports the need for partnerships between researchers, healthcare providers, and community members who can speak to those barriers. This approach has the potential to not only improve the research effort but also to empower community members by enabling them to leverage their expertise in their culture and community to address their needs.
• The majority of rural women receive their information about women's health from other women in the community, because this is their most accepted way of storytelling and information sharing. Frequently, the community can share misinformation on these topics (e.g., on HPV vaccination) guided by myths, misconceptions, and other personal beliefs. It is here where a medium like radio could be used to share cervical cancer education; even rural populations in SSA report having access to radio and reportedly gather in the evenings to listen to the radio news in their native language. Using a widely available resource to build awareness can help normalise cervical cancer screening and HPV vaccination.
• Communication between health professionals and community members may be hindered by limited access to technology; relatedly, another barrier cited in the studies was loss to follow-up. One article suggested health fairs that were planned around seasonal activities, thereby providing an occasion for healthcare providers to interact with community members outside of the traditional healthcare setting.

In conclusion, despite the effort involved in adhering to CBPR principles, "The intentional identification and development of equitable and collaborative partnerships between institutions, healthcare providers, and community members to address cancer related health disparities is the next necessary step toward addressing the needs of underserved community members living in sub-Saharan Africa and other communities globally."