Parents who learn that they are HIV-infected need to decide if, when, and how they will disclose their illness to their children. Although physicians often encourage parents to disclose to their children [1
], many parents delay because they fear negative consequences [3
]. They worry that the psychological burden of shock, fear, and stigma will be more than their children can handle [2
]. Indeed, parents believe that they are protecting their children by not disclosing [5
The effects of disclosing to children appear to be mixed. Some studies support parents’ reluctance to disclose by demonstrating an association between disclosure and negative outcomes, such as increased problem behaviors [1
], diminished quality of family relationships [6
], lowered self-esteem and mood [5
], and enduring negative memories of disclosure [4
]. In contrast, other studies show positive effects, such as improved family relationships, decreased childhood depression [8
], and little regret. Some studies show that the initial negative effects of disclosure dissipate over time [6
], the development of behavior problems is not connected to disclosure [10
], or negative effects are mediated by a supportive child-parent relationship [11
]. Non-disclosure, on the other hand, is linked to children’s increased fears and concerns [10
A possible key to understanding variation in outcomes for children after disclosure is a greater understanding of the family context of disclosure. Some have argued that HIV is a family disease and treatment of HIV in the context of the whole family improves long term adolescent outcomes and reduces potential effects of stigma [12
]. However, most studies of parental HIV disclosure focus narrowly on the intentional disclosure process between an infected parent and one child. This analytic approach—focusing on one person intentionally disclosing to another person—is common across different types of disclosure settings [13
]. However, assuming that the disclosure process is intentional and exists within a closed dyadic relationship ignores various ways that information about the HIV status of a parent can flow within the network of familial and social relationships in which the parent–child dyad is embedded.
Figure depicts a range of pathways through which a child can learn that his or her parent is HIV positive. The figure shows that the parent–child dyad is embedded within a network of relationships within a family, which is itself embedded within a network of relationships outside of the family. The diagram depicts direct disclosures (solid arrows) and indirect/unintentional disclosures (dashed arrows). Indirect disclosures include finding out from another member of the family or from the non-family social network. Unintentional disclosures include accidental disclosures or observing behaviors and symptoms that indicate a serious health problem.
Pathways of parental disclosure of their HIV positive status to their children
To address the limitations of previous studies of parental disclosure of an HIV infection, which have primarily focused on mother–child disclosure, we conducted a qualitative investigation of the disclosure process from the perspective of members of a diverse group of families across the United States. We conducted semi-structured interviews with HIV positive parents, their caregivers (often the other uninfected parent), and their children about their retrospective account of the disclosure process. Findings from qualitative research can help elucidate the disclosure process in several ways: by identifying the range of types of experiences; by triangulating the disclosure event from multiple perspectives within a household [14
]; by facilitating data collection from children, who might have trouble understanding closed-ended survey questions about complex issues, allowing them to express themselves in their own words using their own categories; and by explaining relationships that may be complex and sometimes contradictory, such as HIV positive parents’ desire both to shield their children from knowing about the infection and to ask them for support in dealing with it [15
Prior qualitative studies of disclosure have found a mixture of positive and negative effects on children [3
]. In the eight qualitative studies of disclosure that we identified, most focus on disclosure from the perspective of HIV positive mothers. Only one of these studies includes the perspective of HIV positive fathers and caregivers [20
]. Only two studies include the perspective of children [4
]. None include the perspective of adult children. All but one of these studies are from limited geographical areas. This study aims to build on these prior studies by exploring the disclosure process from multiple perspectives—HIV positive parents, caregivers, and children of varying ages—within an ethnically diverse set of households across the United States.