Download Community Focus Groups (PDF File)

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 This report has not been peer reviewed for the purposes of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:
ƒ Increased awareness of own health needs, screening, risks, etc.
ƒ Increased health seeking behavior
ƒ Learned much about cancer.
¾ Groups reported:
ƒ Better understanding in general about cancer
ƒ Very valuable experience
ƒ Very important information
ƒ Changes in beliefs, attitudes, perceptions about cancer, cancer survival,
cancer screening, risks, risk reduction, behavior as a health consumer
¾ Groups reported Learning:
ƒ “Men can develop breast cancer”
ƒ Someone “cares”
ƒ “How to do Self Breast Exam”
ƒ It’s OK to ask health provider questions
ƒ It’s OK to get second opinion
ƒ To be more assertive with family physician
ƒ Importance of screening
ƒ Early diagnosis may “cure” cancer
¾ Groups requested:
ƒ Continuing involvement in cancer study
ƒ Additional cancer education materials
ƒ Wider community involvement in focus group meetings
ƒ Longer focus group meetings
ƒ Further participation in health meetings
REPORT OF THE RURAL APPALACHIAN CANCER DEMONSTRATION PROJECT
3
¾ Groups received:
ƒ Healthy eating cook book
ƒ Referrals for assistance in community for cancer control
ƒ Cancer education materials
ƒ Assistance with developing women’s osteoporosis program
ƒ Opportunity to ask questions/ discuss issues with qualified physicians
¾ Groups plan to implement:
ƒ Cancer “survivor” day in community
ƒ Youth antismoking campaign
ƒ Dissemination of knowledge gained to wider community
ƒ Increased personal cancer screening practices
ƒ Churchwide Prostate screening
ƒ Transportation Program for health care services
ƒ Sharing of new found knowledge with others: family, friends, members of
community
ƒ 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