Perceptions of Health and Self-Care Learning Needs of Outpatients With HIV/AIDS

Abstract

Health promotion increases healthy behaviors, enhances health status, and decreases health care costs of chronically ill persons. As HIV has become a chronic illness, many HIV-positive persons may have health learning needs that affect their behaviors, health status, and health care costs. Health learning needs may be general or HIV specific. Social stigma may affect learning resource usage. We used Pender's Health Promotion Model and community-based health promotion principles as theoretical underpinnings for an exploratory study of perceived health and self-care learning needs, barriers, and preferred learning modalities of outpatients with HIV/AIDS. A nonrandom sample of 151 adults completed a researcher-designed self-report survey. Most (97%) expressed interest in health and self-care. Many identified multiple topics, learning barriers, and preferred learning modalities. A statistically significant difference (p = .027) was noted in communication needs of participants diagnosed with HIV versus AIDS. Findings have led to practice changes, health promotion activities, and further research.     

Women, HIV infection, and AIDS: tapestries of life, death, and empowerment.

Women, the minority population in the human immunodeficiency virus (HIV) pandemic, are fast becoming one of the highest subgroups to be infected and affected by the disease. In the United States, most of these women are black or Hispanic, poor and urban dwellers, and addicted to drugs. This paper discusses the physical, psychological, and social manifestations of HIV disease in women, such as diminished activity tolerance, neurologic or cognitive changes, occupational and social role imbalance, and stigma and discrimination, and describes the sociocultural aspects of women's lives for assessment and treatment of women with HIV. Health promotion, education, and AIDS prevention and wellness programming are emphasized as strategies toward facilitation of self-empowerment for women with HIV disease. These health promotion and wellness strategies include learning of new and adaptation of current roles; learning strategies for self-care that include care for one's physical, psychosocial, spiritual, and sexual health; and learning and developing action plans toward healthy living and self-empowerment.     

Linking HIV/AIDS clients' self-care with outcomes.

The self-care practice of HIV/AIDS patients has become an important topic to help HIV/AIDS patients maintain their maximum level of well-being in chronic illness management. This article presents a self-care outcomes model that is applicable to HIV/AIDS nursing practice and research, and it identifies attributes and outcomes related to HIV/AIDS patients'self-care. The self-care outcomes model was developed based on the Outcomes Model for Health Care Research and literature review. Key variables related to HIV/AIDS self-care were summarized and discussed based on nine dimensions: client inputs, client processes, client outcomes, provider inputs, provider processes, provider outcomes, setting inputs, setting processes, and setting outcomes. This article reveals that self-care in HIV/AIDS is complex and may be influenced by many factors relating to individual, family, and health care system. More research with advanced multivariate statistical models and randomized controlled trial design will help determine the effectiveness of self-care strategies and interventions.     

Health promotion for women with human immunodeficiency virus or acquired immunodeficiency syndrome

PURPOSE: The purpose of this pilot study was twofold: first, to modify Stuifbergen's health promotion intervention initially developed for women with multiple sclerosis for use among women with human immunodeficiency virus or acquired immunodeficiency syndrome (HIV/AIDS) and to evaluate the feasibility of the newly modified health promotion intervention named "Put Health Into Living" (PHIL). The pilot study was completed in two phases. DATA SOURCES: In phase I, data were derived from a literature review, a focus group of women with HIV/AIDS (n= 7), a panel of experts who reviewed the intervention for content, and three female community workers who evaluated the intervention for the context of living with HIV/AIDS, cultural relevancy, and literacy. During phase II, a pretest/posttest one-group design was used to determine the feasibility of the study methods, content, and format of the health promotion intervention among 10 women with HIV/AIDS. CONCLUSIONS: The pilot study demonstrated the importance of a health promotion intervention for a vulnerable population. Participants verbalized the benefits of attending a health promotion program to gain knowledge and skills to promote their health. One woman said, "I have been positive for 20 years now and no one has talked to me just about my overall health." Participants indicated the PHIL intervention offered a supportive group environment, an overall health focus, and an acceptable format. IMPLICATIONS FOR PRACTICE: Health promotion is a desirable goal for persons living with a chronic disease, and the PHIL intervention has the potential to benefit persons living with HIV/AIDS if subsequent evidence is found in further testing of the intervention.     

Perceptions of HIV/AIDS by deaf gay men.

Deaf gay men represent a subpopulation of the gay male community at particularly high risk for HIV/AIDS due to numerous barriers including language, stigma, and inequitable access to health services. The participants in this exploratory pilot study (N = 5) struggled with the ongoing threat of HIV infection and the pervasive nature of AIDS-related debilitation, death, and grief. Whether HIV infected or not, they described living at the intersection of multiple communities--the deaf, gay, and hearing--each characterized by unique communication styles, cultural expectations, and a propensity to marginalize outsiders. Health care providers were perceived as lacking compassion and largely ignorant to the needs of deaf persons, in general, and deaf gay men, in particular. Printed HIV materials were considered culturally inappropriate, incomprehensible, and ineffective. These findings suggest an extraordinary risk for adverse mental and physical health outcomes if care is not appropriately designed for this vulnerable population.     

The AIDS Pandemic: A Nursing Model

The pandemic of acquired immunodeficiency syndrome (AIDS) calls for global cooperation to develop strategies for interventions both to prevent the disease and to care for persons with it. The conceptual framework "Health for all: A model for nursing's contributions" provides guidance for the processes of assessment, diagnosis, planning, implementation of care, and evaluation of mortality and morbidity related to AIDS. The disease challenges the biologic, sociologic, medical-technical, and environmental determinants as they affect health. Specific recommendations for health care interventions are relevant to each determinate, with community health status as the focus.     

Designing a Resource Guide to help promote health in caregiving

Aim.  To describe development of a Resource Guide, one component of a theory-based intervention. The Guide contains information and ideas to illuminate caregivers' self-care knowledge as a basis for organizing and reinforcing self-care activities.
Background.  Inherent in the complexity of caregiving roles is the emergence of caregiving as a responsibility, often overshadowing caregiver's personal care needs. Health care professionals can partner with caregivers to promote caregiver health. Self-Care TALK is a multimodal intervention to support this partnership.
Methods.  Two theoretical perspectives guided Resource Guide content; adult learning theory and the schema model of cognitive behavioural theory. Materials to stimulate conversations about caregivers' personal concerns about self-care were adapted from extant literature. Sources of information were chosen based on caregivers' learning needs and images of health. Areas of development focused on content, reading level/readability, graphic design, and self-evaluation.
Results.  The Resource Guide standardizes Self-Care TALK protocol while personalizing caregivers' self-care. The Resource Guide provides structure for conversations about what self-care is and ways to promote health.
Conclusion.  The Resource Guide promotes a learning environment that complements interests and experiences of older caregivers. Use of the Guide supports and extends caregivers' self-care vocabularies, and helps clarify self-care schemas and health promotion.     

运用健康促进策略开展艾滋病防制过程评价

目的 运用健康促进策略开展艾滋病防制过程评价.方法 回顾总结1989-2006年艾滋病防制工作开展情况,运用健康促进策略进行分析.结果 通过强有力的行政手段干预,建立健全了三级防制领导机构;州县新设立防制艾滋病办公室,公开招考录用专业人员充实防制队伍;增加防治经费投入;设立了1个艾滋病确认实验室和16个初筛实验室;争取了7个国际合作项目,开展高危行为综合干预工作;实施艾滋病防治六项工程;在本辖区伞面开展高危人群综合监测,最大限度发现感染者.结论 采用行政干预能促使健康教育达到预期目的.     

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.     

Correlates of self-care among the independent elderly: self-concept affects well-being.

There was a significant positive correlation between self-care and self-concept, suggesting that psychosocial interventions that enhance an older person's self-concept may be expected to improve self-care and, conversely, that participation in self-care activities may be expected to strengthen self-concept. Although functional health status was not significantly correlated with self-care, it was related to self-concept, suggesting either that functional health has a role in maintaining self-concept among older persons or that self-concept positively contributes to functional health status. Self-concept and self-care can be enhanced in older persons by communicating respect and demonstrating caring behaviors, reinforcing health-promoting behaviors, encouraging activities of daily living that contribute to independence, and by avoiding a focus on self-care deficits.     

The impact of stigma on the self-care behaviors of HIV-positive gay men striving for normalcy.

Since the beginning of the AIDS epidemic in 1981, persons diagnosed with HIV have been the target of stigma. This is particularly significant for HIV-positive gay men who are additionally stigmatized because of negative societal views of homosexuality. The purpose of this grounded theory study was to examine the impact of stigma on the self-care behaviors of HIV-positive gay men. A theoretical sample of 20 HIV-positive gay men participated in this study-15 individual interviews and a focus group with 5 men. These men responded to HIV/AIDS stigma by using various stigma management strategies. Striving for normalcy emerged as the central theme. Participants saw HIV status disclosure as the main route to an affirming social support system and ultimately as a way to resolve any incongruence between self-view and reflected appraisals. Clinical implications, limitations, and suggestions for future research are discussed.     

A strategy for educating health care providers about AIDS: the California Nurses Association's AIDS Train the Trainer Program

The AIDS epidemic is increasing the demand on all levels of health care staff to provide care compassionately and safely to people with AIDS and HIV infection. Only appropriate, ongoing education of all health care workers will maintain an effective health care system as the number of cases rises. However, the fear engendered by the word AIDS can be a serious deterrent to effective care. Adult learning principles and fear reduction techniques provide the foundation for AIDS education. A train the trainer approach provides immediate AIDS expertise to health care providers within their institution or department. With adequate resources and training, health care professionals who are already in the workplace are in the best position to quell hysteria, educate health care workers about appropriate protective measures, and ensure that humane, compassionate care is provided to persons with AIDS and HIV infection.     

Health promoting attitudes and behaviors among persons with disabilities

Despite the recognized importance of maintaining and improving the health status of persons with disabilities, there has been little research conducted to determine their health care attitudes and behaviors and what interventions might serve to enhance their health. Using Pender's Model of Health Promotion (1987), this study investigated the factors associated with the occurrence of health promoting behaviors among 135 adults with disabilities. Staff and peer counsellors from two Independent Living Centres in Texas administered the questionnaires and conducted brief semi-structured interviews with participants. Seventy-three percent of the sample rated their current health as good or excellent. Findings from both interviews and questionnaires suggest that participants are more likely to define health as being able to function well than as simply the absence of illness. High scores on Adaptive definition of health, the Self-Efficacy-Scale, age, and low scores on the Barriers to Health Promotion Activity for Disabled Persons scale accounted for 31% of the variance in scores on a self-report measure of health promoting behaviors. These findings suggest that interventions which address self-perceived barriers to health promotion, work to build participants' sense of mastery of their health behaviors, and encourage a definition of health that is broader than simply absence of illness may be more effective than those that focus only on information about good health practices.     

Reducing the rate of mother-to-child HIV transmission in Africa.

Currently there are about twenty four million HIV/AIDS (human immunodeficiency virus and acquired immunodeficiency syndrome) cases on the continent of Africa. Over the past two years, many health care professionals have been in a stage of denial concerning this problem. According to researchers attending the XIII International AIDS Conference held in Durban, South Africa, the world became aware that cost-effective strategies are needed desperately to stop the rapid spread of HIV/AIDS in Africa. Recent studies suggest that modest antiretroviral drug therapies for HIV-positive pregnant women can reduce one-half of the risk of HIV transmission to the unborn child. Challenges to the governments of Africa such as the high cost of drugs, lack of health care infrastructure and cultural barriers, priority to treat only pregnant women has been a difficult decision, while other infected persons with HIV are not treated.     

HIV/AIDS: a minority health issue

HIV infection among racial and ethnic minorities is an ongoing health crisis. The disproportionate impact of HIV infection on racial and ethnic minorities has affected communities already struggling with many social and economic challenges, such as poverty, substance abuse, homelessness,unequal access to health care, and unequal treatment once in the health care system. Superimposed on these challenges is HIV infection, the transmission of which is facilitated by many of these factors. Although the epidemic is disproportionately affecting all racial and ethnic minorities, within these minority populations women are particularly affected. The care and management of racial and ethnic minorities who have HIV infection has been complicated by the unequal access to health care and the unequal treatment once enrolled in health care. Health insurance status, lack of concordance between the race of the patient and the provider, and satisfaction with the quality of their care all impact on treatment outcomes in this population. In addition, the provider must be aware of the many comorbid conditions that may affect the delivery of care to minority patients living with HIV infection: depression, substance and alcohol abuse, and posttraumatic stress disorders. The impact of these comorbid conditions on the therapeutic relationship, including treatment and adherence, warrants screening for these disorders and treating them when identified. Because the patient provider relationship has been repeatedly identified as a predictor of higher adherence, developing and maintaining a strong therapeutic alliance is critical. Participation of racial and ethnic minorities in HIV clinical trials, as in other disease states, has been very poor. Racial and ethnic minorities have been chronically underrepresented in HIV clinical trials, despite their overrepresentation in the HIV epidemiology. This underrepresentation seems to be the result of a combination of factors including (1) provider bias in referring to clinical trials, (2) mistrust of clinical research, (3) past poor experience with the health care system, and (4) the conspiracy theories of HIV disease. The paucity of minority health care professionals and minority investigators in HIV research further affects minority participation in clinical research. To improve racial and ethnic minority participation in clinical trials a sustained effort is necessary at multiple levels. Increased recruitment and retention is an ongoing need, and one that will not be satisfactorily addressed until there are better community-academic and research partner-ships, and the research questions posed also address issues of concern and significance to the affected community. Reduction in barriers to participation in clinical trials, especially given the many competing needs of racial and ethnic minority patients, is also needed. Multidisciplinary HIV care teams and research staff with training in cultural competency and cultural sensitivity may also be helpful. Prevention of HIV infection remains essential, especially among those seeking care for HIV infection. Despite several published recommendations for the inclusion of HIV prevention in the clinical care setting, studies have documented how few providers actually achieve this goal, especially those who care for disadvantaged patients. Although there are many barriers to discussing HIV risk behaviors and prevention strategies in an office visit,including time constraints and potential provider discomfort in discussing these matters, clinical visits represent an important opportunity to reinforce HIV prevention and possibly decrease further HIV transmission.     

The well-being of gays, lesbians and bisexuals in Botswana

AIMS: To investigate the level of well-being of gays, lesbians and bisexuals (GLBs) in Botswana, how this level of well-being could be promoted and whether their health care needs were met by health care professionals. RATIONALE: It is illegal to engage in same-sex activities in Botswana, punishable by imprisonment. Although Botswana's citizens have one of Africa's best health care systems, little is known about the health status, health care needs and general well-being of Botswana's GLBs. This survey attempted to uncover some of these potential health care needs, impacting on the GLBs' well-being. DESIGN/METHODS: The research framework adopted was the health and human rights approach, placing dignity before rights. A survey design, with structured questionnaires, was used. Snow-ball sampling techniques were used. RESULTS: Results indicated that varying degrees of distress were experienced by 64% of the GLBs in this study. The GLBs identified a need for human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) education and had concerns about their general health, discrimination against them and vulnerability to violence including sexual assaults. CONCLUSIONS: The well-being of the GLBs in Botswana was influenced by both positive internal acceptance of their sexual orientation and negative external acceptance by society. Health care professionals played insignificant roles in the promotion of GLBs' well-being, and could make greater inputs into health education efforts, and more significant contributions towards enhancing the GLBs' levels of well-being. Enhanced collaboration between health professionals and human rights activists are recommended to reduce violations of Botswana's GLBs' dignity and to improve their quality of life, including enhanced access to and utilization of health care services.     

The Nursing Research Center on HIV/AIDS Health Disparities

This report describes the partnership between the schools of nursing at the University of California San Francisco and the University of Puerto Rico to address the need for nursing research on HIV/AIDS health disparities. The partnership led to the creation of the Nursing Research Center on HIV/AIDS Health Disparities with funding from the National Institutes of Health/National Institute of Nursing Research. We provide background information on the disproportionate impact of the HIV/AIDS epidemic on racial and ethnic minorities, describe the major predictors of health disparities in persons at risk for or diagnosed with HIV/AIDS using the Outcomes Model for Health Care Research, and outline the major components of the Nursing Research Center. The center's goal is to improve health outcomes for people living with and affected by HIV/AIDS by enhancing the knowledge base for HIV/AIDS care.