Gay Men With AIDS in Rural America
AbstractSome gay men spend their entire lives living in small towns or rural areas. Many more grow up there and emigrate to large cities, with some returning to the communities they grew up in when they become symptomatic with AIDS. Gay men living in rural areas face different obstacles than those living in large urban centers with well defined gay communities. When a rural gay man comes down with HIV or AIDS his problems in gaining access to needed medical and social services is even greater than his urban counterpart. This article details the difficulties encountered by rural gay men living with HIV/AIDS. It reviews some of the research on rural individuals living with HIV and discusses how this pertains to gay men in particular. In addition, some suggestions for meeting the social service needs of this population are offered.
Epidemiologic research demonstrates that there are increasing numbers of people living with HIV and AIDS in rural America (Gardner et al., 1989; Lam & Liu, 1994). The Centers for Disease Control and Prevention reported that through December, 1994, non-metropolitan areas of the U.S. contained more than 22,800 cases of full blown AIDS (CDC, 1994). As Heckman et al. (1996a) noted:
"The growing incidence of AIDS and new HIV cases has led to the realization that many rural communities are inadequately prepared to address many of the problems associated with HIV/AIDS including increasing numbers of openly gay men returning to the communities where they grew up. For example, the escalating number of HIV/AIDS cases has resulted in increased demands on rural health care facilities, many of which were financially unstable even before the emergence of AIDS ... because many rural communities have not encountered large numbers of persons living with AIDS, little consideration has been given to establishing sources of social support for individuals and families affected by HIV/AIDS, and organized public health HIV prevention efforts are essentially nonexistent in rural areas. Finally as HIV/AIDS becomes more prevalent in rural communities, the stigma and prejudice associated with the disease continues to grow in rural America." (p.37 )
This article details the difficulties encountered by rural gay men living with HIV/AIDS. It reviews some of the research on rural individuals living with HIV and discusses how this pertains to gay men in particular. In addition, some suggestions for meeting the social service needs of this population are offered. People with AIDS in rural America generally fall into one of two groups. They either have been born, grown up and remained living in rural areas for the majority of their lives, or they have emigrated to the big cities in order to escape small towns, but following their diagnosis of AIDS, return home to live out their final days. Both groups include gay identified men, as well as men who do not identify as gay but who regularly have sex with other men.
As Gunter (1988) noted "almost nothing is known about the lives of rural lesbians and gay men and the barriers they encounter when in need of social services."(p.49) Similarly little is known about how people living with HIV and AIDS in rural areas fare in terms of medical and psychosocial care. Heckman (1996a) stated that "very few, if any, studies have examined strategies that might improve quality of life for rural persons with HIV/AIDS who live with their family, relatives or a significant other." (p. 37) The myriad biopsychosocial issues involved in caring for people living with HIV and AIDS, their families and other loved ones is described in My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (Verghese, 1994). Verghese depicted treating a variety of people with HIV and AIDS in a small town in the center of the bible belt, on the Tennessee West Virginia border.
Moses and Buckner (1980) identified clients' isolation and fear of discovery as gay or lesbian as major obstacles facing rural lesbians and gay men in need of social services. They elaborated upon specific issues that professionals need to consider when providing services to this population including: clients' misconceptions and attitudes; lack of resources and information systems; limited options and alternatives and the need for the worker to realistically assess the situation. The author's experience in working with clients who left New York City to return to rural parts of the country in the later stages of AIDS, and research conducted by Heckman and his colleagues (1996a, 1996b) confirmed that the same issues hold true for people with HIV/AIDS, their families and care givers in nonurban parts of the United States in 1996. Heckman et al. (1996a) noted that "several barriers to life-care services impacting rural persons with HIV/AIDS include 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." (p. 37 )
Gunter (1988) delineated problems complicating service delivery to rural gay men and lesbians. These problems often prevent people living with HIV/AIDS from receiving effective services. According to Gunter "a major problem lies with the method of delivery when providers insist on utilizing traditional service models based on an individuals's ability to access the service. It is fairly evident that this method has been ineffective with the elderly in rural areas in terms of the delivery of health services and social services." (p. 50) She went on to say that providers need to do more than just modify urban interventions or treatment approaches because it cannot be assumed that individuals have a choice as to available service systems. Thus people with HIV/AIDS living in a rural environment must face the traditional rural problems associated with the unavailability of services, lack of transportation, lack of information and resources, and lack of responsive educational, health care, and social service systems. Gunter also explained "when these resources are needed, the lack of them is compounded by the reality that rural areas are more conservative, ingrown, traditional, religious and less tolerant of diversity." (p.50)
Given these barriers, addressing the needs of rural gay men with HIV/AIDS, their families and
significant others becomes more than just adapting urban models of services to a rural setting.
Rural people living with HIV/AIDS face the same barriers to receiving services that affect all rural
lesbians and gays. First and foremost is the lack of access to informational systems that would aid
them in securing necessary supports and services. A major difficulty is the reluctance of many gay
people and people with HIV/AIDS to utilize what services are available because of two concerns:
the issue of confidentiality and the lack of trustworthy professional providers to whom an
individual can go for sensitive and competent help.
Confidentiality and Social SupportGunter (1988) cautioned that "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." (p.50) Gunter also stated that in rural communities due to funding problems, many agencies utilize paraprofessionals and volunteers as staff members. In these agencies there is a legitimate fear on the part of the individual seeking services that he/she may be disclosed by these paraprofessionals to others both within the agency and to community members. "For some reason, paraprofessionals, volunteers and nonprofessional workers in rural communities appear not to feel bound by the rules of confidentiality." (Gunter, 1988, p. 51) In tight knit nonurban communities entire families may be stigmatized by having a member with HIV/AIDS, effectively depriving them of much needed support during their time of crisis. Heckman and colleagues (1996b) found that discrimination and prejudice among community members does not only affect the HIV infected or AIDS diagnosed individual. One participant in their study described how a family had difficulty arranging a funeral for a son who had died of AIDS, because the church pastor refused to bury their child.
Heckman et al. (1996b) reported that rural clients with HIV/AIDS have great difficulty gaining access to social support. One study participant indicated that "in addition to the person living with HIV/AIDS lacking a similar other to confide in, community residents often believe that persons living with AIDS should move away to the city, thus removing the problem of AIDS from their rural community. This apathy and resistance among community members greatly impeded clients' efforts to obtain social and emotional support, exacerbating the problems of loneliness and isolation."
Gunter (1988) explained that in rural areas there are informal systems that in many cases, actually provide many of the social services for individuals or families. Crisis intervention, child-care, emotional and financial support and in-home health care are often provided by these informal networks. When these systems have not broken down due to homophobia or fear of AIDS, they provide the very essence of the quality of care that draws numbers of people with HIV/AIDS to return to the communities in which they were raised. The informal network in rural areas is usually composed of family, friends, neighbors, organizations and religious institutions -- all of which may be denied the openly gay individual and his family who has either self-identified or been involuntarily identified as having HIV/AIDS.
Heckman et al. (1996b) documented that unlike many of their urban counterparts, rural persons
living with AIDS rarely have close friends to whom they can turn, nor do they have a gay
community in which they can seek support and social companionship. Their research found that
in many small towns, there is only one person in the immediate area who is living with AIDS.
One of the participants in their study noted, "a person with AIDS in a rural area can't talk to just
anyone about their [sic] condition, because if the wrong people find out you're infected, your life
will be more hell than it already is."
Health Care for Persons with HIV/AIDS in Rural AmericaHeckman (1996a) identified long distances to medical facilities and personnel as a major barrier to care for rural persons living with HIV/AIDS. Verghese (1994) recounted that in the community in which he was practicing colleagues were reluctant to accept referrals of patients with HIV/AIDS. Within the hospital, nurses and support staff were often unwilling to provide basic services out of fear or moral judgement regarding how people contracted the disease. Many rural health care professionals decline to provide direct care to people with AIDS because they do not feel adequately educated in the area of AIDS treatment ( Lockman-Samkowiak, 1994), while others are concerned that current and potentially new patients will be scared off because he or she treats people living with AIDS (Berry et al., 1995). Heckman (1996a) reported that most rural states are unlikely to have the experience or financial or logistical preparations for the growing number of rural AIDS cases. In the same article these authors noted that several states have recognized these deficits and are currently evaluating a model that links rural satellite health care clinics with urban facilities. In this model, physicians experienced in AIDS diagnosis and treatment, most of whom practice in urban settings, periodically visit satellite clinics to train and consult with local physicians. As a result, local residents living with HIV/AIDS receive care close to their place of residence and physicians in the region receive information and hands-on training they otherwise would not receive. Heckman (1996b) also explained that the problem of health care service accessibility is not due exclusively to a shortage of health care professionals in rural areas, but also to the lack of personal and public transportation in rural areas. They found that it was common for rural persons living with AIDS to not have a valid driver's license. As they concluded "these factors, taken together, greatly complicate efforts to access health and social services."
Heckman's research (1996b), documented that the prevalence of dual diagnoses in rural areas was problematic, and that many rural clients in addition to having a diagnosis of HIV/AIDS, were living with a substance abuse or mental health problem. The participants in this study reported that conflicting economic priorities made it increasingly difficult to provide adequate treatment to clients with a dual diagnosis because there was a scarcity of resources for long term alcohol or drug addiction counseling.
One attempt to address the needs of rural people living with HIV/AIDS and their caregivers was
the National Rural AIDS Conference, first held in early 1995 in St. Cloud, Minnesota, and now
held annually. Heckman and his colleagues surveyed 57 attendees of this conference to identify
barriers to care for rural persons living with AIDS and strategies that may improve their quality of
life (1996b). In a study conducted through telephone interviews with key informants in all of a
midwestern state's AIDS service organizations Heckman and colleagues (1996b) identified the
following circumstances confronting persons living with HIV/AIDS in rural areas: increased
isolation and loneliness; difficulty gaining access to health care services; and increased community perceptions of hatred and prejudice. These researchers documented quality of life improvement programs being implemented in rural areas by community-based organizations. These organizations ensure that close relationships are maintained among case managers and clients, conduct emotional and social support groups for persons living with HIV/AIDS, and facilitate
client access to complementary therapies (Heckman et al 1996b).
Preparing to Move from a City to Rural AmericaIn the author's practice in the past four years, three psychotherapy patients returned to rural communities in the final phase of HIV illness. Conversations with eleven colleagues with large numbers of persons with HIV/AIDS in their psychotherapy practices in seven different large cities revealed that all but one had patients with advanced AIDS return to small towns or rural areas near the end of their lives. There is a growing need for health care professionals and community leaders in rural areas to become trained in meeting the biopsychosocial needs of individuals and families affected by AIDS who are already living in their communities, and who will continue to return to the communities where their families live.
When a gay man who had chosen to leave a rural area to live in a large city decides to return because he has HIV/AIDS, most often he is returning to a family and/or community who will negatively judge his life style. Thus for all of the reasons mentioned above, this is not a decision that is made casually or impulsively. Mental health professionals need to be prepared to help a client assess the cost benefit ratio of moving from a city to a rural area. In addition to the psychotherapeutic and counseling issues that must be addressed, the therapist should identify and locate any available local resources and adequate health care services prior to the client's departure. When a client currently is receiving home infusion services this may help the therapist to identify local resources, because the home nursing company often knows of a local affiliate near to the client's new location. The local office of the nursing company will most likely be able to provide a referral to the local physician or health care facility that is skilled in serving people with AIDS.
In addition to taking on this case management role, the therapist or counselor must begin a thorough exploration of the emotional issues surrounding leaving and how these will affect the client. This is often terribly difficult for both the client and therapist because much of the work will involve discussions of multiple losses, and feeling powerless to control one's life. Therapists must be alert to understandable countertransference regarding feelings about losing the client due to the move prior to his impending death. During these sessions the therapist needs to explore whether the client will desire to continue contact or even regular sessions with the therapist via telephone. For some, this telephone contact will be the only remaining connection with their former life. In addition to the emotional support such ongoing phone contact can provide, it often is a useful resource for practical problem solving.
In almost all cases, individuals who make the decision to return to a rural community feel that they no longer have any other option for maintaining a reasonable quality of life and for being adequately taken care of if they remain living in their present circumstances. This recognition often is accompanied by intense anger and sadness. Both the final face-to-face therapy sessions as well as subsequent telephone sessions can be critical for helping the client to manage these feelings. Some of the individuals who return to small towns are the last surviving member of an entire friendship network that has been devastated by AIDS, and there is simply no one left other than paid attendants to care for him in this crucial time of his life. When an individual does not have large financial resources, or entitlements that will provide him with care, there literally may be no one upon whom he can depend for assistance in shopping, cooking, cleaning and transporting him to and from medical appointments.
In therapy sessions prior to returning to live with family members, some clients have reported feeling like a failure since they do not see any other option besides returning to their families. In these cases, in addition to the ordinary anger about having AIDS and all the accompanying losses, there is the anger of feeling trapped into needing to return home to parents with whom there may be at best an ambivalent relationship. Some people have discussed feeling as if returning home to their parent's house to die somehow invalidates their lives as grown ups who lived a self-actualized gay life. As one patient who had nursed his lover and best friends through their illnesses put it, "I can't help but feel that if somehow I had done something, don't ask me what, differently I wouldn't now be facing the prospect that the only place I have to go to die is my parent's home. It makes me feel like my life was a failure," he said sobbing on the eve of his departure for rural Oklahoma.
In cases where families have accepted a son's homosexuality and AIDS diagnosis, returning to one's family of origin provides the opportunity for final familial reconciliation and healing of old wounds. Even when this is the case, many patients express fears of being infantilized by their parents because they are critically ill, in need of a great deal of assistance, and are returning to live in their parents' home. It is a difficult balance for parents to maintain in terms of respecting the adulthood and autonomy of an adult child who is in reality once again physically, emotionally and possibly financially dependent upon mom and dad. One way of trying to deal with this prior to the client's returning home is by offering to have telephone conference calls with the client, his or her family, and the therapist to address some of these issues before the person with AIDS arrives. These family conference calls can also help begin to prepare the family for the practical and emotional realities and demands of caring for a loved one with AIDS who is returning home to live out his or her final days. Once the family member has returned home, these telephone sessions may be the only source of support for the person with AIDS as well as his or her family.
During these sessions, possible local avenues of support for both the family and client can be
explored that might have been over looked. The parents of one client who was planning to return
to rural Georgia had not told anyone about their son's diagnosis. In a telephone session with the
mother and client before he left New York, the therapist suggested that the mother consider
sharing the reasons for her son's impending return with her husband's parents who lived nearby,
and with her minister who she had reported was "pretty liberal." During the final telephone session before the client's departure, she joyously reported that she was at last confident of her ability to manage whatever lay ahead. Her in-laws were shocked, and devastated, but totally supportive and offered to do everything they could to help. The minister was also kind and solicitous and preached a sermon the following Sunday about the need for Christian compassion for all people with AIDS. He assured her of his continuing availability to their entire family as a friend, pastoral counselor and spiritual advisor. As a result, the parents felt emotionally prepared for the burdens ahead. In addition, this phone call reassured the client of a welcoming
environment, thus decreasing his fears about returning to rural Georgia.
Maintaining SupportSometimes these telephone sessions help the family activate local support in response to a crisis. During a medical emergency the local hospital had refused to treat the client described above, and after giving him a portable oxygen tank, sent him to a hospital an hour's drive away. The mother telephoned the therapist in New York enraged and frightened. At the therapist's urging, she confided the incident to her minister, who upon hearing it immediately called another parishioner who was the CEO of the offending hospital and without revealing the name of the family involved, reported what had happened. Two days later, the CEO told the minister that the doctors and nurses had felt unprepared to treat a person with AIDS. Upon hearing this the minister asked if there had been any mandatory inservice trainings on medical management of people with HIV /AIDS for the hospital staff. The administrator acknowledged that there had not been any. The minister strongly suggested that the administrator gather his department heads and insist that trainings be offered to each staff person in the hospital to avoid a recurrence of the kind of incident that had brought this to both of their attention. As a result, the local hospital began trainings by outside experts in caring for people with HIV/AIDS.
Some families may use the return of their son as a way of blackmailing him into repenting for a life they think of as sinful. They may extort promises of becoming born again in return for a place to be taken care of and die. In these situations the son's feelings of guilt, unresolved internalized homophobia, worthlessness, and powerless are triggered as is his rage at needing to submit to his family's demands. Another man who returned to the same small town in rural Georgia from Manhattan as the client described above, expressed his feelings in the following manner.
"Originally I thought that I was returning to my parents' home so I could die with dignity. Sure, I'll have a physically comfortable place to live and people who will take care of me, but at what cost to my self-respect and integrity? 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 fifteen years! How ironic that my parents really believe that they are offering me the finest Christian charity by allowing me to return to their home, but only if I agree to all of their conditions."
Heckman's study (1996a) found that face-to-face support groups for rural people with AIDS were a crucial element to improving their quality of life, and "while establishing and maintaining such groups in rural areas is not always easy, persons interested in joining or establishing a face-to-face support group for those affected by HIV/AIDS, the local rural AIDS action network (RAAN) or Red Cross agency is a logical place to begin." (p. 42) For people living with HIV/AIDS in remote rural areas who are geographically isolated, Rounds et al. (1991) suggested that telephone-linked support groups can be used to network people with AIDS to others who are unable to travel to a group meeting.
An additional resource are the AIDS and gay/lesbian chat rooms on the Internet. This is a way that isolated rural gay men can maintain contact with other people around the country and perhaps even discover other gay people or people with HIV/AIDS who live nearby with whom they can develop friendships and mutual support systems.
As Tartaglia (1996) stated, local religious communities are potentially important allies in the effort of creating collaboration among professionals and the existing natural support systems for rural people living with HIV and AIDS, because they are historically and functionally among the most influential of rural institutions. To support people with HIV and publicly to be identified as
sympathetic to this issue, clergy can implement educational and service-related interventions for
the community, the congregation, and families. Tartaglia also suggested that "clergy are in a
unique position to know the private struggles of individuals and families who may secretly carry
the burden of HIV disease or having gay children. They can, with permission, connect
congregants who live in isolation and who experience fear, guilt and grief." (p. 6) Having a
traditionally hostile or at best nonsupportive institution like a church actively function as an
extended family for a gay man with AIDS can have enormous healing and redemptive powers for
the individual approaching the end of his life.
ConclusionResearch confirms that both people living with HIV/AIDS and those who care for them in rural America find that life is more difficult for a variety of reasons than for those living with HIV/AIDS in large urban centers. This is especially true if the person with HIV/AIDS is a gay man. Yet despite this, the numbers of gay men with HIV/AIDS in nonurban parts of the United States continue to increase and show no indication of abating. In the second decade of the AIDS epidemic there are finally rudimentary services in place to help care for them, yet local communities are overwhelmingly ill prepared to serve this population, and remain generally apathetic and even hostile towards those affected by the disease.
Several additional areas of research seem fertile for exploration by social scientists and graduate students of public health, social work and psychology. Some suggested areas for research are: What are the demographics of people living with HIV/AIDS in different parts of rural America, and is there any discernable difference in the prevalence of racial and sexual orientation breakdown of people living with HIV/AIDS in different parts of the rural United States? A study of rural churches in different parts of the country could attempt to ascertain how many have actually had a parishioner disclose that he or she had HIV/AIDS, and what was the response of the minister and congregation. Is there any difference in levels of support by black and white rural churches, and is there any difference in the amount of support based on the route of HIV infection? How many local rural health departments, Red Cross, and other social service agencies have already developed needed medical and social services for people living with HIV/AIDS? Were these efforts in response to an influx of cases of HIV/AIDS, or prior to the emergence of identified cases in that particular locale? Similarly, how many rural medical institutions and social service agencies have actually begun to implement staff and community education programs about HIV/AIDS? Where training programs have been offered, is there a component on cultural diversity that includes ways to minimize the heterocentric bias of service providers who will come in contact with gay male clients? When clients with HIV/AIDS reported community antagonism or hostility towards them or their families, what role did clergy, medical and social service professionals play in attempting to ameliorate these prejudices? Research into any of the above topics is likely to shed light on the social service needs of gay men with AIDS in rural America.
Urban mental health professionals who work with gay men with HIV/AIDS who are thinking of
returning to rural areas or small towns need to be prepared to aid these individuals in a variety of
ways. Assistance in locating local health care and social service resources in or near the locations
to which clients will be moving is paramount. It is a task that the person with AIDS may not have
the energy or cognitive ability to accomplish and yet it can be a crucial first step in preparing for
this all important move. Social workers, psychologists, and counselors can help locate existing
social supports and make themselves available to continue either sporadic or regular contact with
the client and his family as seems necessary and appropriate. Prior to the individual's departure
issues pertaining to the move and feelings resulting form the circumstances that made such a
decision inevitable need to be thoroughly explored, including attempts to work through long term
family dynamics that may never previously have been resolved. By insuring that all of these pieces are in place, AIDS health care professionals and volunteers are doing everything possible to help the gay man living with AIDS make this inevitably trying and difficult transition as smooth and
painless as possible.
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© 1996 Michael Shernoff
Permission is granted to copy or reproduce this article either in full or in part, without prior written authorization of the author on the sole condition that the author is credited and notified of reproduction.
It is a part of the publication The Journal of Gay and Lesbian Social Services.