‘I am doing fine only because I have not told anyone’: The necessity of concealment in the lives of people living with HIV in India

In HIV prevention and care programmes, disclosure of status by HIV-positive individuals is generally encouraged to contain the infection and provide adequate support to the person concerned. Lack of disclosure is generally framed as a barrier to preventive behaviours and accessing support. The assumption that disclosure is beneficial is also reflected in studies that aim to identify determinants of disclosure and recommend individual-level measures to promote disclosure. However, in contexts where HIV infection is stigmatised and there is fear of rejection and discrimination among those living with HIV, concealment of status becomes a way to try and regain as much as possible the life that was disrupted by the discovery of HIV infection. In this study of HIV-positive women and children in India, concealment was considered essential by individuals and families of those living with HIV to re-establish and maintain their normal lives in an environment where stigma and discrimination were prevalent. This paper describes why women and care givers of children felt the need to conceal HIV status, the various ways in which people tried to do so and the implications for treatment of people living with HIV. We found that while women were generally willing to disclose their status to their husband or partner, they were very keen to conceal their status from all others, including family members. Parents and carers with an HIV-positive child were not willing to disclose this status to the child or to others. Understanding the different rationales for concealment would help policy makers and programme managers to develop more appropriate care management strategies and train care providers to assist clients in accessing care and support without disrupting their lives.

...[E]very participant was extremely concerned about concealment and described various means they employed in order to achieve this. These included hiding their ART registers, decanting their medication and leaving the pill boxes at the clinic, using a generic container to store the pills and coming up with alternate explanations for visits to the clinic and taking medication:

I keep the card in a cover and then keep it inside a cupboard below the sarees. Once a month when I come here, I take it from the cupboard and bring it here.

(Widow living with HIV, W1)

I bring one box from my home, transfer the tablets to it and leave this box here only.

(Widow living with HIV, W6)

There used to be an LIC (insurance) office just opposite this hospital so whenever I come here, I tell people who ask me where I am going that I am going to pay the premium. Luckily no one knows that the office has been shifted from here.

(Caregiver of HIV-positive child, PO9)

They ask me why I am taking these tablets. I tell them that I am taking this for fever.

(Woman living with HIV, WH5)... 

Full article at:   http://goo.gl/3MpCQU

By:  Mathew Sunil George a , * and Helen Lambert b

a Indian Institute of Public Health, Delhi, India

b School of Social and Community Medicine, University of Bristol, Bristol, UK

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Who Comes Out With Their Mental Illness and How Does It Help?

Coming out with mental illness may be an effective strategy for reducing self-stigma. This study examined predictors and consequences of coming out. Participants (N = 106) with severe mental illness who reported being out (n = 79) or not out (n = 27) endorsed benefits of being out (BBOs) and reasons for staying in. Predictors from baseline measures were self-stigma, insight, and psychiatric diagnosis. Three outcome measures-basic psychological needs, care engagement, and depression-were also completed at baseline and 1-month follow-up. 

Among participants already out, BBOs and reasons for staying in were significantly and independently associated with self-stigma, insight, and lifetime affective diagnoses. In terms of consequences, BBOs were associated with cross-sectional and 1-month measures of engagement for those already out, but not for closeted participants. 

Among closeted participants, BBOs were associated with baseline and 1-month measures of basic psychological needs. 

Implications for strategies meant to promote disclosure in order to decrease self-stigma are considered.

Purchase full article at:   http://goo.gl/vS84PJ

By:  Corrigan PW1, Michaels PJ, Powell K, Bink A, Sheehan L, Schmidt A, Apa B, Al-Khouja M.

• 1*Illinois Institute of Technology, Chicago, IL; and †Louis Stokes Cleveland Department of Veterans Affairs Medical Center, Cleveland, OH. 

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Sex and Secrecy: How HIV-Status Disclosure Affects Safe Sex among HIV-Positive Adolescents

HIV-positive adolescents who engage in unsafe sex are at heightened risk for transmitting or re-acquiring HIV. Disclosure of HIV-status to sexual partners may impact on condom use, but no study has explored the effects of (i) adolescent knowledge of one's HIV-status, (ii) knowledge of partner status and (iii) disclosure to partners, on safer sex behaviour. 

This study aimed to identify whether knowledge of HIV-status by HIV-positive adolescents and partners was associated with safer sex. Eight fifty eight HIV-positive adolescents (10–19 years old, 52% female, 68.1% vertically infected) who had ever initiated antiretroviral treatment in 41 health facilities in the Eastern Cape, South Africa, were interviewed using standardised questionnaires. Quantitative analyses used multivariate logistic regressions, controlling for confounders. Qualitative research included interviews, focus group discussions and observations with 43 HIV-positive teenagers and their healthcare workers. N = 128 (14.9%) of the total sample had ever had sex, while N = 109 (85.1%) of sexually active adolescents had boy/girlfriend. In total, 68.1% of the sample knew their status, 41.5% of those who were sexually active and in relationships knew their partner's status, and 35.5% had disclosed to their partners. 

For adolescents, knowing one's status was associated with safer sex (OR = 4.355, CI 1.085–17.474,p = .038). Neither knowing their partner's status, nor disclosing one's HIV-status to a partner, were associated with safer sex. HIV-positive adolescents feared rejection, stigma and public exposure if disclosing to sexual and romantic partners. Counselling by healthcare workers for HIV-positive adolescents focused on benefits of disclosure, but did not address the fears and risks associated with disclosure. 

These findings challenge assumptions that disclosure is automatically protective in sexual and romantic relationships for HIV-positive adolescents, who may be ill-equipped to negotiate safer sex. There is a pressing need for effective interventions that mitigate the risks of disclosure and provide HIV-positive adolescents with skills to engage in safe sex.

Below:  Rates of safe sex by type of disclosure

Below:  Levels of disclosure from HIV-positive adolescents to their partners (boyfriend or girlfriend)

Full article at:   http://goo.gl/1NXOCZ

By:  Elona Toska, a , * Lucie D. Cluver, a , b Rebecca Hodes, c and Khameer K. Kidia d

^aCentre for Evidence-Based Intervention, Department of Social Policy & Intervention, University of Oxford Barnett House, Oxford, UK

^bDepartment of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur Hospital, Observatory, Cape Town, South Africa

^cAIDS and Society Research Unit, Centre for Social Science Research, University of Cape Town, Cape Town, South Africa

^dIcahn School of Medicine at Mount Sinai, New York, USA

^* Corresponding author. Email: ku.ca.xo.ips@aksot.anole

  

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The Need to Know: HIV Status Disclosure Expectations & Practices among Non-HIV-Positive Gay & Bisexual Men in Australia

Although there is evidence of increasing overall rates of HIV status disclosure among gay and bisexual men, little is known about men's disclosure expectations and practices. 

In this study, we investigate the importance non-HIV-positive men in Australia vest in knowing the HIV status of their sexual partners, and the extent to which they restrict sex to partners of the same HIV status, and their HIV disclosure expectations. Data were collected through a national, online self-report survey. 

Of the 1044 men included in the study, 914 were HIV negative and 130 were untested. Participants completed the assessment of socio-demographic characteristics, HIV status preferences, and disclosure expectations and practices. Participants also completed reliable multi-item measures of perceived risk of HIV transmission, expressed HIV-related stigma, and engagement with the gay community and the community of people living with HIV. 

• A quarter (25.9%) of participants wanted to know the HIV status of all sexual partners, and 
• one-third (37.2%) restricted sex to partners of similar HIV status. 
• Three quarters (76.3%) expected HIV-positive partners to disclosure their HIV status before sex, compared to 41.6% who expected HIV-negative men to disclose their HIV status. 
• Less than half (41.7%) of participants reported that they consistently disclosed their HIV status to sexual partners. 

Multivariate linear regression analysis identified various covariates of disclosure expectations and practices, in particular of disclosure expectations regarding HIV-positive men. Men who expected HIV-positive partners to disclose their HIV status before sex more often lived outside capital cities, were less educated, were less likely to identify as gay, perceived more risk of HIV transmission from a range of sexual practices, were less engaged with the community of people living with HIV, and expressed more stigma towards HIV-positive people. 

These findings suggest that an HIV-status divide is emerging or already exists among gay men in Australia. HIV-negative and untested men who are most likely to sexually exclude HIV-positive men are less connected to the HIV epidemic and less educated about HIV risk and prevention.

Expectations of disclosure, consistent self-disclosure, and of serostatus preferences.

	Mean (SD)	Agree (%)
I only have sex with someone whose HIV status I know	2.54 (1.42)	25.9
I only have sex with someone whose HIV status is similar to mine	2.88 (1.51)	37.2
I'd expect an HIV+ man to tell me he was HIV+ before we had sex	4.13 (1.29)	76.3
I'd expect an HIV- man to tell me he was HIV- before we had sex	3.14 (1.48)	41.6
I always tell my sex partner what my HIV status is before we have sex	3.11 (1.54)	41.7

In this study, we found a number of factors to be associated with expecting disclosure from HIV-positive men. Multivariate analyses showed that HIV-negative and untested men who expected HIV-positive men to disclose their HIV status were more likely to live outside capital cities, were less likely to have a university education, perceived greater risk of HIV transmission from a range of sexual practices, expressed more HIV-related stigma, and were less engaged with the community of PLHIV. We found that HIV-negative and untested men who expected their HIV-negative sex partners to disclose their HIV status were more likely to live outside capital cities, less likely to have a university education, and perceived greater risk of HIV transmission from a range of sexual practices. Consistent self-disclosure of their HIV status among these HIV-negative and untested men was also associated with living outside capital cities and perceiving greater risk of HIV transmission from a range of sexual practices, as well as with a lower number of sexual partners in the past year.

Perceiving greater risk of HIV transmission from engaging in a range of sexual practices with an HIV-positive partner whose viral load is unknown was independently associated with disclosure expectations for HIV-positive and HIV-negative men, as well as with consistent self-disclosure. This association between HIV status disclosure expectations and practices and perceived risk suggests a strong association between concern about HIV and identifying and avoiding potential sexual partners who are HIV positive. The association between expectations of HIV-positive status disclosure and both greater HIV-related stigma and less engagement with the community of PLHIV, suggests broad social exclusion and provides further evidence of a serostatus divide among gay men.

These findings of high expectations of HIV-positive men to disclose, and strong preferences among some men to exclude HIV-positive men as sex partners indicate the paradox of disclosure for HIV-positive men. They are expected to disclose their HIV status, and yet doing so may result in being rejected as a potential partner. Also, although the dramatic increases in disclosure of HIV status to sex partners documented over the past decade may have been influenced by the increasing adoption of risk-reduction strategies such as serosorting, our findings provide evidence of high expectations to disclose HIV-positive status in general. These findings also suggest, as we have argued elsewhere, that HIV-related stigma is a continuing issue among gay men, especially in the area of sex and relationships (de Wit et al., ²⁰¹³). Such stigmatizing practices may also have a negative effect on current strategies that encourage men to undertake more frequent HIV testing.

  

Full article at:   http://goo.gl/4E1uAw

By:  Dean A. Murphy, ^{a , b , *} John B.F. de Wit, ^{a , c} Simon Donohoe, ^d and Philippe C.G Adam ^a

^aCentre for Social Research in Health, UNSW, Sydney, Australia

^bNational Drug Research Institute, Curtin University, Melbourne, Australia

^cDepartment of Social and Organizational Psychology, Utrecht University, Utrecht, The Netherlands

^dAustralian Federation of AIDS Organisations, Sydney, Australia

^* Corresponding author. Email: ua.ude.wsnu@yhprum.d

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The Impact of Criminalization of HIV Non-Disclosure on the Healthcare Engagement of Women Living with HIV in Canada

Introduction

In 2012, the Supreme Court of Canada ruled that people living with HIV (PLWH) must disclose their HIV status to sexual partners prior to sexual activity that poses a “realistic possibility” of HIV transmission for consent to sex to be valid. The Supreme Court deemed that the duty to disclose could be averted if a person living with HIV both uses a condom and has a low plasma HIV-1 RNA viral load during vaginal sex. This is one of the strictest legal standards criminalizing HIV non-disclosure worldwide and has resulted in a high rate of prosecutions of PLWH in Canada. Public health advocates argue that the overly broad use of the criminal law against PLWH undermines efforts to engage individuals in healthcare and complicates gendered barriers to linkage and retention in care experienced by women living with HIV (WLWH).

Methods

We conducted a comprehensive review of peer-reviewed and non-peer-reviewed evidence published between 1998 and 2015 evaluating the impact of the criminalization of HIV non-disclosure on healthcare engagement of WLWH in Canada across key stages of the cascade of HIV care, specifically: HIV testing and diagnosis, linkage and retention in care, and adherence to antiretroviral therapy. Where available, evidence pertaining specifically to women was examined. Where these data were lacking, evidence relating to all PLWH in Canada or other international jurisdictions were included.

Results and discussion

Evidence suggests that criminalization of HIV non-disclosure may create barriers to engagement and retention within the cascade of HIV care for PLWH in Canada, discouraging access to HIV testing for some people due to fears of legal implications following a positive diagnosis, and compromising linkage and retention in healthcare through concerns of exposure of confidential medical information. There is a lack of published empirical evidence focused specifically on women, which is a concern given the growing population of WLWH in Canada, among whom marginalized and vulnerable women are overrepresented.

Conclusions

The threat of HIV non-disclosure prosecution combined with a heightened perception of surveillance may alter the environment within which women engage with healthcare services. Fully exploring the extent to which HIV criminalization represents a barrier to the healthcare engagement of WLWH is a public health priority.

Below:  Summary of the historical and current case law for HIV non-disclosure, reflecting two key rulings by the Supreme Court of Canada

Below:  Gardner's cascade of HIV care. Figure illustrating key steps in the cascade of HIV care, from primary HIV infection to viral suppression 

Full article at:   http://goo.gl/p69YEx

By:   Sophie E Patterson,1,2 M-J Milloy,2,3 Gina Ogilvie,3 Saara Greene,4 Valerie Nicholson,1 Micheal Vonn,5 Robert Hogg,1,2 and Angela Kaida§,1

¹Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada

²BC Centre for Excellence in HIV/AIDS, St Paul's Hospital, Vancouver, BC, Canada

³Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada

⁴School of Social Work, McMaster University, Hamilton, ON, Canada

⁵British Columbia Civil Liberties Association, Vancouver, BC, Canada

^§Corresponding author: Angela Kaida, Faculty of Health Sciences, Simon Fraser University, BLU 10522, 8888 University Drive, Burnaby, BC, Canada V5A1S6. Tel: +1 778 782 9068. Fax: +1 778 782 5927. (Email: ac.ufs@adiak_alegna)

  

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Condom Use Determinants and Practices among People Living with HIV in Kisii County, Kenya

The male condom remains the single, most efficient and available technology to reduce sexual transmission of HIV as well as sexually transmitted infections. 

This study sought to establish condom use determinants and practices among people living with HIV (PLHIVs) in Kisii County, Kenya. We interviewed 340 PLHIVs and 6 health workers. Although most PLHIVs had correct knowledge and approved condoms as effective for HIV prevention, consistent use and condom use at last sex were notably low especially among PLHIVs aged 18 - 24, those who depended on remittances from kin as main source of income, as well as during sex with secondary and casual partners. 

This study notes that knowledge on various benefits of using condoms is associated with enhanced condom use practices. Non-disclosure of HIV status to secondary and casual partners remains a key barrier to condom use among PLHIVs 

Our observations highlight the need to further promote condom use among specific PLHIVs socio-demographic groups who continue to exhibit low condom use rates.

...Overall, this study found that most participants (77%) used a condom the last time they had sex. Condom use at last sex is a widely used indicator in sexual behavior research. This result was much higher than the 10% observed in Kenya and Malawi five years ago among PLHIVs, probably due to increased investment in couple risk reduction among PLHIVs in recent years [29]. Although levels of condom use have increased significantly in high HIV burden countries over the past few years, it should be noted that this varies largely among various demographic groups, with young women recording low use levels [30]. A recent study in Kenya noted that low condom use could be attributed to demand side factors, highlighting the importance of building demand for condoms in the context of HIV prevention [15]. Demand-side barriers for condoms as a HIV preventive strategy are many. Much as the traditional barriers to condom use still exist, there are emerging barriers such as perceptions due to the knowledge that transmission risks lower with various biomedical interventions – voluntary medical male circumcision, post-exposure prophylaxis and antiretroviral therapy. Similarly, risk perceptions for the HIV infection are continuously modified in the era of effective therapy, as people vary their perceptions of potential consequences of an infection. These potential risk compensation effects are being closely scrutinized, but the dynamics are complex to track [30]. There is thus need to clearly communicate to HIV positive clients scientific facts not only on condom use, but also on other prevention methodologies...

Full article at:   http://goo.gl/LdkGTm

By:   Wamalwa Emmanuel,*,1 Neyole Edward,2 Poipoi Moses,3 Ringera William,4 Otomu Geoffrey,5 Bitok Monicah,6 andMbaluka Rosemary1

¹Health Department, CARE International, Nairobi, Kenya

²Department of Disaster Preparedness and Engineering Management, Masinde Muliro University of Science and Technology, Kakamega, Kenya

³Department of Educational Psychology, Masinde Muliro University of Science and Technology, Kakamega, Kenya

⁴Health Department, CARE International, Kisii Kenya

⁵County Health Directorate, Kisii County Government, Kisii Kenya

⁶Ministry of Health, The National Government, Nairobi, Kenya

^*Address correspondence to this author at the Health Department, CARE International, P.O Box 27578, (00100) Nairobi, Kenya; Tel: (+254) 721291260; E-mail: ek.ro.erac@awlamaw, Email: moc.oohay@awlamawleunamme

  

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Keeping Confidence: HIV & the Criminal Law from HIV Service Providers’ Perspectives

We present qualitative research findings about how perceptions of criminal prosecutions for the transmission of HIV interact with the provision of high-quality HIV health and social care in England and Wales. Seven focus groups were undertaken with a total of 75 diverse professionals working in clinical and community-based services for people with HIV. 

Participants’ understanding of the law in this area was varied, with many knowing the basic requirements for a prosecution, yet lacking confidence in the best way to communicate key details with those using their service. Prosecutions for HIV transmission have influenced, and in some instances, disrupted the provision of HIV services, creating ambivalence and concern among many providers about their new role as providers of legal information. The way that participants approached the topic with service users was influenced by their personal views on individual and shared responsibility for health, their concerns about professional liability and their degree of trust in non-coercive health promotion approaches to managing public health. 

These findings reveal an underlying ambivalence among many providers about how they regard the interface between criminal law, coercion and public health. It is also apparent that in most HIV service environments, meaningful exploration of practical ethical issues is relatively rare. The data presented here will additionally be of use to managers and providers of HIV services in order that they can provide consistent and confident support and advice to people with HIV.

...Understanding the law

Accurate understanding of and ability to communicate about the law are two important and distinct skills for those who inform service users about the criminal law or are expected to field questions on the topic. Many participants had a basic understanding of the conditions that could lead to a prosecution.

I think the important thing is that transmission actually has to take place. So it is not just about unsafe sex - it is about transmission essentially happening. Somebody has to become positive. (Clinical service provider)

However, many participants expressed confusion about the technical legal meaning of recklessness, and what a sufficient defence might be against such a charge. Arriving at a mutually agreed legal definition of reckless grievous bodily harm was far from straightforward, with many participants struggling to find accurate and concise means of distinguishing between common-sense uses of recklessness and this particular form of criminal liability.

So the way I understood it was, that the law is defined into an act and a mental state. And the original law applied to intention, which is to intentionally and to wilfully desire to do it. And it’s kind of flowed out into recklessness, which is sort of omission, or by not caring, or not caring if you transmit. But not taking reasonable precaution, or by not telling people it’s kind of involved wider of what my understanding about what the original law was meant to be? (Community service provider)...

Full article at:   http://goo.gl/HLuD0y

By:   Catherine Dodds, a , * Matthew Weait, b Adam Bourne, a and Siri Egede c

aSigma Research, London School of Hygiene and Tropical Medicine, London, UK

bSchool of Law, Birkbeck College, London, UK

cDepartment of Sociology, University of Copenhagen, Copenhagen, Denmark

^* Corresponding author. Email: ku.ca.mthsl@sddod.enirehtac

 

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Consent: HIV Non-Disclosure and Sexual Assault Law

 Find more information at: http://goo.gl/DxkUV3 

Effect of Nondisclosure of HIV Status in Sexual Health Clinics on Unlinked Anonymous HIV Prevalence Estimates in England, 2005–2009

Objectives: To assess the extent of nondisclosure of known HIV status among sexual health clinic attendees and to quantify the impact of nondisclosure on estimates of undiagnosed HIV prevalence and of the proportion of patients remaining undiagnosed on leaving the clinic.

Methods: Serum samples from the unlinked anonymous survey of clinic attendees’ archive were tested for antiretrovirals. Estimates of undiagnosed HIV were adjusted using the findings.

Results: Antiretrovirals were detected in 27% of samples taken from ‘previously undiagnosed’ attendees, who did not have an HIV test but were HIV positive as detected by unlinked anonymous testing, indicating nondisclosure; 24% of such samples from MSM had antiretrovirals present compared with 32% of heterosexual men and women. Antiretrovirals were detected in 33% of samples from London clinics and in 21% from non-London clinics. Following adjustment, the estimated prevalence of undiagnosed HIV decreased nonsignificantly from 3.04% to 2.66% (2.35–3.01) among men who have sex with men (MSM), 0.31% (0.26–0.37) to 0.30% (0.25–0.36) in heterosexual men and 0.40% (0.35–0.46) to 0.37% (0.32–0.43) in women; 7% of MSM who do not have an HIV test at a clinic visit will be infected with HIV and remain unaware of their infection.

Conclusion: Nondisclosure of HIV status to healthcare professionals occurs among clinic attendees. Adjustment for nondisclosure results in a small, nonsignificant decrease in the prevalence of undiagnosed HIV estimated from the unlinked anonymous survey in sexual health clinics. Testing the population of MSM not having an HIV test remains a priority as levels of undiagnosed HIV are high.

Purchase full article at:  http://goo.gl/g9U3f6

By:  Savage, Emma J.^a; Lowndes, Catherine M.^a; Sullivan, Ann K.^b; Back, David J.^c; Else, Laura J.^c; Murphy, Gary^d; Gill, O. Noel^a

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Effect of Nondisclosure of HIV Status in Sexual Health Clinics on Unlinked Anonymous HIV Prevalence Estimates in England, 2005-2009

To assess the extent of nondisclosure of known HIV status among sexual health clinic attendees and to quantify the impact of nondisclosure on estimates of undiagnosed HIV prevalence and of the proportion of patients remaining undiagnosed on leaving the clinic.

ARVs were detected in 27% of samples taken from 'previously undiagnosed' attendees, who did not have an HIV test but were HIV positive as detected by unlinked anonymous testing, indicating nondisclosure; 24% of such samples from MSM had ARVs present compared with 32% of heterosexual men and women. ARVs were detected in 33% of samples from London clinics and in 21% from non-London clinics. Following adjustment, the estimated prevalence of undiagnosed HIV decreased nonsignificantly from 3.04% to 2.66% among MSM, 0.31% to 0.30% in heterosexual men and 0.40% to 0.37% in women; 7% of MSM who do not have an HIV test at a clinic visit will be infected with HIV and remain unaware of their infection.

Nondisclosure of HIV status to healthcare professionals occurs among clinic attendees. Adjustment for nondisclosure results in a small, nonsignificant decrease in the prevalence of undiagnosed HIV estimated from the unlinked anonymous survey in sexual health clinics. Testing the population of MSM not having an HIV test remains a priority as levels of undiagnosed HIV are high.

Via:  http://ht.ly/SmA39 

By: Savage EJ1, Lowndes CM, Sullivan AK, Back DJ, Else LJ, Murphy G, Gill O.

• 1aHIV/STI Department, Centre for Infectious Disease Surveillance and Control, Public Health England, Colindale bChelsea and Westminster Hospital NHS Foundation Trust, London cUniversity of Liverpool, Liverpool dVirus Reference Department, Microbiology Services, Public Health England, Colindale, UK. 
  
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