MODULE DESCRIPTION
The need for services for persons living with HIV/AIDS is spreading to the rural
community, and poses strains on both the rural providers and the rural consumers.
Persons in all stages of the HIV/AIDS disease, from the first evidence of becoming
HIV+ to the terminal phase, are placing new demands on existing systems of care in
the rural setting. From the consumer’s first HIV/AIDS-related contact with the health-care
system, to the final stages of HIV disease, there is a need for the development of
health and social services that reflect the understanding of what living with HIV/AIDS
means to the consumer. The apparent low numbers of persons living with HIV in the
rural setting has meant that until recently, rural providers have not been as need-driven
as providers in an urban setting to develop responsive educational, health, and social
service systems.
GOAL
To educate Vocational Rehabilitation (VR) Counselors about the unique issues of HIV/AIDS
care in a rural setting.
OBJECTIVES
Participants will be able to:
• Define the problems of consumers in the rural setting
• Discuss the problems of service delivery in the rural setting
• Explore the possibilities of what can be done to improve service to the consumer
in the rural setting (outreach, satellite clinics, etc,)
MATERIALS NEEDED
Board and markers or flip chart and markers.
TIME REQUIREMENTS
This module serves as part of the foundation for all HEART training because urban
and rural issues occur everywhere depending on the context and/or the particular
background of the consumer.
INSTRUCTIONS
Presenter to encourage group participation.
Presenter will have trainees form a semi-circle around presenter and a board or flip
chart. Presenter will ask questions in each section and invite a participant to write
answers on a board or flip chart.
Presenter will elicit short, rapid responses.
Note to Trainer: This module can be mixed and matched to fit your own unique training
needs and style and may be formatted to accommodate your presentation schedule. If
you choose to pick only the culturally diverse consumer panel for the presentation,
an important point to remember is that the panelist may not discuss the objectives
of the module, but they will have their own important personal story. After the panel,
the trainer may need to fill in their service recommendations with the supplemental
material.
INTRODUCTION
The need for services for persons living with HIV/AIDS is spreading to the rural
community, and poses strains on both the rural providers and the rural consumers.
Persons in all stages of the HIV/AIDS disease, from the first evidence of becoming
HIV+ to the terminal phase, are placing new demands on existing systems of care in
the rural setting. From the consumer’s first HIV/AIDS-related contact with the health-care
system, to the final stages of HIV disease, there is a need for the development of
health and social services that reflect the understanding of what living with HIV/AIDS
means to the consumer.
DIFFERENCES BETWEEN URBAN AND RURAL HIV CARE
Rural Urban
• Low prevalence numbers High prevalence numbers
• Lack of HIV-trained medical Higher number of HIV trained
specialists specialists
• Geographical distances much Shorter geographical distances
harder to get care to get care
• Transportation often Municipal transportation
insufficient or unreliable often available
• Confidentiality compromised Confidentiality more protected
• Lack of cohesive support Community support more
For men, women, children available, more organized
around quality of life
• Nonsupportive work Work environments more
environments adaptable, accommodating
• Shortage of psychologists, More mental health services
social workers, mental because greater funding
health counselors due to
less funds
• Lack of employment Greater number of employment
opportunities opportunities
• Lack of HIV/AIDS knowledge More Knowledge about HIV/AIDS
among rural citizens among urban citizens
• Less tolerant of diversity More tolerant of diversity
LOW PREVALENCE NUMBERS OF HIV INFECTED PERSONS IN RURAL AREAS
The apparent low numbers of persons living with HIV in the rural setting has meant
that until recently, rural providers have not been as need-driven as providers in
an urban setting to develop responsive educational, health, and social service systems.
Three factors contribute to the underestimation of HIV prevalence. One is the “iceberg
phenomenon” of HIV which refers to the tip of the iceberg, meaning that the number
of reported AIDS cases is much smaller than the overall prevalence of those infected
with HIV. Refer to Medical Module. What is visible (the top of the iceberg) to various
agencies and communities is only the numbers of reported cases of AIDS and numbers
of those testing positive for HIV which may be severely under-reported (Davis, 1992).
No one knows exactly what the estimate is for those who are infected with HIV and
have not been tested and are unaware of it (i.e., those that are “submerged”). Current
estimates are:
Worldwide:
- 20 million HIV infected individuals
- By the year 2000: 40 million infected individuals are expected
In United States:
- AIDS has been reported in all 50 states
- 800,000 to 1,000,000 people are HIV positive in the U.S. (CDC)
Two other factors affecting underestimation of HIV prevalence are the asymptomatic
latency period and the migration of AIDS cases not included in state case figures.
Migration refers to consumers who “come home” to die or because they anticipate that
they will need care from their families during the advanced and late stages of HIV.
Since those who migrated originally tested positive or were diagnosed with AIDS in
a city, their original city carries them as a statistic, rather than the area where
they have relocated (Smith, 1990). “Low prevalence” statistics lead to under funding
of HIV education and care and to denial that the epidemic is effecting rural areas.
(Davis, 1992) An additional risk of underestimating the prevalence of HIV is that
safer sex practices won’t be implemented for those at risk because they believe the
risk is low. At a 1995 National Rural AIDS Conference, attendees were asked to compare
living with AIDS in a rural area to living with a different long term illness in
a rural area; 85% described living with AIDS as “awful” or “difficult”. (Heckman,
G., 1996 p.41).
LACK OF ADEQUATELY TRAINED MEDICAL SPECIALISTS AND RELUCTANCE OF MEDICAL PERSONNEL
TO PROVIDE HIV-RELATED SERVICES
Research has shown that persons living with HIV/AIDS have a longer life expectancy
when cared for by physicians who have had a large number of HIV+ patients and who
have expertise about this illness. This lack of expertise may have vocational rehabilitation
consequences if the physician does not recognize the disease, does not think clients
are at risk, or does not know the true prognosis, degree of physical disability or
discomfort, or the most current treatment protocol that allows maximum ability versus
disability. Consumers who seek care in a teaching hospital, where HIV education and
experience is more accessible, are more likely to encounter physicians with a more
updated knowledge than community physicians.
Rural health institutions may be hesitant to promote themselves as an AIDS care provider
for several reasons. First, they are already overloaded on their indigent funding.
Secondly, they fear the consequences of being known as an AIDS care center. Thirdly,
Medicaid reimbursement for acute and long-term care is much lower than for those
in public urban hospitals (Smith, 1990). The consequences to the consumer are that
experimental drug protocols and treatments are not available and the health care
community can continue to be in “denial” that HIV is a serious problem in the rural
areas. (Smith, 1990).
Exercise (Case Study )
Presenter divide the larger group into groups of 3. Instruct participants to read
through Part 1 of the case study while you read it aloud to them. Ask participants
to jot down their feelings at each stage and be prepared to discuss these feelings
with their triad.
Part 1: Imagine that you are a 24 year old gay male who seeks medical help in a rural
setting for a sore in your mouth, around your gum, that has become rather painful.
You have had already one HIV test, 5 months earlier, during a bout of shingles. That
test came back negative (falsely). The medical staff now does another HIV test and
tells you that you are HIV positive. The doctor looking in your mouth now stands
as far away from you as possible so he can just barely see in your mouth with the
flashlight, and his arms are stretched as far as possible. His body language suggests
that he is frightened of touching you or being near you. There is no discussion of
how you are to comprehend this new information about being HIV+. How do you feel......?
• Discuss in triad and presenter use markers to briefly write down major feelings.
• Presenter asks participants to read through Part 2 of the case study while presenter
reads it aloud.
Part 2: Continue to imagine that you are this same 24 year old gay male, on a return
visit to the same medical setting. At this time a different doctor gives you the
result of a CD4 count, informs you that your CD4 count is 15, and tells you that
you have full-blown AIDS. The sore in your mouth has been diagnosed as a Kaposi Sarcoma
lesion. Another doctor is brought in the room for consultation. The doctors then
have the following conversation in front of you:
Doctor A, “I already have two AIDS patients and I don’t want a third one.”
Doctor B, “Well, I already have three AIDS patients, and I’m not ready to take on
another one.”
The doctors step outside and when they return you guess that they have flipped a
coin and the loser got you for a patient.
Doctor A tells you that based on your CD4 count of 15, you have about 6 months to
live.
How do you feel...?
Note: With Kaposi’s Sarcoma, a person may be able to live a long time.
• Discuss in triad and presenter use markers to briefly write down major feelings
of participants.
INTERVENTIONS
Consumers need access to the most current treatment protocols in order to keep their
viral load at a minimum. Currently researchers are evaluating the advantages and
disadvantages of linking rural satellite health care clinics with urban facilities,
having physicians experienced in HIV-related treatment train and consult with local
providers. Gay and lesbian professionals can provide positive community role model
to help educate others about issues related to homophobia and AIDS related services.
GEOGRAPHIC DISTANCES ARE MUCH GREATER TO REACH SOURCES OF HEALTH CARE AND SOCIAL
SUPPORT.
It is not uncommon for HIV+ people to have to travel 40 to 100 miles to get access
to the medical care they require. This is particularly true for specialized services
such as respiratory treatment centers, physical therapy, hearing or visual impairment
services, certain social services, hospices, and medical clinics which offer access
to experimental drug and treatment protocols. (Smith, 1990)
Driving long distances can be personally debilitating, frustrating, and expensive.
There is often loss of valuable work time. If a person has lost their job and has
little financial resources, these geographical distances may be too much of a hardship.
The consequences to the consumer are that they may become discouraged and non-compliant
about their treatment which can shorten their lifespan (Smith, 1990).
TRANSPORTATION IS OFTEN INSUFFICIENT OR UNRELIABLE
There are often no buses or organized medical transportation systems for people in
rural areas to travel the necessary distances. Many people living with HIV do not
own a car or are not feeling well enough to drive long distances, especially if they
are dealing with a lot of fatigue. If any special transportation system is set up
for HIV related care, consumers may lose their anonymity.
Exercise (Case Study)
Presenter asks participants to read through Part 3 of the case study while presenter
reads it aloud.
Part 3. Continue to imagine that you are this same 24 year old, single gay male.
In order to get to the various medical appointments described in Parts 1 and 2, you
must travel by car for about 60 minutes. The bus service runs only once a day to
the city you must go to for your medical care. Since you have no car of your own,
you are dependent on one of your cousins to drive you to the doctor each time you
have an appointment. Sometimes you must ask more than one cousin to find one who
can take the time off.
• How do you feel....?
• Discuss in triad and presenter use markers to briefly write down major feelings.
CONFIDENTIALITY IS COMPROMISED
In the rural community it is difficult to be anonymous, especially when seeking health
and welfare services. The interconnectedness of the systems, personal associations,
work and leisure make the consumer much more visible. Also many rural agencies use
paraprofessionals or volunteers for staffing who do not appear to be trained in the
necessity for confidentiality. Entire families may be stigmatized by their association
with an HIV infected member. The consequences to the consumer are loss of job, housing,
church membership or use of public swimming pool (Smith, 1990). Certain disenfranchised
populations (gay/bisexual/lesbian, IV drug users, Illegal immigrants, etc.) may feel
much less cooperative with public health authorities in the rural community when
there are issues of confidentiality. These issue could be around confidential or
anonymous testing, informed consent and contact tracing (Smith, 1990).
Exercise (Case Study)
Presenter asks participants to read through Part 4 of the case study while presenter
reads it aloud.
Part 4. As you continue to imagine that you’ re this same 24 year old gay man, imagine
now that you have told your cousins what is happening during your medical visits.
In the meantime your cousins find it so out of the ordinary that you have AIDS that
they have told the whole rest of the family. The whole rest of the family has mentioned
your status to the hairdresser, the bank teller, the store clerk where you buy your
groceries, and the neighbors. One of the neighbors who works at the medical setting
you go to is a good friend of your mothers. When you have run into her at the clinic
or in town, she appears frightened of you and tries to avoid talking to you by quickly
walking away. You are the only one you know of in your town who has HIV/AIDS and
it seems as if the those people around you have nothing else to talk about. You have
no privacy about your business. How do you feel?
• Discuss in triad and presenter use markers to briefly write down major feelings.
LACK OF A COHESIVE SUPPORT COMMUNITY FOR MEN, WOMEN, AND CHILDREN LIVING WITH HIV/AIDS
Cohesive support is most helpful when it is easily attainable and organized around
quality of life strategies which includes the following:
Financial benefits such as Food Stamps, General Assistance GA), Medi-Cal, Social
Security Disability (SSA), State Disability (SDI), Supplemental Security Income (SSI),
and/or Aid to Families with Dependent Children (AFDC).
Vocational rehabilitation (VR) including counseling, training, placement, and other
services for helping persons with disabilities return to work and live more independently.
Medical services that provide primary medical care for HIV-positive individuals including
testing, case management, and clinical trials of new drugs. These may be in clinics
or hospitals and may specialize in care of adults, women, children or various groups
(e.g. Latino, African American, Asian, substance users).
Mental health services offer mental health and counseling services including counseling
and brief psychotherapy, crisis intervention, substance use assessment and referrals,
pre-and post-antibody test result counseling, family consultations, support groups
and education around coping and problem solving skills, grief and loss, and importance
of early treatment.
Social services ensure that daily assistance and support is available. These services
include such things as child care; deaf, hard-of-hearing, and hearing loss services;
food delivery and food banks; help with grocery shopping; funeral services; home
care and Hospice; housing; insurance benefits counseling, legal and financial counseling;
transportation; women, youth and family resources; and HIV related violence.
These specialized services, if they exist in the rural community, may be dependent
on the client’s insurance. If the client loses his or her job, the insurance often
disappears (Smith, 1990). Many community doctors do not accept MediCal or other public
health insurance. Daily specialized services such as attendant care or meal delivery
is especially difficult for persons who are home bound in remote areas. People with
compromised immune systems need reliably safe drinking water (free of crytosporidium
and giardia, etc.). This could be a difficulty for rural residents who rely on creeks
or springs. Electricity may be necessary to pump the water and in a power outage
water, as well as other medical needs could be compromised.
Qualifying for welfare benefits may be another large hurdle. If regulations are such
that it takes a very long time for the client to receive their first disability check,
they may not be able to afford the medications they need to prolong their life or
they may die before receiving their disability benefits. (Smith, 1990)
In less tolerant communities, persons who are HIV+ may not be considered “deserving”
of these social services. While the high incidence of HIV disease has historically
been linked to gay men, in fact there is a disproportionate incidence of HIV disease
among African American and Hispanic people, 6 times and 3 times higher respectively
(CDC, 1994).
INTERVENTIONS
In most small towns there is no “sense of gay community.” (Smith, 1990). Gay/lesbian
medical professionals often fear their “secret” will be known to the community if
they specialize in care of HIV-infected clients. Lawyers and dentists may have this
same worry. Funeral services may be limited by fear of HIV disease. In urban areas
such as New York or San Francisco, many specialized social services such as food,
transportation, bereavement groups, and legal services were organized through volunteer
efforts in the gay community. Formation of coalitions and consortia may be useful
when applying for funds for AIDS services, especially since the numbers of consumers
served will be larger.
The coalitions should represent all current and potential AIDS service organizations
such as hospitals, health departments, churches, public schools, colleges and universities.
In addition the coalitions should be representative of the populations served such
as gay/bisexual/lesbian, IV drug users, recovering substance users and leaders of
various cultural/ethnic communities (Smith, 1990). Representation of and leadership
by persons living with HIV and their family members is vitally important.
The American Red Cross may be a neutral enough organization to start to organize
concerned families and citizens and offers a complete HIV/AIDS education training
package for use by employers and other interested community agencies. Rural churches
serving the African American and Hispanic communities are potentially important allies
where there is no centralized HIV/AIDS service delivery. These local religious groups
can collaborate with professionals in existing systems. However, the useful potential
of these churches may be wiped out by the fear of the disease leading to judgment,
prejudice, and apathy (Tartaglia, 1966). There is currently very little evidence
of cross referrals between clergy and both mental and medical health professionals.
Both clergy and health care personnel can step toward each other by sharing their
strengths and unique perspectives through discussion groups and case conferences
(Tartaglia, 1996).
The Rural AIDS network (RAN) provides collaboration between health care providers,
service provider, and people living with AIDS/HIV infection. RAN focuses on the unique
strengths and resources of existing rural service providers and the interrelationships
possible among them. RAN also publishes a service providers newsletter. Rural AIDS
Network and be reached through its national office: Rural AIDS Network, 2267 15th
Street, San Francisco, CA. 94114, (415) 721-0694. (Smith, 1990)
Face-to-face support groups for those living with HIV/AIDS is a way of providing
instrumental support. The most important ingredient for preparing the community is
education about HIV disease, its course, transmission, prevention, substance abuse,
and the dissemination of this information to the community.
Exercise (Case Study)
• Presenter asks participants to read through Part 5 of the case study while presenter
reads it aloud.
Part 5: Imagine that you are this same 24 year old gay male. Up until your diagnosis
of AIDS, you were working in a restaurant. At this point in your HIV/AIDS disease
the only way you know how to cope is using alcohol and drugs. You figure since there
is only 6 months to live, you will quit your job and party a lot. What are the consequences
to you and others using alcohol and drugs as a coping mechanism? What resources are
you aware of now in your community that would be helpful to you now to cope in a
healthier way?
• Discuss in triad and presenter use markers to briefly write down major feelings.
NONSUPPORTIVE WORK ENVIRONMENTS
• Fear of losing their job or their health or life insurance benefits keeps rural
clients from telling their employers their HIV status.
• Clients may not be able to risk the discrimination that would result if their co-workers
suspected they were infected with HIV. Anti -discrimination policies in rural areas
may not exist or be enforced if they do exist.
• The harm to the client is that they may not seek early treatment of HIV which could
keep they asymptomatic longer or restore their functioning after a flare up of an
opportunistic illness.
INTERVENTIONS
According to Heckman (1996), consumers living with HIV/AIDS need to be educated about
their employee rights to retain their medical benefits, keep their medical condition
confidential, and ask for ADA accommodation for their disability. In addition, employers
of persons living with HIV/AIDS need to be educated about their legal obligations
for providing a supportive and responsive work environment. There are videotapes
available such as “AIDS in the Workplace”, and other written or televised information
that would be useful to employers. In addition, where there are already established
employees assistance programs (EAP), and HIV/AIDS component should be added on.
Exercise (Case Study)
Presenter asks participants to read through Part 6 of the case study while presenter
reads it aloud.
Part 6: Imagine now that you are a 35 year old Latina working as a director of a
Catholic children’s day care for migratory workers. You have been married 17 years
to the same man and have three teenage children. You are the main support of your
family because your husband works in construction and his jobs are occasional. For
quite some time you have been suffering with various odd symptoms, the worst of which
is now severe vaginal candidiasis and thrush. Your doctor keeps treating the symptoms
but has never recommended an HIV test. Your sister lives in San Francisco and you
decide to visit her during a vacation. She has had some suspicions about your husband’s
drug use, and recommends you get an HIV test in San Francisco The test is positive
for HIV. As you are driving back to your home town you have many questions. Where
can you go for help? Does your husband know he is HIV+? What will happen to your
children? What if your employers find out about your disease? If there were a support
group, you feel you couldn’t use it anyway. The only thing you can think of to do
is to keep this information a big secret from everyone including all of your family.
How do you feel?
• Discuss in triad and presenter use markers to briefly write down major feelings.
SHORTAGE OF PSYCHOLOGISTS, SOCIAL WORKERS, AND MENTAL HEALTH COUNSELORS
• Apparent “low prevalence” of HIV disease in rural areas often leads to under funding
of adjunct services. Both medical and mental health professionals need to prepare
to provide support for patients who are grieving multiple losses including potential
or actual job loss, loss of home, family, friends, and social network through migration,
discrimination, and death.
• These professionals are needed to prepare families and community members to accept,
educate, and provide care for HIV infected people in their homes and communities.
(Davis, 1992).
LACK OF EMPLOYMENT OPPORTUNITIES
• Very few employers will hire anyone who is obviously sick.
• The shortage of jobs in rural areas make it difficult to even begin to let an employer
know that you may have to take off days at a time to seek medical help. Jobs with
benefits may even more difficult to find or maintain.
LACK OF HIV/AIDS KNOWLEDGE AMONG RURAL CITIZENS
Organized public health HIV prevention and education efforts have not been well established
in rural areas. This includes the following:
• Specific education around transmission so that any one from a doctor or nurse to
a restaurant or farm worker would know which situations need precautions (e.g. contact
with any bodily fluids) and which don’t (e.g. handshaking).
• Education aimed at all age groups and socio-economic levels.
• Education that is direct and frank on issues of prevention and risk reduction.
(Smith, 1990).
• Education aimed at specifically targeted community groups through churches, youth
organizations, schools, parent groups, news media, local radio shows, county fairs,
etc.
LESS TOLERANCE OF DIVERSITY
• Rural residents value the role of religion and the church, display more conservative
values, and expect themselves and others to adhere to community norms.
• Anyone who exhibits any “alternative” behavior is easily labeled and can become
scapegoated, stigmatized, and disenfranchised. The populations most disenfranchised
are homosexuals, bisexuals, lesbians, substance users, people of color, and women.
• Lack of tolerance could be experienced as rejection of persons suspected or known
to be HIV infected, to name calling, to breaches of confidentiality, to evictions,
job loss, to violence in the form of harassment, threats, vandalism, arson of homes
or businesses
REFERENCES
Bozovich, A., Cianelli, L., Wagner, L., Chrash, M., & Mallory, G. (1992). “Assessing
Community Resources for Rural PWA’s,” AIDS PATIENT CARE. October. pp 229 - 231.
Centers for Disease control and Prevention. (1994). HIV/AIDS surveillance report,
6(2), 1 - 39.
Davis, K.A., Cameron, B., & Stapleton, J.T., (1992). “The Impact of Patient Migration
to Rural Areas,” AIDS PATIENT CARE. October. pp 225 - 228.
Heckman, T.G., Somlai, A.M., Kelly, J.A., Stevenson, L.Y., & Galdabini, K. (1996).
“Reducing Barriers to Care and Improving Quality of Life for Rural Persons with HIV.”
AIDS PATIENT CARE and STD’s. February, pp 37-43.
Tartaglia, A. (1996). “AIDS and the Rural Church.” FOCUS; A Guide to AIDS Research
and Counseling. Vol. 11, No. 4, March, pp. 5-6.
San Francisco AIDS Foundation, (1994). San Francisco HIV Resource Guide. San Francisco
AIDS Foundation, 25 Van Ness Avenue, San Francisco, C. (For five or fewer copies
of the guide, call 415-863-AIDS for free copies. For-profit institutions, and non-profit
organizations needing six or more copies, should contact IMPACT AIDS to order copies
for a small fee (415-861-3397) Note: IMPACT AIDS also has many educational brochures
and books about all aspects of HIV/AIDS.
Smith, J.E., Landau, J., & Bahr, R. (1990). “AIDS in Rural and Small Town America;
Making the Heartland Respond,” AIDS PATIENT CARE. June. pp. 17 - 21.
Shernoff, M. (1996). “Returning with AIDS: Supporting Rural Emigrants.” FOCUS; A
Guide to AIDS Research and Counseling. Vol. 11, No. 4, March, pp. 1-4.