Caroline Foster

Dr Michael Evangeli

Michael Evangeli

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WHO, then what?   The need for interventions to 
help young people with perinatally acquired HIV 
disclose their HIV status to others 
Short title: onward HIV disclosure interventions  
Michael EVANGELI1 and Caroline FOSTER2    
Word count: 1499   
 
1 Department of Psychology, Royal Holloway University of London, TW20 0EX, UK.  
2 Imperial College Healthcare NHS Trust, St. Mary’s Hospital, London, W2 1NY, UK 
 
Corresponding Author: Dr. Michael Evangeli. Department of Psychology, Royal Holloway 
University of London, Egham Hill, Egham, Surrey, TW20 0EX, UK. Tel: 
00441784443851. Fax: 00441784472746. Email: michael.evangeli@rhul.ac.uk  
 
Conflict of Interests and Sources of Funding: The authors declare no conflicts of interest 
or sources of funding for this work. 
 
Key words: HIV, disclosure, perinatally acquired HIV, adolescence, youth, young people, 
onward disclosure, self-disclosure 
 
2 
 
There are 3.4 million HIV positive children globally, with 2 million aged between 10 and 
19 years of age [1]. The majority have perinatally acquired HIV (PAH). One of the key 
challenges for any HIV positive person is disclosing the condition to others (for example, to 
a partner, family member or friend). This on-going process has been variously termed self-
disclosure [2] or onward disclosure.  
 
There has been considerable interest in paediatric HIV disclosure. This is the process 
leading to full disclosure (when the condition is named for the HIV positive child, usually 
by a caregiver or healthcare worker). World Health Organization (WHO) guidelines state 
that children should be aware of the name of their condition by the age of 12, with younger 
children told their status incrementally to accommodate their cognitive skills and emotional 
maturity in preparation for full disclosure [3]. There is evidence, however, of variation in 
the age of full disclosure with this taking place later in resource limited contexts than in 
other parts of the world [4]. Being aware of one’s status (full disclosure) is a pre-requisite 
for onward disclosure and there is evidence of more onward disclosure if children are 
aware of their status earlier [5]. How one was disclosed to, for example, if there was an 
opportunity to ask questions about HIV and to feel listened to, may also impact on onward 
disclosure decision-making.  
 
Rates of onward disclosure and barriers to disclosure 
Rates of onward HIV disclosure in young people with PAH are low. Lee and Oberdorfer 
[6] reported that only 48% of their sample of perinatally infected adolescents (median age 
14.6 years) in Thailand had disclosed their status to anyone. Tassiopoulos et al [7] reported 
3 
 
that only a third of their US sample of sexually active youth (aged ≤18) with PAH had 
disclosed their HIV status to their first sexual partner. A similar rate of HIV disclosure to 
sexual partners was reported by Birungi et al [8] in their Ugandan sample of 15 to 19 year-
olds. Lower rates of HIV disclosure to the friends of young people with PAH than to the 
friends of those with behaviourally infected HIV, have been reported. Abramowitz et al [9] 
studied 13 to 21 year olds in the US, with either perinatally acquired or behaviourally 
infected HIV. They reported that a mean of 1.7 friends knew the serostatus of youth with 
PAH, whereas a mean of 4.5 friends knew the serostatus of behaviourally infected youth.   
 
Qualitative studies have revealed the subjective difficulty of disclosing one’s HIV positive 
status to others in young people with PAH, particularly to partners [5, 10-12]. Themes from 
in-depth interviews include a fear of negative responses from others, a lack of disclosure 
self-efficacy, a fear that the recipient of disclosure will tell others, and the importance of 
parental attitudes towards onward disclosure [11, 13]. 
 
Characteristics of young people with PAH 
Some of the characteristics of having PAH may affect onward disclosure. The onset of 
sexual relationships in the knowledge of having a stigmatised sexually transmittable 
condition may be challenging. In this context both sexual communication and sexual 
behavioural skills need to be developed concurrently with consideration of partner 
disclosure issues.  
 
4 
 
Young people with PAH often have long histories of medication use with suboptimal 
regimens and treatment failure [14]. This, alongside other stressors associated with living 
with a chronic condition (e.g., hospitalisations, missed school and social opportunities, and 
exposure to pain[15]) may affect adjustment to HIV and consequently reduce readiness to 
disclose. 
 
One of the central features of living with PAH is growing up in a family affected by HIV. 
Many HIV positive youth live with single carers and have experienced multiple caretaking 
transitions due to parental illness or death [15]. Onward disclosure may be associated with 
young peoples’ concerns about revealing their mother’s HIV positive status [11]. Negative 
parental attitudes to disclosure, including directives to not disclose [16], may be 
internalised [11, 17]. Greater dependence on adult caregivers, overprotective parenting, and 
the effect of parental HIV on parenting competence [9, 15, 18], may all affect preparedness 
to disclose. 
 
Some young people with PAH have subcortical white matter and frontostriatal 
abnormalities that affects emotion and behaviour regulation [19]. They may be more likely 
to have cognitive functioning difficulties than controls, particularly executive functioning 
problems (e.g., limitations in working memory, processing speed and cognitive flexibility) 
and compromised verbal abilities [20]. These difficulties may affect HIV disclosure 
problem-solving and planning.  Finally, some young people with PAH have metabolic 
complications including lipodystrophy [14], that may lead to concerns about unintentional 
HIV disclosure [21].     
5 
 
Onward disclosure consequences 
There are many potentially positive consequences of onward HIV disclosure in young 
people with PAH.  
 
Onward disclosure may facilitate greater condom negotiation and use, reduced levels of 
unprotected sexual intercourse and secondary HIV transmission. There is evidence of a 
relationship between higher levels of onward disclosure and condom use in some 
populations of young HIV positive people (e.g., in samples of young MSM [22]). Studies 
that have contained participants with PAH have failed to find an association between 
onward disclosure and unprotected sex [8, 23]. A relationship has, however, was reported 
between lower rates of onward disclosure and having multiple sexual partners in one study 
[23].  
 
Onward disclosure may also facilitate improved antiretroviral (ART) adherence, perhaps 
through the availability of disclosure-specific support or the reduced need to hide 
medication from others. Less medication hiding and higher CD4 counts have been 
associated with higher onward disclosure rates in youth with PAH [24]. In addition, fear of 
disclosure is commonly cited as a barrier to ART adherence in this population [25].  
 
Onward disclosure may enhance well-being, potentially through helpful cognitive appraisal 
of HIV-related stressors [18]. The relationship between onward disclosure and well-being 
has been seen in other HIV positive populations [26, 27]. Higher rates of onward disclosure 
have been associated with higher self-esteem in some studies of youth with PAH [5] but not 
6 
 
in others that have included perinatally infected youth [18].  Onward disclosure may also 
increase social support in those with PAH [28] and a relationship between higher rates of 
onward disclosure and greater social support has been found in other HIV populations [29]. 
Associations between social support and better mental health have been shown in youth 
with PAH [15, 30]. There is also some evidence that higher rates of and increases in 
onward disclosure are related to improvements in immune functioning in young people 
with HIV [18, 24]. 
 
Disclosure interventions in other populations 
Given the relevance of HIV disclosure to sexual risk behaviour, ART adherence and well-
being, recent psychosocial HIV disclosure interventions aiming to increase HIV disclosure 
rates have been developed. These have focused on HIV positive mothers disclosing their 
HIV positive status to their children [31-33], HIV positive women disclosing to others [34] 
and MSM disclosing to their family [35] or to sexual partners [36]. Promising outcomes 
have been shown with increased disclosure rates and well-being in some studies [31, 35].  
 
There are no onward disclosure interventions for young people with PAH, or young people 
with HIV more generally [2]. This contrasts with the effort made to ensure that paediatric 
disclosure is handled well [3]. HIV positive populations, including young people with HIV, 
have stressed the need for assistance in developing the skills to disclose their HIV positive 
status to others effectively [2, 32, 37]. Health workers have also expressed a desire for more 
guidance and support regarding HIV disclosure [38].  
7 
 
The need for HIV disclosure interventions for young people with PAH 
We argue that there is a crucial need for culturally sensitive, tailored, implementable, 
onward HIV disclosure interventions for young people with PAH, particularly as the 
average age of this globally large population increases. The absence of current guidance on 
how to facilitate disclosure to friends, family or sexual partners leaves young people, their 
families and health care workers, without disclosure-specific support.  
 
Adolescence is a stage where mutually disclosing friendships and intimate relationships in 
the context of increased autonomy are important [18]. This presents interpersonal 
challenges around HIV disclosure with diagnosis concealment becoming increasingly 
difficult as time and intimacy increases [39]. Developing a disclosure intervention 
specifically for adolescents and young people with PAH may enhance functional disclosure 
decision-making, provide a framework for thinking about disclosure, and increase 
perceived comfort, self-confidence, competence and satisfaction with disclosure decision-
making. Intervening with young people before disclosure difficulties have become 
entrenched may enable a pattern of functional disclosure behaviour to develop.  
 
We argue that professionals have a particular responsibility to facilitate young people’s 
onward HIV disclosure to sexual partners, particularly given the legal context in many 
countries [38]. Providing opportunities for young people to start their sexual relationship 
history better prepared for HIV disclosure is of real importance. Despite the specific 
features of perinatally acquired HIV, many characteristics are shared with other 
populations.  If disclosure interventions for young people with PAH are shown to be 
8 
 
effective, there may be the potential for modified interventions to be developed for 
disclosure of other chronic transmittable health conditions associated with stigma (for 
example, Hepatitis B and C). 
 
Acknowledgements 
The authors would like to thank the following, who contributed to discussions on the issues 
presented in this article: Mary-Jane Rotheram Borus, Sung-Jae Lee, Debra Murphy, Bill 
Miller, Theresa Moyers, Julianne Serovich, Judy Kimberly, Sandra Reed, and Stephanie 
Marhefka. We would also like to thank Amber Wilson for collecting relevant articles.  
9 
 
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WHO, then what? The need for interventions to help young people with perinatally acquired HIV disclose their HIV status to others Short title: onward HIV disclosure interventions

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WHO, then what? The need for interventions to help young people with perinatally acquired HIV disclose their HIV status to others Short title: onward HIV disclosure interventions

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