Background: To maximize the impact of breast cancer patient navigation at The George Washington University (GW) Cancer Institute, this project mapped the patient experience across the cancer continuum to identify how [ Read More ]
February 2015, VOL 6, NO 1
Development of a Cancer Resource Center in a Rural Texas Border Community
Heather Becker, PhD
|Objectives: While many hospital-based survivorship programs have been developed in large cancer centers, it is important to understand how cancer support services can be delivered in small rural communities. The purpose of this article is to describe how contextual factors have influenced the development and evaluation of a cancer navigation and support program in a small Texas border community.Study Design and Methods: This descriptive explanation of the development of the HOPE Cancer Resource Room is based on observation and records review.
Results and Conclusions: The HOPE Cancer Resource Room illustrates how a small border community can come together to build support services for patients with cancer and their families. Unlike many survivorship programs that operate in large cancer centers, the HOPE Cancer Resource Room focuses its efforts on connecting its survivors who are mainly of Hispanic origin and their families with available resources in the regional community, rather than linking them to hospital-based services. Its approach to the evaluation and delivery of services is informed by the community context in which it operates.
Cancer survivors’ needs can vary depending upon the context in which they live. To maximize their quality of life, survivors in small communities and rural settings need services that fit their unique situations. The authors of A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies1 recommend the development of effective patient navigation systems and tools for diverse groups. The ultimate goal is to make quality cancer care available more equitably across the United States.
Brownson and colleagues2 have pointed out that contextual factors (eg, education level, social capital, staff expertise, and sociocultural and political/economic factors) should inform evidence-based practice. Serrata and colleagues3 have also suggested a more “bottom-up” approach to understanding how local programs evolve and meet the needs of their communities. In this model, the use of documented evidence is tempered by environmental and organizational contexts as well as community and local professional expertise. The Knowledge Exchange–Decision Support Model also emphasizes the importance of local context when designing patient navigation programs.4 In particular, there is currently a need for more information about cancer care programs operating in rural settings and those serving a population that is largely of Hispanic origin.
The purpose of this article, therefore, is to describe how contextual factors have influenced the development and evaluation of a cancer patient support program in the Texas border community of Del Rio (Val Verde County) and adjacent Kinney County. Consistent with the commonly accepted definition of survivorship,1 we define cancer survivors as individuals and their families from the time of diagnosis through active treatment and beyond.
Community Context: Cancer Among Texans of Hispanic Origin in Val Verde and Kinney Counties
Although the rates of diagnosis and survival for most major cancers in Texans of Hispanic origin compare favorably with those of white Texans of non-Hispanic origin (notable exceptions being for cancers of the stomach, liver, and cervix), the cancer experience can nevertheless take a tremendous toll, particularly for those with low incomes.5 Texans of Hispanic origin are less likely to have health insurance or a personal provider, and are more likely to postpone seeking healthcare or routine medical checkups or cancer screenings.5
As of 2013 estimates, Val Verde County, located on the border with Mexico, has a population of 48,623.6 Of this population, 80% are of Hispanic origin, 33% of adults have less than a high school education, and approximately 22% live below the poverty line. The largest employers are the local schools and Laughlin Air Force Base.7 As of 2013, neighboring Kinney County has 3586 residents; of these, 57% are of Hispanic origin, 31% of adults have less than a high school education, and 26% live below the poverty line.8 Both of these counties are designated by the Texas Department of State Health Services as rural border counties.9
According to its 2013 Community Health Needs Assessment, the Val Verde Regional Medical Center (VVRMC) is the only hospital in Val Verde County.7 Located in the town of Del Rio, it is a 93-bed Joint Commission–accredited institution operated by the local hospital district. The direct-care physician ratio in 2010 for Val Verde County was 75.9 patients per physician; because of this physician shortage, many patients use the hospital’s emergency facilities for primary care concerns. According to the VVRMC assessment, only 20% of the patients served have HMO/PPO coverage.7 The VVRMC would like to encourage more patients with cancer to receive services in the local community, rather than seeking care in San Antonio, approximately 180 miles away.
Community Oncology Resources
Del Rio has 1 oncologist and a registered nurse who has received extensive oncology training. Together, they provide some of the services commonly found in patient navigation systems, but they do not treat all patients with cancer in the area. The VVRMC has social workers and offers hospice care, respiratory therapy, physical therapy, and occupational therapy. Radiation services are available in Uvalde, approximately 70 miles away. There are no oncology services in neighboring Kinney County.
Local general surgeons perform mastectomies and basic tumor removal, but more complex surgery is referred to the cancer center in San Antonio. Although patients who travel to that urban cancer center receive navigation services there, the navigators do not necessarily connect those patients with services in their local communities. Moreover, patients face the added expense of travel. Survivors who work and their family members have the added burden of taking time off from work to travel to receive cancer care.
In 2005, the Texas Comprehensive Cancer Control Program (TCCCP) coordinator worked with local stakeholders to create the Val Verde–Kinney Cancer Task Force (Kinney County was added to the Task Force in 2007). Its stated mission is to “reduce the burden of cancer on the residents of Val Verde and Kinney counties…[by] creat[ing] and expand[ing] cooperative efforts that maximize available cancer resources.”10 Its diverse membership includes nurses, cancer survivors, a librarian, an agriculture extension agent, a chaplain, and the regional representative of the American Cancer Society (ACS), and together they have undertaken multiple cancer control community projects in Val Verde and Kinney counties.
Community Needs Assessment
In spring 2012, the Task Force gathered surveys from 650 residents to determine their ratings of importance for 8 cancer control strategies that had been suggested in previous stakeholder meetings. The surveys were administered in both English and Spanish and were distributed at various community locations. The top 4 strategies identified as important were (1) financial assistance with cancer expenses, (2) affordable and/or free cancer screenings, (3) more education on prevention and screenings, and (4) a central, staffed location for cancer information and referral services. The survey highlighted the barriers faced by many local residents who had been diagnosed with cancer, as well as their need for help in accessing necessary services.
Once the data were compiled, the Task Force convened a community stakeholder meeting to discuss the results and their implications for community activities. The meeting also provided an opportunity to identify partners and resources that could be leveraged during the implementation of activities that were determined to be priorities from the community survey and the community stakeholder meeting.
Creation of the HOPE Cancer Resource Room
Although the Task Force has focused largely on educating the community about cancer prevention and early detection, various members also argued for addressing the needs of patients with cancer and their families. The regional representative from the ACS advocated for a specific location where cancer patients and families could receive information as well as services such as prosthesis/bra fittings. The representative offered to provide ACS materials and related resources. Other Task Force members recognized that such a resource room could become the vehicle for addressing the need for survivorship assistance identified in the recently completed community survey. The Val Verde Hospital District Board that oversees the VVRMC agreed to provide space, and others in the community generously donated remodeling services and materials.
Initially, volunteers staffed the resource room. However, the coordinator of the TCCCP, which had helped create and provide technical support to the Task Force, informed the members about funds they could apply for that would enable them to hire a paid cancer navigator. In addition to direct funding, the TCCCP coordinator offered technical assistance and networking connections, such as the statewide Cancer Alliance of Texas, as well as assistance from the TCCCP evaluation team.
HOPE Cancer Resource Room: Mission and Activities
The HOPE Cancer Resource Room (CRR), a joint project of the VVRMC, the ACS, and the Val Verde–Kinney Cancer Task Force, opened in May 2012 with volunteer support. Its mission is to provide “free services to lessen [survivors’] burden as they journey through the cancer maze of emotion, diagnosis, treatments and finances.”11Another major goal of the CRR is to identify barriers to cancer care.
With funding from the Centers for Disease Control and Prevention through the TCCCP, a parttime CRR navigator was hired a few months later, and navigation services became available in January 2013. The CRR navigator’s activities reflect many of the navigator functions outlined by Willis and colleagues.12 These functions include ongoing identification of, coordination with, and referral to community resources; identifying resources to help survivors problem-solve and participate in informed decision- making; educating survivors and families about health promotion; and identifying and addressing barriers to care. Unlike survivorship programs that operate in major cancer centers, the CRR focuses more effort on connecting cancer survivors and their families with resources available in the wider community rather than linking them to hospitalbased services. Whereas the number of patients served in the CRR’s first year was small, patients’ needs are often complex, and the navigator estimates that it has taken 1 to 5 hours to locate needed resources and follow up with each patient. Not only does the navigator provide services within the CRR, but she also educates the community about the needs of cancer survivors and their families.
Four to 6 volunteers assist the navigator in assessing the needs of patients with cancer and their families and helping them locate community resources. These resources span the cancer continuum from prevention (such as information about smoking cessation programs) through diagnosis, treatment, and survivorship. Many online and print resources are available in Spanish and English. The volunteers, some of whom are bilingual, also assist the navigator with data collection and community outreach projects. In addition to the physical space for the CRR, the VVRMC contributes supervision for the navigator, background checks for volunteers, and assistance from bilingual staff for patients and families who are Spanish-speaking.
As previously mentioned, the CRR navigator largely focuses on assisting patients with obtaining the services they need outside of the medical center system. Financial aid has been one of the most requested areas of assistance, so the navigator has compiled information about local resources for financial assistance that she can share with patients and their families. In addition, the navigator has created a flowchart to guide her volunteers in responding to financial aid requests.
Those who go different routes in their cancer journey need different kinds of navigation assistance. Some residents who do not have a regular provider in Del Rio believe that if they travel to the emergency department in Bexar County (which must provide care regardless of ability to pay), they will be referred to free or low-cost oncology services at the comprehensive cancer center in the city of San Antonio (approximately 180 miles away). However, Bexar County is moving toward providing these financial aid services only to county residents. Consequently, the CRR navigator works with residents to obtain oncology, educational, and financial services within their local community, or arranges for appropriate referrals to the comprehensive cancer center in San Antonio.
A unique aspect of this navigation service in an international border community involves linking Texans who have received initial medical services in Mexico (often for financial reasons) to services on the US side of the border. For example, individuals who have had their initial laboratory tests performed in Mexico often find that many US hospitals will not accept the results from these tests. These individuals, many of whom are low income, must then repeat their laboratory work in the United States. In such cases, the navigator can help these individuals find ways to pay for the necessary repeat laboratory work as well as get a referral to a local primary care provider so they can be directed to receive cancer care in the United States. She also educates families about the resources available within the United States so that they will not feel they have to go to Mexico for medical care.
A key component of the navigator’s role has been to develop collaborative networks in the community that will address the needs of cancer survivors. For the CRR, the term community has a broad geographic definition and includes adjacent counties, such as Uvalde, where radiation services are provided.
Another major component of the navigator’s role is to make presentations about cancer-related local demographics, cancer awareness and prevention, the needs of cancer survivors, and the services and resources available in the CRR. These presentations are given within the hospital as well as to various community organizations. The navigator now receives calls requesting community presentations, whereas in the initial months of operation she had to request the opportunity to do so. When the navigator is contacted by individuals in the community who want to help cancer patients and their families, she works with these individuals to maximize such efforts, often in conjunction with the Task Force.
The CRR’s services are publicized in many ways. The navigator distributes materials about the CRR at community events such as the ACS Relay for Life and various health fairs, and also promotes the CRR on various local radio programs. When volunteers assemble kits for patients who have had mastectomies, they also include information about the CRR. In addition, the CRR is featured on the hospital’s website, and information has been published in various newspaper articles.
Most of those visiting the CRR are patients who are newly diagnosed or still in active treatment, along with their family members. Many Spanish-speaking survivors bring English-speaking family members to help with translation, if needed. The CRR has some bilingual volunteers; when one of these volunteers is not available, the navigator can call on one of the many Spanish-speaking staff members in the hospital to help translate.
Because many residents in the community have limited education and may not be fully literate in English or Spanish, written educational materials as well as data collection forms have to be kept simple and easy to read. For example, the navigator reported that forms provided by the ACS can be challenging; she has observed that family members and other interpreters have to reword and explain many of the items. To reduce the text burden for those accessing the CRR’s services, the navigator looks for online video resources or written materials that use lots of graphics, and also asks volunteers to offer to read forms to CRR visitors when necessary.
The navigator has observed that many survivors and families seem reluctant to ask their provider questions about their diagnosis and treatment, preferring to simply accept the information given by the provider. Serrata and colleagues3 found that those of Hispanic origin are more likely to discuss health issues among family and friends than with healthcare providers. To address this, the navigator and the volunteers spend time coaching survivors about questions they might ask their providers and the role they might take in making decisions about their cancer care.
During the first full year of its operation, the CRR had only 52 visitors; with time, this number has increased. Regardless, this initial number must be considered in the context of the number of patients diagnosed with cancer in Val Verde and Kinney counties. Between 2007 and 2011 (the latest year for which data are available), 951 cases of cancer were reported to the Texas Cancer Registry13; this is an average of 190 cases per year. Thus, the 52 visitors to the CRR in its first year represent approximately 27% of those likely to be diagnosed with cancer within a given year in these 2 counties.
In consultation with the TCCCP coordinator, the CRR staff has targeted the following annual objectives: (1) increase self-reported higher quality of life after cancer survivors receive CRR navigation referrals; (2) increase the percentage of cancer survivors who follow up on recommended CRR referrals; (3) develop a system to identify and quantify barriers to follow up on navigation referrals experienced by those using the CRR services; and (4) increase the percentage of healthcare providers and related organizations that collaborate with the CRR. In June 2013, the navigator created a Visitor Entry Database to track information about those using the CRR and to record the extent to which users had been able to follow up on recommended referrals as well as any barriers they encountered. Among the first 22 individuals tracked, 73% reported following up on recommended referrals, 9% had not followed up on the referrals, and 18% were lost to follow-up.
The staff recognized that data collection forms for the Visitor Entry Database must be kept simple because of the low literacy levels of many of those using the CRR. To facilitate data collection, the navigator uses the visual guide shown in the Cancer Navigation Key (Figure) to help visitors identify where they currently are in their cancer journey and to focus staff discussions with patients and families to pinpoint needed resources. Family members often help survivors complete written forms, but much follow-up data collection is conducted orally—often by phone. These conversations focus on how survivors and families have followed up on the navigator’s referrals; what barriers, if any, they have encountered; how useful they have found the services; and any suggestions for improvement. Through repeated efforts, the navigator has been able to reach the majority of those called for follow-up.
After reviewing various existing quality-of-life measures, the navigator and her supervisor decided to use a simple 1-item questionnaire that asks respondents at follow-up to rate their agreement with the following statement: “My quality of life has improved after contact with the HOPE Cancer Resource Room and navigator.” The decision to use a single item to assess perceived contributions to quality of life reflects the need for data collection to be as simple as possible for the population served.
The staff has used feedback from visitors to the CRR to fine-tune their services. For example, when initial information from visitors reflected numerous requests for financial information, the navigator began concentrating more effort on locating sources of financial assistance. The navigator and her supervisor recently calculated that, in 2013, CRR visitors saved $19,444 in healthcare costs, about half of which consisted of medication discounts that they learned about at the CRR.
Sustainability Through Community Collaborations
Because the CRR emerged from the collaborative activities of the Val Verde–Kinney Cancer Task Force, including members from the ACS and the VVRMC, it has always had a strong collaborative network to support it. By the end of 2013, the CRR was collaborating with 38 organizations, including community programs, social service agencies, home health agencies, diagnostic/treatment facilities, nursing homes, and clinics in a 4-county area within a 70-mile radius. While sharing information is the most frequent collaborative activity, this network also shares resources and sends/receives referrals from the CRR.
The navigator is an active member of the Task Force and regularly reports on CRR activities at Task Force meetings. Task Force members, in turn, have distributed brochures about the CRR within their networks. When the navigator voiced the need for financial aid for lowincome cancer patients and families traveling to the comprehensive cancer center in San Antonio, Task Force members (who are also heavily involved with the local United Way) encouraged her to apply to the United Way for money to provide gas cards for these patients. Task Force members who have relationships with local media have also arranged for multiple articles about the CRR to be published in the local newspaper.
Going forward, the CRR staff and the Task Force hope to expand patient support services by organizing cancer support groups. As the initial start-up funding provided by the TCCCP expires, the Hospital District Board has increased its support for the CRR. The medical center’s vice president for community relations has become a champion of the CRR, and she has advocated with the Hospital District Board for increased funding. She is working with the navigator and her supervisor to use the data they have been collecting to make a persuasive case to the board about the positive impact the CRR has made on the community. Through these efforts, the Hospital District Board has increased its support for the CRR, although the CRR staff and Task Force members continue to seek other support for CRR activities as well.
The development of the CRR reflects the influence of the components in the model proposed by Serrata and colleagues3 (ie, environmental and organizational contexts as well as community and local professional expertise) and demonstrates the importance of contextual factors when designing a program for cancer survivors. The needs of the largely low-income population of Hispanic origin living in a small community have focused much of the CRR navigator’s efforts on identifying financial resources to reduce the burden of cancer on these survivors and their families. The limited literacy level of many visitors to the CRR has led the staff to be creative in developing educational materials and collecting data.
The Val Verde–Kinney Cancer Task Force, in partnership with the local medical center and the TCCCP, created the CRR and continues to nurture it. As such, the CRR story can inform those in other small communities, particularly those in border areas, about how they too might come together to develop resources to decrease the burden of cancer for their citizens.
Author Disclosure Statement: Rev. Marvin D. Wood, BS, reports being an employee of Val Verde Regional Medical Center, Del Rio, TX. All other authors have nothing to disclose.
Corresponding Author: Heather Becker, PhD, The University of Texas at Austin School of Nursing, 1700 Red River St, Austin, TX 78701. E-mail: email@example.com.
Heather Becker, PhD - The University of Texas at Austin School of Nursing, Austin, TX; Willie Braudway - Val Verde–Kinney Cancer Task Force, Del Rio, TX; Jill Maughan, MEd - Texas Department of State Health Services, Austin, TX;; Amanda M. Warfield, BS - Val Verde Regional Medical Center, Del Rio, TX; Rev. Marvin D. Wood, BS - Val Verde Regional Medical Center, Del Rio, TX;
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