From: MShernoff@aol.com Date: Wed, 20 Mar 1996 17:47:10 -0500 Subject: RURAL AIDS article 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 MSHERNOFF@AOL.COM 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 are= as 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 Ma= ny 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 m= ost rural communities, cocooned from the epidemic thus far, have had little chance to develop so= cial 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 ur= ban providers with clients returning to rural homes. Barriers There is little research on HIV-related services in rural areas. Among th= e barriers to care cited in a 1996 study are the lack of adequately trained medical spe= cialists; geographical distances and isolation from sources of social support; insufficient or u= nreliable 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 res= ponsive educational, health care, and social service systems, and according to another study of servi= ces 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 reluct= ance of medical personnel to provide HIV-related services are significant barriers to care in rural ar= eas.3,4,6 (Several researchers are evaluating a model linking rural satellite health care clinics with u= rban facilities, whereby physicians experienced in HIV-related treatment would train and consult w= ith local providers. 3 Confidentiality is a particularly troublesome barrier to care in rural ar= eas. Patricia Gunter states: "Confidentiality is a difficult issue within the rural env= ironment. Because of the limited geographic boundaries and 'incestuous' nature of the systems, personal as= sociations, work and leisure time activities, and work patterns are usually well-known to all in the c= ommunity. 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, man= y agencies use paraprofessionals and volunteers as staff members and that, "For some rea= son, paraprofessionals,volunteers and nonprofessional workers in rural communi= ties 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 i= n rural areas. Comprised of family, friends, neighbors, fraternal and civic organizations, and religi= ous institutions, these systems deliver services ranging from crisis intervention, child care, and emotio= nal 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. = =0D Moving from Urban to Rural America = It is never too early for people with HIV disease to begin considering co= ntingency 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 consider= ing 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 l= iving 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 shoul= d 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 ba= ck 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 Initiat= ive 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 fo= r their use? How do local entitlements and other benefits compare to current ones? Are there compet= ent health and mental health care providers in reasonable proximity? Answers to these questions will c= larify 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 communit= y 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; thera= py can be critical for helping the client manage these feelings. Some individuals who return to small to= wns 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 l= arge financial resources or government entitlements to maintain care, there may literally be no one w= ho 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 diff= icult for both the client and therapist as they confront a history of multiple loss and loss of control= =2E 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, retu= rning 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 paren= ts since they are critically ill, in need of a great deal of assistance, and are returning to live in their pa= rents' home. For parents, it may be difficult to respect the adulthood and autonomy of a grown child who i= s in reality once again physically, emotionally, and possibly financially dependent. In such situ= ations, 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 a= mbivalent relationship. For some, the return invalidates their lives as adults who have lived an unap= ologetic and openly gay life. =0D Maintaining Contact and Providing Support It may be useful, prior to the return, to arrange telephone conference ca= lls that will include the client, his or her family, and the therapist to raise and add= ress 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 clie= nt and the family. = One case exemplifies the usefulness of telephone contact for both emotion= al and practical support: "John Miller" (not his real name), a 31-year-old gay m= an, decided to return to his parent's home in rural Georgia three months before he died. He and his th= erapist decided to maintain telephone contact during this process. Mr. and Mrs. Miller had not told a= nyone about their son's diagnosis. In a telephone session with John and Mrs. Miller before John l= eft New York, the therapist suggested that Mrs. Miller prepare a support system by telling her husban= d's parents and her minister about John's illness and imminent return. Two weeks later, Mrs. Miller jo= yously reported that these contacts had gone well and were crucial in her feeling confident of her a= bility 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 Mr= s. Miller of his continuing availability as a friend, pastoral counselor, and spiritual advisor. Thes= e telephone sessions, in turn, reassured John of a welcoming environment, decreasing his fears about mov= ing back to south Georgia. = Telephone contact may also maintain the counseling relatio= nship between therapist and client, providing both individual emotional support and pra= ctical 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 C= hristian family for care. Paul's family had used his return as a way of blackmailing Paul into repe= nting for a life they characterized as sinful and seeking promises from him to become born agai= n in return for care. In this situation, Paul experienced feelings of guilt, internalized homophobia, w= orthlessness, powerlessness, and rage. = Before he left, Paul expressed his feelings in the following way: "Origin= ally 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 ta= ke 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 schedule= d telephone sessions with his therapist only when he knew for certain that he would b= e alone in the house. The sessions initially centered on validating his rage. Sometimes, Paul belie= ved that he needed to recognize his family's pressure as an expression of love and concern. But Paul's th= erapist 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 als= o felt badly for causing his parents so much upset both by being gay and now being dependent upon them= =2E Paul's therapist saw this as regression, since early on in the therapeutic relationship he wou= ld always blame himself for other people's negative reactions without examining how much of another p= erson's discomfort was due to their own shortcomings. Eventually Paul came to realize that it was si= mply too terrifying for him to tell his family his true feelings about the demands they were placing upo= n 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 th= at Paul consider the AIDS and gay/lesbian chat rooms on the Internet. Subsequentl= y, 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= =2E =0D 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 fe= elings that arise in response will be intense; the necessity to relocate becomes a metaphor for the myr= iad losses that HIV disease forces clients to face. To be of maximum assistance to clients, therapist= s 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 wi= ll arise, feelings that may be as intense as the client's. =0D References = 1. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Repo= rt. 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/AID= S: Reducing barriers to care and improving quality of life. AIDS Patient Car= e. In press. 4. Heckman T, Somlai A, Otto#030#Salaj L. Community#030#based organizatio= ns' 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. =0D Conferences: Taking Care of Our Own: HIV/AIDS Care and Prevention in Rural America, Oc= tober 22-24, 1996. For information contact Missouri Dept. Of Health, Bureau of= STD/HIV Prevention, POB 570, Jefferson City, Mo 65102, 314-751-6139. =0D The LIFE Institute offers training for rural AIDS case managers in Califo= rnia. For information contact Donna Yutzy, 926 J Street, Suite 522, Sacramento, CA.= 95814, 916-444-0424, (fax: 916-444-3059. =0D Author Michael Shernoff, MSW a therapist in New York, is adjunct lecturer at Hun= ter College Graduate School of Social Work and is active in the National Soci= al Work and AIDS Network; is the co#030#editor (with Walt Odets) of The Seco= nd Decade of AIDS: A Mental Health Practice Handbook (Hatherleigh Press, 199= 5) and the editor of Counseling Chemically Dependent People With HIV Illness= (Haworth Press, 1991). =0D =0D ----------------------- Headers -------------------------------- =46rom Rob_Marks@Quickmail.ucsf.EDU Fri Feb 9 18:33:59 1996 Return-Path: Rob_Marks@Quickmail.ucsf.EDU Received: from itsa.ucsf.EDU (itsa.ucsf.EDU [128.218.1.14]) by emin13.mail.aol.com (8.6.12/8.6.12) with ESMTP id SAA17067 for ; Fri, 9 Feb 1996 18:33:57 -0500 Received: from quickmail (qmgtwy2.ucsf.EDU [128.218.80.208]) by itsa.ucsf= =2EEDU (8.6.8/GSC4.24) with SMTP id PAA166501 for ; Fri, 9 Feb 1996 15:34:17 -0800= Message-ID: Date: 9 Feb 1996 15:33:50 -0800 From: "Rob Marks" Subject: FOCUS Rural article To: "Michael Shernoff" X-Mailer: Mail*Link SMTP-QM 3.0.2 =0D --PART.BOUNDARY.0.2309.emout10.mail.aol.com.827362022--