- Email: [email protected]
AIDS nursing care summit: The final synthesis
American Academy of Nursing's HIV/AIDS Nursing Care Summit: The Final Synthesis Carmen J. Portillo, RN, PhD Patricia E. Stevens, RN, PhD Suzanne
Henry, RN, DNSC, FAAN
Judith M. Saunders, RN, DNSC, FAAN Inge B. Corless, RN, PhD, FAAN B a r b a r a A. Munjas, RN, PhD, FAAN
The American Academy of Nursing HIVIAIDS Nursing Care Summit convened nurse leaders from across the United States to discuss nursing responses to the HIV/AIDS epidemic. This final synthesis of the Summit includes recommendations regarding clinical practice, administration and policy, education, and research in the area of HIVIAIDS.
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n January 1994, more than 300 nurses from across the United States met in Washington, D.C., to participate in the American Academy of Nursing (AAN) HIV/AIDS Nursing Care Summit. The members of the AAN Expert Panel on the Spectrum of HIV Infection (see Appendix 1) viewed the Summit as an opportunity to bring together experts in HIV prevention, patient care, and research to assess the impact of the first decade of the HIV/ AIDS epidemic on health and patient care. It was hoped that by integrating the perspectives of health care providers, educators, researchers, and consumers, plans for nursing care needs of the future could be formulated. This momentous event was sponsored by the AAN, in collaboration with the American Nurses Association (ANA), the Association of Nurses in Nurs Outlook 1996;44:229-34. Copyright © 1996 by Mosby-Year Book, Inc. 0029-6554•96•55.00 +0 3511175530
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AIDS Care (ANAC), the Oncology Nursing Association, the Division of Nursing, Bureau of Health Professions, Human Resources and Services Administration (HRSA), the Division of HIV Services, Bureau of Health Resources Development, HRSA, the National Institute of Nursing Research, the National Institutes of Health, and the AIDS Education and Training Center, HRSA (see Appendix 2 for a listing of Conference Planning Committee members). In 1989 an HIV/AIDS epidemic action agenda for nursing was set at a national invitational meeting convened by the Division of Nursing, U.S. Department of Health and Human Services, and the National Center for Nursing Research, National Institutes of Health. 1 In 1994 it was incumbent upon the discipline to update and solidify a national HIV/AIDS epidemic agenda for nursing because of the voracious spread of HIV infection in the United States
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and across the world, the urgent need for primary and secondary prevention in diverse populations, and rapidly emerging scientific knowledge, technology, and practice innovations in HIV/AIDS care. The 1994 Summit was guided by the following five objectives: (1) to examine the impact of the first decade of the HIV/AIDS epidemic on patient care and nursing in the United States; (2) to anticipate the impact of the second decade of the HIV/AIDS epidemic on patient care and nursing practice; (3) to prioritize a research agenda for patient care and nursing practice that is responsive to patient care needs anticipated during the second decade of the epidemic; (4) to make recommendations about academic and continuing education activities for nurses caring for HIV/AIDS patients during the second decade of the epidemic; and (5) to examine how the knowledge and experience gained in responding to the epidemic have contributed to our larger understanding of society, health, patient care, and nursing practice. At what was indeed a pivotal gathering of a cross section of nurses of all educational levels involved in HIV/AIDS clinical practice, administration and policy, education, and research, participants in the audience and at the podium joined together in dialogue during 3 days of keynote sessions that featured 45 invited speakers and eight moderators. Sessions covered such divergent topics as clinical disease progression, immunologic and viPortillo et al.
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rologic markers, epidemiological trends, neuropsychiatric sequela, substance misuse issues, access to health care, communitytargeted primary prevention, HIV infection in African-American and Latino families, symptom management, home care, case management, and family caregiving. Among the distinguished speakers at the Summit were Sandra Anderson, PhD, RN, of the World Health Organization, who discussed the global impact of HIV/AIDS; Marilyn Chow, DNS, RN, FAAN, who challenged participants about changes in the health care system; Lorretta Sweet Jemmott, PhD, RN, FAAN, who shared her empiric knowledge about promising new strategies for HIV prevention; Peter Ungvarski, MS, RN, FAAN, who provided a comprehensive overview of comorbidities of HIV/AIDS; and Ann Williams, EdD, RN, C, FAAN, who brought participants up to date on advances in clinical care of people with HIV infection. In addition, federal representatives highlighted resources for HIV/AIDS practice, education, and research, a panel of consumers shared their personal experiences in living with HIV/AIDS, and prominent HIV/ AIDS educators discussed a variety of education and training models. Finally, legislative updates were provided by Congressional staff and federal appointees. Various networking activities at the Summit included a display of posters that reported innovative research, education, and practice projects; technical assistance workshops facilitated by federal agency prograin staff; and luncheons and receptions. Without concurrent agenda to divide the focus and activities of participants, community-building among those in attendance and steady movement toward accomplishment of Summit objectives were evident. A palpable enthusiasm and energy built as participants worked together to examine the impact of the first decade of the HIV/AIDS epidemic on the health of communities and on nursing practice and to anticipate health care needs in the future. Throughout the Summit, participants were invited to submit written feedback describing implications in the areas of clinical practice, policy, education, and research. Designated "synthesizers" attended all the Summit sessions, reviewed the implications feedback from participants, and consulted written papers submitted by the speakers. Each synthesizer 230
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then addressed the community of participants at the conclusion of the Summit and suggested directions relating to HIV/AIDS for the discipline of nursing. Use of this innovative strategy for including the reflections and experiences of the wide array of participants in attendance enabled a richer formulation of implications than would otherwise have been possible. The purpose of this article is to relay the final recommendations presented by the designated synthesizers at the end of the Summit to the broader nursing community. This synthesis of implications for clinical practice, policy, education, and research is meant to invigorate empirical, clinical, and political efforts so that nurses might better meet urgent client and community needs in the face of HIV/AIDS. Readers interested in more specific substantive implications about particular topics are encouraged to consult the published volume of Summit proceedings available from the AAN. 2
Because o f health care protocols and changes in health care financing during the past 5 years, the site o f nursing care has shifted; as a result, persons with HIV/AIDS now receive a minimum o f hospitalbased acute care and must depend on communitybased ambulatory and home care services. O V E R V I E W OF THE CURRENT STATE OF AFFAIRS IN H I V / A I D S NURSING CARE At this juncture in our societal experience of HIV/AIDS, having passed through the first decade of the epidemic, many health care disciplines, including nursing, are critically reflecting upon the effectiveness of prevention methods, the usefulness of treatment regimens, the wisdom of disease conceptualizations, the appropriateness of research approaches, the adequacy of health and social policies, and the extent of educational outreach. 3"5Such evaluation is absolutely essential because, despite valiant efforts on the part of nurses and others, the incidence of HIV/AIDS is increas-
ing, stigmatization of those infected and affected by the virus is unabated, social and economic resources for persons living with HIV/AIDS are harder to come by, access to health care is shrinking, and we have no cure. HIV/AIDS is a nursing-intensive disease. Because Of health care protocols and changes in health care financing during the past 5 years, the site of nursing care has shifted; as a result, persons with HIV/AIDS now receive a minimum of hospital-based acute care and must depend on community-based ambulatory and home care services.6As infected persons live longer with the chronic conditions associated with AIDS and as more infectious diseases (e.g., tuberculosis) proliferate in persons whose immune systems are compromised, increased expertise in management of symptoms 7 and control of drug-resistant infectious diseases ~ has become necessary. The U.S. populations affected by HIV/ AIDS have also changed. In the first decade of the epidemic, gay men clearly experienced the ravages of this disease more than any other group. In the second decade of the epidemic, incidence is widening, and rapid increases in the rates of HIV infection have occurred among women and adolescents. Persons who inject drugs and their sex partners are also at escalating risk, and communities of color are now bearing the brunt of the spreading epidemic. In addition to these emerging population groups at risk for contracting HIV, men who have sex with men continue to have primary and secondary prevention needs of the utmost urgency. 9 Current nursing literature poses challenges and suggests that the Summit recommendations remain pertinent. Is the nursing workforce being adequately educated to care for persons with HIV/AIDS ?10 Is nursing care keeping pace with burgeoning knowledge of HIV/AIDS ?u Do we fully understand the nursing care needs of patients debilitated by HIV-related health conditions? 12'13Are nurse practitioners effective primary care providers for HIV-infected persons? Will current educational methods curb the spread of HIV/AIDS in women? 14 Are we reaching adolescents with our interventions? I5 What is the responsibility of nursing for improving access to health and social services for impoverished communities and communities of color? 16Is research by nurses adequately
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attending to social, cultural, and economic contingencies faced by populations at risk? Within the confines of this article, we cannot begin to perform a comprehensive review of all of the significant contributions made by nurses in the realms of practice, policy, education, and research, nor can we describe all of the work yet to be done. We can share the collective wisdom of the nurses who attended the HIV/AIDS Nursing Care Summit and thereby identify imminent issues. In addition, recommendations from the Summit can help guide the nursing disdpline in responding to the countless contemporary challenges of prevention and care for persons who are at risk for and infected with HIV. At a point not too far in the future, if we wish to do adequate battle with this devastating disease, nurses will need to reconnoiter and prepare yet another plan of action. CLINICAL PRACTICE
In exploring the provision of care to persons living with HIV/AIDS, 1994 Summit participants identified three challenges of great consequence: (1) an increasing number of disenfranchised clients; (2) increasing complexity of the care required by clients because of comorbid conditions, polypharmacy, and psychosocial problems; and (3) decreasing resources with which to provide the necessary care. These challenges enjoin several actions. First, successful models of care must be documented and disseminated. Even the
Journal of the Association of Nurses in AIDS Care, which is dedicated to the nursing care of persons with HIV/AIDS, is consistently in need of submissions about clinical practice. In particular, strategies for effective multidisciplinary collaboration must be delineated. The increasing complexity of care required by clients with HIV
The increasing complexity of care required by clients with HIV disease necessitates patient-centered multidisciplinary collaboration. disease necessitates patient-centered multidisciplinary collaboration. Although many individual nurses have been very successful at collaborative practice, specific strategies for effective collaboration NURSING OUTLOOK
have yet to be well described in the nursing literature. As major participants in multidisciplinary teams, nurses must be proactive in including nursing-sensitive client outcomes such as quality of life, individual and family coping skills, and role strain into the evaluation of client services. Nurses must assess and intervene with clients, recognizing the physical, social, cultural, and economic contexts of their lives. Beyond individualized care, nurses must develop culturally competent family-leveland community-level nursing interventions. These nursing therapeutics should include primary, secondary, and tertiary prevention. The value and effectiveness of adjunctive therapies aimed at improving immunologic status and quality of life in patients with HIV/ AIDS have yet to be fully examined. Nurses can be key players in this clinical testing. In addition, the role of information technology in the rapid dissemination of information, remote consultation, collaboration, and decision support warrants further exploration. Emerging information technologies offer a tremendous opportunity to extend HIV/AIDS nursing expertise beyond the epicenters of the epidemic. Nursing must also take an ethical stand and protest the inequities in treatment options available to socially, economically, and politically disenfranchised clients living with HIV/AIDS. Nursing must develop and support political actions aimed at changing health care policies related to the provision of resources for public health in general and for community-based AIDS care in particular. In identifying personnel concerns relating to the delivery of HIV/AIDS nursing care, Summit participants discussed the major challenges they face: (1) shortened lengths of stay in acute care settings, which results in an environment of crisis intervention rather than symptom management; (2) increasing levels of client acuity in home care; (3) lack of resources and support to foster long-term survivorship as nurses who provide direct care to persons with HIV disease; (4) lack of safety for health care providers in new care environments such as "crack houses," welfare hotels, and the streets; and (5) transmission risks that result when institutions decide not to stock the safer medical devices that are now available. Participants advocated that several actions be taken.
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First, both organized nursing and individual nurses in coalition with consumers and other health care providers must lobby for adequate personnel and resources to support HIV/AIDS nursing care in both
Emerging information technologies offer a tremendous opportunity to extend HIVIAIDS nursing expertise beyond the epicenters of the epidemic. institution- and home-based settings. Second, with the support of health care administrators and policy makers, nurses must examine methods for improving the safety of health care providers in community contexts of care and must insist that safer medical devices be supplied in all inpatient and outpatient facilities. Third, strategies on how nurses can maintain their own physical and mental health while providing care for persons with HIV/AIDS must be developed and disseminated. Fourth, nurses must insist on adequate remuneration, resources, autonomy, and support so they can continue to make a significant difference in the lives of those infected and affected by HIV/ AIDS. Through renewed and expanded actions, nurses can become more visible as a discipline and increase the public's recognition of the compassion, commitment, and competence with which those in HIV/ AIDS care approach their work. A D M I N I S T R A T I O N A N D POLICY
Participants at the Summit identified five major areas of need in the realm of administration and policy: (1) effective leadership by professional nursing organizations, (2) development of just legislation and policy, (3) adequate nursing personnel to accomplish optimal nursing care, (4) nursing input into specific HIV/AIDS-related policies and procedures, and (5) adequate financing for the provision of nursing care. On the basis of their combined experiences in clinical practice, research, teaching, administration, and policy development, participants offered a number of recommendations for how nurses might take action to meet these needs. To promote effective leadership, nurses need to support professional nursing organizations and urge them to be prominently Portillo et al.
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involved in the critical issues of the HIV/ AIDS epidemic. Specifically, nurses must encourage the AAN, the ANA, and our other constituent organizations to lobby for health care reform legislation that will develop a strong public health infrastructure. The erosion of public health facilities, resources, and services during the past two decades must be reversed, and the current Congressional attacks on funding of HIV care at both federal and state levels must be stopped. Only with a solid, wellfunded public health infrastructure can nursing effectively address the continuum of care required by individuals, families, and communities infected and affected by HIV/AIDS. Nurses must be better prepared and more strategically situated if they are to become vitally involved in developing HIV/AIDS legislation and policy at local, state, federal, and international levels. To accomplish these goals, participants recommended that (1) policy workshops become a standard component of State Nurses' Association meetings to help nurses develop their political skills; (2) organized nursing actively campaign for nurse candidates for political offices and nurse appointees for policy positions; and (3) nurses work with legislators to develop advocacy packages for clients living with the chronic circumstances of HIV/AIDS. The growing number of persons infected and affected by HIV demands that the nursing profession take action to ensure that there are adequate nursing personnel to accomplish optimal nursing care. Summit participants recommended that the AAN, in collaboration with the A N A and the Division of Nursing, Bureau of Health Professions, HRSA, work to develop sufficient numbers of entry level and advanced practice nurses who are competent to offer continuum-of-care services to individuals and families living with HIV/ AIDS in a variety of institutional and community settings. Summit participants recommended specialty certification in HIV/ AIDS nursing as one means to this end. With the impetus of this consensus, the A N A C has developed such a program and will offer a national certification examination in 1996. If nursing is to make a difference in the way the health care delivery system is structured, it must be in the forefront of shaping HIV/AIDS policy. Through its con232
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stituency organizations, nursing can form alliances with the AIDS Action Council, the Consortium for Citizens with Disabilities, and similar advocacy organizations to coordinate legislative efforts on behalf of persons with HIV/AIDS. By building coalitions among organizations and establishing both formal and informal networking ties, nursing can more effectively disseminate information and achieve a powerful
Only with a solid, wellfunded public health infrastructure can nursing effectively address the continuum of care required by individuals, families, and communities infected and affected by HIV/AIDS. synergy. Through its government affairs committees, nursing can examine the dual impact of health care reform and welfare reform on persons with HIV/AIDS. One Summit participant suggested that the services provided to persons with HIV/AIDS be used as an indicator or tracer of access and quality of service as transitions are made in funding and administration of health care and social services. Nurses need to lobby for both community-based and clinical service planning structure and not allow the profession to be split over issues of primary prevention versus tertiary prevention. Multidisciplinary collaboration in designing HIV policy and care delivery demonstration projects could be facilitated by alliances between organized nursing and organized medicine. For instance, a joint project between the AAN and the American Academy of Family Practice might focus on home care interventions. Nursing must keep its eye on the populations and the settings most at risk. For example, what resources and services are needed to bring a halt to the increasingly rapid transmission of HIV among adolescent populations? What regulations and enforcement strategies are needed to control the spread of tuberculosis in client care settings? In summary, nursing needs to be more visible to the public and to policy makers, particularly in relation to its role and expertise in the care of persons with HIV/AIDS.
Adequate financing for the provision of nursing care is essential. The costliness of the AIDS epidemic is proving overwhelming for individuals and families. Persons who are uninsured or underinsured are increasingly unable to penetrate the barriers between themselves and the health care they need. Reimbursement incentives for cost-effective, comprehensive services across the care continuum from health promotion to hospice are needed; such reimbursement must be based on services and not on particular provider groups. NURSING
EDUCATION
At the 1994 Summit, participants reaffirmed the importance of having programs at all educational levels to prepare nurses to respond effectively to the problems posed by the HIV/AIDS epidemic. Participants noted that educational deficits identified as far back as 1989,1 such as the development and implementation of core curricula in HIV/AIDS care at each education level, have not been adequately addressed. The ANAC took this Summit consensus as a charge and has since developed a core curriculum for HIV/AIDS nursing. :7 Several other features of educational programs were seen as pivotal. Nursing education in HIV/AIDS must operate at multiple levels and include undergraduate, graduate, continuing education, and inservice programs. At the base it must contain solid substantive preparation in epidemiologic pattems of the epidemic; family and community ramifications of HIV/ AIDS; primary prevention strategies; clinical manifestations of HIV/AIDS; nursing assessment, diagnosis, and management of common illnesses associated with HIV progression; psychosocial care of persons infected and affected by HIV; and related legal and ethical issues. All education offerings must be culturally relevant to prepare students to meet the needs of diverse populations. Programs should help nurses bridge the boundaries that impede care for people with HIV/AIDS, such as the boundaries between hospital, community, and home care settings, those between professional and lay caregivers, and those between the multiple health professions. Educational programs must be futureoriented. Summit participants issued a clarion call for education that prepares today's nurses to care for the clients of to-
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morrow. The HIV/AIDS epidemic has engendered rapid change and expansion in the knowledge base, technology of care, and political nature of illness, treatment, and prevention. Nursing education in this area must therefore be flexible, innovative, and focused on imminent developments, not mired in maintaining the status quo. Finally, Summit participants recognized that many of the first cadre of nurses who have provided care to persons infected and affected by HIV have begun to leave because they are burned out after a decade of intense involvement. What is academic nursing's role in recruiting nurses to continue to care for this population? How can education help increase understanding and prevent burnout? Fagin and Lynaugh 18have pointed out that not only is nursing approaching the twenty-first century without agreement on the educational level for entry into practice, but it has also allowed its educational system to become fractionalized. Lack of cohesion and coordination of nursing education has paralleled the paucity of coordination in HIV/AIDS practices and policies that has resulted from having neither a national health plan nor a national HIV/ AIDS plan. Each school of nursing and each professional development program currently determines how to focus education about the complexities of caring for HIV/AIDS clients and their families and communities. While the lack of integration has spawned creativity in individual programs, it has left serious gaps at all levels of nursing education. Leadership from organized nursing is necessary to close these gaps. Closer and more systematic collaboration between regional AIDS Education and Training Centers and schools of nursing may be one strategy for enhancing the integration needed to prepare knowledgeable and culturally competent nurses who can meet the challenges of primary, secondary, and tertiary prevention in the age of HIV/AIDS. N U R S I N G RESEARCH
The future of nursing research about HIV/ AIDS is tied to nurses' willingness to respond to the real challenges that are grappled with on a daily basis by communities, families, and individuals who are infected and affected by HIV. The 1994 AAN Summit on HIV/AIDS offers four principles to serve as a framework to guide NURSING OUTLOOK
such investigation: (1) cultural and contextual specificity, (2) complexity, (3) community-based intervention, and (4) collaboration. Nurses must be culturally and contextually specific in all research endeavors about HIV/AIDS. The types of clients and the contexts in which they live on a dayto-day basis as they deal with HIV/AIDS are sufficiently diverse to warrant targeted study. Cultural understanding of risk behavior, risk perception, risk relapse, and risk reduction in particular communities is vital. Summit participants urged the discipline to take action to ensure the inclusion of disenfranchised communities. They insisted that nurses do targeted research about, with, and for underserved, understudied populations who are at risk for and living with HIV. They emphasized the importance of addressing the particular needs of populations such as African-Americans, Hispanics, gay men, adolescents, women, impoverished families, incarcerated men, incarcerated women, children, homeless persons, injection drug users, partners of injection drug users, undocumented immigrants, and rural dwellers. Nurses need to work within social networks to affect community norms so that youth and adults can be supported in their personal HIV prevention efforts. Participants also eloquently stated the need for baseline descriptive understanding of the symptom management needs of persons who are living with HIV/AIDS. They suggested that nurses pay heed in research not
Cultural understanding of risk behavior, risk perception, risk relapse, and risk reduction in particular communities is vital
only to specific symptomatology but to context, that is, the sociocultural and economic environments in which clients are managing HIV/AIDS symptoms. For example, how can nurses most effectively reduce the burden of symptoms for clients in environments in which racism, sexism, impoverishment, homophobia, and fear of HIV-infected people are still alive and well? Nursing research about HIV/AIDS
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must capture the complexity of the health conditions, health care needs, and environmental circumstances of infected persons. At the Summit, participants spoke again and again about the following complexities: (1) HIV-related disease processes, with their multisystem insult and failure; (2) immune responses, iatrogenic infections, side effects from medical regimens, and devastating comorbidities; (3) highly intricate care activities in which nurses must be prepared to engage; (4) limitations in housing, economic resources, access to health care, and social support for families struggling with HIV/AIDS; and (5) diverse social, political, and economic environments in which HIV is spread. Participants asked for studies that make the links in this holistic, complex picture of HIV/AIDS. For instance, they wanted to know the following: (1) What are the connections among violence, childhood trauma, sexual abuse, and HIV for women? (2) What are the connections among homelessness, unsafe environments, survival sex, and HIV for youth? (3) What are the connections among insurance status, access to health care, outcomes, and disease progression? (4) What are the connections among drug and alcohol use, anticipation of partner reactions, gender subordination, and sexual risk for HIV? Community-based intervention research must be supported. Nursing needs to develop empirically sound communitybased models of primary prevention and effective, outcome-tested communitybased models of care. Summit participants made it clear that they did not discount acute care services but were recognizing the continuum of care that nurses value. Within this continuum of communitybased care are the predictably unpredictable periods of HIV disease and crisis that may require hospitalization. Collaboration is an essential element in effective nursing research about HIV/ AIDS. Vital collaborators include clients, families, community-based organizations, nurses involved in the direct care of HIVinfected clients, nonprofessional caregivers such as community outreach workers, and research colleagues in other disciplines. Because of the nature of their work, nurses have natural in-roads to making these cooperative connections: they are the largest cadre of direct care providers, and they already have relationships with clients, Portillo et al.
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colleagues, and communities and need only nurture them and move them in new directions. Collaborations through caring connections with people who have HIV/ AIDS are perhaps the most powerful. As presenter Barbara Aranda-Naranjo sug-
Collaborations through caring connections with people who have HIVIAIDS are perhaps the most powerful. gested to Summit participants, when nurses form we-we relationships with clients instead of we-them relationships, they till the soil of respect and dignity to make a fertile ground for compassionate investigation. CONCLUSION On behalf of all of the participants at the AAN's H1V/AIDS Nursing Care Summit, we share our hopes and offer these recommendations to the nursing community. HIV/AIDS nursing can make a difference during the next decade. Nurses can use the power of their clinical practice, their administrative and policy influence, their education, and their research to do the following: • Secure resources for primary prevention and nursing intervention programs that work • Ensure that those at risk for HIV have access to the knowledge, skills, apparatus, legal protection, support, and resources that they need to prevent HIV transmission • Give voice to the needs of men, women, and children who are living with HIV/AIDS • Protest the fact that many clients have inadequate access to appropriate health care services • Insist that those who are experiencing the illnesses associated with HIV/ AIDS be allowed the most competent nursing care that we have to offer. • REFERENCES 1. PhillipsTP, Bloch D, editors. Nursing and the HIV epidemic: a national action agenda. Proceedings of an invitational workshop. Washington (DC): Division of Nursing, U.S. De-
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partment of Health and Human Services, and National Center for Nursing Research, 1990. 2. Holzemer WL, Portillo CJ. Tile HIV/AIDS nursing care summit proceedings. Waldorf (MD): American Academy of Nursing, 1994. 3. Clarke A. What is a chronic disease?The effects of a re-definition in HIV and AIDS. Soc Sci Med 1994;39(4):591-7. 4. Fee E, Krieger N. Thinking and rethinking AIDS: implications for health policy. Int J Health Serv 1993;23(2):323-46. 5. Stryker J, Coates TJ, DeCarlo P, HaynesSanstad K, Shriver M, Makadon HJ. Prevention of HIV infection: looking back, looking ahead. JAMA 1995;273(14):1143-8. 6. Sowell R. Community-based HIV case management: challenges and opportunities. J Assoc Nurses AIDS Care 1995;6(2):33-40. 7. Hench K, Anderson R, Grady C, Ropka M. Investigating chronic symptoms in HIV: an opportunity for collaborative nursing research. J Assoc Nurses AIDS Care 1995;6(3): 13-7. 8. Anastasio CJ. HIV and tuberculosis:noncompliance revisited. J Assoc Nurses AIDS Care 1995;6(2):11-23. 9. SowellR. Gay men should not be forgotten. J Assoc Nurses AIDS Care 1995;6(1):15-6. 10. Hurley PM, McGriff EP. Nursing education and the HIV/AIDS pandemic. J AssocNurses AIDS Care 1995;6(1):49-52. 11. Flaskerud ]H, Ungvarski PJ. HIV/AIDS: a guide to nursing care. 3rd ed. Philadelphia: WB Saunders, 1995. 12. Baigis-Smith J, Gordon D, McGuire DB, Nanda J. Health care needs of HIV-infected persons in hospital, outpatient, home, and long-term care settings. J AssocNurses AIDS Care 1995;6(6):21-33. 13. HolzemerWL, Henry SB, Reilly CA, Portillo CJ. Problemsof persons with HIV/AIDS hospitalized for pneumocystiscarinii pneumonia. J Assoc Nurses AIDS Care 1995;6(3):23-30. 14. Stevens PE. Impact of HIV/AIDS on women in the United States: challenges of primary and secondary prevention. Health Care Women Int 1995;16:577-95. 15. Jemmott JB III, Jemmott LS. Interventions for adolescents in community settings. In: DiClemente R, Peterson J, editors. Preventing AIDS: theory and practice of behavioral interventions. New York:Plenum, 1994. 16. Seals BF,SowellRL, Demi AS, Moneyham L, Cohen L, Guillory J. Falling through the cracks: social service concerns of women infected with HIV. Qualitative Health Res 1995;5(4):496-515. 17. ANAC's core curriculumfor HIV/AIDS nursing. Philadelphia: Nursecom, 1996. 18. Fagin CM, LynaughJE. Reaping the rewards of radical change: a new agenda for nursing education. Nuts Outlook 1992;40:213-20.
CARMEN J. PORTILLO is an assistant professor at the School of Nursing, University of California, San Francisco.
PATRICIA E. STEVENS is an assistant professor at the School of Nursing, University of Wisconsin-Milwaukee. SUZANNE HENRY is an associate professor at the School of Nursing, University of California, San Francisco.
JUDITH M. SAUNDERS is an assistant professor at the Department of Nursing, University of Southern California, Los Angeles. INGE CORLESS is an associate professor at the Massachusetts General Hospital Institute of Health Professions, Boston. BARBARA A. MUNJAS is a professor of Psychiatric Nursing at the School of Nursing, Virginia Commonwealth University, Richmond. APPENDIX
1.
Members of the AAN's Expert Panel on the Spectrum of HIV Infection included Sandra Anderson, PhD, RN; Judith Baigais-Smith, PhD, RN, FAAN; Marie Annette Brown, PhD, RN, ARNP, FAAN; Felissa Cohen, PhD, RN, FAAN; Inge B. Corless, PhD, RN, F A A N ; Beverly Hall, PhD, RN, FAAN; William L. Holzemer, PhD, RN, FAAN (chairperson); Loretta Jemmott, PhD, RN, FAAN; Helen Miramontes, MSN, RN, FAAN; Clifford Morrison, MS, MSN, RN, FAAN; Barbara Munjas, PhD, RN, FAAN; Kathleen Nokes, PhD, RN, F A A N ; Judith Saunders, DNSC, RN, FAAN; Laurie Sherwen, PhD, RN, FAAN; Suzanne Smeltzer, EdD, MS, RN, FAAN; Richard Sowell, PhD, RN, FAAN; Peter Ungvarski, MS, RN, FAAN; and A n n Williams, EdE, RNC, APRN, FAAN.
A P P E N D I X 2.
Members of the Conference Planning Committee for the A A N HIV/AIDS Nursing Care Summit included Marie Annette Brown, PhD, RN, ARNP, FAAN; Anita Eichler, MPH, MA; R o A n n e Dahlen Hartfield, PhD, RN; William L. Holzemer, PhD, RN, FAAN; Loretta Sweet Jemmott, PhD, RN, FAAN; Doris Mosley, PhD, RN; Thomas Phillips, PhD, RN, CS, FAAN; Mary E. Ropka, PhD, RN, FAAN; Barbara Russell, PMH, RN, CIC; and A n n B. Williams, EdD, RNC, FAAN. Leadership was provided by Jan Heinrich, PhD, RN, FAAN, Executive Director of the A A N .
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Henry, RN, DNSC, FAAN
Judith M. Saunders, RN, DNSC, FAAN Inge B. Corless, RN, PhD, FAAN B a r b a r a A. Munjas, RN, PhD, FAAN
The American Academy of Nursing HIVIAIDS Nursing Care Summit convened nurse leaders from across the United States to discuss nursing responses to the HIV/AIDS epidemic. This final synthesis of the Summit includes recommendations regarding clinical practice, administration and policy, education, and research in the area of HIVIAIDS.
I
n January 1994, more than 300 nurses from across the United States met in Washington, D.C., to participate in the American Academy of Nursing (AAN) HIV/AIDS Nursing Care Summit. The members of the AAN Expert Panel on the Spectrum of HIV Infection (see Appendix 1) viewed the Summit as an opportunity to bring together experts in HIV prevention, patient care, and research to assess the impact of the first decade of the HIV/ AIDS epidemic on health and patient care. It was hoped that by integrating the perspectives of health care providers, educators, researchers, and consumers, plans for nursing care needs of the future could be formulated. This momentous event was sponsored by the AAN, in collaboration with the American Nurses Association (ANA), the Association of Nurses in Nurs Outlook 1996;44:229-34. Copyright © 1996 by Mosby-Year Book, Inc. 0029-6554•96•55.00 +0 3511175530
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AIDS Care (ANAC), the Oncology Nursing Association, the Division of Nursing, Bureau of Health Professions, Human Resources and Services Administration (HRSA), the Division of HIV Services, Bureau of Health Resources Development, HRSA, the National Institute of Nursing Research, the National Institutes of Health, and the AIDS Education and Training Center, HRSA (see Appendix 2 for a listing of Conference Planning Committee members). In 1989 an HIV/AIDS epidemic action agenda for nursing was set at a national invitational meeting convened by the Division of Nursing, U.S. Department of Health and Human Services, and the National Center for Nursing Research, National Institutes of Health. 1 In 1994 it was incumbent upon the discipline to update and solidify a national HIV/AIDS epidemic agenda for nursing because of the voracious spread of HIV infection in the United States
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and across the world, the urgent need for primary and secondary prevention in diverse populations, and rapidly emerging scientific knowledge, technology, and practice innovations in HIV/AIDS care. The 1994 Summit was guided by the following five objectives: (1) to examine the impact of the first decade of the HIV/AIDS epidemic on patient care and nursing in the United States; (2) to anticipate the impact of the second decade of the HIV/AIDS epidemic on patient care and nursing practice; (3) to prioritize a research agenda for patient care and nursing practice that is responsive to patient care needs anticipated during the second decade of the epidemic; (4) to make recommendations about academic and continuing education activities for nurses caring for HIV/AIDS patients during the second decade of the epidemic; and (5) to examine how the knowledge and experience gained in responding to the epidemic have contributed to our larger understanding of society, health, patient care, and nursing practice. At what was indeed a pivotal gathering of a cross section of nurses of all educational levels involved in HIV/AIDS clinical practice, administration and policy, education, and research, participants in the audience and at the podium joined together in dialogue during 3 days of keynote sessions that featured 45 invited speakers and eight moderators. Sessions covered such divergent topics as clinical disease progression, immunologic and viPortillo et al.
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rologic markers, epidemiological trends, neuropsychiatric sequela, substance misuse issues, access to health care, communitytargeted primary prevention, HIV infection in African-American and Latino families, symptom management, home care, case management, and family caregiving. Among the distinguished speakers at the Summit were Sandra Anderson, PhD, RN, of the World Health Organization, who discussed the global impact of HIV/AIDS; Marilyn Chow, DNS, RN, FAAN, who challenged participants about changes in the health care system; Lorretta Sweet Jemmott, PhD, RN, FAAN, who shared her empiric knowledge about promising new strategies for HIV prevention; Peter Ungvarski, MS, RN, FAAN, who provided a comprehensive overview of comorbidities of HIV/AIDS; and Ann Williams, EdD, RN, C, FAAN, who brought participants up to date on advances in clinical care of people with HIV infection. In addition, federal representatives highlighted resources for HIV/AIDS practice, education, and research, a panel of consumers shared their personal experiences in living with HIV/AIDS, and prominent HIV/ AIDS educators discussed a variety of education and training models. Finally, legislative updates were provided by Congressional staff and federal appointees. Various networking activities at the Summit included a display of posters that reported innovative research, education, and practice projects; technical assistance workshops facilitated by federal agency prograin staff; and luncheons and receptions. Without concurrent agenda to divide the focus and activities of participants, community-building among those in attendance and steady movement toward accomplishment of Summit objectives were evident. A palpable enthusiasm and energy built as participants worked together to examine the impact of the first decade of the HIV/AIDS epidemic on the health of communities and on nursing practice and to anticipate health care needs in the future. Throughout the Summit, participants were invited to submit written feedback describing implications in the areas of clinical practice, policy, education, and research. Designated "synthesizers" attended all the Summit sessions, reviewed the implications feedback from participants, and consulted written papers submitted by the speakers. Each synthesizer 230
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then addressed the community of participants at the conclusion of the Summit and suggested directions relating to HIV/AIDS for the discipline of nursing. Use of this innovative strategy for including the reflections and experiences of the wide array of participants in attendance enabled a richer formulation of implications than would otherwise have been possible. The purpose of this article is to relay the final recommendations presented by the designated synthesizers at the end of the Summit to the broader nursing community. This synthesis of implications for clinical practice, policy, education, and research is meant to invigorate empirical, clinical, and political efforts so that nurses might better meet urgent client and community needs in the face of HIV/AIDS. Readers interested in more specific substantive implications about particular topics are encouraged to consult the published volume of Summit proceedings available from the AAN. 2
Because o f health care protocols and changes in health care financing during the past 5 years, the site o f nursing care has shifted; as a result, persons with HIV/AIDS now receive a minimum o f hospitalbased acute care and must depend on communitybased ambulatory and home care services. O V E R V I E W OF THE CURRENT STATE OF AFFAIRS IN H I V / A I D S NURSING CARE At this juncture in our societal experience of HIV/AIDS, having passed through the first decade of the epidemic, many health care disciplines, including nursing, are critically reflecting upon the effectiveness of prevention methods, the usefulness of treatment regimens, the wisdom of disease conceptualizations, the appropriateness of research approaches, the adequacy of health and social policies, and the extent of educational outreach. 3"5Such evaluation is absolutely essential because, despite valiant efforts on the part of nurses and others, the incidence of HIV/AIDS is increas-
ing, stigmatization of those infected and affected by the virus is unabated, social and economic resources for persons living with HIV/AIDS are harder to come by, access to health care is shrinking, and we have no cure. HIV/AIDS is a nursing-intensive disease. Because Of health care protocols and changes in health care financing during the past 5 years, the site of nursing care has shifted; as a result, persons with HIV/AIDS now receive a minimum of hospital-based acute care and must depend on community-based ambulatory and home care services.6As infected persons live longer with the chronic conditions associated with AIDS and as more infectious diseases (e.g., tuberculosis) proliferate in persons whose immune systems are compromised, increased expertise in management of symptoms 7 and control of drug-resistant infectious diseases ~ has become necessary. The U.S. populations affected by HIV/ AIDS have also changed. In the first decade of the epidemic, gay men clearly experienced the ravages of this disease more than any other group. In the second decade of the epidemic, incidence is widening, and rapid increases in the rates of HIV infection have occurred among women and adolescents. Persons who inject drugs and their sex partners are also at escalating risk, and communities of color are now bearing the brunt of the spreading epidemic. In addition to these emerging population groups at risk for contracting HIV, men who have sex with men continue to have primary and secondary prevention needs of the utmost urgency. 9 Current nursing literature poses challenges and suggests that the Summit recommendations remain pertinent. Is the nursing workforce being adequately educated to care for persons with HIV/AIDS ?10 Is nursing care keeping pace with burgeoning knowledge of HIV/AIDS ?u Do we fully understand the nursing care needs of patients debilitated by HIV-related health conditions? 12'13Are nurse practitioners effective primary care providers for HIV-infected persons? Will current educational methods curb the spread of HIV/AIDS in women? 14 Are we reaching adolescents with our interventions? I5 What is the responsibility of nursing for improving access to health and social services for impoverished communities and communities of color? 16Is research by nurses adequately
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attending to social, cultural, and economic contingencies faced by populations at risk? Within the confines of this article, we cannot begin to perform a comprehensive review of all of the significant contributions made by nurses in the realms of practice, policy, education, and research, nor can we describe all of the work yet to be done. We can share the collective wisdom of the nurses who attended the HIV/AIDS Nursing Care Summit and thereby identify imminent issues. In addition, recommendations from the Summit can help guide the nursing disdpline in responding to the countless contemporary challenges of prevention and care for persons who are at risk for and infected with HIV. At a point not too far in the future, if we wish to do adequate battle with this devastating disease, nurses will need to reconnoiter and prepare yet another plan of action. CLINICAL PRACTICE
In exploring the provision of care to persons living with HIV/AIDS, 1994 Summit participants identified three challenges of great consequence: (1) an increasing number of disenfranchised clients; (2) increasing complexity of the care required by clients because of comorbid conditions, polypharmacy, and psychosocial problems; and (3) decreasing resources with which to provide the necessary care. These challenges enjoin several actions. First, successful models of care must be documented and disseminated. Even the
Journal of the Association of Nurses in AIDS Care, which is dedicated to the nursing care of persons with HIV/AIDS, is consistently in need of submissions about clinical practice. In particular, strategies for effective multidisciplinary collaboration must be delineated. The increasing complexity of care required by clients with HIV
The increasing complexity of care required by clients with HIV disease necessitates patient-centered multidisciplinary collaboration. disease necessitates patient-centered multidisciplinary collaboration. Although many individual nurses have been very successful at collaborative practice, specific strategies for effective collaboration NURSING OUTLOOK
have yet to be well described in the nursing literature. As major participants in multidisciplinary teams, nurses must be proactive in including nursing-sensitive client outcomes such as quality of life, individual and family coping skills, and role strain into the evaluation of client services. Nurses must assess and intervene with clients, recognizing the physical, social, cultural, and economic contexts of their lives. Beyond individualized care, nurses must develop culturally competent family-leveland community-level nursing interventions. These nursing therapeutics should include primary, secondary, and tertiary prevention. The value and effectiveness of adjunctive therapies aimed at improving immunologic status and quality of life in patients with HIV/ AIDS have yet to be fully examined. Nurses can be key players in this clinical testing. In addition, the role of information technology in the rapid dissemination of information, remote consultation, collaboration, and decision support warrants further exploration. Emerging information technologies offer a tremendous opportunity to extend HIV/AIDS nursing expertise beyond the epicenters of the epidemic. Nursing must also take an ethical stand and protest the inequities in treatment options available to socially, economically, and politically disenfranchised clients living with HIV/AIDS. Nursing must develop and support political actions aimed at changing health care policies related to the provision of resources for public health in general and for community-based AIDS care in particular. In identifying personnel concerns relating to the delivery of HIV/AIDS nursing care, Summit participants discussed the major challenges they face: (1) shortened lengths of stay in acute care settings, which results in an environment of crisis intervention rather than symptom management; (2) increasing levels of client acuity in home care; (3) lack of resources and support to foster long-term survivorship as nurses who provide direct care to persons with HIV disease; (4) lack of safety for health care providers in new care environments such as "crack houses," welfare hotels, and the streets; and (5) transmission risks that result when institutions decide not to stock the safer medical devices that are now available. Participants advocated that several actions be taken.
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First, both organized nursing and individual nurses in coalition with consumers and other health care providers must lobby for adequate personnel and resources to support HIV/AIDS nursing care in both
Emerging information technologies offer a tremendous opportunity to extend HIVIAIDS nursing expertise beyond the epicenters of the epidemic. institution- and home-based settings. Second, with the support of health care administrators and policy makers, nurses must examine methods for improving the safety of health care providers in community contexts of care and must insist that safer medical devices be supplied in all inpatient and outpatient facilities. Third, strategies on how nurses can maintain their own physical and mental health while providing care for persons with HIV/AIDS must be developed and disseminated. Fourth, nurses must insist on adequate remuneration, resources, autonomy, and support so they can continue to make a significant difference in the lives of those infected and affected by HIV/ AIDS. Through renewed and expanded actions, nurses can become more visible as a discipline and increase the public's recognition of the compassion, commitment, and competence with which those in HIV/ AIDS care approach their work. A D M I N I S T R A T I O N A N D POLICY
Participants at the Summit identified five major areas of need in the realm of administration and policy: (1) effective leadership by professional nursing organizations, (2) development of just legislation and policy, (3) adequate nursing personnel to accomplish optimal nursing care, (4) nursing input into specific HIV/AIDS-related policies and procedures, and (5) adequate financing for the provision of nursing care. On the basis of their combined experiences in clinical practice, research, teaching, administration, and policy development, participants offered a number of recommendations for how nurses might take action to meet these needs. To promote effective leadership, nurses need to support professional nursing organizations and urge them to be prominently Portillo et al.
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involved in the critical issues of the HIV/ AIDS epidemic. Specifically, nurses must encourage the AAN, the ANA, and our other constituent organizations to lobby for health care reform legislation that will develop a strong public health infrastructure. The erosion of public health facilities, resources, and services during the past two decades must be reversed, and the current Congressional attacks on funding of HIV care at both federal and state levels must be stopped. Only with a solid, wellfunded public health infrastructure can nursing effectively address the continuum of care required by individuals, families, and communities infected and affected by HIV/AIDS. Nurses must be better prepared and more strategically situated if they are to become vitally involved in developing HIV/AIDS legislation and policy at local, state, federal, and international levels. To accomplish these goals, participants recommended that (1) policy workshops become a standard component of State Nurses' Association meetings to help nurses develop their political skills; (2) organized nursing actively campaign for nurse candidates for political offices and nurse appointees for policy positions; and (3) nurses work with legislators to develop advocacy packages for clients living with the chronic circumstances of HIV/AIDS. The growing number of persons infected and affected by HIV demands that the nursing profession take action to ensure that there are adequate nursing personnel to accomplish optimal nursing care. Summit participants recommended that the AAN, in collaboration with the A N A and the Division of Nursing, Bureau of Health Professions, HRSA, work to develop sufficient numbers of entry level and advanced practice nurses who are competent to offer continuum-of-care services to individuals and families living with HIV/ AIDS in a variety of institutional and community settings. Summit participants recommended specialty certification in HIV/ AIDS nursing as one means to this end. With the impetus of this consensus, the A N A C has developed such a program and will offer a national certification examination in 1996. If nursing is to make a difference in the way the health care delivery system is structured, it must be in the forefront of shaping HIV/AIDS policy. Through its con232
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stituency organizations, nursing can form alliances with the AIDS Action Council, the Consortium for Citizens with Disabilities, and similar advocacy organizations to coordinate legislative efforts on behalf of persons with HIV/AIDS. By building coalitions among organizations and establishing both formal and informal networking ties, nursing can more effectively disseminate information and achieve a powerful
Only with a solid, wellfunded public health infrastructure can nursing effectively address the continuum of care required by individuals, families, and communities infected and affected by HIV/AIDS. synergy. Through its government affairs committees, nursing can examine the dual impact of health care reform and welfare reform on persons with HIV/AIDS. One Summit participant suggested that the services provided to persons with HIV/AIDS be used as an indicator or tracer of access and quality of service as transitions are made in funding and administration of health care and social services. Nurses need to lobby for both community-based and clinical service planning structure and not allow the profession to be split over issues of primary prevention versus tertiary prevention. Multidisciplinary collaboration in designing HIV policy and care delivery demonstration projects could be facilitated by alliances between organized nursing and organized medicine. For instance, a joint project between the AAN and the American Academy of Family Practice might focus on home care interventions. Nursing must keep its eye on the populations and the settings most at risk. For example, what resources and services are needed to bring a halt to the increasingly rapid transmission of HIV among adolescent populations? What regulations and enforcement strategies are needed to control the spread of tuberculosis in client care settings? In summary, nursing needs to be more visible to the public and to policy makers, particularly in relation to its role and expertise in the care of persons with HIV/AIDS.
Adequate financing for the provision of nursing care is essential. The costliness of the AIDS epidemic is proving overwhelming for individuals and families. Persons who are uninsured or underinsured are increasingly unable to penetrate the barriers between themselves and the health care they need. Reimbursement incentives for cost-effective, comprehensive services across the care continuum from health promotion to hospice are needed; such reimbursement must be based on services and not on particular provider groups. NURSING
EDUCATION
At the 1994 Summit, participants reaffirmed the importance of having programs at all educational levels to prepare nurses to respond effectively to the problems posed by the HIV/AIDS epidemic. Participants noted that educational deficits identified as far back as 1989,1 such as the development and implementation of core curricula in HIV/AIDS care at each education level, have not been adequately addressed. The ANAC took this Summit consensus as a charge and has since developed a core curriculum for HIV/AIDS nursing. :7 Several other features of educational programs were seen as pivotal. Nursing education in HIV/AIDS must operate at multiple levels and include undergraduate, graduate, continuing education, and inservice programs. At the base it must contain solid substantive preparation in epidemiologic pattems of the epidemic; family and community ramifications of HIV/ AIDS; primary prevention strategies; clinical manifestations of HIV/AIDS; nursing assessment, diagnosis, and management of common illnesses associated with HIV progression; psychosocial care of persons infected and affected by HIV; and related legal and ethical issues. All education offerings must be culturally relevant to prepare students to meet the needs of diverse populations. Programs should help nurses bridge the boundaries that impede care for people with HIV/AIDS, such as the boundaries between hospital, community, and home care settings, those between professional and lay caregivers, and those between the multiple health professions. Educational programs must be futureoriented. Summit participants issued a clarion call for education that prepares today's nurses to care for the clients of to-
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morrow. The HIV/AIDS epidemic has engendered rapid change and expansion in the knowledge base, technology of care, and political nature of illness, treatment, and prevention. Nursing education in this area must therefore be flexible, innovative, and focused on imminent developments, not mired in maintaining the status quo. Finally, Summit participants recognized that many of the first cadre of nurses who have provided care to persons infected and affected by HIV have begun to leave because they are burned out after a decade of intense involvement. What is academic nursing's role in recruiting nurses to continue to care for this population? How can education help increase understanding and prevent burnout? Fagin and Lynaugh 18have pointed out that not only is nursing approaching the twenty-first century without agreement on the educational level for entry into practice, but it has also allowed its educational system to become fractionalized. Lack of cohesion and coordination of nursing education has paralleled the paucity of coordination in HIV/AIDS practices and policies that has resulted from having neither a national health plan nor a national HIV/ AIDS plan. Each school of nursing and each professional development program currently determines how to focus education about the complexities of caring for HIV/AIDS clients and their families and communities. While the lack of integration has spawned creativity in individual programs, it has left serious gaps at all levels of nursing education. Leadership from organized nursing is necessary to close these gaps. Closer and more systematic collaboration between regional AIDS Education and Training Centers and schools of nursing may be one strategy for enhancing the integration needed to prepare knowledgeable and culturally competent nurses who can meet the challenges of primary, secondary, and tertiary prevention in the age of HIV/AIDS. N U R S I N G RESEARCH
The future of nursing research about HIV/ AIDS is tied to nurses' willingness to respond to the real challenges that are grappled with on a daily basis by communities, families, and individuals who are infected and affected by HIV. The 1994 AAN Summit on HIV/AIDS offers four principles to serve as a framework to guide NURSING OUTLOOK
such investigation: (1) cultural and contextual specificity, (2) complexity, (3) community-based intervention, and (4) collaboration. Nurses must be culturally and contextually specific in all research endeavors about HIV/AIDS. The types of clients and the contexts in which they live on a dayto-day basis as they deal with HIV/AIDS are sufficiently diverse to warrant targeted study. Cultural understanding of risk behavior, risk perception, risk relapse, and risk reduction in particular communities is vital. Summit participants urged the discipline to take action to ensure the inclusion of disenfranchised communities. They insisted that nurses do targeted research about, with, and for underserved, understudied populations who are at risk for and living with HIV. They emphasized the importance of addressing the particular needs of populations such as African-Americans, Hispanics, gay men, adolescents, women, impoverished families, incarcerated men, incarcerated women, children, homeless persons, injection drug users, partners of injection drug users, undocumented immigrants, and rural dwellers. Nurses need to work within social networks to affect community norms so that youth and adults can be supported in their personal HIV prevention efforts. Participants also eloquently stated the need for baseline descriptive understanding of the symptom management needs of persons who are living with HIV/AIDS. They suggested that nurses pay heed in research not
Cultural understanding of risk behavior, risk perception, risk relapse, and risk reduction in particular communities is vital
only to specific symptomatology but to context, that is, the sociocultural and economic environments in which clients are managing HIV/AIDS symptoms. For example, how can nurses most effectively reduce the burden of symptoms for clients in environments in which racism, sexism, impoverishment, homophobia, and fear of HIV-infected people are still alive and well? Nursing research about HIV/AIDS
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must capture the complexity of the health conditions, health care needs, and environmental circumstances of infected persons. At the Summit, participants spoke again and again about the following complexities: (1) HIV-related disease processes, with their multisystem insult and failure; (2) immune responses, iatrogenic infections, side effects from medical regimens, and devastating comorbidities; (3) highly intricate care activities in which nurses must be prepared to engage; (4) limitations in housing, economic resources, access to health care, and social support for families struggling with HIV/AIDS; and (5) diverse social, political, and economic environments in which HIV is spread. Participants asked for studies that make the links in this holistic, complex picture of HIV/AIDS. For instance, they wanted to know the following: (1) What are the connections among violence, childhood trauma, sexual abuse, and HIV for women? (2) What are the connections among homelessness, unsafe environments, survival sex, and HIV for youth? (3) What are the connections among insurance status, access to health care, outcomes, and disease progression? (4) What are the connections among drug and alcohol use, anticipation of partner reactions, gender subordination, and sexual risk for HIV? Community-based intervention research must be supported. Nursing needs to develop empirically sound communitybased models of primary prevention and effective, outcome-tested communitybased models of care. Summit participants made it clear that they did not discount acute care services but were recognizing the continuum of care that nurses value. Within this continuum of communitybased care are the predictably unpredictable periods of HIV disease and crisis that may require hospitalization. Collaboration is an essential element in effective nursing research about HIV/ AIDS. Vital collaborators include clients, families, community-based organizations, nurses involved in the direct care of HIVinfected clients, nonprofessional caregivers such as community outreach workers, and research colleagues in other disciplines. Because of the nature of their work, nurses have natural in-roads to making these cooperative connections: they are the largest cadre of direct care providers, and they already have relationships with clients, Portillo et al.
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colleagues, and communities and need only nurture them and move them in new directions. Collaborations through caring connections with people who have HIV/ AIDS are perhaps the most powerful. As presenter Barbara Aranda-Naranjo sug-
Collaborations through caring connections with people who have HIVIAIDS are perhaps the most powerful. gested to Summit participants, when nurses form we-we relationships with clients instead of we-them relationships, they till the soil of respect and dignity to make a fertile ground for compassionate investigation. CONCLUSION On behalf of all of the participants at the AAN's H1V/AIDS Nursing Care Summit, we share our hopes and offer these recommendations to the nursing community. HIV/AIDS nursing can make a difference during the next decade. Nurses can use the power of their clinical practice, their administrative and policy influence, their education, and their research to do the following: • Secure resources for primary prevention and nursing intervention programs that work • Ensure that those at risk for HIV have access to the knowledge, skills, apparatus, legal protection, support, and resources that they need to prevent HIV transmission • Give voice to the needs of men, women, and children who are living with HIV/AIDS • Protest the fact that many clients have inadequate access to appropriate health care services • Insist that those who are experiencing the illnesses associated with HIV/ AIDS be allowed the most competent nursing care that we have to offer. • REFERENCES 1. PhillipsTP, Bloch D, editors. Nursing and the HIV epidemic: a national action agenda. Proceedings of an invitational workshop. Washington (DC): Division of Nursing, U.S. De-
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partment of Health and Human Services, and National Center for Nursing Research, 1990. 2. Holzemer WL, Portillo CJ. Tile HIV/AIDS nursing care summit proceedings. Waldorf (MD): American Academy of Nursing, 1994. 3. Clarke A. What is a chronic disease?The effects of a re-definition in HIV and AIDS. Soc Sci Med 1994;39(4):591-7. 4. Fee E, Krieger N. Thinking and rethinking AIDS: implications for health policy. Int J Health Serv 1993;23(2):323-46. 5. Stryker J, Coates TJ, DeCarlo P, HaynesSanstad K, Shriver M, Makadon HJ. Prevention of HIV infection: looking back, looking ahead. JAMA 1995;273(14):1143-8. 6. Sowell R. Community-based HIV case management: challenges and opportunities. J Assoc Nurses AIDS Care 1995;6(2):33-40. 7. Hench K, Anderson R, Grady C, Ropka M. Investigating chronic symptoms in HIV: an opportunity for collaborative nursing research. J Assoc Nurses AIDS Care 1995;6(3): 13-7. 8. Anastasio CJ. HIV and tuberculosis:noncompliance revisited. J Assoc Nurses AIDS Care 1995;6(2):11-23. 9. SowellR. Gay men should not be forgotten. J Assoc Nurses AIDS Care 1995;6(1):15-6. 10. Hurley PM, McGriff EP. Nursing education and the HIV/AIDS pandemic. J AssocNurses AIDS Care 1995;6(1):49-52. 11. Flaskerud ]H, Ungvarski PJ. HIV/AIDS: a guide to nursing care. 3rd ed. Philadelphia: WB Saunders, 1995. 12. Baigis-Smith J, Gordon D, McGuire DB, Nanda J. Health care needs of HIV-infected persons in hospital, outpatient, home, and long-term care settings. J AssocNurses AIDS Care 1995;6(6):21-33. 13. HolzemerWL, Henry SB, Reilly CA, Portillo CJ. Problemsof persons with HIV/AIDS hospitalized for pneumocystiscarinii pneumonia. J Assoc Nurses AIDS Care 1995;6(3):23-30. 14. Stevens PE. Impact of HIV/AIDS on women in the United States: challenges of primary and secondary prevention. Health Care Women Int 1995;16:577-95. 15. Jemmott JB III, Jemmott LS. Interventions for adolescents in community settings. In: DiClemente R, Peterson J, editors. Preventing AIDS: theory and practice of behavioral interventions. New York:Plenum, 1994. 16. Seals BF,SowellRL, Demi AS, Moneyham L, Cohen L, Guillory J. Falling through the cracks: social service concerns of women infected with HIV. Qualitative Health Res 1995;5(4):496-515. 17. ANAC's core curriculumfor HIV/AIDS nursing. Philadelphia: Nursecom, 1996. 18. Fagin CM, LynaughJE. Reaping the rewards of radical change: a new agenda for nursing education. Nuts Outlook 1992;40:213-20.
CARMEN J. PORTILLO is an assistant professor at the School of Nursing, University of California, San Francisco.
PATRICIA E. STEVENS is an assistant professor at the School of Nursing, University of Wisconsin-Milwaukee. SUZANNE HENRY is an associate professor at the School of Nursing, University of California, San Francisco.
JUDITH M. SAUNDERS is an assistant professor at the Department of Nursing, University of Southern California, Los Angeles. INGE CORLESS is an associate professor at the Massachusetts General Hospital Institute of Health Professions, Boston. BARBARA A. MUNJAS is a professor of Psychiatric Nursing at the School of Nursing, Virginia Commonwealth University, Richmond. APPENDIX
1.
Members of the AAN's Expert Panel on the Spectrum of HIV Infection included Sandra Anderson, PhD, RN; Judith Baigais-Smith, PhD, RN, FAAN; Marie Annette Brown, PhD, RN, ARNP, FAAN; Felissa Cohen, PhD, RN, FAAN; Inge B. Corless, PhD, RN, F A A N ; Beverly Hall, PhD, RN, FAAN; William L. Holzemer, PhD, RN, FAAN (chairperson); Loretta Jemmott, PhD, RN, FAAN; Helen Miramontes, MSN, RN, FAAN; Clifford Morrison, MS, MSN, RN, FAAN; Barbara Munjas, PhD, RN, FAAN; Kathleen Nokes, PhD, RN, F A A N ; Judith Saunders, DNSC, RN, FAAN; Laurie Sherwen, PhD, RN, FAAN; Suzanne Smeltzer, EdD, MS, RN, FAAN; Richard Sowell, PhD, RN, FAAN; Peter Ungvarski, MS, RN, FAAN; and A n n Williams, EdE, RNC, APRN, FAAN.
A P P E N D I X 2.
Members of the Conference Planning Committee for the A A N HIV/AIDS Nursing Care Summit included Marie Annette Brown, PhD, RN, ARNP, FAAN; Anita Eichler, MPH, MA; R o A n n e Dahlen Hartfield, PhD, RN; William L. Holzemer, PhD, RN, FAAN; Loretta Sweet Jemmott, PhD, RN, FAAN; Doris Mosley, PhD, RN; Thomas Phillips, PhD, RN, CS, FAAN; Mary E. Ropka, PhD, RN, FAAN; Barbara Russell, PMH, RN, CIC; and A n n B. Williams, EdD, RNC, FAAN. Leadership was provided by Jan Heinrich, PhD, RN, FAAN, Executive Director of the A A N .
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