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"Their needs are immense and all encompassing – yet rural areas do not have this capacity."

Rural Health Care Provider

HIV/STD PREVENTION IN RURAL AMERICA

Chapter 6: Living with HIV/AIDS in Rural Communities
 
Ways to Protect Privacy and Confidentiality of Participants
Interventions to Link Rural People to Care
Interventions to Reduce Risk Behaviors among Patients Living with HIV/AIDS
Interventions to Meet Mental Health and Social Support Needs
Interventions to Integrate Those Living with HIV/AIDS into the Community
Summary

The number of rural people living with HIV/AIDS (PLWHA) continues to grow due to new infections, extended life expectancies for those living with HIV or AIDS, and people moving to or returning to rural areas after being diagnosed. With early detection and anti-retroviral therapy people infected with HIV can expect to live productive lives with appropriate and consistent health care. A recent report suggests, however, that certain medical conditions are prematurely striking those who are aging and living with AIDS.[1] These age-related health problems can complicate the medical management for older HIV+ individuals and increase their need for medical and support services. Regardless of age or whether they are living in urban or rural settings, people living with HIV/AIDS need high-level medical services and case management. However, many HIV-infected people in rural America have inconsistent or nonexistent relationships with primary care providers despite the Ryan White CARE Act that provides health care and social services for those living with HIV/AIDS.[2] As one rural health care provider put it, “Their needs are immense and all encompassing – yet rural areas do not have this capacity.”

Receiving a diagnosis of HIV/AIDS is daunting under any circumstances, but when it occurs in a rural setting it carries extra burdens.[3-5] Rural residents are less likely to have health insurance making it difficult to access both care and expensive essential medications.[3] There are too few rural health care providers trained to manage the complex care for a patient with HIV/AIDS. Basic health services may be more than an hour away and specialized care may entail a several hour drive. This barrier to care is compounded by the lack of public transportation in most rural areas. Another significant gap in care for those living with HIV in rural areas is a lack of adequate mental health services, support groups, and substance abuse treatment programs even though the need for these services in rural areas meets or exceeds the need in urban areas.[4]

A lack of stable housing can also be a barrier to care. Stable housing has been shown to increase access to consistent medical care, increase adherence to drug therapy, and decrease HIV-related risk behaviors.6 However, rural residents living with HIV/AIDS risk loosing their housing due to discrimination, limited housing options in some rural areas, medical expenses, or an inability to work due to AIDS and related illnesses. Requesting or receiving housing assistance may unintentionally disclose a person’s HIV status in a small community. And people in more remote areas may be less aware of how to access services available through Housing Options for Persons with AIDS (HOPWA).

The burden that is perhaps hardest for rural people diagnosed with HIV/AIDS is fear of stigma and discrimination. It is not that these negative social reactions are unique to rural areas but they are often more severe and readily observed, leading to loss of jobs, housing, family, and friends. Some rural people living with HIV/AIDS have voiced concern for their personal safety as well.[7] This may be one of the most important areas of care that rural communities need to confront. Although it is a slow process, shifting social attitudes to be more tolerant of those with HIV is possible through increasing public awareness and giving these diseases a rural “face.”

The important ethical issue of unintentional disclosure deserves consideration at this point. Well intended services and interventions can put PLWHA at risk for disclosure of their HIV status to other program participants, extraneous clinic or program staff, drivers, and even people merely walking by the program site. Successful programs need to put a lot of thought into ways to protect the privacy and safety of participants.

Ways to Protect Privacy and Confidentiality of Patients and Participants
  • Ask patients and participants how best to protect their confidentiality.
  • Offer HIV care as part of primary health care.
  • Do not record HIV status in open medical records or program records.
  • Avoid discussing patients or program participants in public areas, in person or by cell phone.
  • Enable patients to enter a care or program center though the back door.
  • Schedule patients and clients to avoid having to sit in a waiting room.
  • Carefully select transportation services and stress the need for confidentiality.
  • Consider how the program is marketed and announced and whether this will “label” the site.

The rest of this chapter focuses on ways to overcome stigma and obstacles to care. The fifteen interventions suggest ways to link patients to quality HIV care despite limited resources and long distances. They explore ways to help providers and patients work together to reduce HIV/STD transmission. They describe innovative ways to meet mental health and social support needs of rural individuals living with HIV/AIDS. And they offer examples of how real rural communities are creatively collaborating to help integrate those living with HIV/AIDS into the community and decrease HIV stigma. Examples come from a national survey of rural HIV/STD prevention specialists 8 and from Connecting to Care II, a workbook by the AIDS Action Foundation that details evidence-based interventions to reduce stigma and bring quality care and support systems to patients.[2]

Interventions to Link Rural People to Care

Traveling HIV Clinics

The general concept of the traveling clinic is that an HIV specialist (infectious disease physician) travels to rural areas to provide state-of-the art HIV care to those living with HIV/AIDS in the area. There is a sponsoring health care facility in the rural community that donates space and nursing staff on a regularly scheduled basis every six to twelve weeks. The host facility should be one that provides general medical care and is well-used and well respected by the target population. Regional medical centers are one example of a successful host facility. Having a personable and reliable local case manager who organizes the schedule, provides clients with lab results after the visit, and serves as a communication link between local clients and visiting specialist is one key to success.

The travel team varies depending on local resources. One model has only the HIV specialist traveling to the outlying area and working with a full medical team from the local area. In this case, the visiting specialist trains a local physician in HIV care on an ongoing basis and consults with the local physician between visits by phone. In more remote places with few local health care providers, an entire team travels to the rural location, leaving follow-up care with the local healthcare provider best suited to manage ongoing HIV treatment. In that case, the traveling team might include a nurse or advanced practice nurse, medical resident, and a phlebotomist for blood draws. In many instances, the traveling team will collect specimens for sophisticated analysis to be done in an urban or university medical center. In some states, coordinating organizations have received funding from pharmaceutical companies for a chartered airplane to minimize travel time for the traveling HIV care team.

Traveling clinics are most successful when local healthcare representatives, state health departments, and urban medical centers work together to provide high quality continuity of care in outlying areas. The AETCs are often instrumental in organizing such clinics. Ryan White Care Act Title II and III funds are used to cover many of the expenses. Although this model presents a sensible solution for getting quality care to people living with HIV/AIDS in rural areas, the scheduling logistics can be overwhelming and do not always match emergency needs of patients. This means that programs such as this must have contingency plans for transporting patients to the sponsoring medical center at times for special or urgent services.

Evidence shows rural people living with HIV/AIDS who participate in a traveling clinic program have improved CD4 counts, lower viral loads, and lead longer and healthier lives. Such programs allow HIV+ individuals to remain in a rural setting and still get quality medical care. Vermont Comprehensive Care Clinic and AETC sponsored clinics in outlying areas of Colorado are strong examples of successful traveling clinics.

Comprehensive Care Clinics

Comprehensive Care Clinics may be “traveling clinics” or may be housed in regional medical centers with an HIV specialist on staff. The key concept of these clinics is to provide all services needed at one place to minimize transportation barriers and increase comprehensiveness of care. Services include primary care with a specialist in HIV care (local or traveling physician), anti-retroviral medication management, case management, risk-reduction and prevention counseling, mental health and substance abuse treatment, “inreach” testing and referral to care for partners, immunizations, housing, food banks, job placement, treatment or referral for opportunistic infections, and hospice.

Regional medical centers are a good choice for comprehensive HIV care clinics because they have the staff and facilities to provide high level care, and because people run less risk of inadvertent disclosure in a larger facility. Health Resources and Services Administration Title III funds are often used to fund such clinics. Most are built on collaborations between regional and local health systems, such as a university medical center and state health department. Even though travel distance may be further to a regional center, being able to get all or many services at once may be worth the cost and challenges of travel. Travel vouchers may be helpful to compensate family or friends who provide transportation. Volunteers often help with transportation and other services although involving volunteers often comes with a price of disclosure.

The Oklahoma State University (OSU) comprehensive clinic program includes all medical, social, and mental health services, a formal risk reduction counseling program, and a strong “in-reach” testing program targeting partners, spouses, and friends of HIV+ patients. The average positivity rate of their HIV screening program is 10-13%. Another innovative and successful component of the OSU program is a peer “outreach” program through which volunteers with close connections to social networks of those at heightened risk for infection are trained to offer HIV testing and risk reduction education. This peer outreach program has increased the proportion of rural people living with HIV/AIDS who are in care by 25%. A similar program in Florida has used a $10 food voucher incentive to bring people in to be tested and to get those who test positive linked to care.

Provider Pocket Guides for HIV Care

The AIDS Education and Training Centers (AETCs) provide a wide variety of pocket guides for health care providers to use to fencesupport their HIV/STD prevention and care of patients living with HIV/AIDS. The HIV Risk Assessment: A Quick Reference Guide pocket guide includes tips for conducting drug use and sexual risk assessments on one side with information on risk reduction counseling on the other side. The HIV Medication Quick Reference provides information about current HIV/AIDS medications. A chart with actual size photos of current HIV/AIDS medications is available to supplement the medication reference card. Pocket Guide to Adult HIV/AIDS Treatment is intended to be a quick reference for antiretroviral drugs, antiretroviral therapy, opportunistic infections, and related issues. Common Legal Issues and Concerns of Adolescents with HIV: A Guide for Clinicians informs clinicians about issues specific to caring for adolescents with HIV/AIDS. Many of these resources are available for personal digital assistants (PDAs). Pocket guides and other AETC resources can be found at www.aids-ed.org/aidsetc?page=et-00-cstools.

Home-Based Treatment Coordinator

The Home-Based Treatment Coordinator is appropriate for adult patients whose best option is to travel to an urban center for care. A registered nurse from the treatment institution travels to rural HIV+ patients and visits with them in their homes or another location selected by the client to discuss care plans. Specifically the nurse acts as a patient advocate and navigator, helping the patient navigate through an urban health care system.

The Treatment Coordinator coordinates these services with those provided by the case manager. The Treatment Coordinator brings the healthcare agency closer to people living with HIV/AIDS so that a conversation about beginning or continuing care can occur. Transportation and childcare are provided if needed. The Coordinator focuses on the health of the “whole person” and helps clients overcome barriers in a fragmented system. Evidence shows increased consistent care and increased CD4 counts.

Care Renewal and Prescriptions by Post

This individual level intervention takes advantage of existing postal services to help people remain enrolled in their state HIV care program and receive their medications without compromising their privacy. A case manager guides clients through the re-enrollment process by phone and assures that the materials are submitted by mail by the deadline. Another service involves having the pharmacy deliver medications to the agency or case manager. The case manager then repackages and mails the medications to the client using only a street address for the return address. This program promotes continuity of care and adherence to medication regimes while enhancing the relationship between client and case manager.

Managing our HIV Workshop Series

This group-level intervention provides a safe environment for health educators and HIV+ clients to share information about HIV/AIDS, ideas for managing symptoms, nutrition suggestions, safer sex tips, and ways to improve adherence to antiretroviral regimes. The five week series is geared to those struggling with medication adherence or just starting antiretroviral therapy. In rural areas, participants might be drawn from a regional area and sessions could rotate among locations. Transportation subsidies based on available resources and participant need are provided and prioritized based on distance travelled.

Ideally, two health educators co-facilitate most sessions and one educator should be HIV+. Depending on the group, it might be necessary to have at least one health educator who is also bilingual. A nutritionist also comes in to facilitate a session on nutrition. Open discussion, activities, and games encourage learning in a non-threatening way. Depending on the available facilities, it is best to hold the workshops in a community setting outside the clinic, perhaps at a community college, to protect privacy. Offering tasty and nutritious food at each workshop provides an incentive for participants and reinforces the nutrition messages, although it also requires additional funds. Having volunteers from local organizations provide food could be a way to garner community support, although involving volunteers may infringe on participant confidentiality.

This workshop has been shown to increase patient interest in their health care, decrease viral load through improved medication adherence, and increase social support. Participants also report increased confidence in the efficacy of their medications. It is most successful in areas with enough HIV+ clients to fill a class several times a year so people do not have to wait months for a group to begin.

Interventions to Reduce Risk Behaviors among Patients Living with HIV/AIDS

People living with HIV/AIDS often adopt safer sexual practices after their initial diagnoses. Over time, some individuals resume risky behaviors such as not disclosing HIV status to sexual partners, engaging in unprotected intercourse, and having sex while under the influence of drugs or alcohol. These behaviors put the health of those living with HIV/AIDS and their sexual partners at risk. As a result, there is a current emphasis on preventing transmission from those already infected with HIV through ongoing, brief behavioral counseling by medical care providers as part of their routine care.

Prevention IS Care

Prevention IS Care is a social marketing campaign developed by the CDC to encourage medical care providers to include brief, tailored HIV/STD prevention messages in their regular care of patients who are living with HIV/AIDS. Free materials help clinicians learn to tailor prevention messages, facilitate open dialogues, initiate information exchange, and strengthen patients’ abilities to make healthy choices. Free informational posters and patient education brochures are available to increase patients’ knowledge about risks associated with transmission of HIV and other STDs. Continuing education credit is available to motivate health care providers to update and enhance their knowledge and skills. Prevention IS Care materials and resources are available online.

Partnership for Health

The Partnership for Health loss-frame intervention is a one-on-one, brief provider-administered safer sex intervention for HIV infected persons in medical care. The intervention is included in the CDC’s Diffusion of Effective Behavioral Interventions (DEBI) program. It requires a commitment from the entire clinic to counsel patients living with HIV/AIDS to change behaviors to reduce HIV/STD transmission. The intervention emphasizes the importance of the patient-provider relationship to promote patients’ healthful behavior. At each clinic visit, the provider delivers a 3-5 minute counseling session with messages that focus on self-protection, partner protection, and disclosure. Loss-framed messages emphasize the risks or negative consequences of risky behavior. The clinic posts brochures, informational flyers and posters with the loss-framed messages to facilitate counseling and help patients identify risk-reducing behavioral goals. The loss-framed intervention has been shown to significantly reduce unprotected anal and vaginal sex among HIV+ patients with two or more sex partners. In contrast, the gain-framed message intervention did not result in significant behavior changes. Partnership for Health intervention training is being provided through the STD/HIV Prevention Training Centers (PTCs) and CDC Capacity Building Assistance agencies. More information about receiving training on Partnership for Health interventions is available by emailing interventions@aed.org or going to the National Network of PTCs website to find the nearest PTC to contact.

Ask, Screen, Intervene: Incorporating HIV Prevention into the Medical Care of Persons Living with HIV

In contrast to Partnership for Health, Ask, Screen, Intervene (ASI) trains individual providers rather than entire clinics to screen for HIV/STD transmission risk behaviors, identify and treat other STDs, communicate prevention messages, facilitate changes in sexual and drug-use risk behaviors, refer selected clients for additional prevention services, and facilitate partner notification and referral to Partner Services. This course is designed for medical care providers of patients living with HIV/AIDS (e.g., medical doctors, nurse practitioners, registered nurses, and physician assistants); however persons who deliver prevention messages (e.g., case managers, social workers, health educators) may also benefit from the information and prevention strategies delivered throughout the course. More details about the ASI intervention and opportunities for training in rural areas are available through the STD/HIV Prevention Training Centers' website under New Training Resources.

Interventions to Meet Mental Health and Social Support Needs

Mental Health Triage Counseling

Mental Health Triage Counseling pairs primary care with mental health and substance abuse counseling in one location to achieve a coordinated health care regimen for rural HIV+ clinic patients. It requires a relatively large staff due to the “on-call” nature of the services and may not be feasible for smaller rural health care communities. The innovative feature is that once the health care provider identifies that an HIV+ client needs a counseling session, the provider contacts the on-call counselor and escorts the client to meet the counselor on the spot. The first 30-minute triage counseling session focuses on acute issues, assesses mental health needs, and ends with counselor and client creating a plan of action for future services.

Triage Counseling is most beneficial for people living with HIV/AIDS who show signs of or have been diagnosed with mental illness. Providing both essential services in the same location at the same time enables patients to stabilize their life situations so they can actively participate in their HIV medical care. The shared location also allows coordination and communication between medical care and mental health care providers through shared records, weekly interdisciplinary staff meetings, and interdisciplinary action plans.

This model requires a supervisor and several licensed counselors with complementary areas of specialization (substance use, trauma, mental health disorders, etc.) and an ability to provide counseling in languages commonly spoken among the patient population. Counselors need to receive intensive HIV training with monthly HIV/STD updates provided by clinical staff. A consulting psychiatrist should be available if needed.

Evidence shows that those participating in Mental Health Triage Counseling have improved life function scores, are more consistent in attending medical appointments, and show clinical improvement in their health. It may be difficult for counselors to adapt to this primary care model and for small communities to find adequate space and staff.

Telephone-Delivered Group Counseling

elephone-delivered group-level mental health counseling is appealing for people living with HIV/AIDS in rural areas since it eliminates transportation barriers and decreases potential unintentional disclosure. Interventions pair one counselor with one patient for the entire treatment period. The focus is on helping participants to identify changeable and unchangeable aspects of their stressors, to develop problem-focused coping strategies, and identify appropriate ways to gain social support.

While trials of this approach have resulted in less depression and better coping among urban PLWHA, results of the few rural trials have been less clear. In general this intervention has not been shown to reduce depressive symptoms among phone counseling participants more than a control condition. However, an intervention that focused more on information than coping skills showed there were higher levels of support from friends and fewer reported barriers to health and social services four months after the intervention. [9]

It is important to note this intervention requires counselors experienced with group work, telecommunication counseling and rural issues surrounding HIV/AIDS.

Social Event Gatherings

This group level intervention is intended to decrease the social isolation experienced by many rural HIV+ clients by developing a support network and building rapport between clients and case managers. Ideally, social events would take place four times a year in a location that is HIV neutral and central to those attending. Some or all events may include families. Events should honor all cultural values represented in the group. Clients help identify a theme, plan the food, and set up or clean-up. Transportation should be guaranteed for all. Volunteers from community service organizations may provide transportation if group participants agree. The potential for unintentional disclosure of HIV status needs to be considered in planning transportation, selecting locations, and including families or guests.

Evidence shows that social events decrease social isolation and strengthen bonds between clients and case managers in a fun way. Of course, not all clients are interested in this type of socialization and it may take several events for the group to gain momentum. Offering a variety of events (outdoor, indoor, with and without family) allows for clients to attend events at which they feel most comfortable. Clients with few resources may be embarrassed that they cannot contribute to the event in some way. This can be avoided by having the organizing agency provide the food, decorations, and transportation. Similarly, it is better to avoid events that require any special dress since those with very limited resources may feel intimidated. Since the group may be quite diverse, the case manager may need to facilitate group dynamics as people get to know each other and as new members join the group.

Interventions to Integrate Those Living with HIV/AIDS into the Community

The Housing Plan

The Housing Plan is a screening tool offered in Connecting to Care II that engages low income HIV+ individuals living in rural areas in formulating a comprehensive plan to address their housing, financial, medical, and mental-health care needs. The tool helps clients identify and accept their needs, which may be very difficult emotionally. The emphasis is on the listening and sharing process as much as the planning. A housing case manager should take the lead but in small agencies, this could be the medical case manager. The housing case manager helps the client navigate through the channels to access housing assistance. Meetings may be in the client’s home or in another “safe” and private space. Transportation is provided if the client must travel a distance. The agency can use the Housing Plan to track changes in clients’ housing and health conditions. Client Quality of Life Surveys show that 91% of Housing Plan clients report they “are better able to manage their lives because of the assistance.” In client reports, 70% of clients note experiencing “less stress” and the number who “lost sleep because of bills” decreased by 50%.

HIV Ministry Emergency Shelter

"People in this area are much more comfortable with homelessness than HIV.”

Director of the HIV Christian Ministry Emergency Shelter

This community-level project engages volunteers from a broad faith-based community to staff a homeless shelter and refer those who are HIV+ to services through the affiliated drop-in center staff and case managers. It is a starting point for gaining support of congregations for HIV care. The shelter serves all people regardless of their HIV status. Four local congregations rotate responsibility for shelter staffing for one month at a time. All volunteers receive information on HIV/AIDS and learn how to support clients who choose to disclose their HIV status. For those who do disclose their HIV status, paid staff members at the drop-in center connect them to medical, mental health, and social services. The shelter helps to decrease community stigma and discrimination by giving a “face” to HIV/AIDS. Case managers are available to help people find employment and develop a plan for permanent housing. Such shelters and drop-in centers could be sites for voluntary HIV and STD testing. Since there is high turnover in the shelter volunteer staff, policies should be in place to help prevent unintentional disclosure of HIV status to those outside the program. Clients who have fully engaged in the transitional shelter and counseling have reported that they have regained their dignity and self-worth through the experience. Congregation members appear to be more tolerant of PLWHA based on their increased donations to the shelter and an increase in the number of volunteers involved. More details are available through Connecting to Care II.

HIV Community Task Force

An HIV Community Task Force brings together HIV+ and HIV- community members, service providers, educators, and leaders from faith-based organizations to identify and address HIV/AIDS specific issues in the community. The focus is often the needs of those living with HIV/AIDS. Collaborative groups help to break down HIV/AIDS stigma by increasing understanding of the commonalities shared by those infected and not infected with HIV. A key staff person, such as a case manager from the local health department, often acts as the organizer. The group may select somebody different to facilitate meetings. It is helpful if the organizer and facilitator remain consistent for at least a year.

Keys to success include: meeting in a neutral location, giving group members the right to disclose or not, and establishing a high level of confidentiality and trust between group members. Neutral locations might include a community center, church, public library, community college, or a local business meeting room. All participants must feel comfortable meeting in a church space if that is an option. This model has been used successfully in communities with Black populations and in communities in the rural West with primarily white MSM and youth affected by HIV. Involvement of faith leaders has had a strong impact in the rural South and may encourage participation by Black women. Groups usually meet monthly, which can contribute to fluctuations in attendance and make it difficult to accomplish tasks in a timely manner. Transportation support helps assure full attendance as does having a conference telephone line and speaker phone available for those unable to attend in person.

Having a concrete task for the group to work on leads to team building, insightful conversations, and increased attendance. Recruiting members based on the core task ensures that those involved have common interests. Tasks might include a community awareness campaign, compiling a local resource directory, or planning a local fundraiser such as an AIDS walk. The San Luis Valley HIV/AIDS Task Force in rural Colorado sponsored a rapid HIV testing and counseling training session for several neighboring counties. The Huntingdon County AIDS Task Force in Pennsylvania is reinventing their group to provide general HIV/AIDS information and specific resources to support those infected and affected by HIV/AIDS. Task forces may face the challenge of needs that exceed volunteer capacity and available funds. On the other hand, the group creates an ability to leverage resources within the group and bring together resources from the networks of each group member.

Summary

Providing care for those living with HIV/AIDS is challenging in all settings, but it is uniquely challenging in rural areas. Several interventions presented here show that the lack of rural HIV care specialists, transportation challenges, and poverty can be overcome to effectively link rural residents to HIV care. Other interventions describe programs to motivate and train rural medical care providers to include HIV/STD prevention messages in their routine care to help protect the health of those living with HIV/AIDS and their partners. Meeting mental health needs in rural area can be improved by partnering with primary care, using telephone technology, and bringing those affected by HIV together to develop support networks. Helping people living with HIV/AIDS maintain stable housing and become more integrated with the community can be accomplished through individual level counseling, programs sponsored by faith-based organizations, and community task forces. Hopefully, these programs can work for other rural communities or at least provide suggestions for ways to bring innovative ideas and resources together at multiple levels to confront rural obstacles to HIV care and prevention.

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