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减少不确定:共享HIV/AIDS护理知识
AIDS护理护士协会第13届年会
2000年11月1-5日
波多黎各
Reducing
Uncertainty: Sharing Nursing Knowledge About HIV/AIDS
Thirteenth Annual Conference of the Association
of Nurses in AIDS Care
November 1-5, 2000
San Juan, Puerto Rico
Kathleen M. Nokes, PhD, RN, FAAN
By 1986, it was clear that a specialty nursing organization was needed to provide a clear voice to all nurses, other healthcare professionals, and the public about nursing's response to the AIDS epidemic. This organization is the Association of Nurses in AIDS Care (ANAC). Through its national and regional associations, ANAC has informed nurses about state-of-the-art care through its Journal of the Association of Nurses in AIDS Care and other publications, national and regional conferences, and links with other consumer and provider AIDS organizations. One of the major challenges of the AIDS epidemic has been coping with uncertainty. Through rapid dissemination of accurate information, ANAC has reduced that uncertainty and facilitated the work of nurses who work with persons with HIV/AIDS and their support systems.
The first Evidence-Based Practice in HIV Symptom Management conference was held on November 1, 2000, immediately preceding the13th National ANAC conference in San Juan, Puerto Rico. The theme of this year's conference, Chasing a Changing Tide: Complex Clients, Care, and Communities, was first addressed by looking back. This report will integrate material from both the preconference and the full conference and is organized around the 3 main conference topics: complex clients, complex care, and complex communities. A future supplement of the Journal of the Association of Nurses in AIDS Care will be devoted to the preconference.
Peter Ungvarski, MS, RN, FAAN,[1] Clinical Nurse Specialist at the Visiting Nurse Service of New York, New York City, New York, used photographs and humor in his presentation to balance some of his painful memories. Mr. Ungvarski has been actively involved in providing care to persons with HIV/AIDS and shaping policies through his activism and publications since the first gay men entered the New York City hospice where he worked in 1980. Starting in 1981 and continuing through 2001, he characterized each year according to a predominant theme, starting with "confusion" and ending with "challenges." Nursing milestones included 1983 as the year that the New York State Nurses Association issued a position paper on the nursing of AIDS patients and the first dedicated AIDS unit at San Francisco General Hospital was created. In 1988, graduate-level courses in the nursing of persons with AIDS were offered in San Francisco at the University of California, followed by the first federally funded subspecialty in Nursing of Persons with HIV/AIDS at Hunter College, City University of New York. When Mr. Ungvarski presented the chronology, he drew from the literature and policy documents, but his presentation was particularly compelling since he lived through the events and continues to face the challenges.
To illuminate Dr. Cambridge's comments, Daniel Pimentel,[3] an activist living in Puerto Rico, described his experiences as a person who has lived with HIV/AIDS for more than 17 years. He vividly presented how he embraces life and welcomes each day. Although he is participating in a number of clinical trials, he also believes that he has power over his own healing. He advised the audience that when they are interacting with people who hold beliefs that they don't understand, they should "at least open a window on understanding." His remarks enriched Dr. Cambridge's presentation because he provided a specific example of how providers can work with complex populations who use a variety of strategies to maintain their health. He explained how he combines folk remedies, spirituality, and medications from clinical trials to stay healthy and maximize each day and that he expects his healthcare providers to treat him as an active participant in decisions about his care.
Marilyn Volker, EdD,[4] a private consultant in Miami, Florida, presented information about transgender issues, examining the complexity of sexuality. She explained that "sex is between the legs; gender is between the ears; and orientation is who you are attracted to." Through the use of case examples, she described how transgender clients engage in behaviors that increase their risk of HIV infection. She emphasized that most transgender clients identify themselves as heterosexual and that it is essential to ask clients how they want to be identified. She encouraged providers and clients to recognize that their clients are experiencing transitions by seeing gender role changes as a process. To illustrate, she gave the example of a 6-year-old whose name was Andrew but who wanted to be called Annette Claudine. To respect the wishes of the 6-year-old but also to help the family in their transition, a compromise name of AC was agreed upon. Dr. Volker discussed the complexity of gender identity, gender role, and orientation and suggested that providers analyze their own reactions and values and try to create an accepting environment as they work with transgender clients. The International Foundation for Gender Education is a helpful organization, a nonprofit group providing education and resources for the transgender community and the general public.
Since HIV infection is associated with intravenous drug use and illegal drug use is a common reason for arrest, there were a number of sessions addressing incarcerated HIV-infected clients. Steven Harris, PharmD, BS,[5] Director of Pharmacy Services at Correctional Health, Jackson Health Systems in Miami, Florida, identified the challenges of working with people who are under the control of the corrections system and who are often transferred from one facility to another or released before results of diagnostic tests can be addressed. He reported that in the Miami/Dade County prisons, HIV seroprevalence rates were higher in younger women (ages 25 years and under) and older men (ages 25 years and older). He shared his impression that HIV infected people who were not feeling well would commit a crime to get incarcerated in order to access healthcare. Mr. Harris reported that all 16 of the antiretroviral medications were accessible to incarcerated clients in the Miami/Dade Country correctional system along with the spectrum of medications to treat other medical conditions. Screening for tuberculosis is voluntary, which raised some concerns among the participants.
Anne Hughes, MN, RN, FAAN,[8] a Clinical Nurse Specialist at Laguna Honda Hospital, San Francisco, California, discussed how the evidence-based practice framework could be used by practitioners to improve nursing care. To illustrate this point, she used published data from a continuous quality assurance study on adherence, a randomized, controlled clinical trial of 3 types of mouthwash for clients with mucositis, and a review of the literature on pain treatment of intravenous drug users. Ms. Hughes acknowledged that resistance to adoption of the evidence-based practice framework should be expected since change is never comfortable or is it a cultural norm. Use of practice standards developed by multidisciplinary teams can guide nursing practice. However, especially in a field such as HIV, information changes so quickly that print material is often outdated before it can be published. Electronic communication of information solves this problem, and there was some discussion that the ANAC Core Curriculum, which is now being revised, may be put online so that it can be updated regularly.
Cal Cohen, MD,[9] from New England AIDS Education and Training Center, Harvard Medical School, Boston, Massachusetts, used humor and his large scope of knowledge to discuss medication options for treatment-experienced patients. He differentiated treatment failure from intermittent increases in viral load, or "blips." Blips are transient increases in viral load and are not caused by medication failure that is characterized by a persistent rise in viral load. He related that treatment failure was less of an issue when clients missed doses of drugs with longer half-lives and emphasized the importance of measuring drug levels in different clients to determine bioavailability, since blood levels are directly associated with drug effectiveness. Dr. Cohen predicted that at least 3 new drugs would be available in the future: DAPD-101 (nucleoside), tenofovir (few side effects), and a new class of drugs called fusion inhibitors (T20-205). He speculated that taking a drug holiday before starting a new regimen might add to the potential effectiveness of the new regimen.
Dr. Cohen seemed optimistic about the future and shared his hope that HIV infection could be controlled through the skilled use of available and future medications. He added that clients are often confused by the results of their diagnostic tests. It is important that healthcare providers clarify the difference between a transient and steady increase in viral load and encourage the client to stay with what is feared as a failing regimen until a repeat blood test can be completed. Many clients are pleased to learn about structured treatment interruption, and one speaker remarked that it was often hard to convince clients to resume their regimen after an interruption since many clients reported feeling better when they were off medications. Since the development of medications to treat HIV disease, a major focus of nursing interventions has been promotion of adherence through treatment education. As the field becomes more complex, it is essential that nurses continuously update their knowledge so that HIV-infected clients perceive the nurses as important sources of health-related information.
Psychosocial issues. Merrilyn Johnson, PhD, RN, CNM,[10] from The International Center of Research for Women, Children, & Families, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania, described an intervention using a process-of-life review to prevent depression and promote mental health in persons living with HIV/AIDS. The intervention consisted of 8 weekly visits of one-to-one sessions with the therapist using an interactive method. Sample size was small (n = 10), but there was a statistically significant improvement in scores on the Beck Depression Inventory (mean 8.56 to 4.22, P = .0078). There were no significant changes in hopelessness, life satisfaction, affect-balance, or self-esteem. With a larger sample size and further testing of this strategy, it may be concluded that the mental health of persons living with HIV/AIDS may be enhanced through this nursing intervention.
Judith L. Neidig, PhD, RN,[11] from Internal Medicine, College of Medicine and Public Health, Ohio State University, Columbus, Ohio, described research in which participants (n = 60) completed either a twice-weekly aerobic exercise training program or continued with usual exercise. Preliminary findings indicated that regular exercise resulted in a significant reduction in depressive symptoms as measured by the Center for Epidemiological Studies Depression Scale and trends of improvement on the Beck Depression Inventory. Investigators also found that results of those 2 instruments were highly intercorrelated (r = 0.71). One of the limitations of this research was that 12 exercisers failed to complete the intervention. In light of the high intercorrelations of the 2 instruments to measure depression, investigators concluded that in future studies, only one or the other may be used, which would decrease respondent burden in the completion of research studies. The high drop-out rate of exercisers emphasizes the point that some interventions may be helpful but that people are not ready to adapt their schedules to incorporate them on a weekly basis.
Fatigue/sleep. Anthony Adinolfi, RN, MSN, ANP,[12] Assistant Clinical Professor at Duke University School of Nursing, Durham, North Carolina, discussed measurement issues related to fatigue and reported that fatigue is the seventh most commonly reported symptom in people with various health problems. He identified 8 causes of fatigue: 1) lack of rest, exercise, or proper diet; 2) fever secondary to disease and/or drugs; 3) sleep disturbances; 4) side effects of medications; 5) anemia; 6) depression/anxiety; 7) use of recreational substances such as alcohol, tobacco, or stimulants; and 8) pathologies such as infections or hormonal dysfunction. He emphasized the importance of assessing the cause of fatigue and tailoring interventions to address the underlying etiology.
Kathryn Lee, PhD, RN, FAAN,[13] Professor at the University of California at San Francisco (UCSF), San Francisco, California, addressed fatigue in people with HIV/AIDS and presented her research with infected women in San Francisco. Dr. Lee described research that examined personal, social, and health variables related to fatigue in 100 HIV-infected women and the pilot-testing of a sleep hygiene intervention with 30 infected women. The team found that fatigue was related to sleep rhythm, depressive symptoms, and disturbed sleep. The Sleep Hygiene protocol, which can be implemented by persons with limited resources, was effective in improving perception of sleep quality. "BETTER," as Lee's Sleep Hygiene protocol is called, consists of making adjustments in 6 areas to improve sleep quality: bedtime environment, eating/drinking, tension/anxiety, time in bed, exercise, and rhythms.
Kathleen Nokes, PhD, RN,[14] Professor at Hunter College, City University of New York, Hunter-Bellevue School of Nursing, New York City, New York, used the UCSF symptom management model[15] to identify correlates of sleep quality as measured by the Pittsburgh Sleep Quality Index[16] in persons living with HIV/AIDS. Both state and trait anxiety as measured by the Spielberger State/Trait Anxiety instrument[17] were negatively related to sleep quality. Mental health and symptom severity issues need to be considered when designing interventions to enhance sleep quality along with environmental characteristics such as separate sleeping space, noisy rooms, and presence of bed partners.
Diarrhea. Joyce Anastasi, PhD, RN, FAAN,[18] Associate Professor and Director at the Center for AIDS Research, Columbia University, New York City, New York, described research on diarrhea and wasting in persons with HIV/AIDS. She said that HIV enteropathy was less of a problem now than it has been in the past but that chronic diarrhea related to drug regimens was currently the most common cause of diarrhea. Dr. Anastasi described the importance of collecting data related to stool frequency, stool consistency, and weight gain/loss. One ongoing intervention study consists of 8 weeks of one-to-one tailored sessions in which the experimental group learns about diet and behavioral strategies to control diarrhea. Outcome measures include data about diet, stool patterns, and quality of life. In another study, which was recently funded, Dr. Anastasi plans to study the effect of acupuncture and moxibustion (in which an herb is lit and held over acupuncture points) to reduce the frequency and improve the consistency of nonpathogen-related chronic diarrhea. This experimental control trial has 4 treatment arms in which the effect of acupuncture and/or moxibustion is varied to examine the effect on stool pattern and quality of life.
Nutrition. Glenda Winson, RN, MSN, ACRN,[19] Clinical Studies Nurse at St. Luke's Hospital, New York City, New York, discussed HIV wasting and loss of lean body mass. She differentiated malabsorptive from colitic diseases and said that people feel bloated, so they eat less. She suggested that at each encounter, nurses should assess changes in body structure through regular weights, measuring skin folds, and evaluating mid-upper arm circumference. She cautioned nurses to recognize that clients can maintain normal weights and still be malnourished and that bioelectrical impedance analysis measurements can be used with greater precision. Ms. Winson cautioned that medications such as growth hormone can alter blood glucose levels and that nurses should actively monitor for undesired consequences of treating HIV wasting.
Joyce Keithley, RN, DNSc, FAAN,[20] Professor at Rush University College of Nursing, Chicago, Illinois, discussed antiretroviral-related nutritional problems and addressed: 1) lipodystrophy syndrome, including dyslipidemia, hyperglycemia/insulin resistance, and body composition changes; 2) bone disorders, including osteopenia, osteoporosis, avascular necrosis of the hip, and vertebral compression fractures; 3) mitochondrial toxicity, including increased lactate and nutritional problems such as hepatic steatosis; and 4) drug-nutrient interactions, including the effect of grapefruit juice and St. John's wort on blood levels of protease inhibitors. The controversy over whether to recommend aerobic and resistance training exercise in light of the growing incidence of osteoporosis was addressed. In light of the developing toxicities to long-term treatment of HIV disease, nurses are cautioned to investigate presenting symptoms seriously and advocate for clients who are trying to balance continuing taxing medication regimens and quality-of-life issues.
The long-term use of antiretroviral drugs seems to be generating a number of structural and functional abnormalities related to carbohydrate, protein, and fat metabolism in persons with HIV/AIDS, many of which are affecting quality of life. Cade Fields-Gardner, MS, RD, LD,[21] Director of Services and Vice President of Program Development at The Cutting Edge, Cary, Illinois, emphasized that practice precedes and guides research. She described nutrition-medication interactions and advised the audience to look to the course of other inflammatory illnesses and apply lessons learned in those cases to the clinical course of HIV/AIDS and its treatment. Ms. Fields-Gardner has published a manual that can be accessed through the web site, http://www.NutritionClassroom.com.
Peripheral neuropathy. Kristin Kane Ownby, RN, PhD,[22] from University of Texas Health Science Center, School of Nursing, Houston, Texas studied the effects of ice massage on the feet of patients with AIDS and peripheral neuropathy. There were 3 experimental conditions: 1) 100 cc of crushed ice in a moist towel; 2) dry towel massage; and 3) no treatment. Although neither pain nor sleep quality were significantly improved, 45% of the participants receiving ice massage did report a decrease in pain as measured on a visual analogue scale. Although the results were not statistically significant, perhaps due to small sample size, there could be clinical significance. Dr. Kane Ownby plans to extend the research by altering the way in which the ice is administered. She is considering use of an "icepop," which would result in the direct application of ice to the bottom of the feet. She cautioned against immersion of the feet in ice water, which can increase blood pressure.
In summary, there were a number of overall "take-home" messages from this conference: