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Regional Health Disparities in Appalachia A community-based participatory research approach INTRODUCTION Bruce Behringer Director, ETSU Office of Rural and Community Health and Community Partnerships PANEL SPEAKERS Becky Love Principal Unicoi County TN Schools Karen Mabe Community Cancer Research Review Work Group, Johnson City TN Joan Robinette The Listening Project, Harlan County KY Discussion Moderator Kris Bowers Research Assistant with ETSU Office of Rural and Community Health Does Community Involvement in Research Make a Difference? Becky Love Principal, Unicoi County TN Schools A Study of Rural High Risk Middle School Student Behaviors School based research issues The school: How to gain entry and buy-in from stakeholders? What did school want out of participation? How was proposed study design changed? The survey: What content and terms would be most recognizable to elicit responses? The student participants: How to promote truthful responses? How to assure confidentiality of intervention? Findings Phase I Process of entry smoothed Stakeholders interest (teachers, parents, students, administration) Two study arms – risky behaviors and prediabetes Community history as context clue Findings Phase II Four school systems involved 2,400 + middle school students surveyed Data on alcohol and other substance use, tobacco and physical inactivity Rural isolation seen as a protective factor but some students left out Findings Phase III Brief motivational intervention at school sites with sample of students Evaluate with Stages of Change theory Dual study arms assist confidentiality Schools want to test something that can help! Karen Mabe Johnson City TN Community Cancer Research Review Work Group The first maps with evidence of the regional problem in a national focus White males, age adjusted mortality, 1988-1992 White females age-adjusted mortality, 1988-92 From: National Center for Health Statistics Finding: All Cancer Mortality Trend for Tennessee and region worse than US …but the trend is now getting worse Our region once had lower mortality rates All Cancer Mortality Trends % of National Levels All Cancer Mortality Trends Age Adjusted Rates 115% 230 Mortality Rates /100,000 220 210 200 190 US Tennessee Virginia Our Region 180 170 160 Rate as % of US Rate 110% 105% 100% 95% 90% 85% US Our Region 80% 75% 150 1969- 1972- 1975- 1978- 1981- 1984- 1987- 1990- 1993- 1996- 19991971 1974 1977 1980 1983 1986 1989 1992 1995 1998 2001 1969- 1972- 1975- 1978- 1981- 1984- 1987- 1990- 1993- 1996- 19991971 1974 1977 1980 1983 1986 1989 1992 1995 1998 2001 Years Years Finding: excess premature cancer mortality for whites (ages 35-64) Circled areas represent the only cluster of statistical high outliers in the nation for white mortality. Finding: A disproportionately high percentage of Appalachian counties appear among the nation’s worst 10% 35 30 25 Black women White women Black men White men Excess burden of worst counties in nation 20 15 10 Expected level of worst counties in nation 5 0 All Cancer Mortality, ages 65+ All Cancer Mortality, ages 35-64 Source: Geary, ETSU from ARC funded study Other research findings from literature National analysis demonstrated factors most associated with higher death rates * African American Less than high school education age adjusted death rates (Appalachia higher percentage than US) Poor whites in Appalachia and Mississippi Valley have a life expectancy equal to Mexico and Panama ** Young and middle age mortality is higher than worst Organization of Economic Cooperation and Development country ** * Kindig, Seplaki and Libby, Bulletin of the World Health Organization (80)1, 2002 ** Murray, Kulkarni and Ezzati Amer Journal of Preventive Med 2005 Some shared community beliefs about cancer appear to be prevalent in the region, and these are based upon personal experiences, fatalism, and issues of cost, quality and access to care. Of the sources of information about cancer named by community groups, health professionals were the least frequently mentioned. Friends and family were the most frequently mentioned, followed by the media. There are significant issues about health communication between providers and patients and they are recognized by both patients and providers as a barrier to understanding and use of cancer care services. There are other significant documentable mortality disparities in the Appalachian region, and many of the same factors identified by the Program affect non-cancer disparities. Joan Robinette Harlan KY Harlan County Kentucky The Listening Project Listening Why we chose to do a listening project. The drug problem affected everyone within the community. We wanted to listen to what people had to say. We wanted to hear their solutions as well as the problems in our community. We wanted to find out at what level of awareness our community was at in regards to the drug problem. The Listening Project was a component of the Harlan County PACT Project. How it was done Herb Walters and RSVP trained local volunteers to go out and listen to people. Community folks designed the survey. Between 2005-2006, 743+ were interviewed over a period of 9 months. Main Topics What are the best things about living in Harlan County? What’s the best job you ever had? How has your life been affected by the drug problem here? Describe the drug problem. Why do we have a drug problem? What can we do to prevent drug abuse? What needs to be done to help drug addicts recover? What would help the families of the abusers? What could be done to make this a better place to live? What are the most important things to teach our children? The Responses “People sell pills to pay their bills” Lack of jobs Corruption in the courthouse before the 2006 election Hopelessness Depression Isolation from within Mistrust Oppression Poverty Poor education Exploitation People have no place to get help for addiction Suggested Solutions Addiction is a disease not a moral flaw! Respecting each other Being treated fairly Better education More recreational activities for youth and adults Mentoring programs Support groups with qualified personnel Treatment facilities Everyone working together Taking the holistic approach People need to be more accepting of each other Jobs Higher Ground: Look Up and Live What was the research question? Why do you think there are health disparities in Appalachia? What are your recommendations about community-based participatory research after your assessment/research process?
