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. Author manuscript; available in PMC: 2013 Mar 1.
Published in final edited form as: J Adolesc Health. 2011 Sep 3;50(3):315–317. doi: 10.1016/j.jadohealth.2011.06.003

Patterns of Disclosure among Youth who are HIV Positive: A Multisite Study

Allison G Dempsey 1, Karen E MacDonell 2, Sylvie Naar King 2, Chuen-Yen Lau 3; The Adolescent Medicine Trials Network for HIV/AIDS Interventions
PMCID: PMC3278707  NIHMSID: NIHMS322679  PMID: 22325140

Abstract

Purpose

Disclosure of serostatus is critical to preventing the transmission of HIV among youth. The purpose of this exploratory study is to describe serostatus disclosure in a multisite study of youth living with HIV.

Methods

This study investigated disclosure and its relationship to unprotected sex among 146 youth participating in a multisite study of young people living with HIV who were sexually active within the past 3 months.

Results

Forty percent of participants reported a sexual relationship with a partner to whom they did not disclose their serostatus. Participants with multiple sexual partners were less likely to disclose than those with one partner. Disclosure was more frequent when the serostatus of the sexual partner was known. Disclosure was not associated with unprotected sex.

Conclusions

Prevention initiatives should focus on both disclosure and condom use in this high risk population, particularly for youth with multiple sexual partners.

Keywords: Serostatus Disclosure, HIV/AIDS, Public Health, Prevention/Control


Promoting disclosure of serostatus to sexual partners is critical for HIV/AIDS prevention [1]. Individual behaviors associated with non-disclosure among youth include high number of sexual partners [2-4] and known negative serostatus of the sexual partner [2]. Research on disclosure among youth is limited by small sample sizes [4] that do not reflect the disproportionate prevalence of HIV in African American youth [5]. Additionally, the relationship between serostatus disclosure and condom use needs to be explored, as one study reported that nearly 25% of the youth with HIV reported lack of condom use during their most recent sexual encounter [6].

The purpose of this exploratory study is to describe serostatus disclosure in a multisite study of high-risk youth living with HIV recruited from adolescent medicine clinics from 2005-2006. This study adds to the literature by reporting individual characteristics and behaviors associated with serostatus disclosure among a relatively large clinical sample of youth more representative of the general population of youth living with HIV in the US.

Methods

Participants

Participants were recruited as a part of a large multi-center intervention trial (ATN 004) from five US cities. To be part of the larger study, participants (N = 205) met the following inclusion criteria (at least 1 in the prior 3 months): (a) prescription for antiretroviral medications; (b) engagement in vaginal/anal sex; and (c) drug/alcohol use. This study examined confidential baseline data from participants with at least one sexual encounter within the past 90 days. Of the 151 participants (ages 16-24) who met these criteria, 94% reported drug/alcohol use. Missing data resulted in the exclusion of an additional 5 participants, resulting in a final sample of 146 participants (52% biologically male). Of the 146 participants, 127 (87%) acquired HIV behaviorally.

Informed consent was obtained from all participants. The IRBs at all sites approved waiver of parental consent and study procedures.

Variables

Demographics

Participants reported their biological sex, ethnicity, route of transmission, highest education level, and sexual orientation.

Number of sexual partners in the past 90 days

This was collapsed into two categories (one, more than one) due to a strong positive skew in the distribution of data. The majority (56%) of participants reported only 1 partner and the remainder indicated 2 (17%), 3 (9%), 4 (6%), 5 (5%), and 6 to 30 partners (8%).

Level of disclosure

This was calculated as percentage of partners to whom the participant disclosed status out of total number of partners. Participants were divided into two categories: (1) full: disclosure to all partners; (2) not full: absence of disclosure to some or all partners.

Partner status

For each partner, participants indicated the partner's HIV status as positive, negative or unknown at the time of the sexual encounter.

Unprotected Intercourse

This variable was defined as anal or vaginal sex without a condom in the past three months.

Results

Of the 146 participants, 68 (47%) engaged in unprotected intercourse and 58 (40%) did not disclosure to all partners. Thirty participants (21%) did not disclose to their partner and engaged in unprotected sex.

Demographics

Chi-square test statistics were conducted to evaluate the relationships between disclosure category and condom use with the dichotomized participant demographics. Neither level of disclosure nor condom use differed by demographic characteristics (Table 1).

Table 1. Differences in level of disclosure and engagement in unprotected sex based upon demographic characteristics.

Level of Disclosure Engagement in Unprotected Sex
Full Not Full No Yes
Characteristic N (%) N (%) χ2 p-value N (%) N (%) χ2 p-value
Total Sample 78 (53%) 68 (47%)
Gender
Male (n=76) 40 (53%) 36 (47%) 3.19 p=0.07 44 (58%) 32 (42%) 1.27 p=0.26
Female (n=70) 47 (67%) 23 (33%) 34 (49%) 36 (51%)
Ethnicity
African-American (n=112) 63 (56%) 49 (44%) 2.23 p=0.14 57 (51%) 55 (49%) 1.24 p=0.27
Other (n=34) 24 (71%) 10 (29%) 21 (62%) 13 (38%)
Education
Age 16-18: No HS Diploma (n=31) 13 (42%) 18 (58%) 3.58 p=0.06 16 (52%) 15 (48%) 0.64 p=0.42
Age 16-18: HS Diploma/Equivalent (n=9) 7 (78%) 2 (22%) 6 (67%) 3 (33%)
Age 19-24: No HS Diploma (n=41) 26 (63%) 15 (37%) 0.001 p=0.97 22 (54%) 19 (46%) 0.018 p=0.89
Age 19-24: HS Diploma/Equivalent (n=65) 41 (63%) 24 (37%) 34 (52%) 31 (48%)
Sexual Orientation
Heterosexual (n=82) 54 (66%) 28 (34%) 3.05 p=0.08 43 (52%) 39 (48%) 0.073 p=0.78
Sexual Minority (n=64) 33 (52%) 31 (48%) 35 (55%) 29 (45%)
Number of Partners
One Partner (n=82) 63 (77%) 19 (23%) 23.09 p<.0001 47 (57%) 35 (43%) 1.139 p=0.28
More than One Partner (n=64) 24 (37%) 40 (63%) 31 (48%) 33 (52%)
Route of Transmission
Perinatal (n=19) 9 (47%) 10 (53%) 1.36 p=0.25 11 (58%) 8 (42%) 0.18 p=0.68
Behavioral (n=127) 78 (61%) 49 (39%) 67 (53%) 60 (47%)

Sexual Risk Behaviors

Number of Partners

chi-square test of association analyses was conducted to determine the relationship between number of partners and disclosure. Participants with more than one partner reported less full disclosure (37%) than participants with one partner (77%) (χ2 = 23.09; p<.001) (Table 1).

Partner Status

Overall, 29% of participants reported a sexual encounter with positive partner, 49% with a negative partner, and 44% with a partner of unknown status. Binary tests for differences in proportions revealed that full disclosure was significantly more frequent among participants with a partner of known positive status versus unknown status (93% versus 31%; z = 6.31; p < .001) and known negative status versus unknown status (79% versus 31%; z = 5.70; p < .001) (see Figure 1).

Figure 1.

Figure 1

Participant disclosure status to partners of known positive, known negative, and unknown statuses

Unprotected Intercourse

Chi-square test of association analyses was conducted to determine the relationship between level of disclosure and unprotected intercourse. There was no difference in rates of unprotected sex between those with full disclosure (n=38; 43%) and those without (n=30; 50%) (χ2 = .73; p = .39).

Discussion

Findings highlight the need for continued efforts to promote serostatus disclosure among youth with HIV. Disclosure was not associated with demographic characteristics, indicating that all youth with positive serostatus should be the target of prevention efforts.

Consistent with previous research [3], disclosure of serostatus was negatively associated with number of partners; thus, youth with multiple sexual partners are at particularly high risk for transmitting HIV due to their decreased likelihood of disclosing status to partners. The lowest rates of disclosure were to partners of unknown status, suggesting that interventions should focus on communication with more casual partners where status is more likely to be unknown. Therefore, health professionals need to promote disclosure and condom use via strategies such as motivational [8] and multisystemic therapy interventions [9], particularly with youth with multiple sexual partners.

The lack of difference in engagement in unprotected sex between those with full and not full disclosure may be due to the high risk sample, as other studies support this link [7]. Furthermore, this study focused on condom use in the past three months, and it is possible that disclosure is associated with consistent condom use over a longer period of time.

Limitations of this study include the dichotomous categorization of variables and the high-risk nature of the sample. Furthermore, participants were recruited in adolescent medicine clinics; those who do not attend appointments may differ from our sample. Although we did not stratify our sample by routes of transmission, analyses did not indicate that the groups significantly differed in rates of disclosure or unprotected sex. Future research should focus on understanding the factors associated with disclosure to casual sexual partners and the exploration of other behaviors/characteristics (e.g., living situation, survival sex) associated with serostatus disclosure.

Implications and Contribution Statement

This study examined disclosure and condom use among youth with HIV. A large proportion of participants did not disclose serostatus to partners and/or engaged in unprotected sex. No link was found between disclosure and condom use. Clinicians should promote both condom use and disclosure individually in adolescent medicine clinics.

Acknowledgments

This work was supported by The Adolescent Trials Network for HIV/AIDS Interventions (ATN) [5 U01-HD040533 and 5 U01 HD 40474 from the National Institutes of Health through the National Institute of Child Health and Human Development (B. Kapogiannis, S. Lee)], with supplemental funding from the National Institutes on Drug Abuse (N. Borek) and Mental Health (P. Brouwers, S. Allison). The study was scientifically reviewed by the ATN's Behavioral Leadership Group. Network, scientific and logistical support was provided by the ATN Coordinating Center (C. Wilson, C. Partlow) at The University of Alabama at Birmingham Network operations and data management support was provided by the ATN Data and Operations Center at Westat, Inc. (J. Korelitz, J. Davidson, B. Harris). We acknowledge the contribution of the investigators and staff at the following ATN 004 sites that participated in this study: Children's Diagnostic and Treatment Center (Ana Puga, MD, Esmine Leonard, BSN, Zulma Eysallenne, RN); Childrens Hospital of Los Angeles (Marvin Belzer, MD, Cathy Salata, RN, Diane Tucker, RN, MSN); University of Maryland (Ligia Peralta, MD, Leonel Flores, MD, Esther Collinetti, BA); University of Pennsylvania and the Children's Hospital of Philadelphia (Bret Rudy, MD, Mary Tanney, MPH, MSN, CPNP, Adrienne DiBenedetto, BSN); University of Southern California (Andrea Kovacs, M.D.,), and Wayne State University Horizons Project (K. Wright, D.O., P. Lam, M.A., V. Conners, B.A.). We sincerely thank the youth who participated in this project.

Footnotes

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