The present analysis reveals there are a number of approaches to HIV disclosure and no one approach is optimal. It is important for HIV test counselors and others working with those who are newly diagnosed to be aware of the variety of ways in which disclosure fits into the overall process of adjustment to an HIV diagnosis. Examining disclosure narratives qualitatively from the perspective of Stress and Coping Theory revealed distinct differences in how participants appraised disclosure, whether disclosure was experienced as stressful, and whether disclosure or nondisclosure functioned as a way of coping with an HIV diagnosis. Our approach also allowed a view of the life contexts of stigma and social support in a way that incorporated these concepts as thematic aspects that played different roles among the groups.
Decisions about disclosure are made based on appraisal and life context. In our sample we found four ways in which life context shaped the disclosure process. For example, the reactions many in the Stigma Concern group received in response to a disclosure added to their stigma fears, and their own internalized stigma contributed to this stress appraisal. In contrast to the Social Isolation group, the Stigma Concerns group had a social network, but their early negative experiences in disclosing their HIV serostatus deterred them from additional disclosure. Not disclosing became their way of coping with their appraised stress of disclosure. For those in the Social Isolation group, disclosure was appraised as potentially very stressful, largely because of stigma fear and internalized stigma. In addition, their limited social network deprived them of using disclosure as a means of garnering social support to deal with the stress of their HIV diagnosis.
The Strategic Disclosure group did not appraise disclosure as stressful, but as a means of garnering desired informational, practical, or emotional social support, or as a way of feeling the relief of sharing difficult news. Not disclosing was also strategic—a way of protecting themselves from predictable bad reactions, or as a way of protecting cared-for others from distress. They disclosed selectively to friends, family, and their wider social network. A number of these participants also chose to disclose to former or current sex partners, not for support, but because they felt that they had a moral duty to do so. In those cases, not disclosing would have been appraised as stressful for them.
The Universal Disclosure group disclosed, for the most part, because they felt it would be more stressful not to disclose. They usually held the goal of disclosing to garner social support, but, like the Stigma Concerns group, they sometimes received negative and nonsupportive responses. Unlike the Stigma Concerns group, however, negative responses did not deter them from disclosing to an ever widening circle of friends, family, coworkers, and others.
In the quantitative analysis, the one difference on demographic variables was the higher proportion of African Americans in the Social Isolation group. Other research has found ethnic differences in both rates of disclosure and social isolation when comparing persons of color and white populations.46–48
The Social Isolation group also showed a higher degree of internalized stigma. It seems possible that some African Americans who test positive for HIV might be more vulnerable to social isolation and to stigmatizing attitudes, however, other studies have not found this to be the case.35
In our data, the Stigma Concerns group also had significantly higher internalized stigma, but did not differ on race/ethnicity compared to the Strategic Disclosure or Universal Disclosure groups. The possible relationship between race, social isolation, and internalized stigma are not clearly understood. The fact that none of the other demographic variables differentiated among the groups indicates that demographics are not a reliable indicator of how disclosure decisions are made.
In contrast to studies that have found an association between disclosure and physical health6,49
, there were no differences among our qualitatively derived groups on CD4, viral load, or self-reported symptoms. It is not that participants in our sample were all early in the disease course, and therefore, healthier. Although the participants were newly diagnosed, they were at different points in the progression of the disease, and, whereas many had very low CD4 counts and were highly symptomatic, others were healthy. In the early years of the epidemic, before the introduction of highly active antiretroviral therapies (HAART), becoming obviously symptomatic was very often the point at which people with HIV/AIDS disclosed their status, either because they needed the support or because their symptoms allowed others to guess their status. Currently, with HIV having become a chronic rather than an imminently terminal disease, disclosure decisions seem less likely to be driven by health levels.
There were some clear distinctions among the disclosure groups regarding social support. In particular, the Social Isolation group had more restricted social networks than the other three groups. This is reflected in both the interviews and in significantly lower scores on the scale measuring social attachment. The Social Isolation group also reported lower degrees of reliable alliances (e.g., people one can count on in an emergency), as did the Universal Disclosure group. It seems reasonable that the participants in the Social Isolation group were less likely to report reliable alliances because this group had so few social supports. But the lower degree of reliable alliances in the Universal Disclosure group is more difficult to understand. The qualitative data help to explain this finding in terms of different motivations for disclosing. The Universal Disclosure group did not appear to disclose their HIV status primarily to receive support. The respondents in this group generally presented other reasons for disclosure such as disclosing being the morally right thing to do, and having the conviction that people around them should know about their HIV status. This group relied less on other people for support and help in coping with their disease than the Strategic Disclosure group. The Strategic Disclosure group differed from the other groups in that they had strong social ties and relied on other people to assist them both with emergencies and provide them with support regarding personal problems. This level of understanding of the complexities of the function of social support for the individual can only be revealed by looking at the disclosure process longitudinally and in the context of people's lives.
The longitudinal nature of our data raises the question of whether one's approach to disclosure is dispositional and fixed or whether the approach can be more fluid and changeable over time. Certainly there was evidence from the Strategic Disclosure group that individuals may try different approaches to disclosure. A number of those in the Strategic Disclosure group initially disclosed more universally, but received negative responses and learned to be more selective in their disclosure targets. For others, however, without a change in their social context, there is likely little possibility for change in disclosure patterns. Individuals in the Social Isolation group are unlikely to make a huge leap to universal disclosure given the constraints of their social network. Although our data were longitudinal, they covered a relatively short period following HIV diagnosis, and a longer term study may reveal different patterns of change, which could be beneficial to understanding the disclosure process over time.
Our qualitative approach provided an understanding of the way individuals view themselves in the world, their social and cultural context, and the transactions that transpire in the disclosure process. In turn, the outcome of disclosure events feeds back and influences one's identity. Disclosure practices are one avenue for identity shifts, although in certain cases preexisting identities or social/cultural contexts may hamper such shifts. For example, the Social Isolation group had a view of their identity as “I'm a private person” and this affected their disclosure, and by extension, identity changes that might result from interactions with others about HIV.
Stress and coping theory informed our analysis of the disclosure narratives. Our theoretical perspective allowed us to understand that disclosure can be both a stressor and a way of coping with stress. Likewise, nondisclosure and even lying can be sources of stress or methods of coping. Few studies (with the notable exception of Holt) have recognized nondisclosure as a way of coping. Our finding of the individual context being important in the disclosure process is consistent with the transactional nature of the coping process.
This study is novel in that it focuses on the disclosure process longitudinally from the time of HIV diagnosis. The prospective design of the study meant that the narratives did not depend on recall of events from some years previous and the longitudinal aspect of the study adds dimension and depth often absent in previous studies. Although disclosure is an issue that individuals counseling those newly infected with HIV frequently deal with, they are not generally trained to help people with disclosure decisions.16
Our study indicates that there is no generic template for disclosure counseling that could be developed that would be helpful for all people newly diagnosed with HIV. Effective disclosure counseling needs to take into consideration an individual's life context and appraisal of HIV, as well as stigma concerns and needs for social support. Understanding these dynamics will then allow for the development of education for counselors. Future work could focus on the creation of specific screening questions that would help counselors identify an individual's likely disclosure pattern and tailor post-test counseling accordingly in order to increase the likelihood of adaptive adjustment to HIV.