Carmen J. Portillo

Exploring HIV Stigma and Quality of Life for Persons Living With HIV Infection

&NA; The purpose of this study was to explore the potential contribution of perceived HIV stigma to quality of life for people living with HIV infection. A cross‐sectional design explored the contribution of demographic variables, symptoms, and stigma to quality of life in an international sample of 726 people living with HIV infection. Stigma independently contributed a significant 5.3% of the explained variance in quality of life, after removing contributions of HIV‐related symptoms and severity of illness. This study empirically documents that perceived HIV stigma had a significantly negative impact upon quality of life for a broad sample of people living with HIV infection.

Symptom Experience in HIV-Infected Adults: A Function of Demographic and Clinical Characteristics

Personal characteristics that interact with both HIV diagnosis and its medical management can influence symptom experience. Little is known about how symptoms in populations with chronic illness vary by age, sex, or socioeconomic factors. As part of an ongoing prospective longitudinal study, this report describes symptoms experienced by 317 men and women living with HIV/AIDS. Participants were recruited at HIV clinics and community sites in the San Francisco Bay Area. Measures included the most recent CD4 cell count and viral load from the medical record, demographic and treatment variables, and the 32-item Memorial Symptom Assessment Scale to estimate prevalence, severity, and distress of each symptom and global symptom burden. The median number of symptoms was nine, and symptoms experienced by more than half the sample population included lack of energy (65%), drowsiness (57%), difficulty sleeping (56%), and pain (55%). Global symptom burden was unrelated to age or CD4 cell count. Those with an AIDS diagnosis had significantly higher symptom burden scores, as did those currently receiving antiretroviral therapy. African Americans reported fewer symptoms than Caucasians or Mixed/Other race, and women reported more symptom burden after controlling for AIDS diagnosis and race. Because high symptom burden is more likely to precipitate self-care strategies that may potentially be ineffective, strategies for symptom management would be better guided by tailored interventions from health care providers.

The Influence of Sleep and Activity Patterns on Fatigue in Women With HIV/AIDS

The cause of HIV-related fatigue is most likely multifactorial. When presented as a chief complaint, clinicians often include an assessment of stress level, depression, anemia, infection, and amount of sleep and activity. The empirical bases for these evaluations vary in their validity and implementation in clinical practice, but the basis for evaluating adequate amounts of sleep and activity currently lacks empirical research. The purpose of this study was to describe HIV seropositive womens sleep and activity patterns related to their fatigue experience. Sleep and activity were assessed with wrist actigraphy to obtain objective measures of total sleep time, number of awakenings, and sleep efficiency, as well as level of daytime activity, 24-hour activity rhythm, and naps. This sample of 100 women with HIV/AIDS averaged only 6.5 hours of sleep at night, and 45% of the sample napped. CD4 cell counts were unrelated to sleep and fatigue measures. Compared to the low-fatigue group, the women with high fatigue had significantly more difficulty falling asleep, more awakenings from nighttime sleep, poorer daytime functioning, and a higher frequency of depressive symptoms. Findings from this study provide clinicians with empirically based support for detailed clinical evaluations of sleep and activity patterns, as well as anxiety and depression, in clients who complain of fatigue. Findings also provide data for potential interventions to improve sleep and activity in persons living with HIV/AIDS and to reduce fatigue and depressive symptoms.

The Fatigue Experience for Women With Human Immunodeficiency Virus

Purpose: To examine fatigue as a symptom experienced by women with human immunodeficiency virus (HIV). Sample: A convenience sample of 100 women with HIV. Analysis: Independent sample t-tests were used to test for mean differences in fatigue related to variables in the womens sociocultural and home environment (ethnicity, employment, marital status, and parenting). Pearson product moment correlations were used to examine significant relationships between fatigue and physiologic variables (age, CD4 cell count, and sleep). Findings: Lower CD4 cell counts were related to more daytime sleep, higher evening fatigue, and higher morning fatigue. Morning fatigue was related to duration of wake episodes during the night, napping, and perception of sleep disturbance during the past week. The number of awakenings during the first night predicted the severity of fatigue the next evening. Conclusion: To understand the fatigue experienced by women with HIV, researchers and clinicians must focus on the relative contributions of sociocultural, home, and physiologic environments within which these women live. Additional research is ongoing to identify the strategies these women use to manage daily activities such that gender-relevant and culturally relevant interventions for alleviating fatigue can be tested in women with a variety of chronic illnesses, including HIV and acquired immune deficiency syndrome.

Social Interactions, Perceived Support, and Level of Distress in HIV-Positive Women

Although powerful pharmacological therapies are helping women with HIV infection live longer, women continue to experience the stressors of chronic illness. This study used a person-environment systems framework to describe social interactions, perceived social support, and psychological distress in HIV-positive women. A convenience sample of 104 HIV-positive women living in the San Francisco Bay Area completed a questionnaire on social interactions, perceived social support, and distress. Women reported limited social interactions with family and friends and a low level of perceived social support. Social support and level of distress did not differ by ethnicity. Limited perceived social support was a significant predictor of distress in this sample of women. Supportive interactions from health care providers can be useful in mediating the relationship between the stressor of HIV disease and distress in HIV-positive women. Community-based nurses can enhance HIV-positive womens support network by providing positive and supportive interactions as they intervene with women in symptom management, case management, and other health care services.

Testing a nurse-tailored HIV medication adherence intervention.

Background: The relationship between patient adherence and treatment outcomes has been documented across chronic health conditions, but the evidence base for effective adherence interventions in human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) requires more rigorous research and reporting. Objectives: The aims of this study were to determine whether a tailored, nurse-delivered adherence intervention program-Client Adherence Profiling and Intervention Tailoring (CAP-IT)-improved adherence to HIV medications, compared with standard care, and to identify the relationship among adherence measures. Methods: A randomized controlled trial (RCT) with repeated measures was used to test the efficacy of CAP-IT over a 6-month period. A convenience sample of 240 participants was recruited from a freestanding public HIV/AIDS clinic in Houston, TX, that provides medical, psychological, and pharmaceutical services for over 5,000 clients. Study instruments and measures included demographics; chart audit to capture CD4 count, viral load, and prescribed medications; health literacy; and five measures of adherence (AIDS Clinical Trial Group-Revised Reasons for Missing Medications, Morisky Self-Report of Medication Non-Adherence, Pill Count, Medication Event Monitoring System [MEMS] caps, and Pharmacy Refill). Results: A logistic regression using generalized estimating equations method showed no significant differences over time on the five medication-adherence measures between the experimental and control groups. Little correlation was documented among the five different adherence measures, and there was minimal correlation with clinical markers. Discussion: It is unclear why the tailored adherence intervention was not efficacious in improving medication adherence. The findings suggest that these measures of medication adherence did not perform as expected and that, perhaps, they are not adequate measures of adherence. Effective and efficient adherence interventions are needed to address the barriers to medication adherence in HIV/AIDS.

Risk Factors and Symptoms Associated With Pain in HIV-Infected Adults

&NA; Studies suggest that people living with HIV (PLWH) experience many unrelieved symptoms. The purpose of this study was to estimate the occurrence of pain in adult PLWH and to determine whether participants with pain differed from those without pain on selected demographic factors, clinical characteristics, symptoms of fatigue, sleep disturbance, anxiety, or depression. The authors conducted a descriptive, comparative, and correlational study of 317 PLWH seen at academic and community clinics in San Francisco. Participants completed a demographic questionnaire, the Memorial Symptom Assessment Scale, the Fatigue Severity Scale, the General Sleep Disturbance Scale, the Profile of Moods State Tension‐Anxiety subscale, and the Center for Epidemiological Studies‐Depression Scale. Clinical characteristics (i.e., disease and treatment information) were obtained by self‐report. A single item on pain from the Memorial Symptom Assessment Scale was used to classify participants into those with and without pain. Pain was highly prevalent (55%) and was associated with immune status (CD4+ T‐cell count), race, and sleep disturbance, but not with age, gender, or symptoms of fatigue, depression, or anxiety.

Symptom management and self-care for peripheral neuropathy in HIV/AIDS.

Abstract Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, sociodemographic and disease-related correlates and self-care strategies. A convenience sample of 1,217 respondents was recruited from data collection sites in several US cities, Puerto Rico, Colombia and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified 20 self-care behaviors including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Ratings of frequency and effectiveness were also included. An activities checklist summarized into five categories of self-care behaviors including activities/thoughts, exercise, medications, complementary therapies and substance was used to determine self-care behaviors. Taking a hot bath was the most frequent strategy used by those with peripheral neuropathy (n=292) and received the highest overall rating of effectiveness of any self-management strategies included in this study at 8.1 (scale 1–10). Other self-care strategies to manage this symptom included: staying off the feet (n=258), rubbing the feet with cream (n=177), elevating the feet (n=236), walking (n=262), prescribed anti-epileptic agent (n=80), prescribed analgesics (n=84), over-the-counter medications (n=123), vitamin B (n=122), calcium supplements (n=72), magnesium (n=48), massage (n=156), acupuncture (n=43), reflexology (n=23) and meditation (n=80). Several behaviors that are often deemed unhealthy were included among the strategies reported to alleviate peripheral neuropathy including use of marijuana (n=67), cigarette smoking (n=139), drinking alcohol (n=81) and street drugs (n=30).

The Client Adherence Profiling-Intervention Tailoring (CAP-IT) Intervention for Enhancing Adherence to HIV/AIDS Medications: A Pilot Study

This article describes the Client Adherence Profiling-Intervention Tailoring (CAP-IT) intervention designed to enhance adherence to HIV/AIDS medications and reports the results of a pilot study aimed at assessing the feasibility of CAP-IT. Initially, CAP-IT was designed to be implemented by nurse case managers during regularly scheduled home visits; it is currently under revision for use in an outpatient, ambulatory care setting. CAP-IT is an innovative, structured nursing assessment and care-planning activity that allows a standardized assessment of client needs and tailored highly active antiretroviral therapy adherence intervention strategies. CAP-IT is significantly different from the current standard nursing case management practice. Pilot study results in a sample of 10 home care patients suggests that clients have knowledge and skill deficits related to adherence and in the management of the side effects of medications. In addition, the pilot study supported the acceptability of the protocol to clients and the feasibility of integrating CAP-IT into nurse case manager practice. The pilot study results also provided evidence for the efficacy of CAP-IT. The next steps include testing CAP-IT in a randomized clinical trial to determine its effectiveness.

Does "Asymptomatic" Mean Without Symptoms for Those Living with HIV Infection?

Abstract Throughout the history of the HIV epidemic, HIV-positive patients with relatively high CD4 counts and no clinical features of opportunistic infections have been classified as “asymptomatic” by definition and treatment guidelines. This classification, however, does not take into consideration the array of symptoms that an HIV-positive person can experience long before progressing to AIDS. This short report describes two international multi-site studies conducted in 2003–2005 and 2005–2007. The results from the studies show that HIV-positive people may experience symptoms throughout the trajectory of their disease, regardless of CD4 count or classification. Providers should discuss symptoms and symptom management with their clients at all stages of the disease.