Serodisclosure: Experiences, Implications and Impacts. 16/8/11
This CAI paper reflects on the criticality of HIV status disclosure.
With an estimated 33.3 million people worldwide living with HIV, it is clear that treatment, care and prevention with regard to HIV & AIDS are imperative.(2) Endeavours to control and prevent further spread of the virus rely on the development and implementation of successful strategies to prevent infections and to ensure the treatment of currently infected individuals.(3) HIV serodisclosure has been identified as a critical aspect of HIV prevention, as well as treatment, care and support for those already-infected individuals.(4) As the pandemic continues to extend its reach, HIV positive individuals are often made to face serious decisions regarding serodisclosure throughout a number of areas of their lives.(5)
This CAI paper reflects on the criticality of HIV status disclosure. The character and process of disclosure are highlighted, as well as the nature of post-serodisclosure experiences and the manner in which these experiences can affect those who disclose and those contemplating doing so. The implications of failure to disclose are also noted.
Towards an understanding of the nature and process of serodisclosure
The relationship between those affected by and those infected with HIV is an important factor to consider when investigating serostatus disclosure. Implicit to this relationship is the fact that HIV is defined by its communicable nature - it has been called a “disease of society and human relationships”.(6) An awareness of the vectors for HIV transmission must therefore highlight the importance of communication and the disclosure ideally associated therewith. The value of these factors cannot be underestimated and therefore, the ability to safely and accurately communicate one’s serostatus to the appropriate parties must be carefully and critically appreciated. Research has described the disclosure of serostatus as a core component of access to treatment and management programmes, for generating behaviour changes and, in some instances, for decreasing levels of community stigma.(7,8)
Serodisclosure has been described as one of the most complex experiences for a person who has been diagnosed with HIV. Receiving a seropositive test result can be a life-changing experience and cause a paradigm-shift for which many are unprepared. In responding to this event, personal acceptance and personal disclosure skills must be considered.(9) Handled properly, this process is regarded as central to coping with the diagnosis and preventing further infection, as well as understanding and mitigating the effects of infection.(10) Disclosing one’s status can often be a critical point in accessing treatment, care and support programmes and structures.
Chaudoir and Fisher have pointed out that disclosure has the potential to affect behavioural, psychological and health outcomes, including illness progression.(11) However, it remains a complex decision with a number of implications. Benefits to disclosure certainly exist, but there are considerable barriers to serodisclosure which must be considered as well. However, before these are discussed it is important to understand the initial setting for guiding disclosure choices.
Laying the groundwork: Encouraging disclosure in the HCT setting
Within the context of HIV counselling and testing (HCT), a distinct emphasis is placed on encouraging and supporting seropositive clients in disclosing their status, especially to their sexual partners - both current and previous.(12) The Joint United Nations Programme on HIV & AIDS (UNAIDS) and the World Health Organisation (WHO) have consistently promoted education around disclosure as a core component of post-HIV-test counselling sessions; they recommend that disclosure should be guided by ethical imperatives in order to maximise the potential outcomes for those infected as well as those affected.(13) The recently released Global Health Sector Strategy on HIV/AIDS 2011-2015 hassuggested scaling up support for rights-based testing and counselling services in an effort to ensure prevention and early diagnosis, and appropriate referrals so as to create culture of safe disclosure of HIV status.(14)
To encourage disclosure, one must therefore proceed with sensitivity. However, the process of serodisclosure has been described as a possible double-edged sword for many individuals,(15) with benefits, barriers and complications characterising the process.
Benefits of disclosure
There are a number of public and personal health benefits of serodisclosure. Upon finding out the infected person’s serostatus, sexual partners of the infected person may elect to undergo HCT, and change their behaviours, which may prevent further infections.(16,17) Disclosure also has the potential to encourage other health behaviours such as participation in programmes to prevent mother-to-child transmission, and improved access to treatment services and support networks.(18)
Despite the risk of adverse reactions, research has shown that in the majority of cases, seropositive people will disclose their status to at least one person.(19) A South African study found that 92% of participants had disclosed their serostatus to one person.(20) Similarly, in an Ethiopian study, approximately 94.5% of participants had disclosed their status to at least one person - although this was not always a sexual partner.(21)
A number of studies have shown positive outcomes towards serostatus disclosure. These include reports of increased levels of social support, acceptance and kindness experienced by those who disclose.(22) Additionally, depressive and anxiety-related symptoms were reported to decrease upon disclosure with positive outcomes.(23,24) An interesting proviso is made in some cases where it has been suggested that the benefits of disclosure for the seropositive person should be weighed against the potential outcomes in deciding to disclose.(25) This should guide understandings of all disclosure decisions.
Barriers to serodisclosure and negative serodisclosure experiences
Studies among women in sub-Saharan Africa have revealed that disclosure may be prevented or hampered by a fear of a partner’s negative reaction including rejection, accusations of infidelity, loss of economic support, abandonment, and acts of violence.(26,27,28) In a number of instances, this has indeed been the case.
Evidence has revealed barriers to testing and disclosure at the intersection of two epidemics - HIV and violence. In 1998, a South African woman was beaten to death as a result of having publicly disclosed her HIV serostatus.(29) In 2008 in Uganda, a man hacked his wife to death with a machete upon learning he had become infected with HIV.(30) Ten years separate these events, and yet despite the considerable advances that have been made in shifting negative attitudes and discriminatory practices towards those diagnosed and living with HIV, such violent acts were perpetrated on the basis of the victim’s serostatus alone. Research has suggested that post-test counselling support services should pay particular attention to those individuals living with abusive partners.(31)
In a study investigating the reactions of women receiving a seropositive test result, 38% of the sample responded with negative reactions including rejection, silence, denial, blame and physical violence. In the same study, two participants reported a significant fear of being physically abused should they disclose their seropositive statuses.(32) Similarly, a Tanzanian study found serodisclosure to lead to certain negative outcomes, including refusal of partners to be tested, family separations and abandonments, as well as suicide attempts.(33)
The decision to disclose is complicated and must be made in the context of risk reduction strategies. However, this decision is coupled with a significant risk of exposure to discrimination and stigma. HIV & AIDS stigma and discrimination have been identified as compromising the health and wellbeing of those living with the infection.(34) Research has indicated that a fear of stigma, discrimination and rejection lies behind numerous cases of non-disclosure to partners, families and employers. In some instances this may lead to a shameful existence which can influence attitudes towards the disease as well as treatment commitments.(35) However, with high disclosure rates it must be noted that among the positive benefits of disclosure is the fact that it may help to decrease stigma and discrimination in communities.(36)
Additional factors influencing disclosure
There are a number of factors which can influence the manner of disclosure. Studies have shown that relationship-type may influence disclosure patterns, and it seems that disclosure is largely guided by concern for the health and well-being of partners.(37)
When assessing the impact of gender on disclosure rates, the abovementioned Ethiopian study noted that disclosure across genders followed from shared communication highlighted in relationships. Interestingly, while disclosure rates were similar across genders, reasons for non-disclosure did vary by gender. Where women feared violent retribution and socio-economic consequences for disclosure, men were characterised by a fear for their partners and of the exposure of infidelity.(38) In this study, men were encouraged to disclose by prior discussion as well as knowing their partner’s status, while for women, additional factors such as disease stage, level of education, marital status and the nature of the relationship guided disclosure decisions.(39)
Failure to disclose
In one South African study, 21% of respondents did not disclose their serostatus to their partners.(40) This means that approximately one in five participants did not elect to share their HIV status with their partners. The implications and consequences of such a failure to disclose are significant. Each person who does not know or disclose their status to a sexual partner creates the risk of an exponential number of new HIV infections as a result of this covert transmission.
Additionally, those who do not disclose their serostatus may be denied access to the support structures which enable an adaptive coping response to diagnosis. These could include family and community support systems. It must be noted, however, that many seropositive persons identify at least one person in their social networks to whom they do not plan to disclose. This has been attributed to a fear of rejection, stigma and a fear of isolation.(41)
Conclusion and recommendations
Serostatus disclosure is widely regarded as a central component of post-diagnosis adjustment and coping. Individuals may choose to diagnose their statuses either privately or publically, but ultimately the process of sharing the truth with another has been shown to be beneficial on a number of levels.
This paper has sought to touch on both positive and negative factors that may influence serodisclosure. As highlighted, anticipated post-disclosure events may, in some instances, act as deterrents from disclosing one’s status. However, anticipation of positive post-disclosure events may encourage individuals to share their statuses. Acknowledging and fostering such conditions may serve to create an environment that encourages disclosure.