There has been a major shift in the nursing of persons with HIV/AIDS in resource rich countries after 1996. With the introduction of highly active anti retro-viral medications targeting different phases of the host/virus interaction, HIV rapidly changed from an acute, often terminal, infection to a chronic illness with a long disease trajectory. Symptom management and identification of strategies to promote treatment adherence emerged as important foci of nursing research. In communities like the United States where medications are readily available through government-supported medication access programs, nursing research moved its area of concentration from the needs of tertiary-care patients to community-living clients and their support systems.
Goldrick, Baigis, Larsen, and Lemert (2000) reviewed the nursing research literature (1986 to 1997) and found that, although many descriptive and/or correlational studies described clinical problems experienced by HIV positive persons, they believed that future studies should focus more on clinical interventions. The Delphi technique was used with expert members of the Association of Nurses in AIDS Care (Sowell, 2000) to identify HIV/AIDS research priorities into the 21st century.
Five categories were identified:(a) HIV community-level education and prevention, (b) development of more tolerable drugs, (c) prevention focusing on individual or specific group behavior, (d) vaccine development, and (e) development of new and more effective drugs. Hare (2003) identified the six major categories of National Institute of Nursing Research funded research as: (a)biobehavioral and sociocultural research in HIV prevention and intervention, (b) risk re-duction, (c) interventions to improve adherence to drug regimens, (d) end-of-life care, (e)symptoms, and (f) shifting trends including informal caregiving. Symptoms can emerge from the disease pathology, treatment strategies, and comorbidities. Nurse researchers have examined individual symptoms such as diarrhea (Anas-tasi & McMahon, 2003), but through descriptive studies that used instruments suchas the SSC-HIV (rev) (Holzemer, Hudson, Kirksey, Hamilton, & Bakken, 2001), it wasfound that HIV positive persons usually report more than one symptom. The UCSF International HIV/AIDS Nursing Research
Network identified six commonly reported symptoms: anxiety, depression, diarrhea, fatigue, nausea, and neuropathy. Identification of self-care symptom management strategies were described for anxiety and fear (Kemppainen et al., 2002), neuropathy (Nicholas et al., 2002), and fatigue (Corless et al., 2002).In order to suppress the HIV viral load, adherence with prescribed medications mustbe almost perfect. Research with chronically ill populations has demonstrated medication adherence rates as low as 30%. Therefore, nurse researchers have developed many different protocols to examine strategies that promote treatment adherence and informed decision making since incomplete viral suppression cannot only harm the infected person but promote viral mutation and resistance.
Other interventions tested by nurse researchers have focused on health promotion behaviors such as regular aerobic exercise (Baigis et al., 2002). The two major routes of HIV transmission are sexual and sharing blood products often, through injection drug use. Populations living with HIV/AIDS vary vastly in ethnicity, socioeconomic, and educational status. Physical comorbidities such as hepatitis, especially hepatitis C, must also be considered. Differences must be addressed in the development of intervention protocols. Recruitment issues, especially the use of incentives, must be carefully considered to avoid situations where the incentive becomes such an important benefit that the potential study participant minimizes the risk. Retention is a major issue when the study population is not in stable housing and does not have regular access to phones or mailing addresses.
Depending upon the nature of the intervention, the setting may be the home, primary care setting, hospital unit, or community based organization. Some nurse researchers have conceptualized their interventions using principles of models from other disciplines, such as the Stages of Change model, while others used nursing theorists such as the Personalized Nursing LIGHT model based on Martha Roger’s science of nursing (Anderson et al., 2003). Many of the intervention studies require multiple points of contact over time, which can be difficult to achieve in a highly mobile, resource-poor population.
Findings emerging from these behavioral intervention studies may seem disappointing since there is often not a significant statistical improvement in the outcome variable after the intervention. This lack of significant findings may be due more to the lack of sensitivity in the instruments being used than in the effectiveness of the intervention. Nursing interventions are usually noninvasive and care is used to avoid harm. Rather than being discouraged by a lack of significant improvement, nurse researchers are using these findings to refine their interventions and choose more sensitive instruments to measure change overa relatively short period of time.