Nurse practitioner, nurse midwife and physician assistant attitudes and care practices related to persons with HIV/AIDS

Although multiple studies of nurses' attitudes toward people living with HIV/AIDS (PLWAs) can be found in the literature, little is known about the attitudes, beliefs and practices of nurse practitioners (NPs), certified nurse midwives (CNMs), and physician assistants (PAs). A survey including a 21-item AIDS Attitude Scale measuring the constructs of Avoidance and Empathy was sent to 1,291 NPs, CNMs and PAs in Louisiana, Arkansas and Mississippi to describe their attitudes and care practices related to PLWAs. Respondents who were more comfortable treating PLWAs had significantly lower avoidance scores and significantly higher empathy scores than respondents with lower comfort levels in providing care. Greater than 80% of respondents indicated that they would provide health care to HIV-infected individuals. Respondents who referred HIV/AIDS patients for all care did so primarily due to lack of experience with HIV and the availability of more experienced providers. Avoidance and empathy scores were not found to be significantly associated with referral for care. This study suggests that this group of providers has relatively low avoidance and high empathy toward PLWAs and is willing to care for HIV-infected individuals.     

Persons' experience of HIV/AIDS in Japan: application of Margaret Newman's theory

Purpose: To describe human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) persons' experience in Japan applying Margaret Newman's theory of health as expanding consciousness. Method: Five men who had sex with other men and who were afflicted with HIV/AIDS were interviewed to describe their experience. Findings: Their narratives revealed an evolving pattern of the whole of five stages; self‐conscious of own sexual orientation, chaos, stagnation, turning point and regaining a new identity. After viewing their pattern, their expanding consciousness was evident from their becoming compassionate for those who were underserved and underprivileged, and having deeper levels of connectedness with their family and friends. The a priori nature of theory in this praxis research was evident when the researcher embodied the theory of expanding consciousness. Recommendations: The findings of the study demonstrated the relevance and importance of understanding how the condition intersects with race, gender and ethnicity in constructing the unique experience of living with HIV/AIDS. Community health workers, community mental health nurses in particular, should be cognizant of the illness trajectory of those who are afflicted with the condition. Programmes such as outreach should be carried out on an ongoing basis in order to identify and render support to those who might need help from various stages of illness. Community health workers should identify clients' specific needs to refer to appropriate services because there are physical, mental and socio‐economic implications throughout illness trajectory in HIV/AIDS.     

Mothers who silence themselves: a concept with clinical implications for women living with HIV/AIDS and their children

The number of women newly infected with the human immunodeficiency virus (HIV) continues to rise. Women living with HIV or the acquired immunodeficiency syndrome (AIDS) are often mothers who deal with the unenviable task of balancing the stigma and physical needs of illness with the needs of their families and, in particular, their children (DeMarco, Johnsen, Fukuda, & Deffenbaugh, 2001). This article addresses both the communication style and subsequent concept identified in women living with HIV/AIDS called "silencing the self," and the clinical implications for pediatric nurses who support and offer family-centered care to their patients. Mothers living with HIV/AIDS, often view the needs of the children primary as they deal with the trajectory of their own illness. In doing this, they effectively "silence" their own needs and may actually put their own psychosocial and physical needs in abeyance. It is critical that nurses in pediatric practice consider how to tangibly assess, refer, and educate mothers who silence their own needs in the process of providing care for their children.     

Transmission and epidemiology of HIV/AIDS: a global view

Since the first recognition of the condition that is now called AIDS, much has been learned. We now know that AIDS results from infection with HIV types 1 and 2. Advancements in approaches to treatment, in the form of new types of medications, have changed the trajectory of illness by slowing progression and decreasing the incidence of HIV-associated opportunistic infections in the millions of people living with HIV infection, particularly in developed countries. In less developed areas of the world, HIV infection looks different, in part because of the differential availability of medications and health care. This article focuses on epidemiology of HIV infection and AIDS in the United States and worldwide, and on transmission, including susceptibility factors.     

Taking action in communities: women living with HIV/AIDS lead the way

For the past 5 years, a successful collaboration of a medical center, a community-based HIV/AIDS service organization, a university school of nursing, and women living with HIV/AIDS in an inner city community resulted in a series of educational programs1 for women living with HIV/AIDS, their family, friends and caregivers. These programs were intended to provide inner-city women who were living with HIV/AIDS with knowledge and new insights from the voices of their peers. Topics focused on their self-care and empowerment so that they could take control of their wellness and their health care while remaining in their community. The efforts made in launching the collaborative educational series created trusting relationships between academic, clinical, and community service agencies, professional caregivers, and the recipients of their care. The most significant contribution belonged to the women living with HIV/AIDS themselves: After the programming they turned their health and life experiences into "action" by planning a research project that will test the efficacy of an intergenerational HIV prevention program for adolescent women of color in their community in the future.     

Physical and social correlates of perceived psychological support among hospitalized AIDS patients

Persons living with HIV disease are faced with a broad array of physical and psychosocial problems across the trajectory of their illness Almost all will be hospitalized for nursing care during the course of their disease The purpose of this study was to explore the physical health and social correlates of perceived psychological support among hospitalized AIDS patients The sample consisted of 168 AIDS patients hospitalized with Pneumocystis carinu pneumonia (PCP) Each patient rated his or her psychological support and physical condition on a scale of 1–10 Self-care ability was measured by the Quality Audit Marker Physiological and social variables were obtained from an audit of the patient record Stepwise regression analysis by sets indicated that only 12% of the variance was explained by the antecedent variables of physical health (self-care ability, white blood count, perception of physical condition, and first PCP admission) and social (living alone and insurance status) correlates Self-care ability and living alone were found to be significant predictors of self-rating of perceived psychological support in this sample Further research is needed in the area of perceived psychological support among hospitalized AIDS patients as a basis for providing quality nursing care     

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 women's support network by providing positive and supportive interactions as they intervene with women in symptom management, case management, and other health care services.     

The experience of uncertainty for individuals with HIV/AIDS and the palliative care paradigm

This small qualitative study investigated the lived experience of individuals with HIV/AIDS, exploring the uncertainty related to episodes of life-threatening illness followed by recovery, 'revival'. The themes that emerged related to the unpredictability of when death would occur. The participants described the dilemma of living with a chronic illness with a totally unpredictable disease trajectory. Following periods of being extremely unwell, individuals would then recover and experience periods of relative well-being, only to succumb to another infection later. The findings highlighted the uncertainty that pervades all aspects of HIV-positive individuals' lives as they face death. An awareness of this may be important in those offering palliative care to those with HIV/AIDS.     

Palliative care for AIDS: challenges and opportunities in the era of highly active anti-retroviral therapy

In contrast to the first decade of the AIDS epidemic, the past decade has seen an increasing separation between AIDS care and palliative care services. While this may be due in part to the perception that AIDS is no longer a uniformly fatal illness, AIDS in fact remains an important cause of morbidity and mortality for young adult populations in the United States, particularly among certain racial-ethnic minorities. Death rates have remained steady since the dramatic decreases noted in the mid-1990s, and causes of death now increasingly include co-morbidities such as hepatitis B, C, end-organ failure, and various malignancies. Moreover, as AIDS has been transformed into a more manageable, chronic disease in the era of 'highly active antiretroviral therapy' (HAART), the opportunities for palliative care interventions have only increased. Patients with AIDS continue to experience a high burden of pain and other chronic symptoms, over a longer period of time, with a disease course marked by more cumulative exacerbations and remissions than when AIDS was a stereotypic, rapidly fatal illness. Advance care planning and discussions of goals of care are more complex and involve more uncertainty than was the case when prognosis was clear-cut and treatment options were more limited. For all of these reasons, it is important for the distance which has developed between HIV and palliative care providers to be bridged. Contrary to popular perceptions, palliative medicine continues to have much to offer in the HAART era for the care of patients and families with HIV/AIDS, for whom treatment outcomes will only benefit from greater integration of disease-specific and palliative interventions. The challenge for care providers is now to implement successful strategies for integrating AIDS and palliative care services in all relevant clinical environments.     

Evaluation of services for people with HIV/AIDS in an inner-city health authority: perspectives of key service providers

This paper reports the findings of the first phase of a study designed to assess the needs of people with HIV and AIDS and the extent to which these needs are being met by services in Camberwell Health Authority in inner London The study involves collecting information and opinions from key service providers, clients with HIV/AIDS and their informal carers It is the service provider data which will be presented here Semi-structured interviews were conducted with 47 key service providers involved in the care and support of people with HIV/ AIDS in the Camberwell Health District Respondents were drawn from the local health services, local social services departments and a number of locally active voluntary organizations The aim was to gather respondents' views on their individual roles and the roles of the organizations they represented, the health and social needs of people with HIV/AIDS and the extent to which these were being met by current service provision and the co-ordination of services for people with HIV/AIDS The data showed that a broad range of services were utilized by people with HIV/AIDS, reflecting a wide variety of health and social care needs The majority of respondents felt that some of the needs of people with HIV/AIDS were similar to those of people living with other chronic illnesses (such as cancer) However, they also identified a number of problems which were either unique or more severe for people with the virus Services for people with HIV/AIDS were generally felt to be poorly coordinated and a number of areas of overlap and gaps in service provision were identified     

The experience of parents caring for adult children with HIV/AIDS

Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents' caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.     

The Georgia Rural-Based Nurse Model: Primary Care for Persons with HIV/AIDS

Abstract The need for specialized HIV education for nurses working in rural areas will increase as the incidence of HIV infection increases in rural areas. Public health nurses provide a viable alternative to providers in acute care facilities and will continue to be the primary care providers for persons with HIV/AIDS in rural areas. While approaches to HIV/AIDS education should include clinical treatment as the core, clinical knowledge alone will not promote the development of caring communities. The Rural-Based Nurse Model provides a comprehensive curriculum that addresses the many complex issues associated with the care of persons with HIV/AIDS. Additionally, participants are linked with care providers who serve clients across the continuum of HIV disease. Through meaningful educational opportunities and provider networking, this program has the potential for improving the quality of care in rural areas for persons with HIV/AIDS. HIV/AIDS education programs will require individualized community strategies that consider existing resources and barriers. However, the Rural-Based Nurse Model provides a formula for HIV/AIDS education that can be easily adapted to other settings.     

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.     

Ethical issues.

The HIV virus and the associated worldwide pandemic pose enormous biomedical, clinical, and social dilemmas for health care providers, biomedical researchers, policy analysts, and the public at large 10 years after its discovery. Many of these dilemmas and challenges are captured in the difficult ethical issues the HIV epidemic has highlighted for primary care physicians. Given the vanishingly small risk to primary care providers of acquiring HIV infection in office practice and the rapidly increasing prevalence of the virus, a clear ethical obligation to care for HIV-infected patients exists for primary care physicians. Primary care providers should be sensitive to the potentially sensitive nature of patient risk status and HIV testing results and balance confidentiality in the medical record with the "need to know" the patient's clinical status by other health care professionals. Every attempt should be made by the primary care provider to encourage HIV-infected patients to act responsibly toward their intimate sexual partners and inform them of their HIV status to take appropriate precautions against acquiring the virus. Primary care providers should also model responsible shared decision making and goal setting with HIV-infected patients early in the course of the disease, laying the foundation for subsequent decision making later in the course of the illness. Finally, considerable controversy exists about the responsibilities of HIV-infected providers to inform patients of their status; professional and public policy in this area is in rapid flux. Undoubtedly, the HIV epidemic will continue to challenge us and force careful examination of many of the critical dilemmas in modern biomedical ethics.     

Hospital–community interface: A qualitative study on patients with cancer and health care providers' experiences

BackgroundPatients with cancer must deal with complex and fragmented healthcare systems in addition to coping with the burden of their illness. To improve oncology treatment along the care continuum, the barriers and facilitators for streamlined oncologic care need to be better understood.PurposeThis study sought to gain insight into the hospital–community interface from the point of view of patients with cancer, their families, and health care providers on both sides of the interface i.e., the community and hospital settings.Methods and sampleThe sample comprised 37 cancer patients, their family members, and 40 multidisciplinary health care providers. Twelve participants were interviewed individually and 65 took part in 10 focus groups. Based on the grounded theory approach, theoretical sampling and constant comparative analyses were used.ResultsTwo major concepts emerged: “ambivalence and confusion” and “overcoming healthcare system barriers.” Ambiguity was expressed regarding the roles of health care providers in the community and in the hospital. We identified three main strategies by which these patients and their families overcame barriers within the system: patients and families became their own case managers; patients and health care providers used informal routes of communication; and nurse specialists played a significant role in managing care.ConclusionsThe heavy reliance on informal routes of communication and integration by patients and providers emphasizes the urgent need for change in order to improve coordinating mechanisms for hospital–community oncologic care.     

God in control: women's perspectives on managing HIV infection

Women with HIV face a number of challenges in living with this chronic, life-threatening illness: economic, physical, social, and emotional. When discussing their illness the importance these women place on having a strong spiritual life is a consistent theme. In this study, women were asked to describe and explain what spirituality meant to them and how they used it in living with HIV. The results indicate that, in opposition to what some contemporary providers fear HIV-positive women use their spiritual life to enhance the care prescribed by providers, rather than using their faith to avoid mainstream sources of care. In addition, women related the importance of spirituality in dealing with everyday life. Knowledgeable providers can incorporate discussions of spirituality in their care of women with HIV and, in the process, potentially improve the therapeutic results of their HIV-specific care.     

Self‐care behaviours and trajectory management by people with scleroderma in northeastern Thailand

Scleroderma, particularly systemic sclerosis, is a chronic illness that affects a person's physical, emotional, psychosocial, and spiritual dimensions. To investigate self‐care deficits, health behaviours, and trajectory management of Thai people with systemic sclerosis, an exploratory case study method was used through interviews and patient records. Self‐care deficit nursing theory and the chronic illness trajectory framework guided the research. Twelve patients with systemic sclerosis were purposively recruited at a hospital clinic in the northeastern region of Thailand. Thai people living with systemic sclerosis developed specific self‐care agencies in each of 3 identified trajectory patterns to improve their health and well‐being. By applying the theory and framework that guided the research, nurses can promote self‐care behaviours and recognize situations along an illness trajectory that require intervention and management. The results extend the understanding of how people live and cope with systemic sclerosis.