Subject: RURAL AIDS article
From: [email-masked]
Date: Wed, 20 Mar 1996 17:47:10 -0500

Attached is a recent article I authored on gay men with AIDs returning to
rural America.

Could youplease post this in the AIDS resource library and anywhere else you
feel appropriate?

Thanks alot
[email-masked]

        Returning with AIDS: Supporting Rural Emigrants
                     Michael Shernoff, MSW
                          Published in
 FOCUS: A GUIDE TO AIDS RESEARCH AND COUNSELING, V.11, No.4 March 96
                                
The majority of the 22,800 people with AIDS who live outside of urban areas in the
United States are men who have sex with men, some of whom identify as gay, although there are
increasing numbers of people who have contracted HIV in other ways.1,2 Many of these men are
emigrants returning from urban lives to their rural families of origin. 
An informal survey of 12 therapists who work with large numbers of people with HIV
disease in seven cities in different parts of the U.S. revealed that all but one have treated gay men who
returned to small towns or rural areas near the end of their lives. But most rural communities,
cocooned from the epidemic thus far, have had little chance to develop social services for people with
HIV disease and their families, and as prevalence increases, HIV-related stigma is on the rise.3 This
article details the research on this topic and suggests approaches for urban providers with clients
returning to rural homes.
Barriers
There is little research on HIV-related services in rural areas. Among the barriers to
care cited in a 1996 study are the lack of adequately trained medical specialists; geographical
distances and isolation from sources of social support; insufficient or unreliable sources of
transportation; and the lack of a cohesive support community for infected gay men and women.4
Additional barriers include the lack of information and resources and responsive educational, health
care, and social service systems, and according to another study of services for gay men, the fact that
rural communities "are more conservative, ingrown, traditional, religious and less tolerant of
diversity."5 Finally, long distances to medical facilities and the reluctance of medical personnel to
provide HIV-related services are significant barriers to care in rural areas.3,4,6 (Several researchers
are evaluating a model linking rural satellite health care clinics with urban facilities, whereby
physicians experienced in HIV-related treatment would train and consult with local providers. 3
Confidentiality is a particularly troublesome barrier to care in rural areas. Patricia
Gunter states: "Confidentiality is a difficult issue within the rural environment. Because of the limited
geographic boundaries and 'incestuous' nature of the systems, personal associations, work and leisure
time activities, and work patterns are usually well-known to all in the community. The high level of
visibility places the individual in jeopardy, particularly when receiving health and welfare services."5
Gunter also states that due to funding problems in rural communities, many agencies use
paraprofessionals and volunteers as staff members and that, "For some reason,
paraprofessionals,volunteers and nonprofessional workers in rural communities appear not to feel
bound by the rules of confidentiality." In tight-knit rural communities, entire families may be
stigmatized by association to an HIV-infected family member, effectively depriving people with HIV
disease of much needed support.4
Ironically, people with HIV disease and their families have been able to access a
variety of social services through informal systems already functioning in rural areas. Comprised of
family, friends, neighbors, fraternal and civic organizations, and religious institutions, these systems
deliver services ranging from crisis intervention, child care, and emotional and financial support, to in
home health care. When these informal systems resist homophobia and fear of AIDS, they can provide
a type of care that draws numbers of people with HIV disease to return to the communities in which
they were raised. Addressing rural HIV disease requires strengthening and supplementing these
informal networks as well as formalizing HIV-specific services. 

Moving from Urban to Rural America 
It is never too early for people with HIV disease to begin considering contingency
plans for living with a progressive and debilitating illness. As illness progresses, therapists should seek
appropriate moments to ask clients to discuss the plans they are considering to ensure their care.
Urging clients to face this issue early on can help avoid future crises. 
When clients raise the possibility of returning to live with parents, it is generally a
good idea to thoroughly explore other options, for example, an assisted living residence for people with
HIV disease or the home of a friend or family member living in the city. Considering these options is
especially important if the client expresses any ambivalence about moving to his or her parent's home.
If finances are the major factor in deciding to move, the therapist should explore with the client what
resources may be available. Some affluent families might actually prefer to financially subsidize a gay
son with AIDS living far away from their home town, to having him move back and with his illness
and how he contracted the illnes sources of local gossip. A resource for people with AIDS who have
been a theater professional is the Actor's Fund of America's AIDS Initiative Program which offers
financial assistance to people with AIDS living anywhere in the country.
Clients should also consider whether their new home is appropriate for a disabled
person. Is it well-heated? Is it accessible? Is it served by home health care agencies and an AIDS
service organization? Do they drive, and will there be a car available for their use? How do local
entitlements and other benefits compare to current ones? Are there competent health and mental health
care providers in reasonable proximity? Answers to these questions will clarify for the client the
benefits and drawbacks of his or her future home. They will also suggest actions the client and his or
her family might take prior to the move. 
In almost all cases, individuals who decide to return to a rural community feel that
they no longer have any other option for maintaining a reasonable quality of life and adequate care.
This recognition is often accompanied by intense anger and sadness; therapy can be critical for helping
the client manage these feelings. Some individuals who return to small towns are the last surviving
members of an entire friendship network devastated by AIDS, and there is simply no one left other
than paid attendants to care for them. When an individual does not have large financial resources or
government entitlements to maintain care, there may literally be no one who can provide practical
support and transportation. 
Once a client decides to return, the central therapeutic objective is to help him or her
explore emotional responses to leaving. This process is likely to be difficult for both the client and
therapist as they confront a history of multiple loss and loss of control. Therapists must be alert to
understandable countertransference feelings about prematurely losing the client not only to death but
also to the move. 
When a family has accepted a son's homosexuality and AIDS diagnosis, returning
provides the opportunity for final familial reconciliation and healing of old wounds. Even when this is
the case, many clients express fears of being infantalized by their parents since they are critically ill, in
need of a great deal of assistance, and are returning to live in their parents' home. For parents, it may
be difficult to respect the adulthood and autonomy of a grown child who is in reality once again
physically, emotionally, and possibly financially dependent. In such situations, the lack of alternatives
to returning to the family of origin may leave some clients feeling as if their lives were bankrupt. In
addition to the ordinary anger about having AIDS and weathering loss, the client may feel anger about
being trapped into returning home to parents with whom he or she may an ambivalent relationship. For
some, the return invalidates their lives as adults who have lived an unapologetic and openly gay life.

Maintaining Contact and Providing Support
It may be useful, prior to the return, to arrange telephone conference calls that will
include the client, his or her family, and the therapist to raise and address some of these issues. These
calls can also help to prepare the family for the practical and emotional realities of caring for a loved
one in the final stages of HIV disease. Once the client has returned home, these telephone sessions can
continue and may remain the only source of emotional support for the client and the family. 
One case exemplifies the usefulness of telephone contact for both emotional and
practical support: "John Miller" (not his real name), a 31-year-old gay man, decided to return to his
parent's home in rural Georgia three months before he died. He and his therapist decided to maintain
telephone contact during this process. Mr. and Mrs. Miller had not told anyone about their son's
diagnosis. In a telephone session with John and Mrs. Miller before John left New York, the therapist
suggested that Mrs. Miller prepare a support system by telling her husband's parents and her minister
about John's illness and imminent return. Two weeks later, Mrs. Miller joyously reported that these
contacts had gone well and were crucial in her feeling confident of her ability to manage what ever lay
ahead. Mrs. Miller's in-laws had been shocked and devastated, but offered to do everything they could
to help. Mrs. Miller's minister was solicitous and had preached a sermon the following Sunday about
the need for Christian compassion for all people with AIDS. He assured Mrs. Miller of his continuing
availability as a friend, pastoral counselor, and spiritual advisor. These telephone sessions, in turn,
reassured John of a welcoming environment, decreasing his fears about moving back to south Georgia. 
               Telephone contact may also maintain the counseling relationship between
therapist and client, providing both individual emotional support and practical problem-solving help.
This may be particularly important when families are not as welcoming as the Millers were. In another
case, "Paul Johnson" (not his real name) returned to his fundamentalist Christian family for care.
Paul's family had used his return as a way of blackmailing Paul into repenting for a life they
characterized as sinful and seeking promises from him to become born again in return for care. In this
situation, Paul experienced feelings of guilt, internalized homophobia, worthlessness, powerlessness,
and rage. 
Before he left, Paul expressed his feelings in the following way: "Originally I thought I
was returning to my parents home so I could die with dignity. [But now] I really have to wrestle with
the question: is the physical comfort worth the emotional toll it will take on my self-esteem to pretend
that I regret having lived the life that was so meaningful and joyous for 15 years?" 
Due to the intrusive and controlling nature of Paul's family, he scheduled telephone
sessions with his therapist only when he knew for certain that he would be alone in the house. The
sessions initially centered on validating his rage. Sometimes, Paul believed that he needed to recognize
his family's pressure as an expression of love and concern. But Paul's therapist reminded Paul that
unconditional love means accepting a person as he or she is and that the Johnsons had never respected
Paul's choices to live his life in accordance with his feelings. Paul also felt badly for causing his
parents so much upset both by being gay and now being dependent upon them. Paul's therapist saw
this as regression, since early on in the therapeutic relationship he would always blame himself for
other people's negative reactions without examining how much of another person's discomfort was due
to their own shortcomings. Eventually Paul came to realize that it was simply too terrifying for him to
tell his family his true feelings about the demands they were placing upon him, out of fear that they
would withdraw their offer of a place to live.
To supplement his weekly telephone therapy, Paul's therapist suggested that Paul
consider the AIDS and gay/lesbian chat rooms on the Internet. Subsequently, Paul had a telephone line
installed. He said the time he spent on the Internet literally saved his sanity and resulted in his meeting
gay men and lesbians and people with AIDS who lived close enough to visit.

Conclusion
Facing the reality that living independently has become unmanageable puts significant
stress on both a person with HIV disease and his or her counselor. The feelings that arise in response
will be intense; the necessity to relocate becomes a metaphor for the myriad losses that HIV disease
forces clients to face. To be of maximum assistance to clients, therapists need to be prepared to be
flexible in terms of the form and role of therapy. Therapists should seek out professional or peer
supervision to help them weather the countertransference feelings that will arise, feelings that may be
as intense as the client's.

References 
1. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report.
1994; 6(2): 8#030#9.
2. Lam NS, Liu K. Spread of AIDS in rural America, 1982#030#1990. Journal of
Acquired Immune Deficiency Syndrome. 1994; 7(#): 485#030#490.
3. Heckman T, Somlai A, Kelly J, et al. Rural persons living with HIV/AIDS:
Reducing barriers to care and improving quality of life. AIDS Patient Care.
In
press.
4. Heckman T, Somlai A, Otto#030#Salaj L. Community#030#based organizations'
perceptions of quality of life among rural people living with HIV/AIDS.
American Journal of Community Psychology. Unpublished manuscript.
5. Gunter P. Rural gay men and lesbians: In need of services and
understanding. In Shernoff M, Scott W, eds. The Sourcebook on Lesbian/Gay
Health Care. 2nd edition. Washington DC: The National Lesbian/Gay Health
Foundation, 1988.

Conferences:
Taking Care of Our Own: HIV/AIDS Care and Prevention in Rural America, October
22-24, 1996.  For information contact Missouri Dept. Of Health, Bureau of STD/HIV Prevention,
POB 570, Jefferson City, Mo 65102, 314-751-6139.

The LIFE Institute offers training for rural AIDS case managers in California.  For
information contact Donna Yutzy, 926 J Street, Suite 522, Sacramento, CA. 95814, 916-444-0424,
(fax: 916-444-3059.

Author
Michael Shernoff, MSW a therapist in New York, is adjunct lecturer at Hunter
College Graduate School of Social Work and is active in the National Social
Work and AIDS Network; is the co#030#editor (with Walt Odets) of The Second
Decade of AIDS: A Mental Health Practice Handbook (Hatherleigh Press, 1995)
and the editor of Counseling Chemically Dependent People With HIV Illness
(Haworth Press, 1991).

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Subject: FOCUS Rural article
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