Thirty Years into the HIV Epidemic: Social Work Perspectives and Prospects

Thirty Years into the HIV Epidemic: Social Work Perspectives and Prospects

Thirty Years into the HIV Epidemic: Social Work Perspectives and Prospects

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June 5, 2011, marked the thirtieth anniversary of the publication of the first case reports of HIV among gay men in San Francisco and Los Angeles, gen- erally the point in time agreed upon as the start of the epidemic. From the start, social workers made key contributions along with other health provi- ders in developing knowledge and services to help those affected and infected and avoid future infections. HIV social work contains all of the chal- lenges and satisfactions entailed throughout the social work profession due to the wide array of activities we perform as social workers—case manage- ment, other forms of direct clinical practice, supervision of social workers, professionals, and para-professionals, empowerment practice, program development, engaging stakeholders, participation in policy setting, and advocacy of every type, stripe, and category. Our work with individuals, fam- ilies, groups, and communities uses the entire array of social work competen- cies, in terms of our abilities to assess needs on a variety of systems levels and identify resources to formulate and implement interventions. While the evi- dence base for these interventionsmight not have been fully developed, social workers working with HIV-affected clients had to be adept at formulating best practices from what was available in their settings and in their communities.

From the beginning of the epidemic, social workers have had the opportunity to engage the human experience in depth, responding with a variety of ways to help, ranging from crisis and trauma work to supportive interventions, as well as therapeutic interventions with those living with pro- gressive physical and social losses. Our efforts have consistently stressed the need to support strengths and address both environmental supports and underlying mental health issues, not only for the persons with HIV but also for their family members and social networks. In addition, social workers

Address correspondence to Nathan L. Linsk, PhD, Jane Addams College of Social Work, University of Illinois at Chicago, MC 309, 1040 West Harrison Street, Chicago, IL 60607-7134, USA. E-mail: nlinsk@uic.edu

Journal of HIV/AIDS & Social Services, 10:218–229, 2011 Copyright # Taylor & Francis Group, LLC ISSN: 1538-1501 print=1538-151X online DOI: 10.1080/15381501.2011.598714

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with our ethic of acceptance and diversity were willing and able to address HIV’s conundrums: fear of the unknown, pervasive stigma, and a rapidly evolving epidemic with novel treatment responses emerging almost every year, set within the coexisting conditions of poverty, isolation, mental illness, and addictions. HIV often entails ‘‘off time’’ life events (Hagestad & Neugarten, 1976), whereby individuals may experience illness and take care of others who are sick and dying at ages far below what is developmentally normative. These circumstances all entail complex social and emotional issues that need intensive psychosocial interventions.

Like our clients—whether they are people, systems, or communities, we have had to learn to thrive on challenge, to become resilient, and to grow from the experience. This is particularly critical when applying the central social work paradigm of the connection between the person and the social environment (Karls, O’Keefe, & National Association of Social Workers [NASW], 2008) to a new disease. Social workers have learned that we need to care for ourselves in order to care for others on a consistent basis. The alternative is burnout, compassion fatigue, and disengagement from the workforce (Demmer, 2004). While some have moved on to other challenges, social workers have often been the catalysts and leaders who have created and sustained solutions to the dilemma of HIV (Willinger & Rice, 2003).

LOOKING BACK: A SHORT HISTORY OF HIV=AIDS SOCIAL WORK

In the early 1980s, HIV=AIDS became visible within health care systems, first on the east and west coasts and later throughout the United States. As social workers, like everyone else, we were unprepared, knew little, and had to approach these events through the lenses of our own experience working with clients, be they in health care or in other fields of practice. The social work response initially emerged as workers attempted to assist those with this new, often mysterious deadly syndrome. Our professional colleagues, at the beginning of the epidemic, had to be dedicated and innovative. In our initial efforts, we found ways to work with other disciplines that often had more power than we did. As social workers, we had to be flexible and responsible, often making things up to create new strategies as we went along. Much of our knowledge and techniques in the developing field of HIV practice came from other fields of social work practice including oncology practice, medical social work, and service to the frail and aged. Our historical work with the disadvantaged—be they adults, children, or their families— provided a good foundation for this rapidly declining and vulnerable com- munity. The review that follows is only a sample of the achievements made by social work in response to HIV, and I regret leaving out any significant organizations or people who made great contributions to our field.

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Largely our history is recorded only in the limited articles written for practice audiences, less so for research and evaluation audiences. Barbara Willinger and Alan Rice (2003), however, have done us a favor in pulling together recollections of various social workers throughout the epidemic and cite works by prolific authors such as Michael Shernoff, including his efforts to start a Social Work HIV Journal, Readings and Writings, which attempted to track a bit of what went before.

PRACTICE INNOVATIONS

Three decades ago, HIV first appeared in health settings and the emergence of key services owes much to the established social work methods that were quickly adapted. Early on, care consisted of treatments for opportunistic infections and some prophylaxis, although the shifting array of proposed treatments reflected an ongoing search for solutions. At the time, although little could be done on a medical level, the need for social care was over- whelming. Skills such as crisis management, assisting with ‘‘adjustment to ill- ness’’ (a term used pervasively in health social work), medical compliance, decision making about disclosure, addressing family conflict, legal-ethical issues, and linkage to the limited other available services were paramount. Whether the persons carrying out these tasks were called social workers or not, a majority of the activities of those providing service fit squarely in the social work domain.

First and foremost, social work intervention, in all its parts, had enor- mous applicability to HIV. Counseling skills such as assessing needs, treat- ment planning, identifying priorities, supportive listening, problem solving, and crisis management were critically useful. However, the social work strength-based approach (Graybeal, 2001) of working with the person within their social environment was especially useful to help both infected and affected people to work with others using a psycho-social-spiritual approach (Tomaszewski, 2010). In particular, we as social workers learned to be sensi- tive to the cultural meanings of loss, seeking help with illness, caring, and taking care of oneself as these meanings vary across the diverse contexts of our clients’ lives (Kaopua, 1998).

The crucial role of support groups provided bridges for isolated people with HIV, their caregivers, and their families (Weiner, 2003; Willinger, 2003). Often in need of emotional contact and direct support, these groups created normality in a highly unpredictable situation. In fact, social work’s role in involving families, be they families of origin or choice, and mediating in times of family challenges are directly traceable to our initial efforts in HIV care provision. From our tradition, involving multiple systems social work has created new fields of practice including family mediation, family therapy for the persistently ill, and family-based care.

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Soon we adapted case management and its medical cousin, discharge planning, to the needs of people with HIV and their families. Case manage- ment is a concept borrowed from our earlier work in gerontology and mental health. Based on ongoing assessment and coordination of services, case management operationalizes the referral process, including an ongoing assessment, development, implementation, and coordination of plans of ser- vices in order to provide ongoing support for the person and their family (Chernesky & Grube, 2000). Often social workers became a critical part of people’s lives by convening the care team and holding patient and family conferences.

On an organizational level, some social workers led development of regional case management programs, using their clinical and administrative expertise to shape a panoply of client-centered services for those who were refused services by existing facilities. For example, Susan Gallego was instru- mental in developing culturally competent services at AIDS Services of Austin, Texas. Helen Land developed caregiver support groups in Los Angeles and designed different types of support groups for different popula- tions (e.g., multicouple groups, gay men, etc.). In Chicago, we convened a coalition of social workers, nurses, and others and formed a ‘‘case manage- ment cooperative’’ created to share ownership of a citywide system of care coordinated by the AIDS Foundation of Chicago. Of course many of the innovations occurred in New York under the auspices of the Gay Men’s Health Crisis, which formed of necessity to address the emergency of caring for so many needy people with HIV. In a few places, case management was integrated into other service systems. For example, Charles Emlet led a large case management program integrated with aging services in Alameda, California. The Area Agency on Aging in Phoenix, AZ, has been integrating aging services with HIV services for many years.

Finally, client and systems advocacy, an essential part of social work, are indispensably a part of HIV social work. Empowering clients to advocate for themselves, supporting mutual help, individual problem solving to make sys- tems more responsive, and legislative and policy work all resonate with stan- dard social work practices. Among all these efforts, social workers took the lead in creating advocacy responses.

LEADERSHIP

Has social work established a domain for the profession in the HIV=AIDS field? Social workers have been at the forefront of HIV=AIDS services but all too often in secondary roles or, worse yet, without revealing they are social workers. There are two levels of leadership for social work HIV work: first, internal to the social work profession, and, second, to leadership of HIV programs or systems by social workers. On the larger level, many social

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workers have had key positions in developing programs and policies, serv- ing as program directors, and chairing task forces and planning councils. Highlighted here are a few noteworthy leaders in our field. David Harvey established and was executive director of the AIDS Alliance for Children, Youth and Families for many years. Tom Sheridan was the policy director at AIDS Action when the Ryan White program was launched, and Nathan Linsk, Cynthia Poindexter, and Vincent Delgado were instrumental in the initiation and development of the National Association on HIV Over Fifty.

Social workers have also provided leadership in a number of population specific and research areas. Helen Land was among the first to call attention to undocumented Latinas infected and caring for family members with HIV— and they did so often anonymously due to stigma in their families and com- munities. She was awarded one of the first R01 National Institutes of Health grants given to study the stress process and its affect on physical and mental health over time, including the effects of multiple bereavement and bereave- ment recovery. Larry Gant has conducted a wide array of research and pro- gram evaluation dealing particularly with issues for African American men in urban areas. Lori Weiner has taken leadership in a variety of areas related to HIV and children at the National Institutes of Health. Jack Stein, after having chaired the National Association of Social Workers initial HIV Task Force (see later), has moved ahead in a number of key leadership roles for the Sub- stance Abuse Mental Health Services Administration as well as the National Institute for Drug Abuse.

We should recall and celebrate how social work has incorporated HIV into our infrastructure and support programs. A number of efforts have orga- nized leadership of the social work role in the HIV epidemic, and some insti- tutional response has been successful. As early as 1985, a number of cities created SWANs, Social Work AIDS Networks, which provided support, con- sultation, networking, and education to social workers addressing HIV in their areas (Ostrow, 2003). A National Social Work AIDS Network was estab- lished under leadership of Willis Green and subsequently Darrell Wheeler and Ednita Wright. While local SWAN groups may still exist, we have only this year established an ongoing professional organization addressing HIV and social work, the newly established Professional Association of Social Workers in HIV and AIDS (PASWHA, http://www.paswha.org), led currently by president Alan Rice, LCSW, which is a membership organization providing support, resources, and advocacy.

Three of our pioneering leaders, Vincent Lynch, Gary Lloyd, and Manual Fimbres, came together in Boston in 1989 with support of the New England AIDS Education and Training Center to launch the first national conference on HIV and social work. The HIV Social Work Response conference is a signal achievement as the only consistent entity that has regularly addressed social work HIV roles and has had significant collaborations with the Ryan White CARE program and a set of schools of social work and HIV