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When Children Tell Their Friends They Have AIDS: Possible Consequences for Psychological Well-Being and Disease Progression

From the Catholic University of America (B.F.S., G.A.B.), Washington, DC; and the National Institutes of Health (L.S.W., H.B.B.), Bethesda, MD.

Address reprint requests to: George A. Bonanno, PhD, Department of Counseling and Clinical Psychology, Box 218, 525 West 120th St., Teachers College, Columbia University, New York, NY 10027. Email: gab{at}columbia.edu

	ABSTRACT

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
OBJECTIVE: Past research has demonstrated that self-disclosure of traumatic or secretive information produces observable health benefits. Self-disclosure has also been linked, albeit less consistently, to improved psychological health. The present study examined the physiological and psychological consequences of children’s self-disclosure of their HIV/AIDS status to friends.

METHODS: Data were collected twice, one year apart, from 64 caregiver-child dyads in which all of the children were infected with HIV. Dependent variables included the child’s CD4%, self-concept, and level of behavioral problems.

RESULTS: Children who had disclosed their HIV+ diagnosis to friends during the 1-year course of the study had a significantly larger increase in CD4% than children who had told their friends before the study or those children who had not yet disclosed their HIV+ diagnosis to friends. This effect remained significant when the child’s age and level of medication (protease inhibitors) were statistically controlled. Self-disclosure to friends did not impact the child’s behavior or self-concept.

CONCLUSIONS: This is the first study to investigate the effect of self-disclosure in children. The results were consistent with previous studies showing the positive health consequences of self-disclosure in adults, and suggest potentially important implications for professional and familial care givers of HIV/AIDS individuals.

Key Words: self-disclosure • behavior • self-concept • children • HIV • AIDS • disease progression

Abbreviations: HIV = human immunodeficiency virus; EBV = Epstein-Barrvirus; SPPC = Self-Perception Profile for Children; SPPA = Self-Perception Profile for Adolescents; CBCL = Child Behavior Check List; ANOVA = analysis of variance; ANCOVA = analysis of covariance.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
When you live with HIV, there are definitely good days. Those are the days when I have people who care about me and people who talk to me and make me feel better about my having HIV. Going to the mall with my good friend who knows my diagnosis is fun because this is a day when I don’t have to worry about what I say. This is also one of the only days where I don’t have to hide in a bathroom to take my medicine. Sometimes I am so tempted to just take out my medicine and take it in front of my friends so they could ask what it was. I could tell them, and I could get this secret over with once and for all...

There are definitely bad days, too. These are the days when the kids talk about AIDS in school and about how they would never touch or go near kids who had it. I once asked a boy what he would do if I had it, and he told me he would never go near me but that he knew that I didn’t really have it. He was wrong. I do.—Dawn, age 12 (1).

The Centers for Disease Control and Prevention estimate that there are more than 8086 children and 3130 adolescents with AIDS in the United States. Another 5242 children and adolescents have been diagnosed with HIV, the virus that causes AIDS (2). However, as new medications become available, children infected with HIV/AIDS are living longer. A corresponding shift in the conception of HIV/AIDS from a terminal disease to one that is chronic, underscores an important research agenda for the identification of specific psychosocial variables that may influence the long-term survival of these children. One of the most controversial topics of discussion among families of children who are infected with HIV/AIDS is whether or not to tell their child about the child’s own diagnosis (3) and, if they do, whether or not to allow their child to tell others. There is a growing body of literature focusing on the psychosocial effects of informing a child that he or she is HIV+, but currently there is no research addressing the child’s self-disclosure of the HIV/AIDS diagnosis to others. The present study was designed to address this question. Specifically, we compared the physiological and psychological health of children who disclosed their HIV+ status to close friends during the past year with children who had not yet disclosed their status and with children who had previously disclosed their status before the study. Based on previous research demonstrating the salutary impact of disclosing distressing experiences (4–7), we expected the self-disclosure of HIV+ status to have a positive impact on disease progression, as indicated by changes in CD4% over a 1-year period. In addition, we explored the impact of disclosure on two variables related to psychological well-being: children’s self-concept and ability to manage behavioral problems.

	EFFECTS OF SELF-DISCLOSURE

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
The verbal self-disclosure of private thoughts and feelings has been widely endorsed by practitioners and researchers alike as an instrumental component of psychological well-being (4, 7–8). The social comparison processes that follow verbal disclosure of a traumatic event are thought to increase the availability of coping information and aid from others (9). Self-disclosure of difficult or traumatic experiences in general is thought to foster their cognitive reorganization and accommodation into existing meaning structures (10, 11). Conversely, the inhibition or suppression of distressing thoughts and emotions has been assumed to be a form of physiological work that, when enacted over periods of time, produces a cumulative bodily stress and the gradual erosion of health (6, 12, 13). Consistent with this latter assumption, a considerable body of evidence has associated the act of disclosing personal or trauma-related information with improved physiological health (5, 6, 12, 14).

Although the overwhelming majority of highly emotional events tend to be shared with others (15, 16), the verbal disclosure of private experiences has not always proved adaptive (15, 17). Indeed, Kelly and McKillop (18) have recently argued that disclosing personal secrets to another person may not always be in the best interest of the individual. The dilemma of choosing whether or not to verbally disclose personal information is somewhat of a "cruel paradox" (19). Often people long to share a trauma or secret with another, yet they fear the possible rejection or alienation by the listener. Silver et al. (20) noted that people who experience negative life events have the best chance for adjustment by revealing their secret but they also "risk alienating their social network." The concept of a cruel paradox may be especially salient in regard to the disclosure of information associated with a negative social stigma, such as HIV/AIDS (21).

A question of particular importance in HIV/AIDS is whether psychosocial variables, such as self-disclosure, influence immune response. Pennebaker and Beall (5) showed that participants who wrote about the emotional aspects of a trauma had increased blood pressure and negative mood immediately after the writing period but decreased health center visits in the ensuing 6 months. Pennebaker et al. (22) also found that individuals who wrote about traumatic experiences had fewer health center visits. Importantly, trauma self-disclosure in this study was associated with beneficial cellular immune-system responses. Specifically, participants in the trauma self-disclosure condition had lower blastogenic response for T-lymphocytes after mitogen stimulation of phytohemagglutinin and concanavalin A. In addition, Pennebaker et al. (22) noted that trauma-disclosing participants who had previously "actively held back in discussing with others" had higher increases in immune responses compared with participants who typically did not inhibit themselves. Although this effect was only marginally significant, it suggests that the act of revealing a personal secret may have a larger salutary impact on immune response in first-time disclosers.

In a study of particular interest to the present investigation, Petrie et al. (23) examined the impact of self-disclosure and immune response among individuals in a hepatitis B vaccination program. The vaccination recipients who wrote about traumatic events had significantly higher antibody levels against hepatitis B than did individuals who wrote about trivial events. Petrie et al. interpreted these findings in terms of the depression of immune response resulting from the act of suppressing or inhibiting the expression of traumatic experiences and suggested that such a negative impact may be even more obvious among individuals suffering from diseases that specifically attack the immune system, such as HIV/AIDS. Kiecolt-Glaser and Glaser (24) had previously made a similar point, stating that "distress-related immunosuppression may have more important consequences... in individuals whose health is already impaired (and) in patients with immunosuppressive diseases (eg, AIDS)."

The same conclusion was made by Esterling et al. (25), who investigated the impact of self-disclosure on healthy Epstein-Barr virus (EBV) seropositive undergraduates. Results from the study revealed that individuals with EBV who talked about stressful events had significantly lower EBV antibody titers (an indicator of better immune response) than students who wrote about stressful events, who in turn had significantly lower antibody titers than students who wrote about trivial events.

In a related study, Cole et al. (26) recently hypothesized that gay men who concealed their homosexuality would be at higher risk for health problems. In particular, the study looked at the incidence of infectious and neoplastic diseases in 222 HIV-negative gay men. The men who were "in the closet" (had not publicly disclosed their homosexuality) had a higher incidence of cancer and several other infectious diseases over a 5-year assessment. These effects could not be attributed to possible mediating variables such as coping style, health-related behaviors, anxiety, or depression. A similar study found that "closeted" gay men were significantly more likely than "out" gay men to report high levels of psychosomatic symptoms (27). Finally, Cole et al. (28) followed HIV-positive gay men at 6-month intervals for a period of 9 years, and found that the more the men concealed their homosexuality, the more rapidly their HIV/AIDS course progressed. A number of possible mediating variables, such as demographic characteristics, medical treatment, health related behaviors, and psychosocial factors, were investigated but were not found to add significant explanatory variance.

	CHILDREN AND THE SELF-DISCLOSURE of HIV/AIDS STATUS

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
Together, the findings reviewed above suggest that children who disclose their HIV/AIDS status should show health benefits similar to those observed among adults. However, the possible impact of children’s self-disclosure of HIV/AIDS for their psychological health and well-being is less clear (29). A common fear among parents of chronically ill children is that, if they allow their child to tell one other child about their diagnosis, soon many more people may know. In the case of HIV/AIDS, allowing others to know that a family member is HIV+ can be devastating. Aside from the fact that there remains a strong stigma associated with HIV/AIDS, the disclosure of one family member being infected may implicate other family members. As the AIDS epidemic continues, the majority of children infected with HIV are infected vertically by their mothers. Some of these mothers have been infected through intravenous drug use or an illicit sexual encounter. Disclosure in this case may inadvertently reveal more than intended.

On the other hand, as Saffer et al. (30) argued, the "burden" placed on a child who is told he or she must keep a family secret can be detrimental to the child’s psychological well-being. Wiener et al. (31) concluded that "due to the stigma associated with AIDS, many HIV-infected children have been asked to lie about their illness. As a result, these children frequently develop an unspoken sense of shame about their disease and about what is happening to their bodies." Parents of chronically ill children have often been found to be overprotective (32), and sometimes, parents who try to protect their children by not allowing them to tell others about their diagnosis may actually be doing more harm than good.

It is important to note that, for children, sharing intimate details with friends is an integral part of peer relationships (33). When children were asked about their preferred coping strategies, the majority cited talking to friends, family, and professionals (34). This "approach coping" behavior, in which the child seeks the support of friends and family by talking to them when difficulties arise, is believed to be a primary coping mechanism for children (35). Although children rely on family support in times of difficulty (36), sometimes the value of a close friend seems even more salient to a child (37). Hartup (38) found that, for children, a lack of friendships is a great source of distress. In general, having a confidant has been shown to help individuals cope with trauma (39).

One avenue by which self-disclosure of HIV/AIDS to friends may have positive psychological consequences is in the development of a broader or more efficacious sense of self and in an increasing capacity to self-regulate under distressing social circumstances. The act of disclosing highly emotional information may foster self-empathy and self-regulation, thereby promoting the capacity to tolerate affect and modulate behavior (40, 41). In the social context of friendship, self-disclosure of HIV/AIDS may provide children with the opportunity to explore different ways to control their emotional responses and to conceptualize their own diagnostic status in relation to the broader social milieu. We explored these possibilities in this study.

The present study was designed to examine the physical and psychological consequences for children who verbally self-disclose to their friends about their HIV+ diagnosis. Data were obtained at two points in time, 1 year apart, from both children who have been infected with HIV and their caregivers. Psychological and physical characteristics of the child were measured at each assessment using questionnaires and structured interviews as part of a larger study examining the psychosocial impact of HIV/AIDS on children who have been infected for at least 8 years (42–44). All of the children in the present study knew their HIV+ status. Based on the interview data, the children were categorized as either having disclosed their HIV/AIDS status to friends before the first assessment (previous disclosers), having disclosed their HIV/AIDS status to friends for the first time during the 1-year period covered by this study (recent disclosers), or as not yet having disclosed their HIV/AIDS status to friends at any point (nondisclosures). We examined the impact of disclosure on disease progression in the form of changes in CD4%, expecting that recent disclosers would show increased CD4% from Time 1 to Time 2 relative to nondisclosers or previous disclosers. We also explored the possibility that disclosure of HIV/AIDS to friends would exert a positive influence on children’s self-concept and the degree that they could manage behavioral problems. Because it was not possible to determine when and to what extent previous disclosers had revealed their HIV/AIDS status to friends, we made no specific predictions about this group. Finally, because of the previously inconclusive findings on verbal self-disclosure and physical and psychological health, we explored several possible mediating variables, such as age, gender, and medications, as well as several additional behavioral variables that may be associated with self-disclosure, including whether the child typically discussed HIV/AIDS with family and friends and the amount that the child thought about HIV/AIDS.

	METHODS

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
Participants
Participants were recruited from a sample of children receiving treatment at the National Institutes of Health in the HIV/AIDS Malignancy Branch of the National Cancer Institute and their families. All of the children were enrolled in one of the NCI HIV/AIDS clinical protocols. One hundred five families were eligible for participation. Each of these families was informed of the study and invited to participate by their social worker. At Time 1, data were collected from 81 caregiver-child dyads. At Time 2, 64 dyads (79% of Time 1 participants) remained in the study. Only dyads who participated at both time points were considered in the analyses. Of those who dropped out of the study, eight were no longer actively on clinical protocols, seven died, one was unable to participate because of serious illness, and one became upset after the initial data collection and was not approached again for further participation. No significant differences were evident between those participants who remained in the study and those who were unable to complete the study on any of the psychological, physical, or demographic variables (p > .15).

Demographics of the participants are as follows. Of the children, there were 35 (55%) boys and 29 (45%) girls, 74% were white, 10% were African American, 8% were Hispanic, and 8% were biracial. Age ranged from 8 to 18 (mean = 11.8, SD = 2.64). Regarding the mode of transmission of HIV, 37% of the children had vertically-acquired HIV, 33% contracted HIV by a hemophilia-related transfusion, and 30% contracted HIV by a blood transfusion alone. Of the caregivers, 71% were biological parents, 16% were adoptive parents, 3% were foster parents, 9% were extended relatives, and 2% were "other." Caregiver yearly income levels are as follows: less then $15,000 (17.5%), $15,000 to $29,999 (17.6%), $30,000 to $49,999 (24.6%), $50,000 to $100,000 (35.1%), and over $100,000 (5.3%). Education level attained by the caregivers were middle school (3.4%), high school (27.6%), college or vocational school (60.3%), and graduate school (8.6%).

Procedures
After agreeing to take part in the study, interviews were conducted separately with each child and caregiver. The purpose of the study was explained to the caregiver and informed consent was obtained (caregivers gave informed consent for both themselves and their children). Each interview lasted 45 minutes to an hour and was administered a second time approximately 12 months later. Both the children and the caregivers were asked to complete pencil and paper assessment measures, and the children were administered a structured questionnaire.

Structured Interview for Children
A structured interview was created for this study to assesses social interactions regarding HIV/AIDS, family communication, hopefulness, avoidant behavior, and the degree of disclosure of the child’s diagnosis to others. Disclosure to friends was based on the question, "Do (your friends) know that you are HIV+?" Based on whether or when the children changed in disclosure status during the course of the study, participants were divided into three groups: a) children who had told their friends before the study (previous disclosers), b) children who disclosed their diagnosis to their friends sometime during the year of the study (recent disclosers), and c) children who had still not disclosed their diagnosis to their friends by the end of the study (nondisclosers). Potential mediator and moderator variables were derived from the following interview questions: a) talking to friends ("Do you ever talk to (your friends) about having HIV/AIDS?"); b) feel better talking to friends ("Does it help you to feel better when you talk to (your friends) about how you feel?"); c) thinking about HIV/AIDS ("How often do you think about HIV/AIDS?"), scored on a five-point Likert scale (1 = never, 2 = not that much, 3 = sometimes, 4 = a lot, and 5 = all the time); and d) age and gender.

Physical Health Measures
Percentage of CD4 (helper/inducer) T lymphocytes.
At the time of data collection, CD4% was believed to be the best predictor of the progression of AIDS (45, 46). The percentage is calculated by comparing the CD4-positive lymphocytes to the total number of lymphocytes in the peripheral blood. These percentages are noted on every visit the child makes to the clinic. CD4% was collected from the child’s medical chart at each time point the child was interviewed.

Medication.
Each child’s nurse practitioner noted the child’s medications at each of the two time points of this study. This information was kept in a database of all the children who were on clinical protocols. Although the children were often on many medications at one time, for the purposes of this study we recorded all of the medications the child was on during the year of the study. The medications were coded according to whether the child was taking antiretroviral drugs, protease inhibitors, or both.

Psychological Measures
Self-Concept.
Children between the ages of 8 and 13 years completed the SPPC (47). Children between the ages of 14 and 18 years completed the SPPA (48). The SPPC measures six aspects of the child’s self-concept: scholastic, social, athletic, physical, behavioral, and global. The SPPA measures nine aspects of the adolescent’s self-concept: scholastic, social, athletic, physical, behavioral, job, romantic, friendship, and global. For both the SPPC and the SPPA, the global self-concept subscale was highly correlated with the other subscales. Therefore, only the global subscale from either measure was considered in the analyses reported below. For both the SPPC and SPPA, the child is presented with two sentences (example, "some kids feel that they are very good at their school work" and "some kids worry about whether they can do the school work assigned to them"), then the child is asked to choose which sentence is most like them, then choose if it is "sort of true for me" or "really true for me." The item is then scored on a scale of 1 to 4; 1 or 2 if the child chose the negatively worded sentence and 3 or 4 if the child chose the positively worded sentence. In the present study, Cronbach’s alphas for the SPPC global subscale ranged from 0.77 (Time 1) to 0.80 (Time 2), and for the SPPA global subscale Cronbach’s alphas ranged from 0.89 (Time 1) to 0.88 (Time 2). The internal consistency for the normative sample ranged from 0.78 to 0.84 for the SPPC and from 0.80 to 0.89 for the SPPA.

Behavioral Problems.
The child’s caregivers completed the 118-item CBCL (49) as a measure of the child’s level of behavioral problems. To complete the CBCL, the respondent is asked to choose from a three-point response scale indicating whether a problem behavioral description is "not true" (= 0), "somewhat or sometimes true" (= 1), or "very true or often true" (= 2) of the child. Due to considerations regarding the unique population of chronically ill children, two of the eight scales were deemed inappropriate for use in this study. The two subscales that were eliminated may have given misleading results because they pertained to somatic complaints and thought problems, both of which would be difficult to differentiate between what is actually symptomatic of HIV/AIDS and what we are interested in learning about regarding behavior problems. The six remaining subscales were summed to produce a total score with Cronbach’s alpha range from 0.88 (Time 1) to 0.94 (Time 2). It has been widely accepted that the CBCL has exhibited adequate validity and reliability.

	RESULTS

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Data Analyses
The primary analyses examined the impact of the different categories of self-disclosure to friends on the dependent measures pertaining to disease progression (CD4%) and psychological well-being (child behavior problems and self-concept). Initial data analyses consisted of univariate ANOVA to assess whether children who had previously disclosed differed from children who had not yet disclosed their HIV/AIDS status at the beginning of the study (Time 1). Next, changes on the dependent measures from Time 1 to Time 2 were examined among the three disclosure categories (previous disclosure, recent disclosure, and no disclosure) using ANOVAs and ² tests. Follow-up analyses of significant effects were examined using Tukey’s Honestly Significant Difference test, with significance set at p < .05. Analyses employed only data obtained from the Structured Interview for Children or from the child’s medical records.

Self-Disclosure to Friends Before Initial Assessment
Scores at Time 1 for the three dependent measures (CD4%, SPPC/SPPA, and CBCL) were considered in separate ANOVAs that compared previous disclosers with children who had not yet disclosed their HIV/AIDS status at the beginning of the study (see Table 1). None of these analyses approached significance (CD4%: F(1,62) = 1.02, p = .32; SPPC/SPPA: F(1,61) = 0.227, p = .64; CBCL: F(1,59) = 0.012, p = .91). Thus, previous disclosure of HIV/AIDS status did not seem to influence Time 1 indicators of either disease progression or psychological well-being.

View larger version (10K): [in this window] [in a new window]   Fig. 1. CD4% change for each self-disclosure category.

Potential Mediators of Self-Disclosure
We next explored whether the salutary effects of recent self-disclosure on CD4% may have been due to the mediating impact of group differences in demographic variables or levels of medication.

Demographic Variables.
An ANOVA for differences in the child’s age across the different disclosure groups (recent, previous, and no disclosure) was significant, F(2,60) = 7.72, p < .01. Follow-up comparisons of means showed that recent disclosers were significantly younger at Time 1 (mean = 9.55, SD = 2.11) than previous disclosers (mean = 12.6, SD = 2.42). To examine whether child’s age was confounded with the effect of disclosure to friends on CD4%, the change in CD4% across disclosure groups was reexamined in an ANCOVA with child’s age as a covariate. This analysis was significant, indicating that with the child’s age controlled, self-disclosure to friends was still associated with significantly greater CD4% change, F(2,59) = 5.08, p < .01. The relationship between the child’s gender and the three disclosure groups was explored using a ² analysis. This analysis was not significant, ²(2) = 4.43, p > .10, and gender was not considered further.

Medications.
Because medications are often associated with a change in CD4% (50), the relationship between CD4% change and medications was examined. In the present study, CD4% change did not vary significantly in relation to antiretroviral therapies or to the combination of antiretroviral and protease inhibitors, but was significantly associated with the use of protease inhibitors when considered separately. Children who had taken protease inhibitors over the course of the study had a larger increase in CD4% change (N = 21, mean = 3.76, SD = 4.35) than did children who had not taken protease inhibitors (N = 43, mean = 0.81, SD = 5.11), t(62) = 2.27, p < .05. Although both protease inhibitors and self-disclosure were found to be independent predictors of CD4% change, the interaction between these variables did not approach significance, F(2,62) = 0.726, p > .15. To control for the potential confounding influence of protease inhibitors, the effect of disclosure to friends on CD4% was reexamined in an ANCOVA with protease inhibitors as a covariate. After controlling for protease inhibitors, children’s self-disclosure to friends was still associated with significantly greater CD4% change, F(2,59) = 4.37, p < .05. The mean CD4% changes, adjusted for protease inhibitors, were as follows: recent disclosers (mean = 5.47), previous disclosers (mean = 1.42), and nondisclosers (mean = 0.00).

Other Characteristics and Behaviors Associated With Disclosure
Additional analyses were conducted to further explore the characteristics and behaviors associated with different categories of disclosure of HIV/AIDS status. Each of these variables was derived from the structured interview with the child and included a) the number of people in the child’s social network who knew the child’s HIV/AIDS status; b) whether the child typically discussed HIV/AIDS among family members; c) whether the child typically discussed HIV/AIDS with friends; d) the frequency with which the children thought about HIV/AIDS, and e) whether the child stated that talking to friends made him or her feel better.

A comparison of the recent disclosers and previous disclosers for the number of people who knew the child’s HIV/AIDS status was significant, t(62) = 3.15, p > .05. Greater numbers of people knew the HIV/AIDS status for previous disclosers (mean = 8.81, SD = 3.02) than recent disclosers (mean = 5.09, SD = 2.22). A comparison of recent, previous, and nondisclosers for whether or not HIV/AIDS was discussed among family members did not approach significance, ²(2) = 0.74, p > .15. A comparison of recent and previous disclosers for whether or HIV/AIDS was commonly discussed with friends was significant, ²(1) = 6.19, p < .05. Follow-up analyses of individual cell frequencies showed that, relative to the chance frequency (67%) for discussion with friends, previous disclosers were significantly more likely to discuss HIV/AIDS with friends (76%), standardized residual = 2.5, p < .01, and that recent disclosers were significantly less likely to discuss HIV/AIDS with friends (37%), standardized residual = –2.5, p < .01. Finally, when questioned at the beginning of the study (Time 1), previous disclosers reported thinking about HIV/AIDS significantly more often (mean = 2.83, SD = 1.06) than children who had not yet disclosed their HIV/AIDS status to friends (mean = 1.91, SD = 0.54), t(49) = 2.76, p > .01. However, children who disclosed their HIV/AIDS status to friends between Time 1 and Time 2 (recent disclosers) showed a greater change in the frequency with which they thought about HIV/AIDS compared with previous disclosers, t(49) = 2.26, p < 0.05: Recent disclosers thought more frequently about HIV/AIDS (mean = +0.60, SD = 1.34), whereas previous disclosers showed a slight decrease during this same period (mean = –0.18, SD = 0.85). At Time 2 there were no longer significant differences in the frequency of thinking about HIV/AIDS for previous disclosers (mean = 2.50, SD = 0.99) and recent disclosers (mean = 2.50, SD = 1.43), t(50) = 0.47, p = .64. Analyses of whether talking to friends helped the child feel better did not approach significance, ²(2) = 2.54, p > .15.

	DISCUSSION

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
Many children infected with HIV/AIDS are surviving longer and developing through childhood into adolescence and early adulthood. Parents of these children struggle with how to best handle the question of whether or not to allow their child to inform others of their diagnostic status. Empirical evidence from a number of sources examining diverse populations has suggested that disclosure of emotionally painful experiences generally exerts a salutary impact on physical health (6, 26, 40). In the present study, we measured disease progression (change in CD4%) and psychological well-being (self-concept and behavioral problems) over a 1-year period and compared children who had self-disclosed their HIV/AIDS diagnosis to friends during the study (recent disclosers) with that of children who had not yet disclosed their HIV/AIDS status to friends (nondisclosers) and children who had previously disclosed their HIV/AIDS diagnoses to friends before the onset of the study (previous disclosers). Consistent with predictions, recent disclosers showed a significant increase in CD4% from Time 1 to Time 2 relative to nondisclosers, supporting a slowing of progression of HIV illness. The recently disclosing children also showed a significantly greater increase in CD4% relative to previous disclosers. Additional analyses showed that recent disclosers were younger than the other children in the study and that CD4% was associated positively with the use of protease inhibitors in the medications regime. However, when these potential moderating influences were controlled, the salutary association between recent disclosure and increased CD4% remained significant. Finally, self-disclosure was not meaningfully related to either self-concept or behavioral problems.

Limitations of the Present Study
Interpretation of these findings must be tempered by at least four methodological limitations. First, participants were not selected randomly. The sample was obtained from a population of children participating in clinical drug protocols at the National Institutes of Health. Participants in the present study were part of a larger psychosocial investigation of the psychological effects on children who are long-term survivors of HIV/AIDS (ie, diagnosed at least 8 years before the first data collection) (40–42). The participants in the present study differed from typical pediatric HIV clinic referrals because all of the children were long-term survivors of HIV/AIDS, and therefore half of the children in the present sample contracted HIV through blood transfusions, whereas most children in current HIV clinics have acquired the disease through vertical transmission. The fact that the participants in the present study were not randomly selected leads us to be cautious when trying to generalize these findings to a wider population.

A second limitation is the current study’s correlational design. The category of recent disclosure was not precise but, rather, represented self-disclosure at any point during a 1-year period. Thus, the data produced by this study must be considered carefully because an unambiguous causal relationship between disclosure and change in functioning could not be determined. A more exact sense of causality should be possible in subsequent studies using a more precise design in which long-term functioning is assessed prospectively from the point of initial disclosure.

A third limitation of the present study is that the independent variable of self-disclosure and all of the psychological dependent variables were obtained by either the child’s or the parent’s self-report. Such measures are limited by their subjective nature and the possible influence of self-presentational concerns. In the case of the parent’s self-report ratings of the child’s behavioral problems, the parent’s own psychological state may confound their perceptions of their children. For instance, Riekert et al. (unpublished data, 1996) found that, for parents of children infected with HIV, the parents who reported themselves to be more distressed also rated their child as more distressed compared with the child’s rating of their own level of distress. Future research will need to examine this point.

Finally, a fourth limitation is that HIV disease progression was assessed using only one outcome measure, CD4%. Other measures, such as the number and the severity of adverse health events (eg, upper respiratory infections), may be stronger indicators of HIV disease progression. Future investigations using multiple measures of disease progression would allow a more precise assessment of the link between disclosure and health.

Explanations
Within the context of these limitations, several explanations for the present findings may be considered. The vast majority of affirmative evidence for the importance of self-disclosure has been obtained with adult samples. Whether these same benefits would also apply to children has been unclear (29), particularly when considering children whose health difficulties may carry the added burden of social stigma (31). The present findings offer preliminary data that generalizes the health benefits of self-disclosure to children with serious illness.

One possible explanation for the positive association between self-disclosure and change in CD4% extends the common explanation for the health benefits associated with self-disclosure among adults. The repeated act of concealing personal secrets or traumatic information is thought to require inhibitory processes that are physically taxing and result in increased health costs. Furthermore, the inhibition or suppression of distressing content tends to lead to rumination and increased worry (6, 39). Both suppression and rumination are thought to be forms of physiological work that stress the body and over time exert a cumulative impact, resulting in reduced immune response and increased health problems (6), whereas self-disclosure produces a release from inhibition and consequently improved health (12, 13, 40). Although it is plausible that similar mechanisms inform the link between children’s disclosure of HIV/AIDS status to friends and increased CD4%, further research will need to address some of the methodological limitations described above before this explanation can be accepted with greater confidence.

Alternatively, self-disclosure of distressing secrets may be adaptive because it promotes cognitive reschematization (10, 40, 41). Some theorists have suggested that the act of disclosing personally distressing information fosters adaptation by promoting its reinterpretation, redefinition, and accommodation into existing schematic structures (10, 51, 52). The degree that disclosure in the current study was associated with thinking about HIV/AIDS was not incompatible with this view. Children who disclosed to friends during the study showed significant increases in how often they thought about HIV/AIDS and, by the second wave of data collection, thought about HIV/AIDS as much as did the children who had previously disclosed to friends. Thus, consistent with the reschematization hypothesis, disclosure in children was associated with increased cognitive activity related to the distressing content.

Given the consistency of these data with the reschematization hypothesis, the fact that no significant associations were found between children’s self-disclosure and self-concept or changes in behavior problems is somewhat puzzling. Presumably, keeping difficult and painful information such as the diagnosis of HIV/AIDS to oneself can be damaging to a child’s psychological well-being. It has been speculated that the cognitive benefits of disclosure, such as reschematization, lead to positive changes in self-concept and capacity for affect and behavior regulation (40, 41). For example, when a child is not able to discuss his or her diagnostic status with friends, the child loses an important means of testing how others may respond, or of gaining a positive understanding of the illness in the face of the existing negative societal stigma.

One explanation for the lack of such a relationship in the present study may be that all of the participants were patients at the National Institutes of Health (NIH) and participants in other HIV/AIDS protocols. This select group of children may not be as isolated from other children infected with HIV/AIDS as would the general population. These children tend to spend a significant amount of time at NIH, which is an environment that fosters and promotes education and support of children infected with HIV. Another explanation may be that broad psychological changes in self-concept may require more extensive or prolonged cognitive reschematization than could be wrought by a single act of disclosure. Conversely, it may be that the psychological measures used in this study were simply not sensitive to the more subtle cognitive changes associated with disclosure. This explanation is given additional credence by the fact that the psychological variables were measured by self-report and hence may reflect biases on the part of both the child and the parent respondents (Riekert et al., unpublished data, 1996). Finally, it may be that any positive psychological benefits generated by self-disclosure were nullified by the negative social stigma associated with revealing childhood HIV/AIDS status, such as casting the family in a negative or suspect light. At minimum, because the data from the present study do not allow us to distinguish between these explanations, we can only conclude that our findings neither support nor discount the exploratory hypothesis that self-disclosure of HIV/AIDS status exerts a salutary influence on a child’s psychological well-being.

These data may suggest practical implications for parents of children who have been infected with HIV, but the limitations of the study must be kept in mind. The fact that these data cannot directly address the reasons why disclosure of HIV/AIDS status may slow disease progression suggests a need for further research.

	ACKNOWLEDGMENTS

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 
We would like to thank James Youniss, Melanie Greenberg, Anthony Papa, and Douglas Sloan for their suggestions and comments during the development of this manuscript, Ellen Townley for her assistance in extracting data from patient medical charts, and Kevin Weinfurt for his statistical and moral support.

Received for publication July 24, 1998.

Revision received September 17, 1999.

	REFERENCES

TOP ABSTRACT INTRODUCTION EFFECTS OF SELF-DISCLOSURE CHILDREN AND THE SELF-DISCLOSURE... METHODS RESULTS DISCUSSION ACKNOWLEDGMENTS REFERENCES

 

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