The experience of physical symptoms among women living with HIV

As the number of women living with HIV and AIDS increases, so does survival time for individuals living with this chronic condition. Symptom existence, intensity, and bothersomeness greatly affect quality of life in women living with HIV and AIDS. Symptoms experienced by women living with HIV include symptoms related to HIV infection itself, those related to opportunistic infections, and those related to medications and treatments. Symptoms experienced by women include those common to both genders and those specific to females. The presence and intensity of symptoms varies with progression of the disease and with deteriorating status of HIV disease indicators. While research is limited on this topic, some research on the general symptom experience of women and on symptoms specific to or common among women has been done. Extended life expectancy among women with HIV increases the importance of nursing care focused on symptom assessment and symptom management. This article reviews research on symptoms commonly experienced by women living with HIV and presents implications for the care of women experiencing distressing symptoms.     

University of California, San Francisco International Nursing Network for HIV/AIDS Research

AIM: The University of California, San Francisco International Nursing Network for HIV/AIDS Research (the Network) is an international group of nurse scientists dedicated to research and education for the purpose of improving HIV/AIDS nursing care around the world. This article describes the evolution of the Network, as well as its structure, achievements and challenges. BACKGROUND: Although HIV/AIDS has been around for over 25 years, millions of people are still affected by the disease every year. Joint United Nations Programme on HIV/AIDS (UNAIDS) reported that in 2005, there were 38.6 million people living with HIV around the world. In many parts of the developed and developing world, nurses are the primary caregivers for people living with HIV/AIDS, and they need up-to-date information about the daily management of the disease. The Network was established to respond to the need of HIV/AIDS nurses for relevant information to inform clinical care. The Network's main activity is a series of international multi-site collaborative research studies. Past studies have addressed issues such as medication adherence, symptom management and self-care for people living with HIV/AIDS. The Network also hosts semi-annual meetings as well as a biannual international nursing science conference. CONCLUSION: The Network's flexible structure has proven to be one of its greatest assets, as well as a challenge. Although the Network faces challenges, it has proven to be a useful framework for conducting international collaborative activities related to HIV/AIDS and nursing science.     

Symptoms experienced by HIV-infected Individuals on antiretroviral therapy in KwaZulu-Natal, South Africa

Symptom management in HIV/AIDS is a critical issue that influences the quality of life of those living with the disease. Although the goals of treating the numbers living with HIV/AIDS have not yet been achieved, availability of antiretroviral therapies (ARVs) has been expanded to many clinical settings in KwaZulu-Natal, the epicenter of HIV infection in South Africa. The South African Department of Health (2007) estimates indicate that 5.54 million South Africans are living with HIV/AIDS, whereas UNAIDS (2007) estimates suggest that 18.8% of the population in South Africa is affected. Because the symptom experience may influence adherence to ARVs and quality of life, this study focused on the prevalence of symptoms reported by patients (N = 149) diagnosed with HIV/AIDS and adherence to medications and appointments. Self-report data were obtained from this community-based sample of HIV-infected patients who received care in outpatient clinics in Durban, KwaZulu-Natal, South Africa. With an average of three side effects, the most frequently reported by the study participants were fatigue/tiredness (41%), rashes (40%), headaches (32%), insomnia (31%), sadness (24%), disturbing dreams (23%), numbness (22%), pain (22%), and self-appearance (20%). On a scale of 1 to 10 (10 being worst possible), those with symptoms reported an average intensity of 4.2 (SD = 2.0), and the degree to which symptoms affected activity levels was 3.2 (SD = 2.2). Although intensity of symptoms and effects on activity levels were strongly correlated (r = .78, p < .001), there were no significant relationships between adherence and the intensity of symptoms or the relationship of symptoms with activity levels. Logistic regression analyses indicate that the presence of a greater number of symptoms was not associated with greater adherence (odds ratio = 2.27, 95% confidence interval = 0.60-8.70, ns). However, those who reported higher adherence were 1.5 times more likely to report greater physical health than low adherers (p = .04). High adherers were also 1.6 times more likely to report greater psychological health than low adherers (p = .03). This suggests that further study is needed to investigate adherence motivations for those living with HIV/AIDS in South Africa because adherence seems not to be linked to the frequency of symptoms or limitations on activity related to symptoms.     

Distal sensory polyneuropathy in the context of HIV/AIDS.

Peripheral neuropathy, or distal sensory polyneuropathy (DSPN), is the most common neurological problem in HIV disease. DSPN also represents a complex symptom that occurs because of peripheral nerve damage related to advanced HIV disease and in association with the use of antiretroviral therapy-particularly in individuals treated with dideoxynucleosides. Although DSPN is a frequent symptom, the specific pathophysiology is not well understood. The HIV-related neuropathies are commonly categorized as distal sensory polyneuropathies, although antiretroviral toxic neuropathies are described in the literature. Recently, mitochondrial toxicity has been identified as a possible etiology of DSPN. As individuals with HIV/AIDS survive longer, often living for decades with the disease, chronic symptoms like DSPN must be addressed. Pharmacologic approaches, complementary therapies, and self-care behaviors that may improve quality of life and limit symptoms of DSPN are important interventions for clinicians and those living with HIV/AIDS to consider in the management of peripheral neuropathy.     

The symptom experience of people living with HIV/AIDS in Southern Africa.

This study describes the symptom experience of 743 men and women living with HIV/AIDS in Botswana, Lesotho, South Africa, and Swaziland. Data were obtained in 2002 by using a cross-sectional design. A survey of participants included 17 sociodemographic items and the 64-item Revised Sign and Symptom Checklist for Persons with HIV Disease. Results indicate a strong correlation between the frequency of reported symptoms and their intensity (r = .84, p < .00). Participants who reported having enough money for daily expenses also reported significantly fewer symptoms. There were no significant differences in symptom frequency between men and women or by location of residence. The study showed a complex picture of HIV-related symptoms in all four countries. Because of the high levels of symptoms reported, the results imply an urgent need for effective home- and community-based symptom management in countries where antiretroviral therapy is unavailable to help patients and their families manage and control AIDS symptoms and improve quality of life.     

Psychometric properties of a Symptom Management Self-Efficacy Scale for women living with HIV/AIDS

ContextMany people with HIV/AIDS find it difficult to manage the symptoms of the disease, but by adopting effective symptom management behavior, they increase the potential of alleviating the burden of those symptoms. Self-efficacy is a recognized mediator of successful behavior change and is used by many researchers and clinicians when developing symptom management interventions. Despite this, an instrument measuring the self-efficacy of symptom management behavior specifically for people living with HIV/AIDS has not yet been made available.ObjectivesTo introduce and test the psychometric properties of the HIV Symptom Management Self-Efficacy for Women Scale (HSM-SEWS) for women with HIV/AIDS. This scale, a new nine-item measurement instrument, was modified from the Chronic Disease Self-Efficacy Scale.MethodsIn this study, psychometric testing focused on the reliability and validity of the HSM-SEWS instrument. Reliability was assessed using Cronbach’s alpha. Exploratory factor analysis with oblique promax rotation was used to examine validity and test hypothetical associations.ResultsEighty-nine HIV-positive women were recruited and asked to complete the scale every four weeks for a total of 16 weeks. Factor analysis supported a one-factor solution explaining 93% of the variance among items. Internal consistency of the nine items was found to range from 0.83 to 0.93, with an overall Cronbach’s alpha of 0.92.ConclusionPsychometric analyses suggest that the HSM-SEWS is a reliable and valid instrument that measures the self-efficacy of symptom management behavior in women with HIV/AIDS and can be used during interventions and in studies targeting this area of health care research.     

Quality of Life and the Concept of "Living Well" With HIV/AIDS in Sub-Saharan Africa

PURPOSE: To increase understanding of the meaning of quality of life for people living with HIV/AIDS in four countries in sub-Saharan Africa: Botswana, Lesotho, South Africa, and Swaziland. METHODS: Using a cross-sectional design and convenience sample, we administered a survey and collected data on demographic characteristics, measures of severity of illness, and perceptions of quality of life. The purposefully selected sample (N=743) consisted of community-based people living with HIV/AIDS in 2002. Based on the Wilson and Cleary framework for organizing variables related to quality of life, a hierarchical multiple regression was conducted with quality of life as the dependent variable. RESULTS: The sample of 743 persons was 61.2% female with a mean age of 34 years. Approximately 62 % of the sample reported having received an AIDS diagnosis. Ten predictor variables explained 53.2 % of the variance in life satisfaction. Those participants with higher life satisfaction scores were less educated, had worries about disclosure and finances, did not have an AIDS diagnosis or other comorbid conditions, had lower symptom intensity, had greater functioning, and had fewer health worries. None of these participants was taking antiretroviral medications at the time of this study. CONCLUSIONS: Several dimensions of the Wilson and Cleary model of quality of life were significantly related to life satisfaction for people living with HIV/AIDS in sub-Saharan Africa. Quality of life for this sample was primarily defined as overall functional ability and control over symptom intensity. These findings are similar to studies in developed countries that have shown the significant relationships among functional abilities, symptom control, and perceived quality of life. As antiretroviral medications become more available in these areas, community members and care providers can help clients realize the possibility of living well with HIV/AIDS, and can work with clients to improve functional ability and control symptom intensity to make living well a reality.     

Causal model of health: health-related quality of life in people living with HIV/AIDS in the northern region of Thailand

Abstract   The purpose of this study was to examine the causal relationships between age, antiretroviral treatment, social support, symptom experience, self-care strategies, and health-related quality of life (HRQOL). The subjects were 422 people living with HIV/AIDS. The data were collected via the Personal Resource Questionnaire 85 part 2, Symptom Experience Questionnaire, Self-care Strategies Questionnaire, and HRQOL Questionnaire. The results revealed that symptom experience had a significant negative direct effect on the HRQOL. Age, social support, antiretroviral treatment, and self-care strategies had a significant positive direct effect on the HRQOL. Moreover, social support and antiretroviral treatment had an indirect effect on the HRQOL via self-care strategies. The findings indicated that the health-care team should promote social support, both in the family and the community, including antiretroviral treatment, for enhanced HRQOL in people living with HIV/AIDS in the future.     

Assessment of palliative care needs for people living with HIV/AIDS in Rwanda

Abstract

The rising number of people living with HIV/AIDS (PLWHA) world-wide has made healthcare professionals and policy makers search for accessible healthcare that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, healthcare professionals and co-ordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was associated with the health status of PLWHA (P < 0.001). The most common perceived palliative care needs of PLWHA were: (i) medical needs, psychosocial needs and the need for financial assistance (77%); (ii) home-based care (47%); (iii) nutritional support (44%); and (iv) pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular, the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of healthcare professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of healthcare providers is essential for the provision of adequate palliative care services in Rwanda.     

Self-care strategies for depressive symptoms in people with HIV disease

AIM: This paper reports a study with people living with HIV to examine the experience of depressive symptoms, self-care symptom management strategies, symptom outcomes in response to those strategies, and sources from which the strategies were learned. BACKGROUND: Depressive symptoms are common, under-diagnosed and under-treated in people living with HIV. These symptoms have been associated with lower medication adherence, risky behaviours and poorer health outcomes. METHODS: The study was based on the model of symptom management developed by the University of California San Francisco School of Nursing Symptom Management Faculty. Thirty-four HIV+ men and women from a larger study of symptom self-care strategies (n = 422) reported experiencing depressive symptoms. Data were collected from this subset on the Web, by mail and in-person using the critical incident technique. RESULTS: Depressive symptoms were described using 80 words and phrases clustered into eight categories: futility, sadness, loneliness/isolation, fatigue, fear/worry, lack of motivation, suicidal thoughts and other. A total of 111 self-care strategies were coded into six categories: practising complementary/alternative therapies, talking to others, using distraction techniques, using antidepressants, engaging in physical activity, and using denial/avoidant coping. Sources of information for strategies used were trial and error (31%), healthcare providers (28%), family and friends (20%), classes/reading (8%), clergy (8%), support groups (4%) and other (3%). Overall, 92% of the self-care strategies used were reported as helpful, 4% were sometimes helpful and 4% were not helpful. CONCLUSIONS: People living with HIV use numerous effective self-care strategies to manage depressive symptoms. Further study is needed to validate the use of these strategies across populations, to standardize dose, duration and frequency, and to measure their effectiveness.     

The spectrum of symptoms among rural South Africans with HIV infection.

The vast majority of people infected with HIV in South Africa have no access to antiretroviral therapy, making palliative care the only treatment available. An important element of palliative care is symptom management. However, little is known about the range of symptoms and the distress associated with them among rural South Africans living with HIV/AIDS. A cross-sectional study was conducted to describe the spectrum of symptoms experienced by 64 HIV-positive patients who received palliative care from a rural home-based palliative care program. Data were determined using a questionnaire adapted from an HIV symptom list and HIV symptom profile. The physical symptoms of most immediate importance identified by the respondents were localized pain, skin problems, cough, vaginal discharge/infection, and fatigue. The psychological symptoms of the most immediate and overall importance were feelings of anger, loneliness, decreased support from family and friends, and a decreased sense of satisfaction. This study provides insight into the spectrum of HIV-associated symptoms in a rural South African HIV-positive population. Through improved symptom assessment and management, nurses can improve palliative care services to those suffering from the distressful symptoms associated with HIV infection.     

教育指导提高艾滋病患者抗病毒治疗的效果观察

目的探讨有效的教育指导方法,提高我国艾滋病患者抗病毒治疗效果。方法对我院103例艾滋病患者开始抗病毒治疗前及治疗1、3、6、9、12个月末进行教育指导。结果患者对疾病及药物治疗的认知程度显著改善,治疗过程中未出现擅自停、换药物和私自退出治疗的情况,病毒复制被控制,实现了免疫功能重建。结论优质的教育指导能够使患者保持良好的服药依从性,取得最佳的抗病毒治疗效果,提高患者生存质量。     

Reconsidering the assessment of symptom status in HIV/AIDS care.

Symptom management is one of the predominant components of HIV/AIDS care. Frameworks that adequately posses sufficient construct validity and that reflect the symptom experience related to HIV disease, treatment, and medications have been limited. Without validated measures, nurses and other care providers are limited in their ability to accurately assess symptomology and to make appropriate changes to care regimens. The purpose of this article is to demonstrate a method for evaluating symptom status based on the Sign and Symptom Check-List for Persons with HIV disease (SSC-HIV) as well as to provide further support as to the validity of the SSC-HIV. The method to evaluate symptom status that is shown uses a measurement model approach that allows for the assessment of symptom clusters and may be more appropriate than traditional approaches. The sample for this analysis comes from the AIDS Time-Oriented Health Outcome Study. Results further support the SSC-HIV as a valid measure of HIV-related symptoms.     

Self-care strategies and sources of information for HIV/AIDS symptom management

BACKGROUND: Self-care is one of the challenges that people with HIV/AIDS face in the long-term symptom management of the disease. OBJECTIVE: To identify the category schemes of self-care strategies and sources of information for symptom management reported by HIV-positive individuals. METHODS: A secondary analysis was conducted in a large dataset of an HIV/AIDS symptom management study. Narrative data of symptom self-care management strategies and sources of information for symptom management were analyzed by a content analysis technique to identify category schemes. The 359 participants in the study reported 776 symptom self-care strategies and 526 sources of information for these strategies. RESULTS: The symptom self-care management strategies were summarized into eight categories: medications (23.45%), self-comforting (15.21%), complementary treatments (14.69%), daily thoughts and activities (12.89%), diet changing (10.95%), help seeking (9.28%), spiritual care (6.83%), and exercise (6.70%). There were four categories of information sources: self (34.41%), healthcare provider (27.95%), personal network (19.20%), and community (18.44%). The category schemes had moderate to high interrater reliability (Cohen's kappa:.49-1.00 for self-care strategy and .70-.87 for source of information). Most of the self-care strategies were perceived as helpful. Except for complementary treatments, self-care strategies were used differently among people with the six most frequently occurring symptoms (chi2 [5, n = 286] = 28.53-79.89). DISCUSSION: The eight categories of self-care strategies identified in this study showed that people with HIV/AIDS not only seek the help of medications, but also follow a wide array of other self-developed or self-taught nonpharmaceutical strategies to allay their symptoms.     

Factors affecting adherence to antiretroviral therapy in people living with HIV/AIDS.

Antiretroviral treatments have given hope to people living with HIV/AIDS and play a role in improving their quality of life. However, the effectiveness of these treatments is directly related to the level of adherence and commitment to them. Researchers have demonstrated that there are many factors that play an important role in adopting and maintaining adherence behavior. In this article, the authors present an indepth review of the literature and from this, enumerate the factors that link adherence behavior to the individual, the treatment, the illness, and the relationship with the health professional. An understanding of these factors is essential to develop interventions that will improve adherence to therapeutic regimens among people with HIV/AIDS.     

Improving treatment adherence in drug abusers who are HIV-positive

This article discusses the complex dual diagnosis of HIV/AIDS (Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome) and substance abuse, which affects a growing number of individuals worldwide. A brief review of HIV/AIDS is provided and the connection between HIV/AIDS and substance abuse is described. Substance abuse complicates both HIV/AIDS and its management because of the effects that illicit drugs have on various body systems and because of the behavioral disturbances that accompany substance use. For a variety of reasons adherence to treatment is poor in this population and several factors that negatively impact adherence are outlined. Treatment of drug abusers who are HIV-positive requires more flexibility than treating drug abuse and HIV separately. Because medication regimens can be complicated and demanding and nonadherence to treatment can cause mutation of the virus resulting in drug-resistant strains, it is essential to get the patient committed to treatment The goals of treatment are abstinence from illicit drugs, adherence to a treatment regimen, suppression of viral load, improved CD4 count, and improved quality of life. The role of the case manager is critical to improving treatment adherence. Essential attributes include knowledge of disease processes, critical thinking, and the ability to navigate the healthcare system. Case management interventions to improve treatment adherence should be directed at the patient, the regimen, the client-patient relationship, and the healthcare system. Because HIV/AIDS is now classified as a chronic disease and is no longer viewed as a death sentence, people who are HIV-positive have hope for longevity and a cure. It is this hope for a longer life and possible cure that can be used to motivate substance abusers who are HIV-infected to improve their treatment adherence and quality of life.     

Use of complementary therapies to treat patients with HIV/AIDS

This article investigates the use of complementary and alternative medicine (CAM) in people living with human immunodeficiency virus and acquired immune deficiency syndrome (HIV/AIDS). Since the beginning of the HIV/AIDS pandemic people living with HIV/AIDS have turned to CAM, either to complement conventional treatment or as an alternative to treatment. Although the introduction of highly active antiretroviral therapy has prolonged life and increased the quality of life for those with HIV/AIDS, they continue to experience physical and emotional consequences of the infection and its treatments--leading them to seek relief through the use of CAM.     

A programme of symptom management for improving quality of life and drug adherence in AIDS/HIV patients

AIM: This paper reports an evaluation of the effect of symptom management programmed on drug adherence, CD4 count and virus load and the quality of life of patients with HIV/AIDS. BACKGROUND: Patients with HIV/AIDS have to face the long-term side effects caused by highly active antiretroviral therapy regimens. There has been little research to evaluate the influence of drug intervention side effects on self-care. METHODS: Sixty-seven patients with HIV/AIDS were randomly assigned to one-on-one teaching, group teaching, or control groups. All those in the one-on-one and group teaching groups attended a symptom management programme once a week, followed by 3 weeks of continuity and telephone counselling. Those in the control group were offered experimental intervention at the conclusion of data collection. The Customized Adherence Self-Report Questionnaire, CD4 count and virus load, and Quality of Life Index were used to evaluate the effectiveness of the symptom management programme before and at 3 months after the intervention. RESULTS: Median differences on the Customized Adherence Self-Report Questionnaire, CD4 count and virus load, and quality of life in both experimental groups were statistically significantly better than in the control group. CONCLUSIONS: The symptom management programme can increase self-care ability in managing medication side effects in patients with HIV/AIDS.     

Unmet needs of symptom management and associated factors among the HIV-positive population in Shanghai,China: A cross-sectional study

BackgroundPeople living with HIV/AIDS (PLWHA) are a vulnerable group who experience multiple physiological and psychological symptoms. A better understanding of unmet symptom management needs will allow researchers to design interventions that are more reflective of deficits in care and more effective at improving patient care. Few studies have focused on unmet needs for symptom management in PLWHA particularly in China. Factors influencing Chinese PLWHA symptom management needs are rarely discussed.AimThe purpose of this study was to investigate the unmet needs for symptom management of PLWHA and how their symptom burden, HIV perceived stigma, and self-management capacity contributes to HIV-related self-management practices in Shanghai, China.DesignStudy participants were recruited from the outpatient and inpatient HIV/AIDS wards in an infectious hospital in Shanghai, China. Self-administered questionnaires were implemented and medical charts were reviewed.ResultsA total of 367 participants was recruited from April to September 2017. The results show that 53.1% (195 of 367) of participants presented at least one unmet symptom management need and that symptom burden, as well as perceived stigma, reduced self-management capacity, and no employment significantly affected unmet symptom management needs.ConclusionThe findings indicate that there is room for improvement in symptom management for Chinese PLWHA. Culturally appropriate interventions focusing on improving symptom burden, decreasing HIV perceived stigma, and enhancing self-management capacity can enhance symptom management in this population.     

The Advanced Nursing Practice Team as a model for HIV/AIDS caregiving in Switzerland.

To offer advanced nursing care for people living with HIV, a participatory action research project was initiated that enabled constant learning and change at the levels of (a) the culture and organization of an outpatient department, (b) clinical leadership and interdisciplinary collaboration, and (c) development of new services. In this project, the development of the Advanced Nursing Practice (ANP) Team not only affected the practice of individual nurses with advanced degrees but also created a team of nurses educated at different levels. Through a systematic process, the nurses on the team became more educated and refined their clinical expertise. An essential aspect of the ANP Team was the specialization of each nurse in a self-selected topic within HIV/AIDS care. As members of the ANP Team, the nurses offer state-of-the-art nursing care including patient assessment, medication management and adherence support, symptom management, health maintenance and prevention, and family support for persons living with HIV.