Healing With CAARE

What Does CE Research Look Like?

CE research is “a partnership approach to research that equitably involves … community members, organizational representatives, and researchers in all aspects of the research process and in which all partners contribute expertise and share decision making and ownership” [1]. The goal of CE research is to increase knowledge in a way that benefits the community.

CE research is the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to conduct research that addresses issues affecting the well-being of those people [2]. Through the involvement of individuals with diverse perspectives, CE research can facilitate increased cultural understanding, which can become a foundational aspect of the scientific discovery and translational research process. CE research is not a novel or innovative concept, but the application of a CE approach often occurs too late in the translational process.

Beyond building a multidisciplinary, culturally specific research team at the onset, the CE research team must work from a foundation of both experiential and didactic exchange. A consistent didactic exchange throughout the research process aids in the development of communication and trust in order to better preserve a culturally appropriate and competent research approach. From a CE perspective, one challenge is to articulate how best to foster and encourage environments that allow a diversity of perspectives to coexist. Collaboration and trust are foundational dimensions of these efforts, but institutions often do not reward or incentivize multidisciplinary translational approaches, which require sustained input from a diverse research team.

Healing with CAARE, Inc. is an example of a community-based organization that has long-standing partnerships with several academic institutions. From CAARE's long-standing experience in CE partnerships, scientists across many disciplines can gain from the overview of CAARE's experiences, the lessons learned from these partnered experiences, and the knowledge of how to address areas for further development when engaging in CE partnerships.

Evidence-Based Services and Practices

CAARE has established specific protocols, guidelines, and practices to provide high-quality substance abuse and HIV/AIDS case management services to its clients. The foundational objective of service delivery at CAARE is to provide services that surround each client and to eliminate gaps in care by utilizing a multidisciplinary team that maintains a focus on outcomes instead of service units. Since its inception, CAARE has built an organizational structure that facilitates implementation of evidence-based practices, monitors evidence-based practices and client outcomes, hires and maintains staff with appropriate skills and experience working with the target population, and creates employee evaluation procedures that emphasize evidence-based practices and outcomes.

As a powerful example of how to redesign and re-conceptualize health care, CAARE promotes a holistic and community approach to health, with a goal of making it as easy as possible for people to engage in their care. Figure 1 provides an overview of the principles inherent in CAARE's everyday, around-the-clock service delivery efforts.

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FIGURE 1.

The Structure of CAARE Services

Source: Healing with CAARE, Inc. website (http://caareinc.org).

A Family Commitment to Partnership and Service

In 1995, one of the authors (S.E-B.) and her older sister, Patricia Amaechi, became concerned about the effect that HIV/AIDS was having on the community. Durham had a large at-risk population, and whole neighborhoods of low-wealth people had little or no access to health care services. Seeing these health disparities and feeling the need to give back to the community, the 2 sisters founded CAARE together. The organization was registered with the North Carolina Secretary of State in March of 1996.

CAARE, which stands for “Case management of AIDS and Addiction through Resources and Education,” has expanded its strategies far beyond case management, resource referral, and education to addresses the 5 health disparities with the highest mortality rates in the Durham County area: cancer, cardiovascular disease, diabetes, obesity, and HIV/AIDS. Unlike many service organizations that are only able to address the most obvious clinical aspects of health, CAARE has stretched its resources to provide a safety net of services that encompass peoples' social, emotional, financial, and psychological situations.

CAARE's holistic approach comes with the understanding that health care providers can most effectively help patients by meeting them where they are and by examining all of the barriers to a person's wellness before labeling him or her as noncompliant. CAARE provides nontraditional health and human services that fulfill people's most basic requirements first, and it then equips individuals with the knowledge they need to manage their own health. CAARE's success in the community is driven by the organization's commitment to intention, integrity, and inclusion for all community members—especially hard-to-reach and historically marginalized individuals. CAARE strives to eliminate health care barriers by advocating for a part of the Durham County community that is too often ignored.

Intention

Over the past 2 decades, CAARE has not only provided preventive and clinical services; it has also sought to address the social and human factors that contribute to health disparities. Envisioned as a one-stop shop, CAARE converted a 23,000 square-foot factory into a community-based organization that offers multiple services to improve the health of community members. CAARE maintains an open-door policy that encourages any community member to ask for what they need. This directly aligns with CAARE's guiding principle to meet each individual where they are and to serve all who arrive at CAARE with integrity and inclusiveness, without judgment of where their starting point may be.

CAARE's Jeanne Hopkins Lucas Education and Wellness Center includes a free clinic with a lab and 3 exam rooms served by volunteer health care providers. Services focus on 5 health disparities: HIV/AIDS, diabetes, high blood pressure, obesity, and cancer. CAARE recently opened a dental clinic, as well, which is staffed by a volunteer dentist. In addition, the center offers holistic services at no cost, such as acupuncture, massage, and reiki. CAARE also has a free gym that offers access to a personal trainer and daily exercise classes, such as Zumba, line dance, African dance, and yoga.

CAARE's support services include a substance abuse outpatient treatment program; case management; and individual, group, and family counseling and support. CAARE also conducts HIV counseling, rapid testing, and community education and outreach; the latter includes HIV education, street community outreach, risk reduction sessions, health fairs, screening, and peer education services.

CAARE's food pantry is open Monday through Friday and works with local farmers and community-based organizations to distribute fresh fruits and vegetables. A community kitchen prepares hot meals daily and serves as a space where community members can hold cooking classes.

The Benefit Bank program is a free service that helps people connect with state and federal benefits, tax credits, and other public funds.

CAARE's job readiness programs prepare individuals for the workplace; these programs include onsite GED classes, computer classes, and job training classes. CAARE is also an NCWorks job search center. In addition, CAARE recently opened a community entrepreneurial center with cubicles, computers, equipment, and onsite consultants to help people start their own businesses.

CAARE's veterans' transition program offers affordable housing for male veterans who are transitioning back into civilian life. CAARE is currently building an onsite 15-bed dormitory with a spacious community room, 2 offices, and a private bedroom and connected bathroom for each veteran.

Finally, CAARE's Cathy Hughes Community Connection Center is a place where community members can celebrate special life events, convene meetings, thank volunteers, or hold daily exercise classes.

All of these services did not appear easily. At each stage, CAARE's founders had a vision of what was possible and worked to remove or circumvent barriers by building strong partnerships. As a result, having limited resources has never been an insurmountable hurdle.

Integrity

CAARE's leadership and staff listen to and respond to the expressed needs of individuals in the community. For example, when individuals in recovery said they were having difficulty in finding jobs, CAARE's response was to become a NCWorks job search center, hold GED classes onsite, and open a community entrepreneurial center. When a 7-year-old said she wanted a space to spend time with other children, CAARE's response was to turn a storage room into a creative space where children could play with toys and board games, write and draw on blackboards, read, and hang out. For women who felt uncomfortable using the machines and weights in the gym, CAARE responded by holding daily exercise and dance classes in the community room. CAARE also found a personal trainer to help women learn how to use the equipment and reserved time for Muslim women to exercise when men will not see them uncovered. For HIV-positive women who needed a space to socialize and hold their support group meetings, CAARE created a coffee corner with comfortable chairs, tables, and books. Finally, when clients expressed an interest in gardening and landscaping, CAARE's response was to start working to create a hydroponic garden in their backyard.

As these examples show, CAARE seeks to make it as easy as possible for individuals to engage in their health and care and to support themselves and each other. By listening and responding in this way, staff members at CAARE can earn the trust of the individuals they serve—people who want to come back and, when able, give back to others.

Inclusion

When you walk into the CAARE office, the front room is spacious and welcoming. The walls are painted warm colors of red and yellow. There is limited information posted about services so as not to stigmatize clients. A person sitting at the front desk welcomes clients and helps them navigate where they need to go. Respect, dignity, and caring for individuals are clear from the design of the space and from the way staff members carry themselves and treat the individuals who come to CAARE.

Inclusion also means mobilizing community resources and volunteers. It means working with local business and community-based organizations to get supplies and resources for construction. It means working with allied health, business, and child development programs at local universities, whose students gain experience while providing services and building programs at CAARE. Finally, it means that the people who are usually the highest paid in health care—doctors, nurses, and dentists—are volunteers for CAARE, and they have the equipment and support they need to do their jobs effectively.

CAARE's Commitment to CE Research Partnerships

The melding of CE theory and practice in service provision has continually led to a more effective health care delivery that provides a new perspective on the practice implications of health-related research and helps to identify novel approaches to addressing fundamental concepts such as health disparities. We continually gain insight into the fact that all collaborative discussions (especially theoretical discussions) benefit from grounding in practice. From the CE process, we also better appreciate the need to respond with a long-term commitment to broad community participation and to balance our response to pragmatic concerns with explicit attention to the long-standing difficulties posed by the challenging alignment between theory and standardized research principles.