Articles tagged as "Stigma and social exclusion"

The hope and reality of injecting drug use among people living with HIV in Ukraine

Attitudes toward addiction, methadone treatment, and recovery among HIV-infected Ukrainian prisoners who inject drugs: incarceration effects and exploration of mediators.  

Polonsky M, Rozanova J, Azbel L, Bachireddy C, Izenberg J, Kiriazova T, Dvoryak S, Altice FL. AIDS Behav. 2016 Dec;20(12):2950-2960.

In this study, we use data from a survey conducted in Ukraine among 196 HIV-infected people who inject drugs, to explore attitudes toward drug addiction and methadone maintenance therapy (MMT), and intentions to change drug use during incarceration and after release from prison. Two groups were recruited: Group 1 (n = 99) was currently incarcerated and Group 2 (n = 97) had been recently released from prison. This paper's key finding is that MMT treatment and addiction recovery were predominantly viewed as mutually exclusive processes. Group comparisons showed that participants in Group 1 (pre-release) exhibited higher optimism about changing their drug use, were less likely to endorse methadone, and reported higher intention to recover from their addiction. Group 2 participants (post-release), however, reported higher rates of HIV stigma. Structural equation modeling revealed that in both groups, optimism about recovery and awareness of addiction mediated the effect of drug addiction severity on intentions to recover from their addiction.

Abstract access 

Editor’s notes: Despite reductions in HIV incidence and mortality globally, the epidemic in Ukraine remains volatile and continues to expand, especially among people who inject drugs.  People who inject drugs account for more than 40% of people living with HIV.  At 20%, HIV prevalence among Ukrainian people living in prisons is the highest in Europe, with drug injection of opioids being the major driver of transmission. This is due to a concentration of people who inject drugs among prisoners and other incarcerated people, especially people living with HIV. Programmes focusing on prisoners and other incrcerated people may play a central role in HIV prevention since nearly all of them transition back to the community. Opioid agonist therapies including methadone maintenance therapy have been shown to have many benefits including reducing HIV transmission by over 50% among people who inject drugs.  Despite these benefits, moral biases, stigma and ideological prejudices are barriers to opioid agonist therapies scale-up globally including in Ukraine.  Opioid agonist therapies are available free of charge through national and external Global Fund support. However, scale up of opioid agonist therapies and treatment retention in Ukraine have been low, with only about 2.7% of people who inject drugs enrolled. This has constrained HIV prevention efforts.  Adoption of opioid agonist therapies has been especially slow among criminal justice populations. This study compares attitudes towards opioid agonist therapies among currently and previously incarcerated opioid-dependent people living with HIV in Ukraine.

The study uses data from a survey of people living with HIV conducted in Ukraine to explore attitudes to methadone treatment and intentions to change drug use behaviour before and after release from prison.

This study has important implications for future management of people who inject drugs who are living with HIV.  While staff attitudes may undermine the successful opioid agonist therapies delivery in prisons, the findings of this study suggest that prisoners and other incarcerated people are important foci for programmes that should be done in parallel with staff-based activities. The findings also suggest that optimism about recovery while in prison is falsely elevated. This may contribute to individual inability to comprehend addiction as a chronic relapsing condition, which in the absence of treatment, results in 85% relapsing within 12 months of release. Future programmes should take advantage of individuals’ sobriety while in prison and cultivate their ability to recognise the cycle of addiction and incarceration. This optimism should also be channelled to focus on evidence-based programmes, e.g., methadone maintenance therapy that has been associated with reduced illicit drug relapse, HIV risk-taking and reincarceration. Considerable health marketing work also needs to be done to focus on negative attitudes and prejudices about methadone maintenance therapy at both individual and societal level. This would importantly involve rebranding methadone maintenance therapy as a medical treatment for a chronic relapsing condition.

Europe
Ukraine
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Adolescents’ concerns: psychosocial needs of young people living with HIV in Thailand

Psychosocial needs of perinatally HIV-infected youths in Thailand: lessons learnt from instructive counseling.

Manaboriboon B, Lolekha R, Chokephaibulkit K, Leowsrisook P, Naiwatanakul T, Tarugsa J, Durier Y, Aunjit N, Punpanich Vandepitte W, Boon-Yasidhi V. AIDS Care. 2016 Dec;28(12):1615-1622. Epub 2016 Jun 26.

Identifying psychosocial needs of perinatally HIV-infected (pHIV) youth is a key step in ensuring good mental health care. We report psychosocial needs of pHIV youth identified using the "Youth Counseling Needs Survey" (YCS) and during individual counseling (IC) sessions. pHIV youth receiving care at two tertiary-care hospitals in Bangkok or at an orphanage in Lopburi province were invited to participate IC sessions. The youths' psychosocial needs were assessed using instructive IC sessions in four main areas: general health, reproductive health, mood, and psychosocial concerns. Prior to the IC session youth were asked to complete the YCS in which their concerns in the four areas were investigated. Issues identified from the YCS and the IC sessions were compared. During October 2010-July 2011, 150 (68.2%) of 220 eligible youths participated in the IC sessions and completed the YCS. Median age was 14 (range 11-18) years and 92 (61.3%) were female. Mean duration of the IC sessions was 36.5 minutes. One-hundred and thirty (86.7%) youths reported having at least one psychosocial problem discovered by either the IC session or the YCS. The most common problems identified during the IC session were poor health attitude and self-care (48.0%), lack of life skills (44.0%), lack of communication skills (40.0%), poor antiretroviral (ARV) adherence (38.7%), and low self-value (34.7%). The most common problems identified by the YCS were lack of communication skills (21.3%), poor health attitude and self-care (14.0%), and poor ARV adherence (12.7%). Youth were less likely to report psychosocial problems in the YCS than in the IC session. Common psychosocial needs among HIV-infected youth were issues about life skills, communication skills, knowledge on self-care, ARV adherence, and self-value. YCS can identify pHIV youths' psychosocial needs but might underestimate issues. Regular IC sessions are useful to detect problems and provide opportunities for counseling.

Abstract access  

Editor’s notes: The study reports on the psychological needs of young people who acquired HIV in the perinatal period.  The needs were highlighted during counselling sessions and in a survey conducted as part of the Happy-Teen Programme in Thailand. Young people (age 11-18) who have perinatally acquired HIV were recruited in two hospitals and from a service run by an orphanage linked to one of the hospitals. Young people took part in two individual ‘instructive counselling’ sessions, and two survey sessions for a needs-assessment questionnaire. Participants reported higher levels of needs in the counselling sessions compared to the questionnaire. Key areas of need identified included: health attitudes and self-care (e.g., diet, sleep, drug use); issues with sexual risk and difficulties communicating with sexual partners; HIV treatment adherence problems; concerns about HIV-associated stigma; and concerns about peer pressure. The study illustrates the difference in the quality of findings obtained from data collected via the questionnaire in comparison with data collected via sessions with counsellors. The counsellors were people that the young people knew for some time and trusted. The study highlights the importance of counselling with young people to improve self-esteem and health-associated behaviours.  Counsellors are also important to provide referrals for more severe mental health issues. 

Asia
Thailand
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Lies in clinical trials – the truth about data accuracy

Misreporting of product adherence in the MTN-003/VOICE trial for HIV prevention in Africa: participants' explanations for dishonesty.

Montgomery ET, Mensch B, Musara P, Hartmann M, Woeber K, Etima J, van der Straten. AIDS Behav. 2016 Nov 17. [Epub ahead of print]

Consistent over-reporting of product use limits researchers' ability to accurately measure adherence and estimate product efficacy in HIV prevention trials. While lying is a universal characteristic of the human condition, growing evidence of a stark discrepancy between self-reported product use and biologic or pharmacokinetic evidence demands examination of the reasons research participants frequently misrepresent product use in order to mitigate this challenge in future research. This study (VOICE-D) was an ancillary post-trial study of the vaginal and oral interventions to control the epidemic (VOICE) phase IIb trial (MTN 003). It was conducted in three African countries to elicit candid accounts from former VOICE trial participants about why actual product use was lower than reported. In total 171 participants were enrolled between December 2012 and March 2014 in South Africa (n = 47), Uganda (n = 59) and Zimbabwe (n = 65). Data suggested that participants understood the importance of daily product use and honest reporting, yet acknowledged that research participants typically lie. Participants cited multiple reasons for misreporting adherence, including human nature, self-presentation with study staff, fear of repercussions (study termination resulting in loss of benefits and experience of HIV-related stigma), a permissive environment in which it was easy to get away with misreporting, and avoiding inconvenient additional counseling. Some participants also reported mistrust of the staff and reciprocal dishonesty about the study products. Many suggested real-time blood-monitoring during trials would encourage greater fidelity to product use and honesty in reporting. Participants at all sites understood the importance of daily product use and honesty, while also acknowledging widespread misreporting of product use. Narratives of dishonesty may suggest a wider social context of hiding products from partners and distrust about research, influenced by rumors circulating in clinic waiting-rooms and surrounding communities. Prevailing power hierarchies between staff and participants may exacerbate misreporting. Participants recognized and suggested that objective, real-time feedback is needed to encourage honest reporting.

Abstract access  

Editor’s notes: The authors of this insightful paper set out the reasons women gave in a trial of vaginal and oral programmes for inaccurately reporting their behaviour during the trial.  The authors could conduct this study because biologic/pharmacokinetic data were available which showed evidence of product use. These data were shared with individual women. None of the reasons women gave for not telling the truth is surprising. They lied to avoid additional questioning from research staff.  They feared telling the truth would result in being removed from the trial. They feared beingreprimanded. Overall, not telling the truth about product use helped them save face and time. The findings do highlight the power difference between researchers and researched, something that is hard to avoid in many areas of research. This difference was exacerbated in some circumstances by the (reported) harsh behaviour of staff towards women. The ease with which women could manipulate pill counts or product use checks, by discarding unused product is also not surprising.  The perception by some women that the researchers had lied, because of changes in the trial part way through, is important to note. This highlights the importance of clear information when a trial is explained as it begins. It also points to the importance of continuous explanations and checking participant understanding. It cannot be assumed that there is a shared understanding between researcher and researched. This is something that is easily overlooked as a trial progresses and routine visits are established. The authors highlight the value of objective measures on product use.  They also observe that some participants suggested objective, real-time feedback, during trials.  However, the authors also note that for many women lying about aspects of their lives to partners and family, was a way of managing their lives. It could be that ‘real time feedback’ would act as a deterrent to participation for some in such circumstances.  No system of data collection is perfect.  It is, however, very useful to have a timely reminder that no interview data, however collected, can be assumed to be wholly accurate.    

Africa
South Africa, Uganda, Zimbabwe
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Disbelief, stigma, ‘strong blood’ and inevitability affect seroconversion among HIV serodiscordant couples in Uganda

'People say that we are already dead much as we can still walk': a qualitative investigation of community and couples' understanding of HIV serodiscordance in rural Uganda.

Kim J, Nanfuka M, Moore D, Shafic M, Nyonyitono M, Birungi J, Galenda F, King R. BMC Infect Dis. 2016 Nov 10;16(1):665.

Background: Stable, co-habiting HIV serodiscordant couples are a key population in terms of heterosexual transmission in sub-Saharan Africa. Despite the wide availability of antiretroviral treatment and HIV educational programs, heterosexual transmission continues to drive the HIV epidemic in Africa. To investigate some of the factors involved in transmission or maintenance of serodiscordant status, we designed a study to examine participants' understanding of HIV serodiscordance and the implications this posed for their HIV prevention practices.

Methods: In-depth interviews were conducted with 28 serodiscordant couples enrolled in a treatment-as-prevention study in Jinja, Uganda. Participants were asked questions regarding sexual behaviour, beliefs in treatment and prevention, participants' and communities' understanding and context around HIV serodiscordance. Qualitative framework analysis capturing several main themes was carried out by a team of four members, and was cross-checked for consistency.

Results: It was found that most couples had difficulty explaining the phenomenon of serodiscordance and tended to be confused regarding prevention. Many individuals still held beliefs in pseudoscientific explanations for HIV susceptibility such as blood type and blood "strength". The participants' trust of treatment and medical services were well established. However, the communities' views of both serodiscordance and treatment were more pessimistic and wrought with mistrust. Stigmatization of serodiscordance and HIV-positive status were reported frequently.

Conclusions: The results indicate that despite years of treatment and prevention methods being available, stigmatization and mistrust persist in the communities of HIV-affected individuals and may directly contribute to new cases and seroconversion. We suggest that to optimize the effects of HIV treatment and prevention, clear education and support of such methods are sorely needed in sub-Saharan African communities.

Abstract  Full-text [free] access 

Editor’s notes: Expanded access to antiretroviral treatment has significantly reduced HIV-associated mortality. It has also contributed to reduced HIV incidence including in the most highly affected region of sub-Saharan Africa. Most new infections in this region are due to heterosexual transmission, with transmission within HIV serodiscordant couples in marriage or cohabitation thought to account for most new infections. This qualitative study explores the perceptions of members of HIV serodiscordant couples in terms of their understanding of serodiscordance or eventual seroconversion. The authors also explore how this understanding affects their sexual behaviour and adherence to antiretroviral therapy (for people living with HIV).

This sub-study was part of the Highly Active Antiretroviral therapy as Prevention (HAARP) study of treatment as prevention (TasP) among serodiscordant couples. In-depth interviews were conducted between June 2013 and August 2014.  All couples were initially serodiscordant upon recruitment into treatment. Over the course of the study, 14 HIV seronegative participants seroconverted. These individuals and their partners were selected for the sub-study and gender-matched to control subjects who were HIV seropositive participants whose partners did not seroconvert during the study.

The results of the HPTN 052 trial demonstrated a 96% reduction in HIV transmission within serodisordant couples associated with early use of antiretroviral therapy.  In this rural Ugandan setting, the phenomenon of serodiscordance remains poorly understood by people affected by it and the communities surrounding them. Despite extensive education campaigns and communication about HIV prevention various factors affect understanding of serodiscordance. Medication, confusion, mistrust, stigma, and a resulting sense of inevitability may negatively affect couples’ understanding and belief in the phenomenon of serodiscordance. For a variety of reasons, some serodisordant couples also report lack of consistent condom use. This is of particular concern where abstinence has proved to be an unachievable option for many couples. Improved education regarding serodiscordance and ART treatment will be required to address heterosexual transmission and ensure the maintenance of serodiscordance in affected couples.

Africa
Uganda
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‘I wish I could have a life like others’: mental health challenges for young people living with HIV in Tanzania

A qualitative exploration of the mental health and psychosocial contexts of HIV-positive adolescents in Tanzania.

Ramaiya MK, Sullivan KA, K OD, Cunningham CK, Shayo AM, Mmbaga BT, Dow DE. PLoS One. 2016 Nov 16;11(11):e0165936. doi: 10.1371/journal.pone.0165936. eCollection 2016.

Although 85% of HIV-positive adolescents reside in sub-Saharan Africa, little is known about the psychosocial and mental health factors affecting their daily well-being. Identifying these contextual variables is key to development of culturally appropriate and effective interventions for this understudied and high-risk population. The purpose of this study was to identify salient psychosocial and mental health challenges confronted by HIV-positive youth in a resource-poor Tanzanian setting. A total of 24 qualitative interviews were conducted with a convenience sample of adolescents aged 12-24 receiving outpatient HIV care at a medical center in Moshi, Tanzania. All interviews were audio-recorded, transcribed, and coded using thematic analysis. Psychosocial challenges identified included loss of one or more parents, chronic domestic abuse, financial stressors restricting access to medical care and education, and high levels of internalized and community stigma among peers and other social contacts. Over half of youth (56%) reported difficulties coming to terms with their HIV diagnosis and espoused related feelings of self-blame. These findings highlight the urgent need to develop culturally proficient programs aimed at helping adolescents cope with these manifold challenges. Results from this study guided the development of Sauti ya Vijana (The Voice of Youth), a 10-session group mental health intervention designed to address the psychosocial and mental health needs of HIV-positive Tanzanian youth.

Abstract  Full-text [free] access 

Editor’s notes: This article presents the findings of a mixed-methods study with young people living with HIV and accessing care in Moshi, Tanzania. The study was conducted as part of a larger study assessing mental health needs in this population. The article reports on themes from individual qualitative interviews with 24 young people (aged 13-23) who had mental health difficulties that were previously assessed with the scales used in the larger project. Young people reported a wide range of psychosocial issues leading to ongoing mental health challenges.  These were challenges for which they had received little or no psychological support. Issues included internalized, feared and experienced HIV stigma, loss and bereavement from being orphaned.  Additional challenges were stress from poverty and insecurity in the household, isolation and difficulties with disclosure of their HIV status, and direct and vicarious experiences of violence and abuse. Young people also discussed finding strength in spirituality, friendships and especially peer-support from other young people living with HIV. Findings from the overall study are being used to inform the development of a mental health activity model that, if effective, could be scaled up in other low-income settings. 

Africa
United Republic of Tanzania
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HIV incidence halved among injecting drugs users in network outreach programme - Ukraine

HIV incidence among people who inject drugs (PWIDs) in Ukraine: results from a clustered randomised trial.

Booth RE, Davis JM, Dvoryak S, Brewster JT, Lisovska O, Strathdee SA, Latkin CA. Lancet HIV. 2016 Oct;3(10):e482-9. doi: 10.1016/S2352-3018(16)30040-6. Epub 2016 Jul 29.

Background: HIV prevalence among people who inject drugs (PWID) in Ukraine is among the highest in the world. In this study, we aimed to assess whether a social network intervention was superior to HIV testing and counselling in affecting HIV incidence among PWID. Although this was not the primary aim of the study, it is associated with reducing drug and sex risk behaviours, which were primary aims.

Methods: In this clustered randomised trial, PWID who were 16 years of age or older, had used self-reported drug injection in the past 30 days, were willing to be interviewed for about 1 hour and tested for HIV, were not too impaired to comprehend and provide informed consent, and, for this paper, who tested HIV negative at baseline were recruited from the streets by project outreach workers in three cities in southern and eastern Ukraine: Odessa, Donetsk, and Nikolayev. Index or peer leaders, along with two of their network members, were randomly assigned (1:1) by the study statistician to the testing and counselling block (control group) or the testing and counselling plus a social network intervention block (intervention group). No stratification or minimisation was done. Participants in the network intervention received five sessions to train their network members in risk reduction. Those participants assigned to the control group received no further intervention after counselling. The main outcome of this study was HIV seroconversion in the intent-to-treat population as estimated with Cox regression and incorporating a gamma frailty term to account for clustering. This trial is registered with ClinicalTrial.gov, number NCT01159704.

Findings: Between July 12, 2010, and Nov 23, 2012, 2304 PWIDs were recruited, 1200 of whom were HIV negative and are included in the present study. 589 index or peer leaders were randomly assigned to the control group and 611 were assigned to the intervention group. Of the 1200 HIV-negative participants, 1085 (90%) were retained at 12 months. In 553.0 person-years in the intervention group, 102 participants had seroconversion (incidence density 18.45 per 100 person-years; 95% CI 14.87-22.03); in 497.1 person-years in the control group 158 participants seroconverted (31.78 per 100 person-years; 26.83-36.74). This corresponded to a reduced hazard in the intervention group (hazard ratio 0.53, 95% CI 0.38-0.76, p=0.0003). No study-related adverse events were reported.

Interpretation: These data provide strong support for integrating peer education into comprehensive HIV prevention programmes for PWID and suggest the value in developing and testing peer-led interventions to improve access and adherence to pre-exposure prophylaxis and antiretroviral therapy.

Abstract  Full-text [free] access 

Editor’s notes: People who inject drugs are at high risk of HIV infection, and, in many settings, are unlikely to have appropriate access to HIV prevention programmes. This study is a secondary, subgroup analysis of a randomised control of a social network programme for people who inject drugs in Ukraine (the primary outcome was HIV risk taking behaviour). The investigators recruited 256 index users, who subsequently recruited fellow members of their injection network to the study. Half (n=128) of the index participants were randomized to a two-week training programme in risk reduction education. These “peer leaders” were trained with the intention that they would disseminate these skills within their injection networks. The HIV incidence was alarmingly high. After 12 months, for the sub-group of participants who were initially HIV-negative, the incidence of seroconversion was 31.9/100 person-years in the control networks and 18.4/100 person-years in the programme networks, representing a 47% reduction in incidence associated with the programme. This study is notable for its randomized design, low attrition, close collaboration with local non-governmental organizations, a study protocol adaptation process which engaged drugs users and dealers, and a biological outcome measure. Further research can consider the economic costs for each averted HIV infection, whether the programme effects varied by other factors, and assessment of the extent to which the risk reduction skills were shared beyond study participants. The very high incidence, even among those receiving the intervention, emphasize the need for much greater investment in harm reduction approaches.

Europe
Ukraine
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A one-stop shop for HIV and non-communicable disease care in Kibera, Kenya

They just come, pick and go. The acceptability of integrated medication adherence clubs for HIV and non-communicable disease (NCD) patients in Kibera, Kenya.

Venables E, Edwards JK, Baert S, Etienne W, Khabala K, Bygrave H. AIDS Behav. 2016 Oct;20(10):2464-76. doi: 10.1007/s10461-016-1331-z.

Introduction: The number of people on antiretroviral therapy (ART) for the long-term management of HIV in low- and middle-income countries (LMICs) is continuing to increase, along with the prevalence of non-communicable diseases (NCDs). The need to provide large volumes of HIV patients with ART has led to significant adaptations in how medication is delivered, but access to NCD care remains limited in many contexts. Medication Adherence Clubs (MACs) were established in Kibera, Kenya to address the large numbers of patients requiring chronic HIV and/or NCD care. Stable NCD and HIV patients can now collect their chronic medication every three months through a club, rather than through individual clinic appointments.

Methodology: We conducted a qualitative research study to assess patient and health-care worker perceptions and experiences of MACs in the urban informal settlement of Kibera, Kenya. A total of 106 patients (with HIV and/or other NCDs) and health-care workers were purposively sampled and included in the study. Ten focus groups and 19 in-depth interviews were conducted and 15 sessions of participant observation were carried out at the clinic where the MACs took place. Thematic data analysis was conducted using NVivo software, and coding focussed on people's experiences of MACs, the challenges they faced and their perceptions about models of care for chronic conditions.

Results: MACs were considered acceptable to patients and health-care workers because they saved time, prevented unnecessary queues in the clinic and provided people with health education and group support whilst they collected their medication. Some patients and health-care workers felt that MACs reduced stigma for HIV positive patients by treating HIV as any other chronic condition. Staff and patients reported challenges recruiting patients into MACs, including patients not fully understanding the eligibility criteria for the clubs. There were also some practical challenges during the implementation of the clubs, but MACs have shown that it is possible to learn from ART provision and enable stable HIV and NCD patients to collect chronic medication together in a group.

Conclusions: Extending models of care previously only offered to HIV-positive cohorts to NCD patients can help to de-stigmatise HIV, allow for the efficient clinical management of co-morbidities and enable patients to benefit from peer support. Through MACs, we have demonstrated that an integrated approach to providing medication for chronic diseases including HIV can be implemented in resource-poor settings and could thus be rolled out in other similar contexts.

Abstract  Full-text [free] access 

Editor’s notes: As people living with HIV grow older, the chances of multi-morbidities increase. The number of non-communicable disease diagnosis is increasing generally in sub-Saharan Africa. This is not only because of changing lifestyles but also because of better diagnostic skills and ageing populations. The authors of this paper provide valuable information on how HIV and non-communicable disease care can be combined through the provision of ‘adherence clubs’. The clubs in Kibera, Kenya, have practical benefits for people living with more than one condition. The clubs also, as the authors state, provide a way to counter stigma around HIV, because the ‘medication adherence club’ is not disease specific. That said, a very useful and interesting finding from this research was the difference in views between health care workers and patients. The health care workers were often more positive in their views about the impact on stigma, for example, than the patients. It is apparent that sustained promotion of the purpose of the clubs is required. This publicity is necessary not only to spread information about the purpose of the club, but also to ensure people understand who is eligible to attend. If that publicity is successful, and the clubs can be sustained, the provision of an integrated service is an important step forward in chronic disease care models.

Africa
Kenya
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The limits of HIV disclosure for women in 27 countries

The association between HIV disclosure status and perceived barriers to care faced by women living with HIV in Latin America, China, central/eastern Europe, and western Europe/Canada.

Loutfy M, Johnson M, Walmsley S, Samarina A, Vasquez P, Hao-Lan H, Madihlaba T, Martinez-Tristani M, van Wyk J. AIDS Patient Care STDS. 2016 Sep;30(9):435-44. doi: 10.1089/apc.2016.0049. Epub 2016 Aug 23.

Generally, women are less likely than men to disclose their HIV status. This analysis examined the relationship between HIV disclosure and (1) perceived barriers to care and (2) quality of life (QoL) for women with HIV. The ELLA (EpidemioLogical study to investigate the popuLation and disease characteristics, barriers to care, and quAlity of life for women living with HIV) study enrolled HIV-positive women aged ≥18 years. Women completed the 12-item Barriers to Care Scale (BACS) questionnaire. QoL was assessed using the Health Status Assessment. BACS and QoL were stratified by dichotomized HIV disclosure status (to anyone outside the healthcare system). Multilevel logistic regression analysis was used to identify factors associated with disclosure. Of 1945 patients enrolled from Latin America, China, central/eastern Europe, and western Europe/Canada between July 2012 and September 2013, 1929 were included in the analysis (disclosed, n = 1724; nondisclosed, n = 205). Overall, 55% of patients lived with a husband/partner, 53% were employed, and 88% were receiving antiretroviral therapy. Patients who were with a serodiscordant partner were more likely to disclose (p = 0.0003). China had a disproportionately higher percentage of participants who did not disclose at all (nearly 30% vs. <15% for other regions). Mean BACS severity scores for medical/psychological service barriers and most personal resource barriers were significantly lower for the disclosed group compared with the nondisclosed group (p ≤ 0.02 for all). Compared with the disclosed group, the nondisclosed group reported statistically significantly higher (p ≤ 0.03) BACS item severity scores for 8 of the 12 potential barriers to care. The disclosed group reported better QoL. Overall, HIV nondisclosure was associated with more severe barriers to accessing healthcare by women with HIV.

Abstract Full-text [free] access

Editor’s notes: This study drew women participants from Latin America, China, central and eastern Europe and from western Europe and Canada.  China was the only Asian country included and no African countries were included. This is important background information since the first sentence of the abstract ‘women are less likely than men to disclose HIV status’ is less likely to be true for, for example, parts of Africa. The study did not include men. So, no comparison can therefore be made with men’s disclosure behaviour. Nevertheless, the paper draws on data from 27 countries. Most women in the study did have access to ‘efficacious, well-tolerated’ antiretroviral therapy. A number of women, most notably in China, did not disclose their HIV status outside the health care system. Many women disclosed their status to a limited extent (only to some family and close friends). Non-disclosure affected access to health care as well as more general support. This pattern of non- or limited disclosure and barriers to access to care is replicated in many other places. The findings in this paper point to the importance globally of tackling stigma and providing a supportive health care and social setting for people living with HIV, so they can benefit fully from the treatment and care that is available.

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Mental health as a barrier to HIV testing and care

Pathways to HIV testing and care in Goa, India: exploring psychosocial barriers and facilitators using mixed methods.

Mayston R, Lazarus A, Patel V, Abas M, Korgaonkar P, Paranjape R, Rodrigues S, Prince M. BMC Public Health. 2016 Aug 11;16(1):765. doi: 10.1186/s12889-016-3456-4.

Background: Despite recognition of the importance of timely presentation to HIV care, research on pathways to care is lacking. The adverse impact of depression upon adherence to antiretroviral therapy is established. There is emerging evidence to suggest depression may inhibit initial engagement with care. However, the effect of depression and other psychosocial factors upon the pathway to care is unknown.

Methods: We used mixed methods to explore pathways to care of people accessing testing and treatment in Goa, India. Questionnaires including measures of common mental disorder, hazardous alcohol use, cognition and assessment of pathways to care (motivations for testing, time since they were first aware of this reason for testing, whether they had been advised to test, who had given this advice, time elapsed since this advice was given) were administered to 1934 participants at the time of HIV testing. Qualitative interviews were carried out with 15 study participants who attended the antiretroviral therapy treatment centre. Interview topic guides were designed to elicit responses that discussed barriers and facilitators of accessing testing and care.

Results: Pathways were often long and complex. Quantitative findings revealed that Common Mental Disorder was associated with delayed testing when advised by a Doctor (the most common pathway to testing) (AOR = 6.18, 2.16-17.70). Qualitative results showed that triggers for testing (symptoms believed to be due to HIV, and for women, illness or death of their husband) suggested that poor health, rather than awareness of risk was a key stimulus for testing. The period immediately before and after diagnosis was characterised by distress and fear. Stigma was a prominent backdrop to narratives. However, once participants had made contact with care and support (HIV services and non-governmental organisations), these systems were often effective in alleviating fear and promoting confidence in treatment and self-efficacy.

Conclusion: The effectiveness of formal and informal systems of support around the time of diagnosis in supporting people with mental disorder is unclear. Ways of enhancing these systems should be explored, with the aim of achieving timely presentation at HIV care for all those diagnosed with the disease.

Abstract  Full-text [free] access 

Editor’s notes: Late presentation to HIV care is associated with poorer outcomes for individuals living with HIV (increased risk of morbidity and death) and for treatment programmes (increased costs). The focus of this mixed methods study was to improve understanding of the impact of common mental disorders, hazardous alcohol use and cognitive impairment on accessing HIV testing and care in India. Although the investigators report that common mental disorders increased the possibility of delayed testing, internalised stigma and fear of discrimination was a common theme in the qualitative narratives. Stigma is associated with poorer mental health, including emotional distress, depression and reduced psychological functioning. It has also been linked to intermediate health outcomes such as seeking healthcare and adherence to antiretroviral therapy. These results reinforce the need to develop and evaluate programmes to address HIV-associated stigma so that people living with HIV can access care and benefit from treatment. However, development of appropriate programmes requires a better understanding of the complexities of HIV-associated stigma. These include the relationship between stigma, depression and social support and the intersection of HIV-associated stigma and other types of stigma experienced by people living with HIV, such as homophobia and gender discrimination.

Asia
India
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‘Scared of going there’ – barriers to HIV treatment for pregnant women in Tanzania

Stigma, facility constraints, and personal disbelief: why women disengage from HIV care during and after pregnancy in Morogoro region, Tanzania.

McMahon SA, Kennedy CE, Winch PJ, Kombe M, Killewo J, Kilewo C. AIDS Behav. 2016 Aug 17. [Epub ahead of print]

Millions of children are living with HIV in sub-Saharan Africa, and the primary mode of these childhood infections is mother-to-child transmission. While existing interventions can virtually eliminate such transmission, in low- and middle-income settings, only 63% of pregnant women living with HIV accessed medicines necessary to prevent transmission. In Tanzania, HIV prevalence among pregnant women is 3.2%. Understanding why HIV-positive women disengage from care during and after pregnancy can inform efforts to reduce the impact of HIV on mothers and young children. Informed by the tenets of Grounded Theory, we conducted qualitative interviews with 40 seropositive postpartum women who had disengaged from care to prevent mother-to-child transmission (PMTCT). Nearly all women described antiretroviral treatment (ART) as ultimately beneficial but effectively inaccessible given concerns related to stigma. Many women also described how their feelings of health and vitality coupled with concerns about side effects underscored a desire to forgo ART until they deemed it immediately necessary. Relatively fewer women described not knowing or forgetting that they needed to continue their treatment regimens. We present a theory of PMTCT disengagement outlining primary and ancillary barriers. This study is among the first to examine disengagement by interviewing women who had actually discontinued care. We urge that a combination of intervention approaches such as mother-to-mother support groups, electronic medical records with same-day tracing, task shifting, and mobile technology be adapted, implemented, and evaluated within the Tanzanian setting.

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Editor’s notes: The push for universal access to antiretroviral therapy for everyone living with HIV faces many obstacles.  In many parts of the world, pregnant women are offered HIV testing as a part of antenatal care. Treatment is then offered if a woman is found to be HIV-positive. Many women accept this care, having been provided with the information that this is beneficial for their baby and also themselves. Some women who accept treatment take themselves out of care. This can be detrimental not only for the HIV status of their baby, but also for their general antenatal care. As the authors of this paper note, there is a growing body of literature that describes losses to care from the provider perspective. There are also a number of papers about women who have accepted care, who describe why others refuse treatment.  It is unusual to find detailed findings from interviews with women who have dropped out of or refused HIV treatment while pregnant. While the findings are not particularly surprising, the authors of this paper have captured the individual reasons why the 40 women interviewed in their study, left or never entered care. The reasons given underline the challenge of ‘prompt treatment’. Many women were not ready for immediate treatment.  Fears of the clinic layout ‘betraying’ a woman’s status are described. So too are the negative attitudes of health providers as well as family and community members. The authors provide an excellent example of how good qualitative research, conducted and analysed in an exemplary manner, offers valuable insights. This paper provides valuable information on an often hidden minority of women who are not ready or able ‘to test and treat’.

Africa
United Republic of Tanzania
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