From high tech to high touch: integrating community voices in mobile mammography outreach.
Abstract: Providing mobile screening mammography services across the state of West Virginia (WV) presents unique challenges. The ability of new machines to screen for breast cancer is modern medicine at its best. The use of the mobile unit, "Bonnie's Bus", holds promise for getting this high tech equipment to women in rural areas of West Virginia where it is most needed. Cancer detected in early stages is more treatable and women have a better chance of becoming survivors. The key to the program's success resides with the women who come for the screening, the extension network of community members who help set up and assist women to access the screening system, and community health care providers who care for the women if cancer is found. Linking "community voices" with the programs funded under the WV Komen grant screening programs provides a winning solution for West Virginia and the women served by Bonnie's Bus. Information obtained from five focus groups of 58 community leaders and women residing in rural WV was used to develop the mobile program. Building upon established relationships with the West Virginia Breast and Cervical Cancer Screening Program (WV BCCSP) coordinators and providers, outreach and information gleaned from WV communities, is being used to develop community partnerships based on mutual trust and respect to advance the common goal of decreasing breast cancer related illness and death in West Virginia women.
Subject: Mammography (Usage)
Breast cancer (Diagnosis)
Breast cancer (Care and treatment)
Breast cancer (Prevention)
Cancer (Diagnosis)
Cancer (Methods)
Authors: Kennedy, Stephenie
Stephens, Sheila
Tephabock, Kevin
Brown, Pamela
Davis, Patty
Keresztury, James
Narsavage, Georgia
Pub Date: 10/01/2009
Publication: Name: West Virginia Medical Journal Publisher: West Virginia State Medical Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 West Virginia State Medical Association ISSN: 0043-3284
Issue: Date: Oct, 2009 Source Volume: 105 Source Issue: S1
Geographic: Geographic Scope: West Virginia Geographic Code: 1U5WV West Virginia
Accession Number: 218949146
Full Text: Objectives

1) The reader will have knowledge of the "community voices" project that was key to the "Bonnie's Bus" mobile mammography program's ability to address the needs of the community.

2) The reader will be able to discuss key points for conducting community engagement using community based participatory research methods.

Background

The "Community Voices" project in 2008-2009 became a Komen funded component of the Bonnie's Bus program to provide outreach, community development, communication links, technical assistance, research support, and evaluation mechanisms in association with other WV cancer screening and treatment activities.

Trust can be an issue for (academic) health care providers when attempting to change long held attitudes and behaviors of women in remote communities where mobile screening mammography services have potential to improve care. Lack of trust for outsiders has been identified as a belief held by rural Appalachian families. For WV mobile mammography screening to succeed, involved health care providers need to earn trust and be available--to be 'insiders'. A 1997 study of breast self-examination in West Virginia found that 35% of the women stated they did not want to know of a cancer diagnosis. These women also showed less motivation to participate in health promotion than other study participants and did not know of any benefits to performing routine Breast Self Examination (BSE) (2). These same beliefs have been reported regarding attitudes of women towards mammography. Davis and colleagues suggest that to impact disparities in cancer care, treatment and communication must be "accessible, acceptable, and culturally considerate." (3) Appalachian communities have an unique culture and are justifiably proud of their heritage and accomplishments; loyalty to family and community is a strong asset in their continued existence. There is a reluctance to respond to outsiders; past participants of focus groups in West Virginia stated they received their health care information from family members who they trust. They often do not discuss health related problems with those outside the family.

Before sending Bonnie's Bus into the first community, the mobile mammography team at West Virginia University's Mary Babb Randolph Cancer Center (MBRCC) worked with communities in Berkeley, Brooke, Logan, McDowell, and Monongalia counties that would be locations for the mobile screening in order to identify and build upon their mutual strengths and resources. Screening for breast cancer in Appalachia has unique challenges; community collaboration using our Community Voices approach provides solutions.

Description

The Community Voices approach to engaging communities was designed to help community members themselves identify needs, set methods, and analyze what happens--a "community-based participatory research" (CBPR) method. Fundamental characteristics of a CBPR project are: community members are directly involved (participatory); members of the community and the researchers work together (cooperative); community and research members learn from each other (co-learning process); changes are at the community level (systems development) with local communities able to continue the changes (capacity building); and community members can increase control over their lives (empowerment). CBPR achieves a balance between research, i.e., developing new knowledge, and actual program development/ implementation, i.e., making something happen that has the potential to help the community (6).

Early steps focused on understanding the community, its history and culture by talking to community leaders and conducting focus groups using CBPR methods. The authors thought that community leaders' information would be valued to the extent it could be applied when "Bonnie's Bus" rolled into their communities, so a proven approach to community engagement was desired. Community leaders have the ability to make decisions as to where screening might best be held, how to contact residents, what to include in the information that is sent to residents, and so on. One key in building the relationship is identifying where the community needs and desires overlap with the services offered. When leaders feel that they are respected and acknowledged, i.e., true partners, activities can move to the next step--involving and organizing community residents in the actual screening visit.

In summary, we found the essential elements of CBPR require the approach to:

* Use key issues that the community leaders have helped identify--those that overlap with services that can be provided--to ASK community members to become involved in finding solutions.

* Start with identifying the community assets--what individual skills and talents community members already possess.

* Find out if there are already community projects underway such as health fairs or extension service educational sessions that can be built on as valuable assets

* Make a defined role for participants so they know what they are being asked to do and thank them for being willing to help. Ask people to help you build a network of community resource people who they know can help--nurses, doctors, teachers, community workers, and so on.

* Work with these identified resource people to expand the network of community members to work together to solve their problems--empower them. More detailed information on

CBPR resources is available online at the Points of Light website (10), http://www.pointsoflight. org/downloads/pdf/A_Matter_ of_Survival_Worksheets.pdf

Methodology

The purpose of the Community Voices project was to identify women's attitudes and beliefs about mobile mammography and to develop an effective community recruitment procedure. We first developed a focus group/key informant guide for participants to share their knowledge, feelings, and beliefs about women's health issues, breast health, mobile mammography, ideas about things that are unique to their communities, and a brief questionnaire to collect demographic information, plus where and how they receive their health information and health care services. Fifty-eight participants from five groups, including formal (mayor, council members) and informal (pastors, women's clubs) community leaders, completed an informed consent and 54 of the 58 completed the questionnaire. Sessions were audio recorded, transcribed verbatim, and analyzed (i.e., coded) for community recommendations.

Findings

Almost one-third (31%) of participants were aged 40 to 49 years, 53% were aged 50-64 years, and 16% were older than 65. Household income ranged from less than $10,000 to more than $60,000 with the mode being $20,000-$30,000. A majority (52%) of participants had a high school diploma or its equivalent, but the groups ranged from less than a 9th grade education to those with advanced degrees. Three-fourths of the women had health insurance and 79% had a primary health care provider, but only 60% had a mammogram in the last year.

Examples of recommendations from focus groups in West Virginia communities are listed in Table 1. Protocol suggestions were to ensure advanced notice (6-8 weeks), to educate people about what screening includes, to provide a comfortable waiting area, good parking, short wait times, to provide refreshments, and to schedule around community celebrations with balloons, banners, and flags around the Bus. In addition, it was suggested the program "be organized", important information and advertisements include an 800 number and the program inform a community if walk-ins are welcome in addition to scheduled appointments. Some of the messages that the women thought useful in advertising the screenings included "This is for you--do it for yourself-you're worth it." "If you don't take care of yourself, you can't be there to take care of others." Many of the participants came to the focus group with a friend so the suggestion to "take a friend with you" was no surprise. These protocol suggestions were incorporated in marketing the program, and to date over 100 appointments have been scheduled for the first six months of the scheduled visits.

Finally in the focus groups we determined that women would have a number of questions and that a packet or checklist should be sent to all women making appointments for care. The participants told us that regardless of the "date and place" messages, we needed to address time and money issues. Incorporating their suggestions, information packets were prepared to include details about the appointment, screening guidelines, documentation needed for the appointment (including payment options), how long the visit would likely last, and how the results would be provided to their primary care provider and the woman screened.

Discussion

A frequent challenge of previous community projects has been unrealistic expectations. This was evident in questions that surfaced in the focus groups, e.g., could the first stop of Bonnie's Bus in a community really screen 50 women in one afternoon--could screening five women be considered a good first step to getting the system in place? Being clear as to what can be offered, answering questions in advance as to cost and availability, and having a prepared plan for how to move from screening to treatment if cancer is identified are essential components of building and keeping the trust of a community in this project. The mobile unit team remains committed to working with the community partners for a sustainable program. The community partners are essential to maintaining the desire and enthusiasm for helping women and their health care providers see the value in using the services offered. Measuring results such as decreasing deaths from breast cancer will take years, but measuring the difference in the value of community involvement in developing solutions, rather than telling communities what they "should" do, can be measured quickly in terms of how residents value and use Bonnie's Bus. Our focus will start with increasing the number of women screened and improving access to earlier treatment. Those committed to Bonnie's Bus Mobile Mammography Project understand the issues facing many West Virginia residents including lack of insurance, poverty, rural access impediments, and a limited provider workforce. If the Community Voices approach assists women to improve their comfort, increase affirmative decisions to be screened, and enhance clinician's knowledge of a system of resources available to promote continuity of care, mobile mammography screening has the potential to improve outcomes for WV women. By building on the strengths of both Cancer Center leaders and the community, we are confident that integrated "community voices" can decrease the health care burden and improve the quality of life in WV.

The "Community Voices" project has been supported in part by Susan G. Komen for the Cure, Dallas, TX and Claude Worthington Benedum Foundation grants.

CME Post-Test

46. T or F The Community Voices approach to engaging communities was designed to help community members themselves identify needs, set methods, and analyze what happens

47. To impact disparities in cancer care, research has found that treatment and communication must be "accessible, acceptable, and_.

a. Applicable to all cultures

b. Culturally considerate

c. Primarily done by physicians

d. Primarily done by nurses

48. Which of the following is NOT a component of Community Based Participatory Research Methodology (CBPR)?

a. Empowerment

b. Capacity building

c. Randomization

d. Systems development

49. T or F In CBPR, one key in building the relationship is identifying where the researchers needs and desires overlap with the services offered in the community.

References

(1.) Patton, C.M. Rural Appalachian women: A vulnerable population in de Chesnay, M(eds) Caring for the Vulnerable, 2005; 277-282, Jones & Bartlett: Sudbury, MA

(2.) Sortet, J P. & Banks, S.R. Health beliefs of rural Appalachian women and the practice of breast self-examination. Cancer Nursing, 1997; 20(4), 231-235.

(3.) Davis, T.C., Arnold, C., Berkel, H.J., Nandy, I., Jackson, R.H. & Gladd, J. Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer, 1996; 78 (9) 1912-1920.

(4.) Lyttle, N.L. & Stradelman, K. Assessing awareness and knowledge of breast and cervical cancer among Appalachian Women. Prev Chronic Dis [series online] 2006 Oct. Available at www.cdc.gov/pcd/ issues/2006/oct/06_0031.htm

(5.) Coyne, C.A., Demian-Popescu, C., & Friend, D. Social and cultural factors influencing health in southern West Virginia: A qualitative study. Prev Chronic Dis [series online] 2006 Oct. Available at www.cdc.gov/pcd/issues/2006/oct/06_ 0030.htm

(6.) Israel, B.A., Eng, E, Schulz, A.J., and Parker, E. A. Methods in communitybased participatory research for health. 2005; San Francisco, California: JosseyBass.

Stephenie Kennedy, MA [1,2] Sheila Stephens, DNP, RN [2,3,4] Kevin Tephabock, BS [6] Pamela Brown, MPA [1] Patty Davis [5] James Keresztury, MSW [1,7] Georgia Narsavage, PhD, RN, FAAN [2,8],

[1] Mary Babb Randolph Cancer Center, West Virginia University, Morgantown, WV

[2] Supported in part by Susan G. Komen for the Cure, Dallas, TX

[3] Edwards Comprehensive Cancer Center, Cabell Huntington Hospital, Huntington, WV

[4] West Virginia University School of Nursing, Charleston Division, Charleston, WV

[5] Hampshire County Cancer Coalition, Romney, WV

[6] American Cancer Society, South Atlantic Division, Charleston, WV

[7] Mountains of Hope, West Virginia Cancer Coalition, Morgantown, WV

[8] West Virginia University School of Nursing, Health Sciences Center, Morgantown, WV
Table 1. Recommendations from Focus Groups in West Virginia
Communities

Location      # Partners   Community
              at Table     recommendations

Welch         16           Use posters, flyers, church
                           announcements, and word
                           of mouth to advertise

Logan         11           Use volunteer fire
                           departments and other
                           community- based
                           organizations

Blacksville   8            Incorporate community
                           cancer coalitions; publicize
                           6-8 weeks in advance

Martinsburg   10           Set up in places like Wal-
                           Mart and Dollar Stores;
                           make sure there is adequate
                           parking and comfortable
                           waiting space

Wellsburg     13           Include the local health
                           departments and county
                           commissioners in the
                           planning process
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