Introduction

Rural populations experience significant differences in health status when compared to the overall population. Health disparities in rural areas, including healthcare access, health insurance coverage, job opportunities, socioeconomic statuses, and health-related behaviors, such as increased rates of risky behaviors and chronic conditions like heart disease, are influenced by regional factors.1,2 To fully understand the health risk factors for rural communities, it is essential to conduct more research that goes beyond urban-rural comparisons to also explore the variations in mortality and health outcomes and dive deeper into the nuanced differences across rural populations.3

Unfortunately, the rural south leads in mortality rates for nearly all top ten causes of death.4,5 The Appalachia and Mississippi Delta regions have the lowest life expectancy in the United States. In response, the Risks Underlying Rural Areas Longitudinal (RURAL) Study, an observational population-based study, became a first-of-its-kind study of these poor and vulnerable communities in the rural south. Alabama, Kentucky, Louisiana, and Mississippi were selected for the study. The RURAL Study aims to further explore health disparities, assess regional variations, and evaluate health-related behaviors. The RURAL Study findings are intended to inform policy and generate knowledge for guiding future research and health initiatives in rural populations. During the proposal-writing phase, the overall Principal Investigator recognized the need to incorporate the perceptions of health research within these communities into the research plan. To achieve this, the local Principal Investigators in Alabama, Kentucky, Louisiana, and Mississippi were charged with gathering insights from community members on their perspectives of outreach research in their communities. The project was called the “Rural Community Listening Project.” The community’s perspective was essential to integrate their unique needs and concerns into the research plan.

The Rural Community Listening Project aimed to understand the factors that would encourage or discourage participation in the RURAL Study. Investigators wanted to hear directly from the community members regarding the question, “What influences rural community members’ willingness to participate in health research and their perceptions of their community engaging in the RURAL Study?”

Methods

Four Mississippi Counties were selected to participate in the project: Panola, Leflore, Oktibbeha, and Tishomingo. These counties were chosen to align with the RURAL Study’s intended design, which focuses on targeting rural areas with either extremely high risk (70% above the average heart, lung, blood, and sleep related mortality rates) or low risk (20% below the average). The counties were “ecologically paired within the state” based on similar levels of poverty, racial/ethnic composition, and total population size.6 To mirror the inclusion criteria of the RURAL Study, participants ranged from age 35-64 and were residents of the county for which they were reporting. No additional exclusion or inclusion criteria were implemented for this phase of the project.

The Mississippi Principal Investigator identified community health workers and community leaders to act as liaisons to recruit focus group interview participants. These community contacts were the key to recruiting 10-15 volunteers in each county to participate in a 60-90 minute group interview. Recruitment was conducted via word of mouth, calls, emails, and visits to churches and other community meeting places. The focus groups were comprised of county residents with diverse economic and educational backgrounds to best represent the demographics of the county.

The focus group process of reflecting on and responding to broad questions allows the expression of honest and spontaneous rather than intellectual responses.7 Focus groups take advantage of group communication to gain insight into respondents’ attitudes, feelings, and beliefs.8 The qualitative research team chose a descriptive design to explore the perceptions of health research within the communities to be studied. The qualitative research team developed 15 interview questions and a demographic data collection form. The interview questions were crafted to capture community members’ perceptions of research and factors influencing their participation. Along with demographic information, the team sought input on optimal locations for the mobile unit to collect research data. They also inquired about participants’ willingness to undergo exams, provide blood samples, or have X-rays taken as part of the research process. Lastly, the team explored participants’ experiences with online health surveys and electronic health tracking tools.

The research protocol was approved by the [Blinded] Institutional Review Board. The interviewers informed participants of the purpose of the Rural Community Listening Project and obtained their verbal consent for participating prior to conducting the interview. Data were collected during four focus group interviews; each county hosted one group that included 10-12 individuals. Each focus group interview was digitally recorded and transcribed. Two qualitative researchers developed a thematic analysis, which involved identifying patterns, themes, and categories within the transcript data.9 The researchers familiarized themselves with the overall data, selected meaningful phrases, coded those phrases, and identified sub-themes and themes within the coded data. The analysis resulted in a synthesis of themes for each county.

Results

The researchers interviewed a total of 45 men and women in county-specific focus groups. Of these, 13 were African American men; 19 were African American women; nine were White women; two were White men; and two were self-identified as “other race” men. The focus group participants had lived in their respective communities from; “since three days old” to 60-plus years, while nearly 25 percent of the participants stated they lived in their respective communities; “all my life.”

Regarding factors influencing participation, two themes were derived from the four transcripts: (1) Encouragement to Participate and (2) Barriers to Participation. The theme Encouragement to Participate included four subthemes: (1) the involvement of trusted community stakeholders, such as health care providers and ministers, (2) the opportunity to help the community, (3) promoting ownership and interest in one’s own health, and (4) receiving feedback and guidance. The theme of Barriers to Participation included three subthemes: (1) lack of trust, (2) the time required, and (3) transportation issues. Table 1 presents the themes and subthemes, along with data excerpts from the analysis of each county.

Table 1.Synthesis and Themes
Themes Encouragement to participate in research Barrier to participation in research
Subthemes shared across counties (1) the involvement of trusted community stakeholders, such as health care providers and ministers
(2) the opportunity to help the community (3) promoting ownership and interest in one’s own health
(4) receiving feedback and guidance.		 (1) lack of trust
(2) the time required
(3) transportation issues
Data supporting the themes by county
County Encouragement to participate in research Barrier to participation in research
Leflore County Helping the community, providing guidance on quality of life, and promoting ownership and interest in one’s own health.
“Give them something to make them think about their health; transportation, stipend.”
The best way to reach the community would be to go into the neighborhoods.
“You’d have to carry it to them in that neighborhood.”		 Time, trust, and transportation.
“It will have to be someone they trust”
“Study should provide transportation to and from the mobile unit”
Oktibbeha County Incentives, physicians, ministers, and individual relevance. “The best way to inform residents would be mail, social media, through churches, partnering with another organization, door-to-door, word -of-mouth, and email.” Meeting too much
“would not spend more than a couple of hours participating in a study.”
Panola County Involvement of trusted community stakeholders (nurses, physicians, and other health care providers). The best way to inform the community about the research would be “cell phone, email, Facebook, word-of-mouth, and newspaper.” Job, time, transportation, location of mobile examination unit, and trust.
Tishomingo County A need to be involved, a need for results and feedback, a need to know, a need for privacy, and a need to have options on how data is shared. The best way to get the word out would be “by letting the community residents pass out the information.”
“Not something we would participate in and never know what happened.” “Would like the option to receive the information”		 The location of the examination unit and the time involved.
“too much to the north or south you won’t get many participants”

In addition, the researchers learned that although participants had little to no experience with health surveys or electronic health tracking they would not be opposed to doing so. Participants stated willingness to do exams, labs, and x-rays provided they get the results, and wouldn’t have to pay for the tests. The participants recommended modes of contact for their community as word-of-mouth, social media, newspaper, telephone, cell phone and mail, and the mobile unit for data collection would need to be in the neighborhoods.

Discussion

Focus group participants identified the same major health issues across their communities: hypertension, diabetes, heart disease, stroke, obesity, kidney disease, and cancer. The community health concerns mirrored those reported in previous Centers for Disease Control and Prevention and National Institutes of Health Sentinel Network research.10,11 Overall, the participants had not taken part in health research but would be willing to do so. Participants expressed trust in doctors, nurses, other health care professionals, and ministers in their respective communities. Trust was a requisite for participation across focus groups “Trust is local and best secured face-to-face.” The shared barriers to research participation included the time commitment, the location of the examination unit, and the challenges related to transportation. The responses of the focus group participants, their advice, and recommendations for contacting their community members all indicated their willingness to be engaged in community-focused research to improve the health of their communities.

When conducting focus group research based on community members’ perspectives, several key limitations must be considered. Focus groups often involve small, localized samples, meaning the findings may be specific to the experiences of that particular community, limiting their generalizability to other communities. Additionally, participants are typically selected based on availability, willingness, or their role within the community rather than through random sampling, which may introduce selection bias. Group dynamics can also pose challenges, as dominant voices, power imbalances, or social desirability may pressure participants to conform to perceived consensus, potentially skewing the data.

To address these limitations, a diverse set of community members were involved throughout the research process—including the recruitment strategies, participant selections, ongoing feedback, and discussions of the findings. The community members assisted in recruiting participants who were inclusive and representative of the community. These steps helped to ensure the study was rooted in the diverse perspectives of the community, allowed the community to confirm the findings as reflective of their unique needs, and minimized outsider bias. Utilizing experienced facilitators who followed a well-structured interview guide was essential for managing group dynamics and ensuring that focus group discussions captured a broad and representative range of perspectives. This approach helped produce more comprehensive and balanced data, reflective of the community’s true experiences.

The insights gained from the Rural Community Listening Project were instrumental in shaping the planning and execution of the RURAL Study in Mississippi. Input from these rural communities played a pivotal role in identifying local strengths, understanding key factors that could encourage research participation, and addressing barriers that needed to be overcome. Ultimately, the Mississippi arm of the RURAL Study successfully recruited 1,385 participants, surpassing the research objective by 50 participants. The Mississippi experience highlights the benefits of this initial qualitative research phase.

Public Health Implications

The RURAL Study focuses not only on urban-rural comparisons but specifically on mortality and health differences within rural populations. The study seeks a fuller understanding of the health risk factors for heart, lung, blood and sleep related mortality in rural communities. The Mississippi arm of the Rural Community Listening Project intentionally sought out the voice of the rural community to inform a successful recruitment model for the larger RURAL Study to engage Appalachia and Mississippi Delta communities in research. The project demonstrated the value of this first step of involving rural communities in research by listening to their experiences, concerns, and recommendations.

This model has great implications for building relationships between researchers and communities, planning and implementing research in rural areas, and improving the health of rural communities as a result of the research. The findings of future research have the potential to motivate changes in policy and practices related to health care for those living in rural communities.

Other

No conflicts of interest were identified during this study process. Funding for the Mississippi Rural Community Listening Project was provided by an award from Dr. Vasan Ramachandran, Boston University, as a part of the proposal development process for the Risk Underlying Rural Areas Longitudinal (RURAL) Study.