HIV Disclosure by Men Who have Sex with Men to Immediate Family over Time

JULIANNE M. SEROVICH, Ph.D.,¹ ANNA J. ESBENSEN, Ph.D.,² and TINA L. MASON, Ph.D.³

¹ Department of Human Development and Family Science,

² Department of Psychology,

³ Department of Human Development and Family Science, The Ohio State University, Columbus, Ohio.

Abstract

INTRODUCTION

IN STUDIES OF HIV disclosures by men who have sex with men (MSM) rates have been found to vary by family member. Family members most likely to receive HIV information appear to be mothers^1,2 and sisters.^3,4 Fathers, siblings, and grandparents appear to be the least likely to be informed.^1–5 Understanding disclosure to family members is important because disclosure is imperative for the acquisition of support and this support has been demonstrated to improve the lives of those living with HIV.^6–9 Support buffers stress-related or stress-inducing crises, such as physical distress,⁸ and psychological well-being.^8,10 One way the buffering effect of social support and coping may operate is by alleviating depressive symptoms.⁸ More recent evidence also suggests that social support can have a positive impact on clinical outcomes for HIV-positive persons.¹¹

Studies of specific providers of general support suggest that family members, when compared with friends, are not viewed as helpful to HIV-positive MSM.^6,12–15 There are numerous reasons this may be the case including whether one or the other group includes HIV-positive members. Primarily, however, differences may be a methodological one. For example, many of these studies^13,14,16 utilized differing types of structured interviews to evaluate support. Primarily these methods entail participants listing network members who provided various types of assistance. Using these procedures has generated data indicating a greater proportion of friends than family as providers of support. Comparing friend and family support by these means, however, may be influenced by a ceiling effect.¹⁶ That is, nuclear family is typically limited to an average of four to five individuals, whereas friends are unlimited in number.

This becomes problematic in light of family social support being linked to sexual risk-taking behaviors of MSM with lower levels of support associated with greater risk behaviors^17,18 and lack of disclosure to sexual partners.¹⁹ Family support has also been significantly associated with the intention to limit sexual partners in the future, remain monogamous, and abstain from sexual intercourse.¹⁶

One generally accepted theory of HIV disclosure contends that disease progression triggers disclosure.^3,20,21 According to the disease progression theory, individuals disclose their HIV diagnosis as they become increasingly ill because keeping it a secret becomes complicated.^20,21 That is, disease progression results in hospitalizations and health deterioration that requires individuals to explain their health condition.²¹ Furthermore, if death is imminent or individuals fear they will need additional assistance to manage the final stages of their illness, they may disclose as a means of accessing requisite additional resources.²²

The heuristic utility of the disease progression theory has been substantiated through numerous studies.^2–4,19 For example, Marks and colleagues⁴ documented that as overall symptom severity increased, disclosure to family members increased. Hays and colleagues³ found symptomatic men were more likely to disclose their HIV status to family than asymptomatic men. Disease severity and time since testing for HIV have also been demonstrated to be positively related to disclosure.² Using time since diagnosis and symptomatology, Mansergh et al.⁵ found rates of disclosure were higher among symptomatic than asymptomatic men and increased with time since diagnosis, suggesting that these are interrelated. These differences were significant for predicting disclosure to mothers, fathers, sisters, and brothers, thereby providing persuasive evidence for the disease progression theory.

More recently, HIV therapies have advanced considerably resulting in many individuals failing to exhibit a standard pattern of declining health. In fact, while numerous difficulties have been associated with HIV infection, the disease is still considered by many as chronic yet manageable.^23–25 HIV/AIDS treatment advances, in particular that of highly active anti-retroviral therapy (HAART), may play a role in decisions regarding disclosure. For many with HIV on a HAART regimen, the virus has become completely undetectable, however, given the side effects of HIV medications, toxicity, and the problems of medication adherence,²⁶ positive outcomes such as undetectable virus does not hold true for many HIV-positive individuals.²⁷ In fact, more recent evidence suggests that timing of HAART might also impact mortality outcomes.²⁸ These tumultuous changes may mean that men may temporarily or indefinitely wait to disclose to family members and calls into question the suitability of the disease progression theory. Given medical advances it is plausible that those infected may have adapted their disclosure decisions accordingly.

In a more recent test of the disease progression theory, a relationship between disease progression and disclosure was not found, suggesting that disease progression may not play a central role in the decision to disclose an HIV diagnosis.²⁹ In this study, it was suggested that individuals are more likely to evaluate the outcome of disclosure to particular family members and based disclosure decision on the weighting of both positive and negative consequences of such an action. That is, individuals weigh the rewards and costs associated with the need for disclosure to each family member. Until the rewards of disclosure outweigh possible repercussions, disclosure does not occur.

PURPOSE

MATERIALS AND METHODS

Participants

Participants for this study were 135 HIV-positive gay men recruited primarily from an AIDS Clinical Trials Unit (ACTU) associated with a large midwestern university. Recruitment began in February 1998 and continued through July 2000. Attending physicians and medical staff approached potential participants and informed them about the study. Eligible participants included HIV-positive men who reported either being gay or having sex with other men and were 18 years of age or older. The actual number of patients approached was not documented; hence, a final participation rate could not be computed.

Participants were primarily single (i.e., not partnered; 66%), Caucasian (86%) men between the ages of 21 and 61 (M = 38 years, standard deviation [SD] = 7), who contracted HIV from unsafe sexual practices (80%). At entry into the study, participants had been diagnosed with HIV ranging from 1 month to 16 years (M = 83 months, SD = 54). These men were well-educated with 57% having had some college education or a bachelor’s degree and 23% having completed some graduate work. More than 59% of the participants were employed, earning an average income of $20,000 (R = $0–$90,000).

Data collection

Participants were involved in a larger, longitudinal study of HIV disclosure that involved completing questionnaires regarding mental health, physical health, social support, disease progression, and sexual risk-taking behaviors once every 6 months for 3 years resulting in seven data collection points. While the parent study involved collecting data longitudinally, the data used in this study were retrospective in nature. Participants completed an initial interview and questionnaire at the beginning of the study (phase 1). Yearly men took part in a structured interview, completed a questionnaire, and sexual behavior calendar (phases 3, 5, and 7). Six months into each yearly wave of data collection participants returned to fill out a questionnaire and sexual behavior calendar (phases 2, 4, and 6). Participants were interviewed by trained doctoral students about their social network using an adaptation of Barrera’s Arizona Social Support Interview Schedule (ASSIS).³⁴ Participants were asked with whom they would discuss personal issues, receive advice, borrow money, invite to socialize, garner positive feedback, request physical assistance, and experience negative interactions (i.e., argue or fight). In addition, they were asked with whom they had sexual interactions within the past 6 months. Structured interviews took between 40 and 90 minutes and questionnaires took between 30 and 60 minutes to complete.

From each structured interview a list of social support network members (those individuals mentioned during the ASSIS interview) was constructed. Demographic data (i.e., age, gender, and ethnicity) of each network member and information including their knowledge of participant’s HIV status, the length of relationship, and the participant’s satisfaction with each relationship was obtained. Then, participants were asked if each individual in their social network, including their immediate family, knew of their diagnosis. If a particular person had knowledge of the diagnosis, we first probed as to who did the disclosing. Because second-hand disclosure can happen easily in families (particularly between parents), interviewers spent a considering time probing the nature of each disclosure episode. Typical responses included, “I did,” “My mother did,” “I don’t know.” If the participant personally disclosed, the month and year of that disclosure was obtained. If the participant was unsure if the network member knew, this was noted and if the network member did not know of the diagnosis, it was recorded as a nondisclosure. Ages at the time of disclosure for both the participant and their network member were calculated for each disclosure.

As noted earlier, data reported here is retrospective in nature, and therefore some caution is advisable. However, when the data were collected it was understood that such information could be inherently flawed so training procedures for data collection and handling were instituted to minimize error. First, considerable time was given for participants to tell their disclosure story. Given this was a memorable event, such reconstruction of events came easily to most. Interviewers were trained to allow participants the opportunity to recollect the events surrounding their testing and diagnosis. Probes such as, “Where did you get tested?” and “Who was with you when you found out?” were offered. This sufficiently contextualized the event for many. Second, for those who were uncertain as to an exact month but remembered the year, probes such as, “Was it winter, spring, summer, or fall?” “Was it before or after Christmas?” were offered to assist with recall. Third, if the person seemed to be guessing or did not know for sure, the interviewer further contextualized the situation by including probes such as, “Where were you?” “Was it over the phone or in person?,” “How did they respond?” This allowed for the determination if a disclosure actually occurred or if the network member found out through second-hand disclosure (e.g., family member, family friend, gossip, or guessed). If the participant was certain that they had disclosed their status but could not recall a year, again attempts were made by the interviewer to assist with memory recall. Triggers, such as, “Where were you living at the time?” or “Where were you working?” all assisted with attempts to jog the participant’s memory. In some instances, family members may have found out accidentally (e.g., found medication, overheard phone messages). These instances were not counted as disclosure. For this study, in order to be classified as a disclosure, the participant themselves must have actually disclosed their HIV status to that family member.

HIV status and date of diagnosis was confirmed through medical records.

Dependent measure

The dependent variable of interest is the event of disclosure by an individual with HIV of his serostatus to a family member. Time to disclosure to each family member is measured in months from the date of HIV infection to the date of disclosure of HIV serostatus. Survival analysis is an appropriate statistical methodology for analyzing these data because the data meet all necessary requirements of a clear time origin, a scale for measuring time, and a clear end point. Survival analysis provides an estimate of the proportion of the sample that would have been disclosed to at various times. Family members who have not been told of the participant’s HIV status were treated as “censored” data. Censored data, however, are not considered missing data. Rather, labeling them censored takes into account that although the participant did not disclose their serostatus to a family member, there is the potential that they could disclose this information to this individual in the future.

Independent variables

Family member. The focus of the present study was on disclosure of HIV status to family members. Of the 135 participants, 116 reported a mother or stepmother and 100 reported a father or stepfather. These men also reported having 188 brothers or stepbrothers and 193 sisters or stepsisters (Table 1). Family members were primarily Caucasian (mothers, 79%; fathers, 82%; sisters, 63%; brothers, 68%). Mothers ranged in age from 34 to 92 (M 5 61 years, SD 5 9), fathers from 39 to 92 (M 5 64 years, SD 5 10), sisters from 12 to 72 (M 5 37 years, SD 5 10) and brothers from 8 to 66 (M 5 39 years, SD 5 9). Of the 597 family members, only 4 individuals were disclosed to after the participant entered into the research study.

Family members were excluded from the analyses if they had been informed of the participant’s serostatus by someone other than the participant, or if a valid date of disclosure was unavailable or unreliable. Family members identified as deceased prior to the participant’s diagnosis with HIV were excluded. Of the 116 mothers identified, 16 had been told by someone else, and 3 were deceased. Of the 100 fathers identified, 26 had been told by someone else and 6 were deceased. Of the siblings, 64 sisters and 61 brothers had been told by someone else. This resulted in a final sample size of 421 family members.

Disease model. Two variables related to disease progression were included in the model. First is whether the participant was diagnosed with HIV preadvent or postadvent of HAART. Second is for how long (in months) the individual had been diagnosed with HIV at entry into the study.

Family characteristics. Demographic information provided in the structured interview was included in the model. The age of the family member at the time of disclosure, current satisfaction with the relationship using a 1–5 Likert-type rating scale ranging from “very satisfied” (1) to “very dissatisfied” (5), and race were variables entered in this analysis. It should be noted that while potentially important, the HIV status of family members was not collected.

Participant characteristics. The age of the participant at the time of disclosure to each family member and whether there was any reported prior disclosure to other family members were entered in the analysis. The latter was entered as a time-varying covariate.

Statistical analysis

RESULTS

In order to investigate the trajectory of HIV serostatus disclosure to specific immediate family members, data were analyzed separately by family member using Kaplan-Meier cumulative disclosure curves. Of the 597 family members reported by these men, exactly 50% had been told about the HIV status of the participant. Sixty-seven percent of mothers, 47% of fathers, 50% of sisters and 41% of brothers had been told of the participant’s HIV status. These percentages increase when calculated on the 421 family members, which excludes those told by someone else. According to this analysis, it would be expected that 50% of mothers would be disclosed to within 9–10 months. In the same time period, it would be expected that approximately 40% of fathers, sisters or brothers would be disclosed to regarding HIV status. A graphic representation of cumulative disclosure curve for family members is shown in Figure 1.

Family member

In order to investigate the influence of family role in the prediction of HIV disclosure over time, data were analyzed using Cox proportional hazard regression model. This analysis provided estimates of the hazard rate (relative risk) without having to specify a baseline hazard. Family role was coded using dummy variables. In comparison to mothers, sisters, and brothers, fathers served as the comparison group. The other family comparison pairs are displayed in Table 2. Within-group correlations are controlled for in all models and in all cases the null hypothesis was rejected that θ = 0 (Table 2). The effect of family role (model 1) on the time to disclosure is shown in Table 2. The hazard ratios were only statistically significant for comparisons of fathers to mothers (2.00) and brothers (1.64). These ratios indicated that at all time points after HIV diagnosis, mothers had a 100% and brothers had a 64% greater rate of being disclosed to in comparison to fathers. This is not the same as saying that mothers are twice as likely as fathers to be disclosed to, nor the same as saying that mothers are told more often. Statistically significant differences were not found for the hazard rates of any other family member comparisons.

Disease model

The family member model is elaborated upon in model 2 by testing the influence of disease progression on disclosure to family. Whether the participant was diagnosed pre-HAART or post-HAART and the length of diagnosis at entry to the study were entered into the analysis. The hazard ratios among family members remain similar, and again, statistically significant differences are only found for the hazard ratios between fathers and mothers, and fathers and brothers. Neither the timing of the HIV diagnosis (pre-/post-HAART) nor the length of diagnosis significantly influenced the hazard rates. That is to say that at all points in time, being diagnosed before or after HAART did not significantly alter the rate of disclosing one’s HIV serostatus. Also, how long an individual was diagnosed with HIV at entry to the study did not alter the rate of HIV disclosure.

Family characteristics

Characteristics of the participant’s family network were added to the analysis in model 3, substituting for the disease variables. The hazard rates for age of the family member and current level of satisfaction were statistically significant. At all points after HIV diagnosis, being one year older was associated with a lesser risk of disclosure by 4%. As current satisfaction with the family member decreased by one point (less current satisfaction), the hazard rate increased by 2%. Race did not significantly impact the hazard rate, however, this may be due to a underrepresentation of minorities in the sample. With the addition of the network characteristics, the impact of family role changes. No longer are the hazard rates between fathers and mothers or brothers statistically significant. Instead, results demonstrated that at all time points mothers have a 187% greater rate of being told than sisters, and a 134% greater rate of being told than brothers. In addition, fathers had a 133% lesser rate (inverse of 0.43) of being told than sisters.

Participant characteristics

In model 4, the network characteristics were removed, and the impact of participant characteristics were assessed. Both the age of the participant at the time of disclosure and whether they had disclosed prior to other family members significantly impacted the hazard rate. At all time points after HIV diagnosis, the participant being one year older was associated with a lesser rate of disclosure by 6%. As the participant moved from having no prior disclosure to having prior disclosure to family members, the rate of disclosure was 85% less. With the addition of participant characteristics the impact of family role changes again. Only the relative risk of brothers compared to sisters was statistically significant. At all points in time since diagnosis, brothers had a 60% greater risk of being told.

Combined model

DISCUSSION

Proportions of HIV serostatus disclosure to family members have been examined extensively, however, much of this research was completed in the early to mid 1990’s and all were examined using one, sometimes two data collection points.^2–4,13,36 Therefore, while disclosure proportions at discrete time points are generally understood, longer-term disclosure estimates have not been estimated. In fact, this appears to be the first analysis of patterns of HIV disclosure to family members. Looking at disclosure proportions in this manner is important because it may provide a better estimate of overall disclosure patterns to family.

Interpretative caution may be required because of the retrospective nature of this data. Although participants were carefully guided through the disclosure interview process, it is plausible that erroneous data was provided. This might be particularly true for participants diagnosed several years prior to the study. To the best of our knowledge, however, this is the only effort to attempt to capture a very difficult family process occurring at a time of great discrimination, high anxiety, and emotion. While a prospective account is most desirable, unfortunately, such data will never be available for this time period.

From the data gathered in point prevalence disclosure studies,^2–4,13,36 researchers have indicated that those most likely to receive information about HIV status were mothers and sisters in contrast to fathers and brothers. The current assessment of cumulative disclosure curves concurs with previous researchers as mothers remain the most likely to be recipients of HIV status information (Fig. 1). In this investigation sisters’ disclosure patterns, however, overlapped with that of brothers. During the first year of diagnosis, disclosure patterns to sisters were greater than to brothers. But between 1 and 3 years after diagnosis, disclosure patterns to brothers are greater than to sisters. One explanation for the disparity from other studies is that the timing of second hand disclosure to siblings may be influencing these cumulative disclosure rates. Overall, however, mothers tend to be told first and proportions of her knowing remain elevated over other family members across time.

One explanation for the greater tendency for mothers to be disclosed to may be the female demeanor. The tendency for mothers to be the recipient of disclosure information could be attributed to them being viewed as more sympathetic and nurturing. Mothers may also be seen as more accepting of alternative lifestyles or more motivated to maintain a connection with a child despite life circumstances that may reduce disclosure inhibition. Alternatively, disclosure could be more logistically related. Sons may experience increased access to mothers versus other family members. For example, it is possible that in divorced families, adult sons make more attempts to maintain a relationship with mothers than fathers. Each of these postulates are worthy of further exploration.

Results from this research reveal that within 1 month of diagnosis, 42% of mothers, 31% of fathers, 33% sisters, and 26% of brothers received information about a family member’s HIV status (Table 2). After 2 years, 60% of mothers, 43% of fathers, 47% of sisters, and 50% of brothers were told by the infected family member. These rates appeared to level off substantially after 10 years. Given the relative stability of these rates, beyond 15 years, it is expected that little change would occur. It is important to note that overall, disclosure of HIV status to family members over time was rather low, and if members were not disclosed to in the first 2 years the chances of disclosure occurring decreases rapidly. In fact, only 80% of mothers, 62% of fathers, 73% of sisters, and 62% of brothers were told over a 15 year period, and perhaps a lifetime (Table 2). It should be noted that these results could be overestimated based on missing data about family members. For example, of the 135 participants in the study, data on only 100 fathers were available and of these only 68 had been told by the participant. It was unclear in this study if fathers were generally absent from participants lives and not available for disclosure or deceased prior to diagnosis.

The models presented in Table 2 allow for the examination of the influence of family role, disease progression, family characteristics, participant characteristics and a combined model. When drawing conclusion about the models, it is important to look at both significant and nonsignificant results. Model 1 indicated that mothers had a 100% and brothers had a 64% greater rate of being disclosed to in comparison to fathers. In model 2, the variables length of diagnosis and pre-HAART or post-HAART were added producing some interesting results.

Previous researchers have indicated that disease progression (i.e., length of diagnosis) was a significant factor associated with disclosure to family members.^4,5 However, in the disease model 2, neither length of diagnosis or pre-HAART or post-HAART significantly altered the rate of disclosure to family members but these results further call into question the explanatory power of the disease progression theory. HIV/AIDS treatment advances, in particular that of HAART, may not play a significant role in decisions regarding disclosure. Therefore, while HAART has made a drastic shift in the HIV treatment regimen as well as significantly altering the health of those with HIV, its influence on disclosure is questionable. While admittedly the disease variables are collinear, this did not impact the results in model 2. When assessed individually, the results remain the same. It is unknown, however, what decisions regarding disclosure are made at the end of life. It is plausible that men could refrain from disclosing their HIV status even upon death. It is equally plausible that men disclose their status when faced with end of life decisions and therefore family members may become aware just prior to death. This phenomenon is worthy of further investigation.

Family characteristics were then added in model 3 and significant differences in rates of disclosure to parents diminished but crossgenerational differences emerged. Age and satisfaction with family member were, however, significant. That is, being 1 year older was associated with a lesser risk of disclosure by 4%. Interestingly, while this is suggestive that relationship satisfaction may play a role in disclosure, in this study, such differences did not emerge. Results indicated that as current satisfaction with the family member decreases by one point, the hazard rate increases by 2%. In other words, contrary to what we might assume, as satisfaction decreases the rate of disclosure increases. One point of consideration is the time at which satisfaction was measured. Satisfaction with the relationship was measured at the time the family member was mentioned during the interview and not at the time of disclosure. Therefore, it is plausible that disclosure may have caused additional stress to the relationship causing a decrease in relationship satisfaction over time. Future researchers utilizing prospective designs might be able to better test this notion.

As the results in model 4 indicated, when participant characteristics are added, differences between family disclosure rates weaken and age of the participant and prior disclosure are significant. These results suggest that participants with prior disclosures to family members had an 85% less risk of disclosure to other family members. That is, if a participant had told one or more family members within the span of 1 month, the risk of disclosure to other family members was lessened. There are several plausible reasons for this finding. First, having told one or more family members means that there are fewer possible family members to disclose to. Second, some participants tell immediate family members at or around the same time. Because of the retrospective nature of this study, disclosure was recorded in a 1-month time frame. So even if a participant recalled telling his mother first, if he told the other family members within that same month they would all be calculated from the same month. Third, it is also possible that a negative reaction from the first family member told, prompted the participant to delay future disclosures to other family members.

In the combined model, model 5, prior disclosure remained the only statistically significant variable along with differences between disclosure rates to brothers and sisters. It should be noted that the hazard ratios for age of family members between models 3 and 5 and age of participant between model 4 and 5 do not substantially change. This suggests that although characteristics of the family member and participant play a role individually in influencing disclosure rates, they become statistically nonsignificant when analyzed together along with prior disclosure. In addition, the combined model suggests that future research should focus on the variables that remained significant, that is, disclosure rates to brothers and sisters, and the impact of prior disclosure.

What we did not investigate here, that may be relevant, is the impact of circumstances such as physical proximity such as coresidency or degree of contact with family. It is possible that for men who live great distances from their families, the need or desire to disclose their HIV status is curtailed. Furthermore, it is not known to what extent, if any, coresidence may have played a role in prompting disclosure. It is also plausible that a decision is made soon after diagnosis of who will be told and who will not be told. While it may take 2 years for the disclosure to occur, the decision may be made early on and remain stable. Why this occurs remains elusive and future researchers might consider examining such factors that might affect this decision. Other possible consequences to be weighed include estrangement, prior rejections from previously difficult disclosures of a different nature (e.g., homosexuality, drug use), restricted family communication patterns, or desires to protect family members or reduce their emotional burden.

CONCLUSION

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