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Query: UMLS:C0019693 (HIV)
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The full impact of secondary stigma (stigma directed at family) on an HIV-positive individual is unknown. This qualitative research explores perceptions of secondary stigma in the Vietnamese context and its influence on the ways in which an injection drug user (IDU) copes with HIV infection. Data on experiences learning one's HIV status, disclosure decisions, family reactions, and stigma from family and community were collected through in-depth interviews with 25 HIV-positive IDUs recruited through a health center in Thai Nguyen, Vietnam. Participants felt despair when learning they were HIV-positive and expressed concerns focused on the emotional burden and the consequences of HIV stigma that extended to family. Many participants engaged in self-isolating behaviors to prevent transmission and minimize secondary stigma. Data illustrated the strong value given to family in Vietnam and underscored the importance of secondary stigma in the coping process including gaining social support and engaging in risk reduction.
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PMID:Influence of Perceived Secondary Stigma and Family on the Response to HIV Infection Among Injection Drug Users in Vietnam. 2120 31

HIV/AIDS is having a devastating impact on South Africa and particularly on poor communities. Empowerment of communities has been identified as an important step towards mitigating the consequences and helping communities to overcome the challenges presented. Participatory Action Research (PAR) has been identified as a useful methodology for the purpose of facilitating empowerment. This study explores the challenges involved in implementing PAR in the context of HIV/AIDS and poverty. In this article, the author describes a PAR project that took place in 2003/ 2004 with a group of five Xhosa speaking people living with HIV/AIDS in Masiphumelele, Cape Town. The aims of the study were to: 1. Create an opportunity for the participants to engage in a participatory process aimed at self-awareness and empowerment. 2. To record and analyse this process with the intention of producing insight into the use of PAR in the context of poverty and HIV/AIDS and to identify the challenges involved. The findings of this study highlight some important insights into the process of engaging people in the PAR process and the experiences of HIV positive people living in the context of poverty. The study explores the challenges involved in the process of empowerment and examines the process of "transferring" power and control from the researcher to the participants. Challenges were uncovered both from the point of view of the researcher who had to "let go of control" and participants who had to take on control. Participants struggled with issues of low self-efficacy and learned helplessness. Fluctuations in health also contributed towards alternating periods of hope and despair and these problems had an impact on their motivation to participate in the study. Lack of motivation to participate is a challenge highlighted in the literature and explored in this study. Participation is necessary for a study of this nature to be of benefit to the community, but unfortunately those most in need were found to be least likely to participate. The study also critically examines the research process that was conducted and highlights the positive and negative contribution of the process towards empowerment. Certain aspects of the research process, including the contracting process, were identified as being problematic as they emphasize the power and control of the researcher rather than the participants. Recommendations for future research include: Promoting participation among the disempowered; the Contracting process and Power relations in PAR.
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PMID:Exploring the challenges of implementing Participatory Action Research in the context of HIV and poverty. 2146 18

The problems of the haves differ substantially from those of the have-nots. Individuals in developing societies have to fight mainly against infectious and communicable diseases, while in the developed world the battles are mainly against lifestyle diseases. Yet, at a very fundamental level, the problems are the same-the fight is against distress, disability, and premature death; against human exploitation and for human development and self-actualisation; against the callousness to critical concerns in regimes and scientific power centres.While there has been great progress in the treatment of individual diseases, human pathology continues to increase. Sicknesses are not decreasing in number, they are only changing in type.The primary diseases of poverty like TB, malaria, and HIV/AIDS-and the often co-morbid and ubiquitous malnutrition-take their toll on helpless populations in developing countries. Poverty is not just income deprivation but capability deprivation and optimism deprivation as well.While life expectancy may have increased in the haves, and infant and maternal mortality reduced, these gains have not necessarily ensured that well-being results. There are ever-multiplying numbers of individuals whose well-being is compromised due to lifestyle diseases. These diseases are the result of faulty lifestyles and the consequent crippling stress. But it serves no one's purpose to understand them as such. So, the prescription pad continues to prevail over lifestyle-change counselling or research.The struggle to achieve well-being and positive health, to ensure longevity, to combat lifestyle stress and professional burnout, and to reduce psychosomatic ailments continues unabated, with hardly an end in sight.WE THUS REALISE THAT MORBIDITY, DISABILITY, AND DEATH ASSAIL ALL THREE SOCIETIES: the ones with infectious diseases, the ones with diseases of poverty, and the ones with lifestyle diseases. If it is bacteria in their various forms that are the culprit in infectious diseases, it is poverty/deprivation in its various manifestations that is the culprit in poverty-related diseases, and it is lifestyle stress in its various avatars that is the culprit in lifestyle diseases. It is as though poverty and lifestyle stress have become the modern "bacteria" of developing and developed societies, respectively.For those societies afflicted with diseases of poverty, of course, the prime concern is to escape from the deadly grip of poverty-disease-deprivation-helplessness; but, while so doing, they must be careful not to land in the lap of lifestyle diseases. For the haves, the need is to seek well-being, positive health, and inner rootedness; to ask science not only to give them new pills for new ills, but to define and study how negative emotions hamper health and how positive ones promote it; to find out what is inner peace, what is the connection between spirituality and health, what is well-being, what is self-actualisation, what prevents disease, what leads to longevity, how simplicity impacts health, what attitudes help cope with chronic sicknesses, how sicknesses can be reversed (not just treated), etc. Studies on well-being, longevity, and simplicity need the concerted attention of researchers.THE TASK AHEAD IS CUT OUT FOR EACH ONE OF US: physician, patient, caregiver, biomedical researcher, writer/journalist, science administrator, policy maker, ethicist, man of religion, practitioner of alternate/complementary medicine, citizen of a world community, etc. Each one must do his or her bit to ensure freedom from disease and achieve well-being.Those in the developed world have the means to make life meaningful but, often, have lost the meaning of life itself; those in the developing world are fighting for survival but, often, have recipes to make life meaningful. This is especially true of a society like India, which is rapidly emerging from its underdeveloped status. It is an ancient civilization, with a philosophical outlook based on a robust mix of the temporal and the spiritual, with vibrant indigenous biomedical and related disciplines, for example, Ayurveda, Yoga, etc. It also has a burgeoning corpus of modern biomedical knowledge in active conversation with the rest of the world. It should be especially careful that, while it does not negate the fruits of economic development and scientific/biomedical advance that seem to beckon it in this century, it does not also forget the values that have added meaning and purpose to life; values that the ancients bequeathed it, drawn from their experiential knowledge down the centuries.The means that the developed have could combine with the recipes to make them meaningful that the developing have. That is the challenge ahead for mankind as it gropes its way out of poverty, disease, despair, alienation, anomie, and the ubiquitous all-devouring lifestyle stresses, and takes halting steps towards well-being and the glory of human development.
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PMID:Diseases of poverty and lifestyle, well-being and human development. 2201 59

Forty people over 60 years of age took part in longitudinal research over the course of a year on the impact of the HIV epidemic in southern Uganda. In this paper we focus mainly on the data from 26 of the 40 who were HIV-positive. While we observed that feelings of depression were frequently experienced by many of the people in our study, the state of 'being depressed' was not constant. Participants regularly expressed economic frustration (because of a lack of money to buy food and other commodities including sugar and soap); medical problems (including those related to HIV) as well as old age, the burden of dependents (including concerns about school fees for grandchildren), feelings of sadness and isolation, and a lack of support from others, as well as stigma, whether real or perceived. However, while worries, sorrow and despondent thoughts were reported in many of the interviews across the study, moods fluctuated moving from happiness and hope, to sadness and despair, from month to month. Concerns regarding the psychological wellbeing amongst older people, including those living with HIV and older carers in Uganda deserve greater attention.
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PMID:Despondency among HIV-positive older men and women in Uganda. 2293 Feb 34

This study explores the feelings, experiences, and coping strategies of people living with HIV (PLHIV) in Liuzhou, China. In a southwestern Chinese city with high HIV prevalence, we conducted semi-structured in-depth interviews with 47 PLHIV selected to represent individuals who had acquired HIV via different acquisition routes. Many participants felt severely stigmatized; they commonly reported having very low self-esteem and feelings of despair. Based on style of coping and whether it occurred at the interpersonal or intrapersonal level, four types of coping that participants used to deal with HIV-associated stigma were identified: (1) Compassion (Passive/Avoidant-Interpersonal); (2) Hiding HIV status (Passive/Avoidant-Intrapersonal); (3) Social support (Active/Problem-focused-Interpersonal; and (4) Self-care (Active/Problem-focused-Intrapersonal). Educational and stigma-reduction interventions targeting potential social support networks for PLHIV (e.g., family, close friends, and peers) could strengthen active interpersonal PLHIV coping strategies. Interventions teaching self-care to PLHIV would encourage active intrapersonal coping, both of which may enhance PLHIV quality of life in Liuzhou, China.
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PMID:Coping strategies for HIV-related stigma in Liuzhou, China. 2433 24

Little is available in scholarly literature about how HIV-positive prisoners, especially in low-income countries, access antiretroviral therapy (ART) medication. We interviewed 18 prisoners at a large prison in Namibia to identify barriers to medication adherence. The lead nurse researcher was a long-standing clinic employee at the prison, which afforded her access to the population. We identified six significant barriers to adherence, including (1) the desire for privacy and anonymity in a setting where HIV is strongly stigmatized; (2) the lack of simple supports for adherence, such as availability of clocks; (3) insufficient access to food to support the toll on the body of ingesting taxing ART medications; (4) commodification of ART medication; (5) the brutality and despair in the prison setting, generally leading to discouragement and a lack of motivation to strive for optimum health; and (6) the lack of understanding about HIV, how it is transmitted, and how it is best managed. Because most prisoners eventually transition back to communitysettings when their sentences are served, investments in prison health represent important investments in public health.
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PMID:Namibian prisoners describe barriers to HIV antiretroviral therapy adherence. 2449 71

While global scale-up of prevention of mother-to-child transmission of HIV (PMTCT) services has been expansive, only half of HIV-infected pregnant women receive antiretroviral regimens for PMTCT in sub-Saharan Africa. To evaluate social factors influencing uptake of PMTCT in rural Kenya, we conducted a community-based, cross-sectional survey of mothers residing in the KEMRI/CDC Health and Demographic Surveillance System (HDSS) area. Factors included referrals and acceptability, HIV-related stigma, observed discrimination, and knowledge of violence. Chi-squared tests and multivariate regression analyses were used to detect stigma domains associated with uptake of PMTCT services. Most HIV-positive women (89%) reported blame or judgment of people with HIV, and 46% reported they would feel shame if they were associated with someone with HIV. In multivariate analyses, shame was significantly associated with decreased likelihood of maternal HIV testing (Prevalence Ratio 0.91, 95% Confidence Interval 0.84-0.99), a complete course of maternal antiretrovirals (ARVs) (PR 0.73, 95% CI 0.55-0.97), and infant HIV testing (PR 0.86, 95% CI 0.75-0.99). Community perceptions of why women may be unwilling to take ARVs included stigma, guilt, lack of knowledge, denial, stress, and despair or futility. Interventions that seek to decrease maternal depression and internalization of stigma may facilitate uptake of PMTCT.
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PMID:Shame, guilt, and stress: Community perceptions of barriers to engaging in prevention of mother to child transmission (PMTCT) programs in western Kenya. 2536 Dec 5

The objectives of the research were to explore perceptions of HIV, AIDS and tuberculosis (TB) among individuals enrolled in antiretroviral therapy (ART) at two municipal clinics in Bulawayo, Zimbabwe, and to assess the implications of these perceptions on the provision of HIV and TB care services. Data were collected using the freelist technique to elicit the elements of a cultural domain as well as open-ended interviews with ART clients, conducted during June and July 2009. Participants were recruited through non-probability convenience sampling. The freelist data were analysed using multidimensional scaling and hierarchical clustering, and the interview data were analysed using the grounded theory method. The results suggest that: 1) the participants had substantial knowledge about HIV, AIDS and TB; 2) the participants' perceptions of HIV, AIDS and TB constituted three distinct, though overlapping, cultural domains; 3) because of the availability of ART and TB treatment, a diagnosis of HIV infection or TB alone was generally perceived with hope that one would be able to live a normal life, while AIDS illness or TB/HIV coinfection were associated with notions of death and despair; and, 4) such perceptions may negatively impact the uptake of testing for HIV and TB, and thereby contribute to delayed start of the respective treatment. Health messages should build on these meanings which have the potential to either enhance or compromise available health programmes and their use by people living with HIV or TB.
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PMID:Perceptions of HIV, AIDS and tuberculosis among patients on antiretroviral therapy in Bulawayo, Zimbabwe: implications for the provision of HIV and TB care services. 2585 13

The burden of HIV on caregivers is especially heavy in South Africa where an estimated 5.5 million people were living with HIV in 2006, and where an estimated one in every three to four patients admitted to some public hospitals is HIV-positive. Occupational stress and burnout merit concern in South Africa as the severity and intensity of the HIV epidemic is often perceived as overwhelming, leaving many caregivers with intense feelings of hopelessness and despair. This study explores and describes the experiences, feelings and perceptions of South African caregivers working in various capacities (healthcare, counselling and teaching) in the HIV/AIDS field. A questionnaire investigating stress factors involved in HIV/AIDS-related care, symptoms of occupational stress, and employer support was completed by 243 caregivers. The results specify in what sense these caregivers find their work extremely stressful. Commonly, they battle with bereavement overload, over-identify with their patients, fear occupational exposure to HIV, and find it difficult to cope with their own and patients' stigmatisation and confidentiality issues. The caregivers generally believed that they had not been adequately trained to offer HIV-related counselling; they largely felt unsupported by their employers, family and friends; and they were frequently angry about slow government processes and misleading health messages. Caregivers working in different capacities found HIV-care-related factors equally stressful, while school teachers claimed significantly more symptoms of occupational stress than counsellors and healthcare workers. The results clearly indicate that these categories of caregivers work in extremely difficult circumstances and require support from their employers to prevent burnout. Suggestions on how to assist such caregivers in their work environment are made, and support strategies are discussed.
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PMID:Occupational stress experienced by caregivers working in the HIV/AIDS field in South Africa. 2587 45

The work on this thesis began in 2003 when the global HIV epidemic was out of control. A minority of persons with HIV were benefitting fully from the recently introduced highly efficacious antiretroviral therapy (ART) combinations. Among the global challenges were lack of access to good healthcare, drug toxicity, and emergence of drug-resistant virus. It was unknown how long the drugs could maintain their efficacy in the individual even if administered as intended, and there was a fear that the increased drug pressure would increase the prevalence of drug resistance, subsequently leading to transmission of resistant virus from one individual to another, and thereby waning the treatment options available. Hence, we were far from the ideal conditions where an HIV-infected individual gets to know immediately that he/she is infected, has access to specialized medical and social support, receives a drug combination which effectively suppresses the virus and has no side effects, and is free of co-morbid conditions both before and after he/she gets infected. The nine papers on which this thesis is based each aimed to provide new knowledge to aspects of the above. Late diagnosis and late presentation to clinical care continue to be major barriers to improved HIV management. We used nation-wide hospital registries to explore the potential for an indicator disease-based HIV testing strategy. A range of conditions that were manifestations of the HIV infection itself were found to be associated with highly increased risk of HIV diagnosis during the coming year, but less so three to five years later. Other conditions were associated with an almost constant five-year long increased risk of being diagnosed with HIV because they share behavioural risk factors with HIV, making them indicators of not only current HIV but also of future HIV acquisition. Hence, indicator condition-based testing should be adapted to the local epidemic and could be a valuable addition to the existing detection practice. Once diagnosed, getting the full benefit of modern HIV care requires access to a good healthcare system. We compared temporal trends in quality and quantity of ART introduction in Den-mark and Greenland. Despite similar levels of health worker education and economic resources, ART implementation and mortality decline in Greenland lacked several years behind Denmark. The study reminded us that although economy may be a prerequisite for implementing an effective HIV care system, it is certainly not all it takes. The nationwide nature of the Danish HIV Cohort Study also allowed us to study a number of time trends at the population level. Despite what was feared, we found that the prevalence of triple-drug class virological failure (TCF) seemed to have stabilized after 2000; that the incidence rates of drug resistance acquisition were decreasing during 1999-2005; and that the prevalence of potential transmitters of drug-resistant HIV decreased during 1997-2004. We also looked at some of the consequences of virological failure and drug resistance and found that even modest levels of viraemia were associated with a high risk of future failure and death, and that in persons who have experienced TCF, the number and pattern of resistance mutations were independent predictors of death. Hence, despite the overall positive trends in virological failure and drug-resistance development at the population level, our findings underline the crucial importance of always having an effective treatment option available for the individual patient with drug-resistant virus. As mortality was declining for persons with access to ART and good HIV care, it became important to know how long persons with HIV could expect to live compared to the general population. We projected long-term survival and found that a 25-year old person with HIV and without hepatitis C virus (HCV) co-infection had a 50 per cent chance of surviving another 39 years, only 12.2 years less than a person in a matched general population cohort would survive. With improved survival and declining HIV-related co-morbidity, non-HIV related co-morbidity became a more visible contributor to the health status of persons with HIV. We assessed the impact of non-HIV related comorbidity acquired before the person became infected with HIV. We found that 32% of the observed mortality in our cohort was due to HCV and co-morbidities measured by the Charlson Comorbidity Index, 13% corresponded to the background mortality in the population, and that only 55% of the mortality could be attributed to HIV. Our findings confirmed that persons acquiring HIV differ at large from the general population, and that we should not expect overall mortality rates in populations with HIV to reach the levels in the general population. This thesis attempted to map some of the many challenges on the road towards increased survival of individuals and populations with HIV up to a level, which today in many settings is close to that of the general population. The studies in this thesis have each paid their modest contribution to show how crucially important it is to be diagnosed in time, to have access to a well-functioning health system, and to keep free of co-morbidity both before and after acquiring HIV. After many years of struggle and despair, and thanks to enormous advances in prevention and treatment, we are now looking towards a promising future.
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PMID:The road to success. Long-term prognosis for persons living with HIV in Denmark - time trends and risk factors. 2683 3


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