Help-seeking in a context of AIDS stigma: understanding the healthcare needs of people with HIV/AIDS in China

Despite the rapid increase of HIV infection cases in China, the majority of this population have not yet accessed AIDS-related healthcare services. Most current research in China focuses on HIV prevention and disease control, and pays inadequate attention to the barriers facing HIV-infected individuals in accessing and adhering with healthcare services. This article, as part of a research project on the illness experiences of people with HIV/AIDS in China, aimed to explore these individuals' healthcare experiences, shedding light on the gaps between their needs and existing healthcare services. Data for this qualitative study were collected through individual in-depth interviews with 21 HIV-infected adults in China. The results of data analysis suggest that these individuals' healthcare experiences were greatly affected by social discrimination and the limitations of healthcare resources. While AIDS stigma has reduced the social resources available for this population, HIV-related health institutions were perceived by them as an indispensable source of social support. It is concluded that healthcare institutions, as one of the few places in which HIV-infected people are willing to disclose their HIV positive status, should incorporate social care into healthcare service development and delivery so as to facilitate this population's accessing healthcare services and to address their unmet needs that go beyond the conventional scope of health care. Improving the visibility of people with HIV/AIDS in health care will also have a long-term impact on their own well-being and on HIV prevention in China.     

Stronger health systems for more effective HIV/AIDS prevention and care

Of the 42 million living with HIV/AIDS world-wide some 90% live in developing countries. The international community acknowledges the devastating impact of HIV/AIDS on development and over the past few years resources to control HIV/AIDS have increased considerably. We argue that strengthening of health systems is a necessary prerequisite for improving the prevention of HIV infection and the care of HIV-infected persons. Sexual behaviour change requires a multidisciplinary approach, but health services play a crucial role in detection and treatment of other sexually transmitted infections; HIV counselling and testing; prevention of mother-to-child transmission of HIV; and care of HIV-infected patients. Increasing access to antiretroviral treatment especially poses formidable challenges to health authorities in developing countries. Additional resources for the prevention of HIV-infection and the care of HIV-infected persons may not have the desired impact if health systems in developing countries are not strengthened. Further, any activity in the area of HIV/AIDS prevention and care, carried out within health services, can have a positive ripple effect on other health care activities and vice versa. This interactive effect needs to be acknowledged and built on.     

A time to gain, a time to lose: new directions for western European HIV/AIDS alliances

The complex and varied needs of people with HIV/AIDS have prompted major changes in the way that health care is organized and delivered. In the USA, the Netherlands and the UK, many HIV service providers have formed alliances to better coordinate policies and programs. These structural reforms have been accompanied by extensive reforms in the financing of health services. Drawing upon case studies of seven HIV/AIDS alliances in the Netherlands and the UK, the article examines how alliances are adapting their missions, organizational structures and functions to be responsive to changing community attitudes and the gradual elimination of earmarked HIV/AIDS funding. The case studies suggest strategies for maintaining interorganizational cooperation around public health issues in unstable and competitive funding environments.     

Trends and responsiveness in national resource allocation for needed HIV services: a five year (1996-2000) analysis

A recent study conducted by the Institute of Medicine concluded that there are approximately 1,200 to 1,400 avoidable deaths per year in the U.S. among people living with HIV (PLWH) who do not have health insurance (Institute of Medicine, 2002). The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed by the U.S. Congress in 1990 to provide funding for community-based HIV care services for uninsured and underinsured PLWH--the only Federal program to provide such funding. There is substantial local autonomy in the allocation of CARE Act funds, with planning processes that take place in both States and metropolitan areas. The purpose of this study is to examine trends in the allocation of such funds from 1996 through 2000, the first five years during which effective antiretroviral medications were available for HIV. The study also considers whether these trends were responsive to the evolving modalities of care and the service needs of a changing population of PLWH.     

Satisfaction with innovative community and university health clinic programs for groups of traditionally underserved individuals with HIV/AIDS: empirical models

As the demographics of the populations of affected individuals have changed, systems of care have needed to adapt to be responsive to client needs. This article examines client satisfaction data from seven national demonstration projects funded to enroll individuals from traditionally underserved groups and help them access services using different strategies. Data on client satisfaction ratings were related to indicators of traditionally underserved status, including demographic characteristics, behaviors, and other risk factors using the data modeling method of Exhaustive CHAID (Chi-squared Automatic Interaction Detector). Client groups that were most likely to experience relatively higher and lower levels of satisfaction with services are identified. Overall, all client groups were highly satisfied with the innovative HIV/AIDS services received. The findings illustrate the success of these innovative HIV care models in being responsive and sensitive to the needs of their target populations.     

Risk and vulnerability reduction in the HIV / AIDS pandemic

An estimated 13.2 million men, 10 million women, and 2.7 million children worldwide have been infected with HIV since the beginning of the pandemic, and more than 10,000 people daily acquire HIV infection. 67% and 19% of these infections have occurred in sub-Saharan Africa and Southeast Asia, respectively. Even though the annual number of new HIV infections appears to have reached a plateau in Western Europe and the Caribbean and may be approaching one in sub-Saharan Africa, and the rise of new infection seems to be on the decline in North America, Oceania, and the southeastern Mediterranean, the HIV/AIDS pandemic has not been controlled anywhere in the world and its major impact has yet to come. Prevention activities undertaken by individuals, communities, nations, and international bodies have shown that the spread of HIV can be effectively reduced. Public health interventions against HIV/AIDS emphasize risk reduction strategies through the provision of HIV/AIDS-related information about safe behavior and the promotion of prevention methods. Exclusive reliance upon risk reduction strategies, however, fails to address the contextual issues in which the pandemic is rooted. In order to significantly affect the pandemic, short-term risk reduction interventions must be expanded considerably, adapted to local needs, and replicated worldwide. An expanded response to the pandemic also calls for medium- and long-term risk reduction interventions, including the linking of HIV/AIDS prevention, care, and support work with other actions in the health and social sector, and the remodeling of services to respond more effectively to growing needs. Until recently, such interventions have been neglected or misconstrued as the process of spreading thinly and irresponsibly HIV/AIDS actions within health and social programs. The sustainability and eventual success of HIV prevention will depend upon the capacity of health systems to integrate HIV/AIDS-related activities with other initiatives, while retaining the ability to track the epidemic and account for what is done about it. The influence of contextual factors on vulnerability to HIV/AIDS is discussed.     

HIV/AIDS, sexual and reproductive health: intersections and implications for national programmes

HIV and AIDS have a myriad of effects on sexual and reproductive health and rights, and sexual and reproductive health services are critical for women and men with HIV and AIDS. Yet there has been a dearth of visible, in-depth mainstream attention to the links between sexual and reproductive health and prevention and treatment of HIV/AIDS since the early 1990s among major stakeholders internationally. This paper argues that access to essential sexual and reproductive health care should be provided in HIV/AIDS prevention, care and treatment programmes, and appropriate forms of prevention and treatment of HIV/AIDS should be included in all sexual and reproductive health services as a public health priority, particularly in sex education, family planning and abortion services, pregnancy-related care, sexually transmitted infection (STI) services and services addressing sexual violence. The paper analyzes existing barriers to linking and integrating these services, e.g. at country level due to the traditional training of health workers to implement vertical programmes, separate sources of funding for National AIDS Control Programmes and sexual and reproductive health services, and in international donor programme and UN agency structures. This paper calls for leadership to be exercised by donors, all the UN agencies working together, governments, health service managers and providers, NGOs and advocates in both fields to develop and implement these linkages at country level. Finally, it is crucial that UNAIDS, WHO, UNFPA, UNICEF, the Global Fund to Fight AIDS, TB and Malaria and those working to reach the targets set by the Millennium Development Goals come on board in these efforts.     

The last resort would be to go to the GP'. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS

In England and Wales, departments of Genito-Urinary Medicine have led the clinical response to HIV infection and AIDS (HIV/AIDS). They provide an open-access self-referral service on a basis of strict confidentiality. People with HIV/AIDS have been found to be reluctant to involve their general practitioner (GP) in their care. Previous research has not investigated their decisions about service use in the context of their broader strategies for coping with the multiple psychological and social challenges, which are posed by HIV/AIDS as a chronic, stigmatised condition. We report a depth-interview study of twenty people with HIV/AIDS in a low-prevalence nonmetropolitan urban area of England. Their health care choices were products of complex judgements. Five concerns predominated: expertise, security, rights to care, confidentiality and the maintenance of normality. Transfer to GP care signified a transition from essential wellness to essential illness and represented a loss of biographical continuity. Their other concerns express problems of information management, which are universal features of stigmatising conditions. These may be heightened in the case of locally provided services, where any leakage of discrediting information is likely to impact directly on everyday life. These concerns should be understood and respected in policy initiatives to develop services.     

HIV counselling--a luxury or necessity?

WHO and UNAIDS have consistently promoted HIV counselling as a routine part of HIV testing in developing countries. Nevertheless, in many countries counselling is not considered a crucial accompaniment of testing services, and patients are tested without access to counselling during and after testing. Thus, information on the need for and results of counselling is needed to convince policy-makers and service managers to give greater priority to the development of counselling services. This qualitative study describes informational, social and emotional needs and problems of newly diagnosed seropositive patients attending public health services in Zimbabwe. Their basic factual information on HIV/AIDS was reasonable, but many patients equalled HIV to AIDS and conceptualized their infection as 'social and physical death'. This seriously impeded their capacity to use knowledge of their test results in a constructive way, and stimulated coping by denial and/or secrecy about their HIV status. These avoidant coping strategies discouraged clients from using condoms, seeking social support and taking measures to protect their vulnerable health. The complex and changing nature of clients' needs indicates that common short-cuts in counselling (e.g. giving brief information before and after the HIV test) are seriously flawed as a strategy to prepare clients for effective coping. Comprehensive pre- and post-test counselling are an essential preparation for coping effectively during and immediately after testing. Availability of supportive counselling beyond this first phase is essential to assist clients with needs and problems which will appear over time. Development of counselling interventions should be guided by research into their effectiveness and by national policy guidelines. Replacing fear-inducing HIV campaigns with interactive, constructive information about HIV prevention and care will increase the preparedness of the community as a whole for effective living with HIV.     

HIV, AIDS and human services: exploring public attitudes in West Hollywood, California

The provision of human services associated with HIV and AIDS has been a controversial issue in Western countries, given the degree of stigma attached to AIDS, and the high level of public concern about the possibility of contracting HIV. Previous research on attitudes to controversial human services has identified some key characteristics associated with negative attitudes and resistant 'not-in-my-backyard' behaviour. Attitudes towards HIV- and AIDS-related services may be affected by other factors as well; in particular, they may be related to self-identified sexual orientation, given the role of HIV and AIDS in the emergence of a strong gay political identity. However, little research has yet been conducted to explore how knowledge and attitudes towards these services in particular localities are associated with a range of characteristics of local residents, including sensitive information such as sexual orientation and household HIV status, and how these might contribute to the creation of more accepting environments. This paper provides an analysis of a 1994 city-wide survey conducted in West Hollywood, California. This small city has a large and politically-organized gay and lesbian population, as well as significant numbers of residents in other, diverse social groupings, and has experienced high levels of HIV infection and AIDS relative to the surrounding Los Angeles County. Although issues of HIV and AIDS service provision have been well publicized in the city, residents may be expected to hold rather different sets of knowledge about and attitudes to these services, depending on their personal characteristics. Analysis of the survey data reveals that a large proportion of residents of West Hollywood rated HIV and AIDS services as very important, but there were interesting differences among groups. Most notably, variation in knowledge of services and attitudes to services (rating of importance) was particularly associated with age and language, but was less affected by sexual orientation and household HIV status.     

Replicating PEPFAR's success: how interventions shown to be effective abroad can be applied to the AIDS epidemic in the US

The President's Emergency Plan for AIDS Relief (PEPFAR), which began in 2003, initially responded to the global AIDS epidemic by applying lessons learned in treating the disease in the United States to addressing the emergency abroad. As the program expanded, it evolved to support interventions increasingly tailored to local needs in countries receiving PEPFAR assistance. This global experience has created a knowledge base of how to provide HIV/AIDS prevention, care, and treatment services in low-resource settings. It underscored the importance of treatment adherence, family-centered care, and integration of HIV into broader health care delivery systems. Applying these lessons can help US policy makers address existing gaps in HIV care in the United States, where the availability of HIV treatment has at times masked the continued need for testing, early diagnosis, targeted prevention for key populations, and a solid array of social services for people living with HIV/AIDS and their families. This article identifies PEPFAR practices that merit further exploration for adoption in the United States, including strategies to increase adherence to drug treatment regimens and to ensure that HIV services are broadly integrated with other aspects of health care.     

Oral lesions in infection with human immunodeficiency virus

This paper discusses the importance of oral lesions as indicators of infection with human immunodeficiency virus (HIV) and as predictors of progression of HIV disease to acquired immunodeficiency syndrome (AIDS). Oral manifestations are among the earliest and most important indicators of infection with HIV. Seven cardinal lesions, oral candidiasis, hairy leukoplakia, Kaposi sarcoma, linear gingival erythema, necrotizing ulcerative gingivitis, necrotizing ulcerative periodontitis and non-Hodgkin lymphoma, which are strongly associated with HIV infection, have been identified and internationally calibrated, and are seen in both developed and developing countries. They may provide a strong indication of HIV infection and be present in the majority of HIV-infected people. Antiretroviral therapy may affect the prevalence of HIV-related lesions. The presence of oral lesions can have a significant impact on health-related quality of life. Oral health is strongly associated with physical and mental health and there are significant increases in oral health needs in people with HIV infection, especially in children, and in adults particularly in relation to periodontal diseases. International collaboration is needed to ensure that oral aspects of HIV disease are taken into account in medical programmes and to integrate oral health care with the general care of the patient. It is important that all health care workers receive education and training on the relevance of oral health needs and the use of oral lesions as surrogate markers in HIV infection.     

Closing the implementation gap in services for children affected by HIV/AIDS: from assisting orphans and vulnerable children (OVC) to providing long-term opportunities for economic growth

While delivering innovative care for over 17 million children living with and affected by HIV/AIDS is a priority for today's global health community, most of these children's health needs remain unmet. Concerns about funding, implementation, and transparency continue to obstruct quality care for all. This paper discusses why services supported by macro-level funding, local initiatives, innovative financing, and enhanced long-term development strategies, are imperative. Concurrent advocacy and preventive measures, such as universal access to education, can sustain this investment in human capital. Such efforts may enhance economic growth, expand local capacity, and improve the quality of life in communities currently burdened by the HIV epidemic.     

The AIDS Clinical Trials Information Service (ACTIS): a decade of providing clinical trials information

The AIDS Clinical Trials Information Service (ACTIS) is a central resource for information about federally and privately funded HIV/AIDS clinical trials. Sponsored by four components of the U.S. Department of Health and Human Services, ACTIS has been a key part of U.S. HIV/AIDS information and education services since 1989. ACTIS offers a toll-free telephone service, through which trained information specialists can provide callers with information about AIDS clinical trials in English or Spanish, and a website that provides access to clinical trials databases and a variety of educational resources. Future priorities include the development of new resources to target diverse and underserved populations. In addition, research needs to be conducted on the use of telephone services vs. Web-based information exchange to ensure the broadest possible dissemination of up-to-date information on HIV infection and clinical trials.     

Curriculum guidelines for AIDS education of primary care practitioners: outcome of an authority opinion survey

Curriculum guidelines for the education of primary care practitioners (PCPs) about AIDS and AIDS-related disorders have been developed by the National Fund for Medical Education (NFME). The guidelines resulted from a modified Delphi authority opinion survey with two iterations and have been edited by the authors. The guidelines are intended to support local educational programming in hospitals, medical schools, HMOs, health departments, and other entities that provide educational services to physicians and nurses. The guidelines are intended to be flexible so as to support programs directed at issues of particular local interest as well as more general programs. The guidelines are divided into 12 modules and cover epidemiologic, scientific, clinical, social, and economic issues related to AIDS and HIV infection. NFME will provide, on request, a list of potential faculty who can teach the various modules.     

Encouraging innovation: ten research priorities for achieving universal access to HIV/AIDS prevention, treatment and care in Europe by 2010

When the HIV epidemic officially hit western Europe in the early 1980s, central and eastern Europe were almost completely spared due to the isolation of the Soviet Union. However, in the mid-1990s, reported new cases of HIV in eastern European countries began to increase exponentially. While there have been many declarations and strategies addressing HIV/AIDS, today the goal is universal access to HIV/AIDS prevention, treatment, care and support services by 2010. The articles included in this thematic issue of the Central European Journal of Public Health on HIV/AIDS reflect this, while the ten priorities listed below are immediate and sometimes innovative research needs in the context of preventing HIV among the most-at-risk populations. While by no means exhaustive, they are intended to point out gaps in existing knowledge and thus serve as inspiration for future research efforts.     

中国特色的艾滋病防治策略

本文回顾了35年来我国艾滋病防治事业在三个方面的主要发展成就以及陆续出台的重大防治政策、法律、法规及其对艾滋病防治工作的影响。本文介绍了艾滋病防治队伍建立、发展与完善的过程,展示了疫情监测、感染者管理和治疗、高危人群预防干预等主要防治成就,分析了当前防治工作面临的挑战并提出了建议。     

The use of health services by women with HIV infection.

OBJECTIVE. The purpose of this study is to determine whether women who have been diagnosed with HIV utilize the same volume of medical care services as men who have been diagnosed with HIV. DATA SOURCES. This study uses data from the first wave of interviews of the AIDS Cost and Service Utilization Survey (ACSUS) conducted between May and July of 1991. The first wave of interviews involved 1,949 adults and adolescents, of whom 359 were women. STUDY DESIGN. The ACSUS sample was selected from 26 sites (hospitals, clinics, and physician offices) in ten cities chosen from the 25 cities with the most AIDS cases. Cities are located throughout the nation, and in low, medium, and high prevalence areas. The sites in each city are generally those that treat the highest number of persons with HIV infection. Patients at each site were chosen using disease stage (asymptomatic, symptomatic, and AIDS) and gender as the selection criteria. Utilization equations are estimated for AZT use, outpatient care, and hospitalization. DATA COLLECTION. The ACSUS involves six in-person interviews over an 18-month period. Interviews include questions about the use of medical and support services, insurance status, functional status, and barriers to care during the prior three-month period. PRINCIPAL FINDINGS. A male injection drug user (IDU) with AIDS is 20 percent more likely to be hospitalized than a woman with AIDS, and the hospital cost of treating a male IDU with AIDS is $9,180 more per year than the hospital cost of treating a woman with AIDS. CONCLUSIONS. This study shows that, even after being diagnosed and after having accessed the medical care system, women with AIDS receive fewer services than men with AIDS.