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Community Focus Groups: Report to Participating Communities Deborah Geary, MS and Bruce Behringer, MPH East Tennessee State University Office of Rural and Community Health RURAL APPALACHIAN CANCER DEMONSTRATION PROGRAM ABSTRACT The rural Appalachian Cancer Demonstration Program is designed to provide additional information and understanding about the regional sense that cancer is more common throughout the region than in other parts of the country. One key aspect to this study is to identify how communities see cancer and what and how they know about cancers. To gather this information, East Tennessee State University, the LENOWISCO Health District of the Virginia Department of Health and the Markey Cancer Center at the University of Kentucky sought assistance and formed focus groups in nine different rural Appalachian communities. This material is a copy of a program report to the Centers for Disease Control and Prevention intended for the purposes of dissemination of results. This report has not been peer reviewed for the purposes of publication. This Program was supported in whole by grant # H57-CCH420134. METHODS Three sets of focus groups were set up in each of the three states. Existing social groups were tapped that indicated an interest in sharing what they knew and learning more about cancer. Groups with different characteristics were purposely selected: elderly groups, Hispanic and African American groups, church groups, civic organizations and social clubs. Groups were also purposefully selected to include people of different ages and genders. Unlike most studies, we did not focus on what individual members knew or believed. Instead, we focused on the real diversity that exists in the Appalachian regional and how different groups have different “community knowledge” about cancer. The groups included: Kentucky Boyd County Senior Center Tennessee Virginia Campbell County Cocke County Sullivan County Lee County Smyth County Wise County R.E.A.C.H.S. Advisory Board Parrotsville Ruritan Club Shiloh Baptist Church Men’s Group Pennington Gap Womens Club Hispanic Migrant Program Advisory Group State-specific facilitators and recorders used the “Continuum of Cancer Care” developed by Dr. Gil Friedell (University of Kentucky) to question community groups about the full range of cancer-related services. Each focus group concentrated on one of four different types of cancer (breast, colorectal, lung and prostate) that best matched the characteristics of the group. A National Framework for Cancer Surveillance Primary Prevention HEALTHY POPULATIONS Behavioral Risk Factors Screening Examinations Environmental Exposures Social and Environmental Policies Secondary Prevention NEW DIAGNOSIS OF CANCER Cancer Incidence Tertiary Prevention TREATMENT OF CANCER Availability of Care Access to Care Quality of Life Comorbidity State-of-the-Art Care Compliance LIVING WITH CANCER Quality of Life Comorbidity Recurrence Survival Cancer Prevalence DYING OF CANCER Availability of Care Access to Care Quality of Life Comorbidity Hospice/ End-of-Life Care Cancer Mortality Wingo, Phyllis A., Howe, Holly L., et al. (2005) A national framework for cancer surveillance in the United States. Cancer Causes and Control 16: 151-170. REPORT OF THE RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT 2 This type of approach to studying health problems is known as Community Participatory Action Research. It relies upon communities to help define research issues in their terms and to raise further questions that need to be explored to understand an issue. Our preliminary findings will help the Rural Appalachian Cancer Demonstration Program to improve communications about cancer for communities. We will also work with health experts at the Centers for Disease Control and Prevention in Atlanta to identify “next steps” for how communities can be involved in demonstrating ways to prevent cancer and encourage community members to seek health care in a more timely and effective way to reduce deaths to cancer throughout the Appalachian region. Rural Appalachian Cancer Project Third Meeting with Physician Summaries What were some outcomes of the Focus Group Process? As a result of Objective 3 efforts: ¾ Facilitators & recorders reported: Increased awareness of own health needs, screening, risks, etc. Increased health seeking behavior Learned much about cancer. ¾ Groups reported: Better understanding in general about cancer Very valuable experience Very important information Changes in beliefs, attitudes, perceptions about cancer, cancer survival, cancer screening, risks, risk reduction, behavior as a health consumer ¾ Groups reported Learning: “Men can develop breast cancer” Someone “cares” “How to do Self Breast Exam” It’s OK to ask health provider questions It’s OK to get second opinion To be more assertive with family physician Importance of screening Early diagnosis may “cure” cancer ¾ Groups requested: Continuing involvement in cancer study Additional cancer education materials Wider community involvement in focus group meetings Longer focus group meetings Further participation in health meetings REPORT OF THE RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT 3 ¾ Groups received: Healthy eating cook book Referrals for assistance in community for cancer control Cancer education materials Assistance with developing women’s osteoporosis program Opportunity to ask questions/ discuss issues with qualified physicians ¾ Groups plan to implement: Cancer “survivor” day in community Youth antismoking campaign Dissemination of knowledge gained to wider community Increased personal cancer screening practices Churchwide Prostate screening Transportation Program for health care services Sharing of new found knowledge with others: family, friends, members of community Smoking cessation efforts in the community FINDINGS Overall, the groups’ knowledge of cancer was less than expected. The groups lacked knowledge in the areas of risks, risk reduction, screening, and symptoms of cancer as well as across the continuum. Additionally, the groups’ knowledge was often incorrect. Confused responses were also frequent especially when trying to identify a risk factor or symptom for one type of cancer and confusing it with another type of cancer. All of the groups reported feelings of fear, depression, and denial when thinking about cancer. Some groups reported that denial was strong enough to prevent proper cancer screening. Most all of the groups expressed a fatalistic perception of cancer; the word cancer was frequently associated with death. Also, when discussing cancer treatment the groups expressed a concern of its safety and ability to make a difference in cancer outcome. When explaining their view and beliefs about cancer, all the groups used personal experiences and stories to explain it best. In fact, the main source of health information for most groups was “other” people such as friends, family, neighbors, and other members of their community. The other main sources of information were reported as TV, magazines, internet, and media. Groups’ also reported on the health care available in their community. Although most groups reported having access to health care, most responses framed these services in negative terms and most groups felt these services were difficult to access. Insurance and cost of health care was mentioned by all groups as a major issue in obtaining cancer services and health services in general. In summary, many barriers to cancer care services and health care services in general, were reported by the groups. The most frequently mentioned were: insurance (lack of or REPORT OF THE RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT 4 insufficient amount of), money, transportation, poor health care quality, difficulty accessing health services, and lack of health services. Other issues that emerged from group discussions include: diet/ food as possible risks of cancer as well as risk reducer of cancer, prayer in response to all categories of the continua, environments as being suspect in the cause of cancer, and clinical trials as experimental and of not much benefit to people with cancer. All of the groups’ responses were analyzed using several different perspectives by all members of the research team including the facilitators and reporters. The above findings were grouped into “themes” or categories of information received from the groups. These themes are: 1. Knowledge of Cancer: accurate, inaccurate, confused, lacking 2. Negative perceptions of health care quality and access 3. Fatalistic perceptions of cancer and cancer care 4. Diet/ food as cancer risks and cancer risk reducers 5. Main source of cancer information: “others” 6. Multiple barriers to cancer control services 7. Personal experiences of cancer ending in death 8. Prayer in response to cancer diagnosis, cancer treatment, survivorship, end of life 9. Clinical trials believed to be experimental, risky and without benefit 10. Work, home, and community environments as cancer risks 11. Depression and denial as psychological aspects of cancer REPORT OF THE RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT 5