Appalachian SelfAppalachian Self--Identity and Effects on Identity and Effects on Health BehaviorsHealth Behaviors

Mark DignanUniversity of Kentucky

Background: Conference PurposeBackground: Conference Purpose

• To share and disseminate health-related disparities research findings

• To increase the participation of health • To increase the participation of health professionals, community stakeholders, and others to become involved in evidence-based efforts to eliminate health disparities in Appalachia

The Appalachia Community Cancer The Appalachia Community Cancer Network (ACCN)Network (ACCN)

Supported by the National Cancer Institute Center to Reduce Cancer

Health Disparities1 U01 CA114622 (2005-2010)

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The ACCN is one of 25 NCI Community Networks The ACCN is one of 25 NCI Community Networks that focus on reducing cancer health disparities in that focus on reducing cancer health disparities in

underserved and/or minority populationsunderserved and/or minority populations

ACCN Overall GoalACCN Overall Goal

The overall goal of the ACCN is to contribute to the reduction of cancer health disparities in Appalachia health disparities in Appalachia through education, research, and training.

ACCN Leadership TeamChair: Mark Dignan

5 Regional PIs

5 Regional Project Managers

Evaluator

Community Representatives

Steering CommitteeChair: Mark Dignan

Barbara Wingrove, NCI Project Officer5 Community Advisory Committee MembersExternal CBPR Expert Samuel Lesko, Clinical Expert5 Regional PIs (Ex-Officio) Project Management Team

Chair: Mark Cromo5 Regional Project Managers

ACCN Community Advisory Committee

Chair: Elected by group

5 Regional Community Advisory Board Members Research Task Force Evaluation Task Force

Chair: David Royse

Organizational StructureOrganizational Structure

Regional Community Advisory Boards

(Determined by each region)

WVUUK PSU VPIOSU

5 Regional Community Advisory Board Members (1 from each region)

Chair: Electra PaskettCommunity RepresentativesClinical CoordinatorBiostatistician Regional PIs, Co-Is, PMs, PD

Dissemination Task ForceChair: Pamela Brown

Community RepresentativesVolunteer Regional PIs, Co-Is, PMs, PD

Chair: David Royse Community Representatives Jim Bohland Cathy Coyne

ContextContext

• History• Socioeconomic characteristics• Burden of cancer and other chronic diseases• Influence of culture• Influence of culture

LBJ Declares War on PovertyLBJ Declares War on Poverty

On April 24, 1964, Lyndon and Lady Bird Johnson vis ited Inez, Ky., and the property of Tommy Fletcher, a father of eight whose living cond itions epitomized the squalor that characterized Appalachia for decades. On Fletcher's porch, Johnson declared the War on Poverty. (AP Photo)

Cultural IdentityCultural Identity

• Cultural identity is the (feeling of) identity of a group of culture, or of an individual as far as she/he is influenced by her/his belonging to a group or culture group or culture (http://en.wikipedia.org/wiki/cultural identity)

Cultural Identity Applied to Appalachia Cultural Identity Applied to Appalachia

• Place-based orientation• Family centered decision making• Rural residence and its pros/cons• Rural residence and its pros/cons• Independence and self reliance

Cultural Identity Applied to Appalachia Cultural Identity Applied to Appalachia

Common Stereotypes

• Grounding in the present• Grounding in the present• Fatalism• Distrustful of health care workers

Health BehaviorsHealth Behaviors

• Behaviors that directly or indirectly relate to current or future health status• Prevention• Early detection• Access to treatment• Adherence• Rehabilitation• Survivorship

Some applications of Health BehaviorsSome applications of Health Behaviors

1. Prevention2. Early detection

3. Access to treatment

1. Smoking cessation2. Screening tests (Pap

smear, colorectal cancer)3. Overcoming barriers

a. Distancesa. Distancesb. Sparse servicesc. Poverty and disability

Research on Measurement of Cultural Research on Measurement of Cultural IdentityIdentity

• Epidemiologic approach• Surveys of known groups

• Ethnographic approach• Ethnographic approach• Interviews• Focus groups

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Does Culture Influence Health Behaviors?Does Culture Influence Health Behaviors?

• Little is known about measurement of cultural identity

• Most research has focused on developing measures of acculturation – not measures of measures of acculturation – not measures of how different cultures influence health behavior

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Current Research Current Research –– 3 Studies3 Studies

• Study 1: In-depth interviews with Appalachian and Non-Appalachian individuals to develop vignettes

• Study 2: Evaluation of vignettes with focus groups

• Study 3: Psychometric evaluation for instrument development

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Example VignetteExample Vignette

• A student describes herself as ‘lucky’ even though she studied very hard to get a good grade on a test

• Does this describe people like you? (Appalachian)

• How well does this describe you or your family?

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Example VignetteExample Vignette

• A parent wishes her child could attend the high school she graduated from 20 years earlier

• Does this describe people like you? (Appalachian)

• How well does this describe you or your family?

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Next StepsNext Steps

• Administration of draft instrument to Appalachian residents

• Data analysis to identify factor structure• Revision and further data collection

• Development of a valid, reliable instrument to assess cultural identity

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Thank YouThank You

Questions?Questions?

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