Pilot trial of a disclosure intervention for HIV+ mothers: the TRACK program.

An estimated 33 million people were living with HIV in 2007 (UNAIDS, 2008). Women account for half of all people living with HIV, and this percentage has remained stable for the past several years. Thus, women are one of the groups now at the forefront of HIV, and are most often the primary caregivers in families (Weiner, Battles, & Heilman, 1998). An HIV diagnosis impacts not only mothers as individuals, but also affects how they care for their families (Schmidt & Goggin, 2002). Many mothers choose not to tell their young children about their HIV-positive status. However, not disclosing can negatively impact mothers’ physical and psychological functioning. For example, mothers living with HIV (MLHs) who had not disclosed reported sometimes skipping medications because they are afraid their children will observe them and suspect something is wrong, and were more likely to miss medical appointments (Mellins et al., 2002; Murphy, Steers, & Dello Stritto, 2001). Another study found disclosure related to improved well-being, particularly when the first-disclosure experience was positive, which may lessen fear of future disclosure (Chaudoir & Quinn, 2010). Many MLH report that they choose not to disclose for fear of burdening their children (e.g., Palin et al., 2009). However, nondisclosure is no guarantee of positive child outcomes. One study found that adolescents who are not informed about their mothers’ HIV status can be left with feelings of resentment, and broken trust and anger because they were unable to address their parent’s illness openly, express their feelings, ask questions, and receive direct answers (Wood, Chase, & Aggleton, 2006). Among younger children whose mothers have chosen not to disclose, research indicates elevated levels of anxiety (Forsyth, Damour, Nagler, & Adnopoz, 1996; Murphy, Kaufman, & Swendeman, 1998), perhaps due to guilt they feel for a disordered family environment whose source they cannot identify. Children who found out their mothers’ serostatus report they knew something was wrong but felt unable to ask about the cause (Nagler, Adnopoz, & Forsyth, 1995). Women who had known their diagnoses longer were more likely to have children who were aware of their illness (Kirshenbaum & Nevid, 2002), For MLH who do disclose to their young children, two findings have been fairly consistent: They are less likely to disclose to younger children and more likely to disclose to female children (e.g., Armistead, Tannenbaum, Forehand, Morse, & Morse, 2001; for a full review of factors affecting MLH disclosure, see Murphy, 2008). MLHs who have disclosed report significantly lower levels of depression than mothers who have not disclosed (Wiener et al., 1998), less use of concealment to manage HIV-related stigma, stronger social support (Letteney, 2006), and stronger family cohesion. However, disclosure may cause short-term stress among mothers and children. For example, parents reported their children reacted to their HIV disclosure with depression (39%), and anxiety (11%), although parents reported improved adjustment over time for the majority of children (Nostlinger, Bartoli, Gordillo, Roberfroid, & Colebunders, 2006). This is consistent with findings by Murphy, Roberts, and Hoffman (2006), where most children were upset immediately following disclosure, but the majority adjusted over time. Whether maternal HIV disclosure may vary by race/ethnicity has been investigated in a number of studies. For example, Tompkins, Henker, Whalen, Axelrod, & Comer (1999) reported children of White and African American mothers were more likely to be aware of the mother's HIV status than were children of Latina women, but suggest this difference may be accounted for, at least in part, by the younger age of the Latino children. Corona et al. (2006) reported more English speaking compared to Spanish speaking parents disclosed their HIV status to their child; however, after controlling for factors including age of child and level of social isolation, language was no longer associated with disclosure. In a sample of predominantly African American and Latina HIV positive women, disclosers and non-disclosers were similar in most sociodemographic characteristics including race, marital status, religion and employment (Letteney & LaPorte, 2004). Other studies have not found ethnicity and/or acculturation to be related to serostatus disclosure (Lettney, 2006; Murphy et al., 2001; Rice, Comulada, Green, Arnold, & Rotheram-Borus, 2009). The Parents And children Coping Together (PACT) study was designed to longitudinally assess MLHs and their well children age 6 -- 11 years of age. Throughout the course of the study (now in its 13th year), the UCLA research team has investigated maternal disclosure (Murphy, Marelich, & Hoffman, 2002; Murphy et al., 2001). Mothers who disclosed reported higher levels of social support in their lives than non-disclosing mothers. Children of disclosing mothers displayed lower levels of aggressiveness (by mothers report), and lower levels of negative self-esteem (by child report), compared to children of non-disclosing mothers. Across the course of the PACT study, a number of MLH disclosed to their children. An analysis of depression and anxiety scores for the children who were unaware of their mothers serostatus at baseline and who were disclosed to at any of the follow-up points was conducted (Murphy, 2008). Children showed significant improvement on the mental health variables at the assessment following disclosure (which gave them time to adjust potentially if they were immediately distressed by the disclosure). They had significantly fewer depression symptoms and showed a trend for lower anxiety. To obtain more information about the process and content of maternal disclosure, the PACT research team conducted in-depth, qualitative interviews with mothers (N = 47) and children (N = 41). Overall, 51% of the children had no immediate reaction to their mothers HIV disclosure. The other 49% of the children expressed an emotional reaction. Anxiety was the most common reaction, with children expressing concern about their mother's health and how long she would live. Most of these reactions were short term, however, a few children (N = 7) displayed acting out behavior over time. Thus, most of the children adjusted, but a small percentage had maladaptive reactions that were sustained. The majority of the mothers who disclosed (77%) explicitly told their children not to tell other people (Murphy, Roberts, & Hoffman, 2002). The children understood this, as they were aware of the stigma associated with HIV/AIDS. Very few of the MLHs identified "safe people" with whom their child could talk. Children sworn to secrecy have been shown to demonstrate more externalizing problems and poorer social competence (Tompkins, 2007). Finally, the majority of PACT MLH had no regrets about disclosing (Murphy, Roberts, & Hoffman, 2003). However, many were sorry they had not planned for the event, but, rather, blurted out the news during an emotional time. Mothers deemed it crucial to have a plan for what to say when disclosing. They reported hoping for education to provide them with skills and information so that they would be better able to share appropriately with their children, indicating a need for assistance at this critical time. The Teaching, Raising And Communicating with Kids (TRACK) pilot intervention was developed based on the quantitative and qualitative disclosure studies conducted during Murphy's PACT study. Derlega et al.’s (2004) Model of HIV-Disclosure provided a conceptual framework for studying self-disclosure decisions and outcomes, which for TRACK was applied to the family context. The first factor in the model is the social environment in which the MLH and child live; the second factor focuses on individual, temporal, and relational contexts. These factors affect the endorsement of reasons for and against disclosure, which then leads to disclosure outcomes for both the mother and child. Consistent with family system theory (e.g., Alexander, Sexton, & Robbins, 2002), the intervention targets the relationship context, including intrafamilial communication and parenting skills, specifically as they apply to disclosure. By significantly improving parent skills and self-efficacy in these areas, the intervention was expected to increase steps toward disclosure and disclosure itself, as well as positively affect outcomes associated with disclosure (i.e., mother and child functioning). Thus, for all of the intervention MLHs, we anticipated improving relationship context variables (Figure 1, middle box) and the disclosure outcomes for those mothers who chose to disclose. This small pilot study focuses on the changes in the relationship context variables and the disclosure outcomes (Figure 1, last box) from the model. The specific aims of the intervention were to: (1) enhance family communication and parenting skills specific to disclosure; (2) increase readiness to disclose HIV serostatus, and increase disclosure itself (primary outcome); (3) improve MLH mental-health indicators over time (it was anticipated that MLH anxiety and depression scores might be poorer immediately following disclosure but that these would decrease over time); (4) improve child mental health indicators over time (it was anticipated that child depression, anxiety, and self-concept may actually be poorer around the time of disclosure, but would improve over time); and (5) improve the parent-child relationship and family functioning. Figure 1 Conceptual Diagram of Proposed Intervention Effects for Maternal HIV Disclosure (Based on Integrative Disclosure Theory; Derlega, Winstead, Greene, Serovich, & Elwood, 2004)