People Living With HIV/AIDS

Purpose This study investigates the relationship among perceived satisfaction from social support, hope, and QOL of PLWHA. Method A cross-sectional in design was applied, among a sample of 160 HIV-infected persons receiving treatment, care, and support from eight community-based NGOs. QOL was assessed using the WHO (QOL)-26 tool, and social support was assessed by use of a modified Sarason’s Social Support Questionnaire. A Hope Assessment Scale was also developed. Results The non-family support network was greater than family support network. Overall satisfaction from social support and hope was significantly correlated with QOL; the greatest effect of social support was on environmental functioning, and the lowest was on social relationships, emotional support was less a predictor of social relationship than other types of supports. Conclusion The effect of perceived satisfaction from social support was through the mediation variable hope. As it has widely been recognized that community-based support is vital for issues of quality of life, strategies to improve social support and hope intervention programs are strongly encouraged. The results of the study have implications for providing care, treatment, and psycho-social support to maintain or enhance quality of life of PLWHA.

The main objective of this review is to provide a preliminary evaluation of the suitability of community-based organizations (CBOs) to contribute to HIV/AIDS prevention, care/support and control programs in Ethiopia. In order to put CBOs and programs in the context of HIV transmission and spread, the role of the Multisectoral HIV/AIDS Strategy (2000-2004) and other government policies and programs in

Book chapter

Drawing on my experience of living with HIV for over two decades, this essay discusses the forms of anxiety and concern that emerged in 1996 in the context of the introduction of HIV combination antiretroviral therapy around the use of so-called 'drug cocktails'.  It shows how these concerns reflect broader anxieties about increasing sexual activity between men at this time. This event  happens to kickstart a corresponding problematisation of gay men's use of recreational drugs–  another sort of 'drug cocktail' - on the same basis. I see the present moral panic over chemsex as the latest instalment of this discourse.

The piece demonstrates the analogous character of antiretroviral therapy and recreational substance use in gay men's practice, arguing that pleasure, self-medication, and experimentation with the conditions of life are concerns that cut across outdated distinctions between pharmaceutical drugs and illicit drugs. Meanwhile, the stigmatised and criminalised status of HIV-positive sex, gay sexuality and illicit drug use produces paranoid subjects and effectively endangers the health and wellbeing of those affected.  It must be countered. Paying attention to the collective experiments of drug users is likely to be much more generative.

I wrote this piece for a collection called Long Term, edited by Scott Herring and Lee Wallace, who invited me to write something about living with HIV.

-----ÖZET: “Türkiye’de ilk” olarak ünlenen bir HIV vakasında da gözlemlenebileceği gibi, AIDS’in ortaya çıkışı toplumlarda hastalığa karşı korkulu bir ilgiye neden olmuştur. Bilinmeyen bir hastalık karşısında toplumun ilk tepkisini değerlendirmeksizin HIV/AIDS algısının sosyal ve etik analizi eksik kalacaktır. Yeni salgın hastalıklarla karşılaşan ilk kesim olan sağlık çalışanlarının tutumu ise tıp etiğince önemlidir. Türkiye’de halkın HIV/AIDS konusunda ortalama bilgi ve bilinç düzeyi idealin altındadır; HIV pozitif insanlar başlangıçtan bugüne toplum tarafından hastalıklarıyla damgalanarak dışlanmakta, kınanmakta ve korkuyla yaklaşılmaktadır. HIV pozitif insanların psikolojik ve sosyal sorunlar yaşamaksızın topluma entegrasyonu için, HIV/AIDS’e dair gerçeklerin açık bir dille ve daha sıkça halka ifade edilmesi, böylelikle marjinalleşmiş haldeki “AIDS” sözcüğünün normalleştirilmesi gerekmektedir.

-----ABSTRACT: The emergence of AIDS in societies caused an anxious interest in the disease, as could be observed in the reportedly first HIV case of Turkey. The ethical and social analysis of the perception of HIV/AIDS will be incomplete without assessing the first reaction of the society upon meeting with an unknown disease. The attitude of the healthcare professionals, the first group facing the new epidemic diseases, is important with respect to the medical ethics. The average level of HIV/AIDS knowledge and awareness of the Turkish people is below the ideal level; and HIV-positive people have been stigmatized, excluded, censured, and treated with fear from the first day till today. For the integration of the people with HIV to the society without experiencing psychological and social problems, the facts concerning HIV/AIDS should be addressed with the public more frequently and in a straightforward manner, thus normalizing the marginalized word of AIDS.

Background/Aim As Thai people living with HIV/AIDS gain increasing access to antiretroviral (ARV) therapy, it is important to evaluate the impact this has not only on clinical outcomes, but also on patients' functional status and well-being. In this study, we translated, culturally adapted and tested the reliability and validity of two widely-used health-related quality of life questionnaires - the MOS-HIV Health Survey and the SF-12 - in people living with HIV/AIDS in Northern Thailand. Methods: Questionnaires were administered to 100 patients at community hospital outpatient ARV clinics in northern Thailand. Reliability was estimated using Cronbach's alpha, while evidence for validity was tested using known-groups comparison based on CD4 group, symptom distress score, bed days and days of reduced activity in the past three months. Results Patients' median age was 36, with 58% female, 58% working as laborers, and 60% completing at least primary education. Median CD4 count was 218 cells/mm3. There were no missing data. For the MOS-HIV and SF-12, mean physical summary scores were 53.1 and 49.0 respectively; mean mental summary scores were 53.4 and 45.6, respectively. Internal consistency coefficients were >0.7 for all but one scale, the PF scale (0.67). As hypothesized, scores were slightly to moderately correlated with CD4 count, symptom score, number of days in bed or with reduced activity. Correlations were higher with physical health scores than with mental health scales. The MOS-HIV discriminated clinical known groups slightly better than the SF-12. Conclusion Both the MOS-HIV and the shorter SF-12 were successfully adapted for people with HIV/AIDS in Northern Thailand, and showed encouraging evidence for reliability and validity. These patient reported questionnaires could be valuable tools in evaluating therapeutic interventions and other innovations in health and social services, and to estimate health needs and population disability related to HIV.

Efforts to increase access to life-saving treatment, including antiretroviral therapy (ART), for people living with HIV/AIDS in resource-limited settings has been the growing focus of international efforts. One of the greatest challenges to scaling up will be the limited supply of adequately trained human resources for health, including doctors, nurses, pharmacists and other skilled providers. As national treatment programmes are planned, better estimates of human resource needs and improved approaches to assessing the impact of different staffing models are critically needed. However there have been few systematic assessments of staffing patterns in existing programmes or of the estimates being used in planning larger programmes. We reviewed the published literature and selected plans and scaling-up proposals, interviewed experts and collected data on staffing patterns at existing treatment sites through a structured survey and site visits. We found a wide range of staffing pattern...

Due to the chronic shortage of health personnel, nurses and midwives now play a fundamental role in the care and treatment of people living with HIV/ AIDS (PLHIV) in Cameroon. This study was therefore design to assess the level of knowledge, attitude and practice with regard to care of PLHIV among nursing and midwifery students in Fako division of Cameroon. A survey was performed between May and July 2015, among 227 nursing and midwifery students (in their second to final year of study), selected from 8 government accredited training institutions in Fako division of Cameroon. An anonymous self-administered semi-structured questionnaire was used to collect data. The Pearson's chi-square test, univariate and multivariate logistic regression analyses adjusting for possible confounders were all performed as part of the statistical analyses. The cutoff of statistical significance was set at p ≤ 0.05. Nursing and midwifery students had a moderate level of HIV/AIDS knowledge (average score of 7.02 on a scale of 11). Attitude towards PLHIV was generally positive (68.7%) but there were some misconceptions and prejudice about PLHIV, with considerable stigmatization (31.3%), unwillingness to share a room with someone infected with HIV (27.7%), and unwillingness to work on PLHIV (23.8%). Good HIV/AIDS knowledge was observed to be the sole independent predictor (p = 0.004) of positive attitude towards PLHIV. Furthermore the confidence of the respondents regarding care of PLHIV was generally moderate. Our results suggest the need for the development of a more appropriate education program in nursing and midwifery institutions in Fako division to reduce the discrepancies between the general knowledge, attitude and practice regarding care of PLHIV.

HIV-related stigma is a global issue. Its perpetuation varies in magnitude across and within countries, and serves as a major barrier to HIV prevention efforts. Due to ignorance about the disease in sub-Saharan Africa, people living with HIV are often stigmatized, and as a result, experience dire consequences. In South Africa, women and adolescent girls are disproportionately infected by HIV. The stigma associated with HIV causes them to live in constant fear of discrimination, isolation, and violence from community members. The stigma also causes them to conceal their HIV status from family members, spouses, or partners, and thus, thwarts any chances of health seeking behavior that can improve upon their quality of life or prevent future transmissions. The stigma associated with HIV impacts women and adolescent girls in South Africa socially, economically and mentally. Given that women and adolescent girls are the population with the greatest HIV prevalence in South Africa, and given that prevention efforts cannot be as successful without addressing the issue of stigma among this group, deliberate commitment and an integrated approach from the government, healthcare professionals, public health officials, and communities are needed to stem the HIV tide in South Africa. These entities need to work together to create an environment where women and adolescent girls feel safe enough to disclose their HIV status and participate in prevention efforts. This article discusses HIV stigma among women and adolescent girls in South Africa. It presents some risk factors that predispose this population in South Africa to HIV, and highlights the social, economic and mental health effects of HIV-related stigma on them. The article further examines current efforts in South Africa to address HIV-related stigma among women and adolescent girls and proffers recommendations for eliminating stigma in order to pave way for effective national HIV prevention.

India has the largest number of people living with HIV/AIDS in Asia and the second largest in the world after South Africa (UNAIDS, 2004). The Indian media play an important role in the social construction of the HIV/AIDS problem nationally. This article uses grounded theory and the concept of media framing to understand the manner in which Indian newspapers make sense of the HIV/ AIDS problem. Specifically, this analysis focuses on the multiple and oftentimes competing frames and resources used by stakeholders with respect the following topical categories (a) severity of HIV/AIDS in India, (b) causes and solutions, and (c) beliefs about who is at risk. The discussion elaborates on the tensions that emerge within the discursive space with respect to the HIV/AIDS frames.

Despite its benefits for people living with HIV/AIDS (PLWHA), home-based care (HBC) may have negative effects on caregivers. Caregivers experience high levels of burden and may be targets of HIV-related prejudice and discrimination. In this cross-sectional survey of 358 caregivers from five hospices across KwaZulu-Natal, South Africa, 49 (13.7%) caregivers personally experienced discrimination as a result of caring for PLWHA. One hundred and seventy (47.5%) marked one or more items on the HIV stigma scale. Eighty-eight percent had low to moderate levels of caregiver burden. People with higher level of burden and higher income were more likely to hold stigmatizing beliefs. Caregivers with the following characteristics: support from a nurse, support from community careworker, HIV stigmatizing beliefs, and personal experience of discrimination as result of caring for PLWHA and low caregiver burden, had more than twice the odds of wanting to care for another PLWA in the future. Overall, caregivers in HBC experience low level of severe caregiver burden. The support offered to caregivers from the hospice and relatively low levels of discrimination encourage expansion of HBC programs for PLWHA.

South Africa is currently moving from a polarised politicisation of the right to treatment, towards contentions over the implementation of treatment programmes for people living with HIV/AIDS. This article examines the politics of local governance in the Lusikisiki HIV/AIDS ...

ENG: Most research has proven positive effects that Peer Support Services (PSS) have on the life of People Living with HIV (PLHIV) in the domain effects of social inclusion, self-esteem, coping with everyday challenges, partial effects on the quality of life (QoL) and uncertain effects on medical outcomes. PLHIV led organizations provides PSS to PLHIV community in Serbia more than 10 years. They were very active and in expansion during the HIV project financed by the Global Fund for AIDS, Tuberculosis and Malaria (2007-2014). They defined content of the PSS, and its implementation was supported through the HIV project. After the HIV project’s cessation and stagnation of all community based PLHIV activities, the Union of PLHIV organizations of Serbia (USOP) has recognized a need to redesign the PSS. A Project of USOP “Toward Standardization of Community Based Social Service Provision for PLHIV in Serbia” had a goal to redesign PSS in line with both, the PLHIV needs and the existing resources of PLHIV led organizations. To meet the goal, evaluation study has been conducted. It had two related cross sectional research: a pre-measure (“baseline”) research at the beginning of the project and, at the end, a post-measure (“exit”) research. In between the PSS was redesigned using “baseline” research findings and their implementation by PLHIV led organization started. Elements of the redesigned PSS are peer counselling (one-on-one), support groups, resocialization, hospital visit, practical assistance, referral, education and networking. We used a convenient sample for both studies. In the both surveys our sample had “intervention” group – PLHIV PSS users (70% of the sample) and “control” group – PLHIV who never used PSS (30%). Within the “baseline” research, we surveyed 202 PLHIV and discussed in 5 focus groups with 34 PLHIV PSS users. Within the “exit” research, we surveyed 173 PLHIV. Questionnaire for the both surveys covered topics related to sociodemographic, sexual behaviour, HIV status, knowledge related to antiretroviral treatment (ART), adherence, retention to care, stigma and discrimination, QoL, use of social and health care services, information’s seeking behaviour, and coverage and satisfaction with the PSS (activities). Questionnaires were mostly administrated by trained PLHIV service providers or, occasionally, by PLHIV him selves. The main topic of FGDs was perception and expectation from PSS and the work of PLHIV led organization. Findings from our study indicate a low socioeconomic status of PLHIV. Most of the respondents (about 80%) were males infected through sex with men. This is in line with the epidemic situation in Serbia, where the HIV is concentrated among men who have sex with men. We find persistent risky sexual behaviour in both groups of respondents (about 40% don’t always use condom for sexual intercourse in the last 12 months; condom hasn’t been used for the last sexual intercourse by about 12% PLHIV with non-regular partners, and by about 25% in “exit” survey and 12% in “baseline” with the regular partner). About 60% of PLHIV have good adherence in the last month without difference between respondents. Stigma and discrimination are still an everyday risk of living with HIV. Only 4% of PLHIV revealed their HIV status publicly, and the rest are hiding it more or less successful. Consequently, only about 20% to 25% PLHIV reported discrimination, with no differences between groups. Use of services other than healthcare is rare. Only 20% (mostly PSS users) use a social care rights and services, mostly financial support. About 35% in “baseline” and 40% in “exit” is satisfied with the general QoL, without differences between groups. However, PSS users are more empowered, have better attitude toward selves and life, and are more satisfied with their social environment. They have better knowledge on ART and they are using diverse sources to inform themselves on ART and their human rights. The main question/need of PLHIV, which have to be addressed by the PSS, is how to live with HIV. New redesigned PSS has good and comprehensive structure, with great potential to address main PLHIV social needs. It has positive effects on PLHIV knowledge related to ART, on mental health and self-esteem, empowerment of PLHIV, and their greater social inclusion. However, the topics covered by PSS should be improved, especially those related to sexual health, adherence and retention in care. Quality of PSS can be continuously improved through capacity building of PLHIV PSS providers, supervision and periodical (participative) evaluation of PSS. / / / /
SRB: Većina istraživanja je pokazala da usluga vršnjačke podrške ima pozitivne efekte na život osoba koje žive sa HIV-om (PLHIV) u domenu socijalne inkluzije, samopoštovanja, suočavanja sa svakodnevnim izazovima, delimično pozitivne efekte na kvalitet života (KŽ) i neodređene efekte na medicinske ishode. Udruženja koja vode PLHIV pružaju uslugu vršnjačke podrške u zajednici PLHIV u Srbiji više od 10 godina. Bile su veoma aktivne i u ekspanziji tokom HIV projekta finanstiranog sredstvima iz donacije Globalnog fonda za AIDS, tuberkulozu i malariju (2007-2014). Tada su definisali sadržaj usluge vršnjačke podrške, a njena implementacija je bila podržana kroz HIV projekat. Nakon zatvaranja HIV projekta i stagnacije aktivnosi u PLHIV zajednici, Unija organizacija Srbije koje se bave zaštitom PLHIV (USOP) je prepoznala potrebu za redizajniranjem usluge vršnjačke podrške. Projekt USOP-a "Prema standardizaciji pružanja socijalnih usluga u zajednici za osobe koje žive sa HIV-om u Srbiji" imao je za cilj da redizajnira uslugu vršnjačke (parnjačke) podrške u skladu sa potrebama PLHIV, ali i sa postojećim resusrsima udruženja koja vode PLHIV. Da bi ostvarili ovaj cilj, sprovedena je evaluaciona studija. Studiju su činile dve povezane studije preseka: pre-interventna („baseline“) studija i post-interventna („exit“) studija. Između ove dve studije, usluga vršnjačke (parnjačke) podrške je redizajnirana na osnovu rezultata „baseline“ istraživanja, nakon čega je počela implementacija ove usluge od strane PLHIV udruženja. Elementi redizajnirane usluge su: parnjačko savetovanje (jedan-na-jedan), grupe samopomoći, resocijalizacija, bolnička poseta, praktična pomoć/terenska asistencija, upućivanje, edukacija i umrežavanje. U oba istraživanja smo koristili prigodni uzorak. Takođe, u obe studije uzorak je imao „interventu“ grupu – PLHIV koji koriste uslugu podrške (70% uzorka) i „kontrolnu“ grupu – PLHIV koji nikad nisu koristili uslugu parnjačke podrške (30%). U okviru „baseline“ istraživanja smo anketirali 202 PLHIV i diskutovali u 5 fokus grupa sa 34 PLHIV koji koriste usluge podrške. U okviru „exit“ istraživanja smo anketirali 173 PLHIV. Upitnici za oba istraživanja su obuhvatala oblasti vezane za sociodmografske podatke, seksualno ponašanje, HIV status, znanje vezano za antiretrovirusnu (ARV) terapiju, adherenciju, ostajanje na lečenju, stigmu i diskriminaciju, KŽ, korišćenje socijalnih i zdravstvenih usluga, informisanje, i pokrivenost i zadovoljstvo uslugom vršnjačke (parnjačke) podrške. Upitnici su uglavnom popunjavali obučeni PLHIV pružaoci usluga ili, u manjoj meri, samostalno PLHIV ispitanici. Glavna tema fokus grupa je bila precepcija i očekivanja koja se imaju od usluge podrške i od samih PLHIV udruženja. Nalazi naše studije ukazuju na postojanje niskog socio-ekonomskog statusa PLHIV. Većina ispitanika (oko 80%) su muškarci inficirani putem seksa sa muškarcima. Ovo je u skladu sa epidemiološkom situacijom u Srbiji, gde je HIV infekcija koncentrovana u populaciji muškaraca koji imaju seksualne odnose sa muškarcima. Našli smo perzistentno rizično seksualno ponašanje u obe grupe ispitanika (oko 40% njih nije koristilo uvek kondom prilikom seksualnih odnosa u poslednjih 12 meseci; kondom nije koristilo oko 12% PLHIV pri seksualnim odnosima sa povremenim partnerima, a oko 25% u „exit“ studiji i 12% u „baseline“ - sa stalnim partnerima). Oko 60% PLHIV ima dobru adherenciju, bez razlika među ispitanicima. Stigma i diskriminacija su i dalje svakodnevni rizik vezan za život sa HIV-om. Samo 4% PLHIV javno obznanjuje svoj status, dok ga ostali kriju manje ili više uspešno. Posledično, svega oko 20% do 25% PLHIV prijavljuje da su bili diskriminisani, bez razlike među grupama. Sem zdravstvenih, upotreba drugih usluga je retka. Svega 20% (pretežno korisnika usluge podrške) koristi prava i usluge socijalne zaštite, mahom novčanu pomoć. Oko 35% u „baseline“ i 40% u „exit“ istraživanju je zadovoljno sa opštim KŽ, bez razlike među grupama. Korisnici usluga su, međutim, osnaženiji, imaju bolji stav prema sebi i životu, i zadovoljniji su svojim društvenim okruženjem. Imaju bolje znanje o ARV terapiji i koriste raznovrsnije izvore informisanja o ATV terapji i ljudskim pravima. Osnovno pitanje/potreba PLHIV, koja treba da bude pokrivena uslugom vršnjačke (parnjačke) podrške je – kako živeti sa HIV-om. Nova redizajnirana usluga vršnjačke (parnjačke) podrške ima dobru i sveobuhvatnu strukturu, sa velikim potencijalom da odgovori na glavne socijalne potrebe PLHIV. Ima pozitivne efekte na znanje PLHIV vezano za ARV terapiju, na mentalno zdravlje i samopoštovanje, osnaženost PLHIV, i njihovu bolju socijalnu inkluziju. Teme koje pokriva usluga, međutim, treba da budu unapređene, posebno one koje se odnose na seksualno zdravlje, adherenciju i ostajanje na lečenju. Kvalitet usluge parnjačke (vršnjačke) podrške može kontinuirano da se unapređuje kroz izgradnju kapaciteta PLHIV pružalaca usluga, superviziju i periodičnu (participativnu) evaluaciju usluge parnjačke (vršnjačke) podrške.

This study examined the prevalence and characteristics of attempted suicide among a representative sample of French Human Immunodeficiency virus (HIV) infected individuals. In 2003, a face-to-face survey was conducted among people living with HIV/AIDS (PLWHA) selected in a random, stratified sample of French hospital departments. Among solicited individuals, 2,932 agreed to participate and were asked if they had ever AS. Among the respondents, 23% had AS. Female gender, younger age, native French citizenship, reporting household financial difficulties, having been HIV-contaminated through homosexual contact or through injection drug use and suffering from lipodystrophy-related symptoms were all independently associated with AS. HIV-discrimination and the lack of social support from family remained independently associated with AS. Our findings indicate a high level of AS among PLWHA and emphasize the multiple roles of factors associated with living with HIV, together with sociodemog...

Summary: In order to assess the impact of an adult HIV/AIDS-related death on the household in general and children in particular, a comparative study of the three types of households was undertaken in Sagli district of Maharashtra. A total of 118 households with an HIV/AIDS death, 100 households with a non-HIV/AIDS related death and 100 households with no deaths were included in the survey. A significant negative impact on the economy of households where an active adult has died due to HIV/AIDS was clearly evident from the responses. Households with HIV/AIDS deaths have reported reduced savings during the period of observation, reduced expenditures on consumer durable items, and disposal of assets in order to raise or supplement income. On social front they have reportedly experienced discriminations and few of them have had to send their children away to distant relatives, and withdraw children from school. Adult deaths due to HIV/AIDS also impacted negatively upon children's ...

Background: There are approximately 72,000 people living with HIV/AIDS (PLHIV) in Peru. Non-adherence to antiret-roviral therapy (ART) is the most important factor for therapeutic failure and the development of resistance. Peru has achieved moderate progress in meeting the 90-90-90 targets, but only 60% of PLHIV receiving ART are virally suppressed. The purpose of this study was to understand ART adherence in the Peruvian context, including developing sociodemographic and clinical profiles, evaluating the clinical management strategies, and analyzing the relationships between the variables and adherence of PLHIV managed at a regional HIV clinic in Lambayeque Province (Northern Peru). Methods: This was a cross-sectional study with 180 PLHIV adults, non-randomly but consecutively selected with self-reported ART compliance (78.2% of the eligible population). The PLHIV profile (PLHIV-Pro) and the Simplified Medication Adherence Questionnaire (SMAQ) were used to collect sociodemographic information, clinical variables, and data specific to ART adherence. Descriptive analysis of sociodemographic and clinical characteristics was performed. Bivariate analysis was performed with the Mann-Whitney test, Chi square test, and Yates correction. Results: The 180 PLHIV sample included 78.9% men, 49.4% heterosexual, 45% with a detectable HIV-1 viral load less than 40 copies/ml, 58.3% not consistently adherent, and only 26.1% receiving Tenofovir + Lamivudine + Efa-virenz. Risk factors significant for non-adherence included concurrent tuberculosis, discomfort with the ART regime, and previous pauses in ART. Multivariate analysis of nested models indicated having children is a protector factor for adherence. Conclusions: Self-reported adherence appeared to be low and the use of first-line therapy is not being prescribed homogeneously. Factors associated with nonadherence are both medical and behavioral, such as having tuberculosis , pausing ART, or experiencing discomfort with ART. The Peruvian government needs to update national technical standards, monitor medication availability, and provide education to health care professionals in alignment with evidence-based guidelines and international recommendations. Instruments to measure adherence need to be developed and evaluated for use in Latin America.

Colecta-PALM is a Web-based application delivered on PDAs that provides behavioral messaging based on risk assessment responses for HIV patients. Usability testing was undertaken with 15 people living with HIV.AIDS (PWLHA) in two clinics in Lima. Sixty percent (9/15) were somewhat/very satisfied with Colecta-PALM, with usefulness rated 3.7/5. Users found the tool innovative, interesting, easy to use, educational, trustworthy, private, and non-judgmental. Colecta-PALM was well-received and easily usable by most.