See all articles attached.You are a consulting psychologist for a local clinic and have been asked to follow up on a consultation you completed four years ago. There are current developments in this case that require further consideration. Please review the case file study attached or detailed information on the current case under review. Explain how the APA Ethical Principles and Code of Conduct can be used to guide decisions in this ethically complex situation. Provide a suggested course of action for the clinic staff. Given the daughter’s age and the situation presented, integrate concepts developed from different psychological content domains to support your suggested course of action. Be certain to use evidence-based psychological concepts and theories to support your arguments. You may wish to consider the following questions as you construct your evaluation(1)Should the staff encourage the daughter to inform her mother that she is sexually active?(2)Would knowledge regarding her daughter’s sexual activity influence the mother’s stance regarding disclosure?(3)Should the staff break confidentiality and inform the mother that her daughter is sexually active?(4)Should the staff encourage the mother to inform the daughter of both her and her daughter’s HIV status?(5)Does the daughter’s boyfriend have any rights in this situation? If so, what are they?(6)Based on the daughter’s age, does the mother have a right to not disclose the diagnosis to her daughter?(7)Does the mother have a right to the privacy regarding her own diagnosis, which could be threatened if her daughter learns of her own status?(8)Are there other approaches the staff can take? If so, what are they?(9)Is further information required in order for you to create an ethically sound suggested course of action?
American Psychological Association. (2010). Ethical principles of psychologists and code of conduct: Including 2010 amendments. Retrieved from http://www.apa.org/ethics/code/index.aspx
Amy D. Leonard, Christine M. Markham, Thanh Bui, Ross Shegog, & Mary E. Paul. (2010). Lowering the Risk of Secondary HIV Transmission: Insights From HIV-Positive Youth and Health Care Providers. Perspectives on Sexual and Reproductive Health, 42(2), 110–116.
Clum, G. A., Czaplicki, L., Andrinopoulos, K., Muessig, K., Hamvas, L., Ellen, J. M., & Adolescent Medicine Trials Network for HIV/AIDS Interventions (2013). Strategies and outcomes of HIV status disclosure in HIV-positive young women with abuse histories. AIDS patient care and STDs, 27(3), 191–200. https://doi.org/10.1089/apc.2012.0441
Eustace, R. W., & Ilagan, P. R. (2010). HIV disclosure among HIV positive individuals: A concept analysis. Journal of Advanced Nursing, 66(9), 2094–2103. doi: 10.1111/j.1365-2648.2010.05354.x
Gillard, A., & Roark, M. (2013). Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status. Journal of Child & Family Studies, 22(5), 672–683. https://doi.org/10.1007/s10826-012-9620-2
Horvath KJ, Weinmeyer R, & Rosser S. (2010). Should it be illegal for HIV-positive persons to have unprotected sex without disclosure? An examination of attitudes among US men who have sex with men and the impact of state law. AIDS Care, 22(10), 1221–1228. https://doi.org/10.1080/09540121003668078
Obermeyer, C. M., Baijal, P., & Pegurri, E. (2011). Facilitating HIV Disclosure Across Diverse Settings: A Review. American Journal of Public Health, 101(6), 1011–1023. https://doi.org/10.2105/AJPH.2010.300102
University of Arizona Global Campus. (n.d.). PSY699 Week 5 discussion case file [PDF]. https://content.bridgepointeducation.com/curriculum/file/e4df8669-3f07-4404-bbc8
PSY699:Master of Arts in Psychology Capstone
Week Five Discussion Case File
Case Summary Client: Victoria, 16-year-old HIV positive Latina
Consultation and suggested course of action regarding disclosure of Victoria’s HIV positive
status was received 4 years ago. Clinic decision was to honor mother’s request that HIV status not
be disclosed to her daughter Victoria, who was then 12 years old.
Current issue: Victoria is now 16 years old and has a boyfriend. Victoria has explained to her
physician at the clinic that she and her boyfriend are sexually active and do not always use
condoms. Victoria is unaware that she is HIV positive because of her mother’s insistence on non-
disclosure. The physician has not broken Victoria’s confidentiality about sexual activity, but has
expressed to her mother, Tina, that it is time for Victoria to know her diagnosis. This is based on
Victoria’s age, the statistics that many girls are sexually active at this age, and that Victoria could
endanger her partner(s). Tina continues to object to disclosure. She states Victoria’s regular
church attendance and her belief that Victoria will remain abstinent until marriage as evidence for
non-disclosure.
The staff is again wrestling with whether or not they should inform Victoria that she is HIV
positive. In doing so, they would enable her to make informed decisions about exposing her
boyfriend to the sexual transmission of HIV. However, her legal guardian (her mother Tina) does
not wish for this information to be disclosed to Victoria, who may still be considered a minor.
The clinic staff is concerned as this situation presents several ethical dilemmas and requires
further consultation.
Previous Case Summary (from 4 years ago) Client 1: Tina, a 36-year-old HIV-positive Latina woman
Client 2: Tina’s daughter, 12-year-old Victoria (also HIV positive)
Tina became infected through a former boyfriend who had a history of intravenous drug use.
Tina gave birth to an HIV-positive daughter, Victoria. Tina does not want Victoria to know that
either of them has HIV.
Victoria is now 12 years old and has been told by her mother that she takes medications for “a
problem in her blood.” Recently, Victoria stated that she does not like taking the medication and
occasionally misses doses. The clinic staff has raised the issue of whether Victoria should be told
about her diagnosis. They’ve warned Tina that in the near future, Victoria will be at an age at
which girls often become more interested in boys or sexual behavior. The clinic’s therapist feels
that if Victoria knew her diagnosis she might be more adherent to her regimen of medications.
However, Tina absolutely does not want her daughter to know. Tina believes Victoria is still too
young and will be emotionally devastated. Tina believes that it is her responsibility — and only
her responsibility as a mother — to “protect” her child, and that her daughter is “not ready” to
know. Tina also believes that Victoria is “a good girl” and will not be sexually active until she is
married.
The clinic’s therapist thinks Tina’s guilt about having transmitted the virus to her daughter is
causing her to take this stance. Still, the clinic staff is concerned and wants Tina to reconsider.
This situation presents several ethical dilemmas and requires further consultation.
HEALTH POLICY AND ETHICS
Facilitating HIV Disclosure
Facilitating HIV Disclosure Across Diverse Settings: A Review Carla Makhlouf Obermeyer, DSc, Parijat Baijal, MA, and Elisabetta Pegurri, MSc
HIV status disclosure is cen-
tral to debates about HIV be-
cause of its potential for HIV
prevention and its links to pri-
vacy and confidentiality as hu-
man-rights issues.
Our review of the HIV-dis-
closure literature found that
few people keep their status
completely secret; disclosure
tends to be iterative and to be
higher in high-income coun-
tries; gender shapes disclosure
motivations and reactions; in-
voluntary disclosure and low
levels of partner disclosure
highlight the difficulties faced
by health workers; the mean-
ing and process of disclosure
differ across settings; stigmati-
zation increases fears of disclo-
sure; and the ethical dilemmas
resulting from competing
values concerning confidenti-
ality influence the extent to
which disclosure can be facil-
itated.
Our results suggest that
structural changes, including
making more services avail-
able, could facilitate HIV dis-
closure as much as individual
approaches and counseling
do. (Am J Public Health. 2011;
101:1011–1023. doi:10.2105/
AJPH.2010.300102
)
THE TOPIC OF HIV STATUS
disclosure is central to debates
about HIV, because of its links to confidentiality and privacy as hu- man-rights issues and its potential role in prevention.1 Disclosure is also considered a way to ‘‘open up’’ the HIV epidemic2 and hence is a crucial step toward ending stigma and discrimination against people living with HIV and AIDS (PLWHA). Recognizing its impor- tance, a number of researchers have reviewed the literature on disclosure by women,3 by men,4 or by parents to children.5 Others have reviewed what is known about the factors associated with disclosure, including the connec- tions among stigma, disclosure, and social support for PLWHA6; the links among disclosure, personal identity, and relationships7; and client and provider experiences with HIV partner counseling and referral.8 We sought to comple- ment existing reviews by including available information on low- and middle-income countries, which are poorly represented in all but 1 of the extant literature reviews, and by focusing on the role of health ser- vices and health care providers in HIV disclosure.
Recently, increased attention to transmission within serodiscordant couples has highlighted the po- tential role of disclosure as a way to encourage prevention.9 More- over, as countries scale up HIV
testing, counseling, and treatment, better evidence is needed to inform laws and policies, particularly re- garding how best to facilitate dis- closure while protecting medical confidentiality. Ongoing debates about mandatory disclosure to partners, health workers’ role in disclosing without patients’ consent, and the criminalization of HIV transmission raise important ques- tions about the place of disclosure in the fight against HIV and about the human-rights dimension of dis- closure policies. These debates also underscore the need for a careful review of the evidence on disclosure, an examination of in- dividual motivations and experi- ences around disclosure, an as- sessment of the role of health workers, and a better understand- ing of the societal determinants and consequences of disclosure in diverse settings.
METHODS
We conducted an electronic search of databases for journal articles and abstracts, focusing on HIV disclosure by adults living with HIV. Disclosure is defined here as the process of revealing a person’s HIV status, whether positive or negative. HIV status is usually disclosed voluntarily by the index person, but it can also be
revealed by others with or without the index person’s consent. We conducted the search in PubMed, PsychINFO, Social Sciences Cita- tion Index, and the regional data- bases of the World Health Orga- nization, including African Index Medicus, Eastern Mediterranean, Latin America, and Index Medicus for South-East Asia Region. The search used the keywords ‘‘disclo- s(ure), notif(ication)’’ and ‘‘HIV or AIDS.’’ The search retrieved a to- tal of 3463 titles published be- tween January 1997 and October 2008. After a scan of titles and abstracts, we retained 231 sources, including 15 abstracts from the 2008 International AIDS Confer- ence and 11 reviews or commen- taries.
We included sources in this re- view if they were original studies or literature reviews that had appeared in peer-reviewed publi- cations and if they reported on the levels or process of disclosure (to whom, when, and how), the de- terminants of and reasons for dis- closure, and the consequences of and incidents associated with dis- closure, such as life events, risk behavior, stigma, and discrimina- tion. Articles that focused exclu- sively on children’s HIV status were excluded, but we refer to children if their parents disclosed to them. We consulted the
June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1011
regional databases of the World Health Organization to find arti- cles about resource-limited set- tings. This review also drew on related reviews of the literature on HIV testing, stigma, treatment, and prevention by Obermeyer et al.10,11
Studies published after October 2008 were not included in the tabulations, although they may be cited in the discussion.
Table 1 presents the character- istics of the studies included in this review. Of the 231 articles in- cluded, more than two thirds (157 studies) came from high-income countries, mainly the United States. Most studies in low- and middle-income countries (49 out of 76) were from sub-Saharan Africa. A total of 98 studies were conducted among heterosexual adults of both sexes, 49 specifi- cally among women, and 35
among men who have sex with men, of which 31 were conducted in the United States.
Most of these studies (134 of 231) were based on quantitative surveys, and they provide fre- quencies on different aspects of disclosure. However, a consider- able number (74 studies) used qualitative methods, including in-depth interviews and focus- group discussions, and some (11 studies) combined questionn- aires with qualitative methods, often to explore the relational context of disclosure and how individuals coped with their HIV status.
LEVELS AND PATTERNS OF DISCLOSURE
Table 2 summarizes the results of studies on levels and patterns of
disclosure in general as well as disclosure to specific categories of people, such as sexual partners, family members, and friends. Overall, a striking finding of this review was that the majority of people disclosed their HIV status to someone. The levels of reported disclosure to anyone, as shown in Table 2, ranged mostly from about two thirds to about three fourths of respondents, with a few lower rates in sub-Saharan Africa. Three studies explicitly refered to involuntary disclosure, but the rest were concerned with voluntary disclosure exist, suggesting that most people willingly disclosed their HIV status.
The frequencies summarized in Table 2 indicate that gender dif- ferences in levels and patterns of disclosure exist. Women (as mothers and sisters) were more
frequently mentioned than were men as recipients of disclo- sure. Only a few studies have in- vestigated gender differences in HIV-positive disclosure rates to partners, and the findings have been mixed. Some found no gender differences, as in Ethio- pia103,104 and Mali,105 or higher disclosure rates by HIV-positive men (84%) than HIV-positive women (78%).71 Several found higher rates by women, as in Burkina Faso and Mali,105 South Africa,73 and the United States.17
Regardless of whether there were significant gender differences in disclosure rates, most studies docu- mented substantial gender differ- ences in the contexts of, barriers to, and outcomes of disclosure.
Other differences in disclosure frequency had to do with HIV status and to whom status was
TABLE 1—Characteristics of Studies on Disclosure of HIV Status, January 1997–October 2008
Populations Sampled
Countries
Adults, Both
Genders
Heterosexual
Men Only
Men Who Have
Sex With Men
Women Only,
Including PMTCT
Injection
Drug Users
Parents’ Disclosure
to Children Total
High income
United States 41 6 a
31 a
22 10 23 133
United Kingdom 4 . . . 2 1 . . . . . . 7
Western Europeb 7 . . . . . . . . . 1 2 10
Australia 4 . . . . . . . . . . . . . . . 4
Canada 1 . . . . . . 1 . . . . . . 2
Saudi Arabia 1 . . . . . . . . . . . . . . . 1
Low and middle income
Sub-Saharan Africa 25 . . . 1 20 . . . 3 49
Asia 12 1 . . . 5 2 . . . 20
Eastern Europe 1 . . . . . . . . . . . . . . . 1
Latin America, Caribbean 2 1 1 . . . . . . . . . 4
Total 98 8 35 49 13 28 231c
Note. PMTCT = prevention of mother-to-child transmission. Ellipses indicate that no studies were reviewed from that country or region. aMarks and Crepaz12 includes both homosexual and heterosexual men. bWestern Europe does not include the United Kingdom. cMedley et al.3 covers both Africa and Asia; Grinstead et al.13 covers both Africa and Latin America.
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TABLE 2—Studies (n = 96) on Levels and Patterns of HIV Status Disclosure, January 1997–October 2008
Population (Location) No. of Studies Disclosure to Anybody, % Disclosure to Sexual Partners, % Disclosure to Family, % Disclosure to Friends, %
United States (n = 46)
Adults14–23 10 82 56–81 (casual partners 25;
main partners 74)
70–87 (77–79 to mothers;
47–65 to fathers)
26–88
Parent to children 24–34,a,b
11 30–75 to parents;
32–62 to children
Men 35–36
2 53–60
Women37–45 9 96–100 68–92 60–84 (66–81 to mothers;
25–51 to fathers)
28–83
MSM12,17,46–55,c 12 80–97 54–80 (38-42
casual partners)
50 (37–67 to mothers;
23–47 to fathers)
85
Injection drug users 56,57
2 61–86
Europe (n = 10)
Adults (France, 58–60
Russian Federation, 61
Sweden, 62
United Kingdom 63–65
)8 85–97 88–97 53–77 57–79
Parent to children (Belgium66) 1 10 to children
Women (United Kingdom67) 1 81
Sub-Saharan Africa (n = 26)
Adults (Burkina Faso,68 Ethiopia,69 Kenya13,d,
Nigeria, 70
South Africa, 71–74
Uganda, 75
Tanzania, 76,77
Zambia 78
)12 22–96 28–91 (65 by men;
73 by women)
60–75 6–43
Parent to children (South Africa, 79
Uganda 80
) 2 44–50 e
Women (Burkina Faso, 81,82
Côte d’Ivoire, 83
Kenya,84,85 Malawi,86 South Africa,87–89
Tanzania90–92)
12 22–94
(46 HIV + ; 97 HIV–)
17–90 (64 HIV + ;
80 HIV–)
20–22 15
Asia (n = 8)
Adults (China,93 India94–96,f) 4 (35 involuntary;
65 voluntary)
70 (100 by women;
65 by men)
78 7
Men (Taiwan 97
) 1 72
Women (India, 98
Thailand 99
) 2 37–84 34 family or friends 34 family or friends
Injection drug users (Vietnam 100
) 1 0 (no respondents
disclosed)e
Caribbean (n = 1)
Adults (French Antilles/Guyana101) 1 70 85 56
Reviews (n = 5)
Adults 7,8,102
3 68–97 22–86 (70-92 LIC; 44–67 HIC) 61–86
Men 4
1 67–88
Women 3
1 17–86
Note. HIC = high-income countries; LIC = low-income countries; MSM = men who have sex with men. For multiple studies on a country or population, the table presents the range of disclosure rates (minimum and maximum) reported in the studies. aEmlet also reported that adults aged 50 years or older disclosed their HIV status to those in their social networks less frequently than younger adults did.34 b Two statistics are included: the percentage of parents who reported disclosing to children and the percentage of children who were told by their parents.
c The study by Marks and Crepaz of HIV-positive men (homosexual, bisexual, and heterosexual) is counted under MSM, who represent the majority of the study sample.
12 Similarly, the Weinhardt
et al. study of MSM, women, and heterosexual men is counted under MSM, who represent the majority of the study sample. 17
dGrinstead et al. covers Kenya, Tanzania, and Trinidad, but it is listed under Africa and counted once under Kenya.13 eIncludes data from studies with fewer than 25 participants. fIn Mulye et al., patients’ spouses (23%) and relatives (2%–12%) knew patients’ HIV status after it was disclosed to patients in their presence.94
June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1013
HEALTH POLICY AND ETHICSdisclosed. Studies that included information on HIV status almost always reported that disclosure was lower when HIV status was positive. Disclosure to relatives was higher than was disclosure to friends. Partner disclosure varied greatly, but it was generally lower with casual partners than it was with steady partners.
Some studies explored sociode- mographic factors that influence disclosure, principally residence and ethnicity. For example, re- search in South Africa found higher disclosure rates in urban settings than in rural settings.106 In the United Kingdom, studies found that African men were less likely than were White men to tell their partners about their HIV infection (66% vs 86%, respectively63) and were less likely than were White men to disclose to relatives, part- ners, or work colleagues.64 Simi- larly, a study in French Antilles and French Guyana found that non- French citizens were less likely to disclose to a steady partner than were French citizens,101 and studies in the United States found that African Americans disclosed less often than did European Americans.34,107
Such results suggest that indi- viduals from racial/ethnic minor- ity groups have greater concerns about stigmatization if they dis- close their status. Socioeconomic factors and access to resources also appear to play an important role. In the South African study mentioned earlier,106 urban com- munities with higher disclosure rates had more institutional sources of support, including nongovern- mental organizations and hospitals. Research from Nigeria and among migrants from Africa in Sweden
revealed that more educated re- spondents disclosed more often than did their less educated coun- terparts.62,70 Similarly, a study from India found a higher rate of disclosure to partners by literate respondents compared with illiter- ate respondents (86% vs 44%, re- spectively96). Conversely, low-wage employment and economic vul- nerability reduced disclosure by Tanzanian women,91 Dominican male sex workers,108 and Canadian female sex workers.109 Such results suggest that economic and social disadvantage make disclosure more difficult. This finding is consistent with the frequencies in Table 2, which tended to be higher in higher-income countries (the United States and Europe), whereas levels in developing countries of Africa, Asia, and the Caribbean showed much greater variation.
VARIATIONS IN THE CONCEPT AND PROCESS OF DISCLOSURE
We found that different pro- cesses have been subsumed under the concept of disclosure, under- scoring the need for researchers to clarify more consistently how dis- closure is measured. Quantitative studies have shown large differ- ences in disclosure frequencies depending on what information was given and by whom, whether HIV status was positive or nega- tive, and whether that status was disclosed to 1 or more persons, to anyone, to sexual partners, to friends, or to family. Qualitative studies, on the other hand, have raised questions about the multi- ple dimensions and meanings of disclosure.
Disclosure is not always volun- tary, an issue raised primarily (though not exclusively) in studies conducted outside Europe and the United States. Varga et al.88
reported that in South Africa, 32% of disclosure to family members was involuntary. Similarly, in India, 35% of male and female respon- dents reported that their HIV status had been disclosed without con- sent,95 and relatives sometimes found out a person’s HIV status when it was disclosed in their pres- ence by someone else.94
Research has found large vari- ations in the amount of informa- tion that people reveal. For exam- ple, only about half of respondents in a study from India disclosed the exact nature of their illness to those around them; others pre- ferred partial disclosure or re- ferred to a less stigmatizing illness, such as fever, heart problems, or general illness.95 A US study found that 54% of respondents reported having received full disclosure.15
Parents tended to disclose partially to their young children and more fully to their adolescent children.110
Rather than being a one-time event, as it is sometimes assumed to be, disclosure is often a gradual process of disclosing to an in- creasing number of others in one’s networks over time. For example, a study among homosexual and bisexual men in the United King- dom found that immediately after diagnosis, respondents were more likely to opt for nondisclosure, but later they used disclosure as a mechanism for coping with the disease.111 In a study in South Africa, many HIV-positive men and women waited substantial periods of time before disclosing to their
partners, including 15% who waited more than a year.71 Among a sample of gay Latino men in the United States, half disclosed to someone on the day they found out, and another 15% disclosed within a few days, but about 20% did not tell anyone for 1 year or more.54
Among a sample of HIV-positive pregnant women in Tanzania, dis- closure to a partner increased from 22% within 2 months of diagnosis to 40% after nearly 4 years.91
Other studies among heterosexual men and women, young people, and attendees of an outpatient HIV clinic found that disclosure had a positive association with the length of time since diagno- sis15,20,34,65,112 and with disease progression.19,74,113
Some qualitative studies ex- plored differences among those who disclose and those who do not, such as the criteria motivating decisions, the process of commu- nication, and coping styles. The results of these studies tended to converge around certain key points: selective disclosure is the most frequent strategy, a minority of people fall in the ‘‘never dis- close’’ or ‘‘always disclose’’ cate- gories, disclosure decisions have to be made repeatedly, and dis- closure decisions change over time.7,41,114---117 Other qualitative studies have provided insight into the process whereby individuals weigh the risks (fear of abandon- ment and discrimination) and ben- efits (need for support) of disclosure before making a decision.118 These studies underscore the importance of relationships, trust, emotions, perceptions of self, and perceptions of HIV status. Most of these studies were conducted in the United
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HEALTH POLICY AND ETHICSStates, tended to emphasize the psychological aspects of disclosure, and focused on individual factors and processes, but some considered the social context of disclosure in Africa,77,106 and others analyzed the connections between the choices made by individuals and the ethical debates and social poli- cies around HIV disclosure.119
ATTITUDES, REACTIONS, AND BEHAVIORS AFTER DISCLOSURE
Much has been written about the stigma associated with disclo- sure of HIV-positive status. Fear of stigma is thought to discourage disclosure, and disclosure has of- ten been considered a proxy measure for stigma, because peo- ple living with HIV are more likely to disclose in low-stigma contexts, where they expect fewer nega- tive consequences.120 Conversely, there is a vast literature on dis- crimination (sometimes defined as enacted stigma) faced by those whose HIV status is disclosed by others, often without their consent. Women are thought to face spe- cial barriers related to fears of stigma, as documented in numerous sources.3,41,42,76,84,90,92,99,115,121---123
Research has drawn attention to negative consequences of disclosure, such as disrupted relationships with families and communities124,125; isolation, criticism, and ostracism by family members68,126; abuse, violence, divorce, or separation from partners; and rejection by friends.43,84,89,127
However, it has been difficult to document the causal link between HIV disclosure and adverse events, in part because baseline
rates of negative experiences such as violence are often unknown, and because HIV-positive individ- uals who eventually face negative reactions often come from disad- vantaged groups that are already at high risk for violence.128 For example, although some evidence suggests that women with risk fac- tors such as a history of drug use are more likely to experience neg- ative social and physical conse- quences when their infection be- comes known,43,129 violence was not significantly higher among a sample of HIV-positive women compared with demographically and behaviorally similar HIV-negative women in the United States.130
Nevertheless, evidence indicates that fear of stigma, discrimination, and violence decreases willingness to disclose HIV status in many settings.3,115,121,125,131---138
Reviews of the literature have shown that reactions to disclosure ranged from negative to neutral to supportive, and that negative re- actions from family, friends, em- ployers, and the community were relatively low––about 3% to 15% of cases.3,8,43,96,129 Studies in di- verse contexts have documented high levels of supportive reactions to HIV-positive persons.68,119,139,140
For example, nearly half of the HIV- positive women in the often-cited study from Tanzania90 reported that their partners were supportive, as did 73% of women in a Kenyan study.84 Studies in South Africa found that reactions to disclosure included trust, support, and under- standing,74 and that 19% of disclo- sures resulted in kindness and 70% in no change of attitude.89 A posi- tive correlation between disclosure and social support has been
documented in a meta-analysis6 as well as in studies from contexts as varied as Greece, Kenya, South Africa, Tanzania, Trinidad, and the United States.13,18,44,71,90,139,141
However, these results must be interpreted in light of differences in types of populations and levels of disclosure. Reactions of support are more likely where HIV-positive in- dividuals are not seen as responsi- ble for getting HIV, whereas those seen as having been infected be- cause of their own behavior may face negative reactions. In addition, low disclosure and high support may indicate that individuals are careful not to disclose their HIV status if they expect negative re- actions.92
Studies have also examined the behavioral outcomes of disclosure, including its possible effect on safer sex. Disclosure of HIV-posi- tive status to partners has been associated with safer sexual prac- tices in the United States,17,21,142,143
France,60 and Cameroon.144 Simi- larly, a study in South Africa found that condom use was higher (57%) among women who disclosed their status than it was among those who did not (38%).73 Unprotected sex was also more frequent among groups of men who have sex with men, heterosexual men, and women who did not disclose than it was among those in each cate- gory who did.145 Other risk be- haviors, such as having multiple sexual partners, have also been associated with nondisclosure, as documented in a review.4 Studies among injection drug users and men who have sex with men in the United States revealed that sexual risk behaviors were highest among inconsistent disclosers, followed by
nondisclosers; consistent disclosers reported fewer sexual risk behav- iors, although the evidence was not always unequivocal.51,56
Indeed, not all studies have found an association between disclosure and safer behav- iors.12,22,50,55,146,147 The difficulties of documenting effects and estab- lishing the direction of causality are common to studies of prevention in general, and we found a literature review on disclosure that reported contradictory results, with positive effects sometimes limited to a sub- group of participants, such as HIV- negative partners or nonprimary partners.148 These inconsistent re- sults may be partly attributable to confounding factors such as alcohol or drug consumption, which in- crease risk-taking regardless of dis- closure. In addition, because safer sex requires explicit discussions be- yond simply disclosing HIV sta- tus,35 the effect of disclosure needs to be considered in relation to other behaviors and attitudes.
DISCLOSURE, HEALTH SERVICES, AND HEALTH PROVIDERS
The influence of health services on disclosure has not been sys- tematically examined, but we can piece together information on 3 interrelated questions: first, whether staff at health facilities contribute to reducing stigma and discrimination, thus normalizing HIV; second, whether they en- courage disclosure by HIV-posi- tive persons and promote testing and referral of partners and family members; and third, whether they are prepared to counsel and sup- port those who are tested, to
June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1015
HEALTH POLICY AND ETHICSfacilitate voluntary disclosure and support.
The extent to which health fa- cilities promote disclosure de- pends in part on whether they provide a supportive context for the difficult experience of being HIV positive. Evidence suggests that health facilities sometimes fall short in this regard. Discrimination against HIV-positive individuals was reported to occur when health workers treat them differently, use excessive precautions, or withhold appropriate care.149---151
Fears of being treated poorly were reported more frequently by women than men. In Australian health facilities, more women than men reported fearing discrimina- tion in the form of avoidance of treatment, extra precautions, and confidentiality problems, and in Kenyan maternity wards, health workers expressed anxiety when caring for women who may have been HIV positive and admitted that they used ‘‘extra care’’ in han- dling them; such situations contrib- uted to delays and suboptimal care, such as reluctance to take HIV tests or to give birth at health facilities.152---154 These studies also reported that stigma and discrimi- nation are declining.
Another indication of how dis- closure is linked to health services comes from studies that examined its connection with adherence to antiretroviral therapy. Initiatives to provide antiretroviral therapy sometimes require that patients disclose to a supportive individual in their network, on the basis of a large body of evidence indicating that disclosure facilitates initiation of and adherence to antiretro- viral therapy, whereas worries
about disclosure contribute to se- crecy and missed medica- tions.88,155---160 Most studies on the subject focus on adherence, and more information is needed about the process of disclosure when it is a condition for antiretroviral therapy.
Health facilities are often ill equipped to reassure PLWHA that they will be treated well, and health workers may not have the training to counsel patients or the competence to judge how to dis- close patients’ HIV status or to whom it should be disclosed.161,162
For example, a study from Vietnam found that health workers felt so uncomfortable discussing HIV with patients that they avoided giving women their HIV test results di- rectly; instead, they relied on the official notification system, which informs local district officials about the HIV status of people living in their catchment area without pa- tients’ consent.163 This nonconfi- dential process sometimes has seri- ous social, economic, and health consequences for HIV-positive women and their children.
In addition, health workers sometimes communicate test re- sults to individuals other than HIV-positive patients, as docu- mented in numerous settings. For example, in a comparative study in India, Indonesia, the Philippines, and Thailand, 34% of HIV-posi- tive respondents reported that health care workers had revealed their HIV status to someone else without their consent.151 One In- dian study found that 61% of women reported that family mem- bers were given test results without the patient being consulted164; an- other found that 35% of
respondents (male and female) reported that their HIV status was disclosed to friends or relatives without their consent (in 75% of cases the disclosure was made by health workers).95 Similarly, a study in China found that health pro- viders often informed family mem- bers of an HIV diagnosis before informing the patient.165 One study suggested that privacy breaches by health workers in India were more frequent for female clients and in the private sector.161
Involuntary disclosure by health workers has been attrib- uted in part to circumstances at health facilities, which often lack private spaces and where it is difficult to manage patient files without compromising confidenti- ality. More importantly, however, the issue of involuntary disclosure by health workers highlights the difficulty of balancing medical confidentiality with the need to facilitate disclosure to those around an HIV-positive person. Health workers are supposed to encourage testing of partners and family members and to promote disclosure to mobilize support for treatment and prevention, but these objectives are often incom- patible with guaranteeing absolute patient confidentiality.
The difficulty of promoting partner disclosure is manifested in the low rates of partner refer- ral.21,82,90,166 A review of 15 studies from sub-Saharan Africa and Asia found that partner disclosure by HIV-positive women ranged from 17% to 80%, with lower rates generally reported by women tested during antenatal care, com- pared with women undergoing voluntary HIV testing and
counseling.3 This finding suggests that the mode of testing makes a difference to HIV disclosure, but also that women’s vulnerability during pregnancy increases their reluctance to disclose.11 For exam- ple, only 23% of partners of HIV- positive women attending a pro- gram on prevention of mother-to- child transmission in Côte d’Ivoire were subsequently tested for HIV.83 Only 17% of HIV-positive pregnant women in a study in Tanzania reported their test results to their partners.92 The fact that 69% of partners who agreed to test were seropositive under- scores the missed opportunity for prevention.
Some studies suggest that HIV- positive health workers find dis- closure difficult because they worry that they may be stigma- tized or that a positive diagnosis will mean they have failed as a role model. These fears may hamper their own ability to be tested, to disclose, and to promote testing, as documented among health workers in Kenya162 and Malawi.167
Despite these difficulties, some studies have shown that health workers can help people cope with disclosure and its aftermath. In Sweden, contact with counselors increased the probability of disclo- sure by immigrant African families, filling a gap in their disrupted social network.62 In a study in China, good relations between patients and providers led to positive health outcomes after disclosure, particu- larly when families were unsup- portive because of HIV-related stigma.165 More evidence is needed to demonstrate how health workers can support HIV disclosure.
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HEALTH POLICY AND ETHICSSOCIAL CONTEXT OF DISCLOSURE
Although frequencies and sta- tistical associations provide useful information about levels of dis- closure and their possible deter- minants, they also raise questions about differences in the meaning of disclosure, the consequences of disclosure, and the roles of health providers in different sociocultural settings. The evidence suggests that social context influences key dimensions of disclosure, in par- ticular the notion of support, the role of the family, and the values surrounding disclosure.
Qualitative studies that examine individual experiences have shown that disclosure is closely related to expectations of support. These studies have also shown that disclosure is higher when in- dividuals hope to receive help from those around them, and it is lower when they expect blame and discrimination. As a lengthy, potentially fatal illness, HIV infec- tion represents a possible rupture of the rules of reciprocity that are the basis of social interactions, and a potential drain on resources for those around the ill person.168
That is why, in diverse contexts–– such as the Dominican Republic, Malawi, and Tanzania––individuals thinking about disclosure try to predict how others will react, based on the disclosers’ perceived responsibility for the infection and on the quality of their relationships with those around them.76,77,86,133
Emotional support is important everywhere, but in low-resource settings where services are defi- cient and individuals need mate- rial support from their families and
communities, there are stronger in- centives to disclose. At the same time, however, there are also more risks in disclosing in these settings, precisely because PLWHA are explicitly or implicitly making im- mediate or future demands on those around them. Hence, a sub- tle difference can be discerned when comparing both qualitative and quantitative studies in re- source-rich settings to those in re- source-poor settings. Respondents in resource-rich settings, such as the United States and France, tended to describe disclosure as a way to obtain psychological sup- port and relief from the stress of harboring a secret,18,58,102 whereas those in resource-poor settings, such as China, India, Kenya, Nigeria, and South Africa, mentioned ex- pectations of financial and social support,70,72,169 emotional and ma- terial support,95 and help with medical care and counseling.93
Social context also shapes the extent to which disclosure deci- sions are made by others beyond the individual, as documented in both quantitative and qualitative research. In settings where ade- quate health services and social services are lacking and kinship bonds continue to be strong, fam- ilies and communities may be seen as having responsibilities toward ill individuals and therefore as having a right to be informed about an HIV-positive result.93,125,147 If, as in India, close involvement of the family is thought to be in the best interest of the patient, then a health worker’s breach of confi- dence can be seen as choosing to conform to local social norms rather than to national stan- dards.161 In many settings,
physicians are thought to have the authority to decide on disclosure, as documented in a comparative study in Asia and the Middle East, where 80% of Saudi physicians reported that they would disclose a patient’s HIV status to their family without his or her consent.170 Practitioners often think they know better than poor or uneducated clients, partic- ularly women, and they involve families as a way of recognizing hierarchies within families that lead some members to make health de- cisions on behalf of others.95,171 A qualitative study from Lesotho found that when health workers kept patients’ HIV status strictly confidential, family caregivers sometimes lacked crucial informa- tion needed to secure appropriate medical care.172
Thus, the social context of dis- closure may define 2 competing sets of values: those designed to respect patients’ privacy and con- fidentiality, and those meant to assist and protect those around the patient. Health workers may be caught between these conflicting values and may feel that they should provide information to family members, either to rally support for an HIV-positive per- son or because they feel some responsibility to those around that person if patients themselves re- fuse to disclose.173
The legal context also influ- ences the extent of disclosure and its consequences. A number of countries have enacted laws or formulated policies to encourage disclosure or to mandate disclo- sure to partners. This has hap- pened in the United States,174,175
Canada,176 Singapore,177 and countries of west and central
Africa.178,179 In addition, manda- tory premarital HIV testing and so- called ‘‘beneficial disclosure,’’ which allows health workers to disclose patients’ status without their con- sent, are being discussed in African countries.180,181 Elsewhere, as in some countries of the Middle East and north Africa, the majority of HIV testing appears to be manda- tory, with no guidance on disclo- sure.182 These situations raise a number of ethical and legal issues that are beyond the scope of this article and about which much has been written. Here, it is important to note that the legal context has an impact on institutional support for disclosure at health facilities in the form of guidelines, protocols, pro- grams, and other resources that enable health workers to help around disclosure. The legal con- text also affects individuals’ per- ceived incentives and motivations for disclosure.
As a process of sharing infor- mation about a sensitive topic, HIV status disclosure takes on different meanings in different contexts. The absence of exact equivalents for the term ‘‘disclo- sure’’ in languages other than English testifies to the different connotations it can have (e.g., re- vealing a secret, admitting guilt, or simply stating a medical fact). These complex meanings are linked to moral and ethical valua- tions. The ethical and moral di- mensions of deeply personal choices around sex and dis- closure have been highlighted in a thoughtful US study,119 and com- parable analyses are sorely needed to better understand the reality of moral challenges and how they are addressed in other settings. It has
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HEALTH POLICY AND ETHICSbeen claimed that a policy focused on individual rights, confidentiality, and professional counseling dis- tances the family and community from their role in providing HIV support173 and may be incompati- ble with traditional notions of col- lective family responsibility.165
The tension between the ethics of individualism and communal- ism is beyond the scope of this article, but it is clear that the difficulties of disclosure reflect the potential conflict between com- peting ethical values. Some au- thors argue that the right of sexual partners to be informed and pro- tected is as important as the pri- vacy of PLWHA183 and that when respect for confidentiality increases the risks to third parties, then rou- tine third-party disclosure may be the lesser of the evils.184 Managing the value conflict underlying rec- ommendations about disclosure rep- resents an important challenge for all the actors involved––individual partners, health workers, and policymakers.41
CONCLUSIONS
The studies on disclosure that we have reviewed here show that, first, although disclosure is diffi- cult, few people keep their HIV status completely secret. Levels of disclosure are generally high, but lower levels are documented among certain populations, partic- ularly women tested during pre- natal care. This finding suggests that attention should be directed to these groups to better under- stand circumstances that favor or hinder disclosure. Second, not all studies on disclosure disaggregate results by respondents’ HIV status;
but this information is essential, because HIV-positive status is consistently linked to lower dis- closure rates, a point that under- scores the prevention implications of lower disclosure among those more likely to transmit the infec- tion. Third, disclosure is more uniformly high in the high-income countries of Europe and the United States, and frequency var- iations are wider in low- and mid- dle-income countries. These dif- ferences likely reflect differential availability of and access to re- sources to deal with HIV and its consequences. Fourth, women appear to disclose, and to receive disclosure, more frequently than do men, but married and preg- nant women encounter special difficulties with partner disclo- sure. Further research should seek to identify those specific gender-related factors that may facilitate disclosure and mitigate its negative consequences.
Analyses of disclosure as a pro- cess show that decisions regarding what information to disclose, to whom, and when are iterative and selective, such that partial and gradual disclosure to a growing number of people is more com- mon than is one-time full disclo- sure to all; also, disclosure to sexual partners is often more dif- ficult than to others. The implica- tions of these results are clear: partner disclosure deserves special attention, given its consequences for transmission; initiatives to support disclosure need to be on- going, rather than focusing on a single point in time; and coun- seling cannot be the same at all stages but should consider evolving motivations and consequences.
A main goal of this review was to assess the extent to which health facilities and health work- ers facilitated disclosure. We found that health worker facilita- tion of disclosure was limited by the potential for discrimination at health facilities, the limited coun- seling abilities of many health workers, and health workers’ own fears and concerns regarding HIV. The relatively high frequencies of health workers disclosing peo- ple’s HIV status without their consent and the low levels of partner disclosure, particularly in less developed countries, testify to the difficult balance between en- couraging disclosure and keeping HIV status confidential. Health workers on the front lines need support as they negotiate these complicated situations.
At the same time, however, a number of reports indicate that health workers can help with dis- closure, provided that they are supported in multiple ways. There have been calls to give nurses a role in assisting women with their disclosure decisions,115 to support community- or home-based HIV care programs,185 to facilitate couple counseling, and to promote disclosure while reducing the risk of discrimination and violence against women. The successes reported by some programs suggest promis- ing possibilities, such as strength- ening health workers’ communica- tion skills and increasing their perceived self-efficacy, providing ongoing support for women working through disclosure deci- sions, and mediating disclosure through counselors in the clinic or through friends or family mem- bers outside the clinic.186 In
Rwanda, a package of strategies–– including systematic couple coun- seling and community-based cam- paigns––seems to have overcome some barriers to disclosure and has increased the uptake of HIV testing by male partners of pregnant women from 7% in 1999 to 84% in 2009.187 Further evidence is needed to identify the optimal combination of interventions that would support health workers’ ef- forts to facilitate disclosure while ensuring that disclosure is used as the basis for mobilizing support for those who need it.
We also found differences in the meaning of disclosure across settings. Although emotional fac- tors related to relationships and trust influenced motivations to disclose everywhere, respon- dents from resource-rich settings put a somewhat greater emphasis on psychological relief, whereas those in resource-poor settings more often referred to needs for material support and caregiving as a reason for disclosing. These mo- tivations may change with in- creased access to free treatment, however, as individuals have less need to disclose to their families to obtain material support and have greater access to support groups. Thus, the meaning of disclosure may shift from divulging a secret to sharing a new identity built on serostatus.
The ethical dilemmas resulting from competing values––the con- fidentiality of patient informa- tion versus the need to inform and protect others around the PLWHA––are especially marked in contexts in which family and community remain important structures and in which relatives
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HEALTH POLICY AND ETHICSand community members are expected to play a major role in medical decision-making, care giving, and material support for PLWHA. Cross-cultural compari- sons of what constitutes commu- nities and of the values attached to consent and confidentiality show a great deal of variation.188---190 A better understanding of how confi- dentiality is perceived in different cultural contexts can help identify areas of flexibility that can be used to facilitate disclosure where appropriate. Support for disclosure cannot wait for a resolution of the ethical dilemmas around confi- dentiality, but the debates around disclosure and the policies that are formulated to promote it should, at a minimum, be in- formed by evidence on how in- dividuals in the field address these situations.
Research also confirms the re- ciprocal connections among stigma, social support, and disclo- sure. Expectations of support are a crucial factor in the decisions of PLWHA to disclose, and reactions to these disclosures are, in part, influenced by the sacrifices that may be required from those around them. Stigmatization in- creases these potential sacrifices, and support services reduce them. Thus, fears around disclosure re- flect available levels of resources and social support. Taken to- gether, these results suggest that structural changes––including making more services available to support PLWHA, their families, and communities––could be as important as individual ap- proaches or the provision of counseling. j
About the Authors Carla Makhlouf Obermeyer is with the Department of HIV/AIDS, World Health Organization, Geneva, Switzerland. Parijat Baijal is with the Global Fund to Fight AIDS, Tuberculosis and Malaria, Geneva, Switzerland. Elisabetta Pegurri is with UNAIDS, Geneva, Switzerland.
Correspondence should be sent to Carla Makhlouf Obermeyer, Department of HIV/AIDS, World Health Organization, 20 Ave Appia, 1211 Geneva, Switzerland (e-mail: obermeyerc@who.int). Reprints can be ordered at http://www.ajph.org by clicking the ‘‘Reprints/Eprints’’ button.
This article was accepted December 9, 2010.
Note. The views expressed here are those of the authors and do not represent those of the World Health Organization; the Global Fund to Fight AIDS, Tuberculosis and Malaria; or UNAIDS.
Contributors C. M. Obermeyer conceptualized the study, coordinated the analyses, and led the writing of the article. P. Baijal and E. Pegurri conducted the searches, summa- rized the results, and participated in writing the article.
Human Participant Protection No protocol approval was necessary be- cause the study did not involve any human research participants.
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148. Simoni JM, Pantalone DW. Secrets and safety in the age of AIDS: does HIV disclosure lead to safer sex? Top HIV Med. 2004;12(4):109---118.
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By Amy D. Leonard, Christine
M. Markham, Thanh Bui,
Ross Shegog and Mary E. Paul
Amy D. Leonard is a research coordinator, and Mary E. Paul is
associate professor, both in the Depart- ment of Allergy and Immunology, Texas Children’s Hospital,
Baylor College of Medicine, Houston.
Christine M. Markham and Ross
Shegog are assistant professors, and Thanh
Bui is a doctoral stu- dent, all at the Center
for Health Promo- tion and Prevention
Research, School of Public Health,
University of Texas Health Science Center
at Houston.
110 Perspectives on Sexual and Reproductive Health
Lowering the Risk of Secondary HIV Transmission: Insights From HIV-Positive Youth and Health Care Providers
CONTEXT: Both perinatally and behaviorally infected HIV-positive youth engage in sexually risky behaviors, and a better understanding of the perceptions of these youth and of health care providers regarding disclosure of HIV status and risk reduction would aid in the development of behavioral interventions for such youth.
METHODS: In spring 2007, some 20 HIV-positive inner-city youth (aged 13–24) and 15 health care providers who work with HIV-infected youth participated in in-depth, semistructured interviews. Youth were recruited at an HIV clinic, AIDS clinics and an AIDS service organization, and had received care from participating
providers.
Detailed contextual and thematic discourse analysis was performed on interview transcriptions.RESULTS: Eighteen of the 20 youth had disclosed their HIV status to another individual at least once. Eleven reported being sexually active, and three of these had been perinatally infected. Qualitative analysis revealed four subthemes related to disclosure: stigma and emotions, trust issues, reasons for disclosing and strategies for addressing disclo- sure. Five subthemes were identifi ed related to sexual risk reduction: dating challenges, attitudes toward condom use, self-effi cacy for condom use negotiation, pregnancy attitudes and sexual risk reduction strategies. Providers reported that access to more engaging and interactive educational tools within the clinic setting could enhance their risk reduction counseling with HIV-positive youth.
CONCLUSIONS: HIV-positive youth experience multiple challenges regarding disclosure and sexual risk reduction, and health care providers need innovative tools that can be used in clinic settings to improve adolescents’ skills in reducing risky sexual behavior.
Perspectives on Sexual and Reproductive Health, 2010, 42(2):110–116, doi: 10.1363/4211010
Improvements in the medical management of HIV have reduced the rate of perinatal transmission from mothers to their children, and 91% of U.S. children with perina- tally acquired HIV survive into adolescence and young adulthood.1 Nevertheless, youth continue to acquire HIV through risky behaviors such as unprotected sex and injection-drug use. The Centers for Disease Control and Prevention (CDC) estimates that at least half of all new HIV infections in the United States are among people younger than 25 and are largely due to these two risk behaviors.1 The extended survival of perinatally infected youth, com- bined with rising numbers of behaviorally infected youth, presents health care providers with the critical challenge of providing HIV-positive youth with information and meth- ods to prevent secondary HIV transmission.
Successes in HIV medical management have not been matched by successes in behavioral interventions to cur- tail risky behaviors among HIV-positive youth. Despite researchers’ advanced understanding of the pathophysiol- ogy and transmission of HIV, as well as the use of clinic- based education relating to risk reduction, the translation of relevant health messages into behavioral practice remains fl awed, as HIV-positive youth continue to engage in risky behaviors.2–6 In one study, 43% of HIV-positive youth reported not using a condom at last intercourse.2 A small
number of behavioral interventions for HIV-positive youth have been rigorously evaluated, but the assessment of their effectiveness has been hampered by poor attendance.5,7,8
To fully understand the challenges of preventing sec- ondary HIV transmission among youth, the experiences of both HIV-positive youth and health care providers need to be explored. Although quantitative studies9–11 have exam- ined the attitudes and perceptions of such youth toward sexual risk reduction and disclosure of their HIV status, qualitative data to inform the development of interventions have been limited.12,13 Furthermore, little is known about providers’ attitudes toward risk reduction and
disclosure
among HIV-positive youth.14 The present study explores the views of health care providers and HIV-positive youth about disclosure and sexual risk reduction, and suggests how prevention efforts and clinical behavioral interven- tions might be strengthened.METHODS This study was conducted in spring 2007 as a forma- tive component for the development and evaluation of a computer-based clinical intervention for HIV-positive youth. Purposive sampling was used to recruit youth participants at a pediatric HIV clinic, AIDS clinics and a local AIDS service organization. Case managers referred
Volume 42, Number 2, June 2010 111
potential participants to the study coordinator. To be eli- gible, participants had to be HIV-positive and aged 13–24 (the age-group defi ned as adolescents by the CDC15). Prior to the interview, informed consent was obtained from par- ents and adolescents. For participants who were younger than 18 and not emancipated, their assent and consent from one parent were obtained. Youth completed a survey that assessed gender, age, race or ethnicity, HIV status and mode of infection. Health care providers were recruited by personal contact; to be eligible, providers had to have more than a year of pediatric HIV-positive care experience.
In-depth interviews were conducted with the youth at the clinic or agency from which they were recruited, and with the providers in private offi ces at their hospital or clinic. All interviews were recorded and transcribed ver- batim; each interview lasted approximately one hour, and the youth received a $10 gift certifi cate at its completion. The interviews followed a semistructured format with open-ended probes, and focused on the two principal themes of interest: disclosure of HIV status and sexual risk reduction. The interview guide was developed by a panel consisting of a pediatric HIV specialist, a health educa- tor experienced with HIV-positive youth and behavioral scientists experienced in adolescent HIV prevention. To enhance rapport with the youth, interviewers progressed from less sensitive to more sensitive topics. Regardless of personal experiences, respondents were asked to report any thoughts or opinions they had about HIV disclosure or sexual risk reduction.
Detailed contextual and thematic discourse analysis was performed with the aid of ATLAS.ti, version 5.2.20, software. Transcriptions were entered into the computer program, and the text was analyzed using constant com- parative and thematic analysis. For each transcription, at least two investigators independently performed the coding and categorized codes into themes and sub- themes, which were then compared and contrasted for interrater reliability. Results of youth and provider groups were compared to evaluate trends that emerged from the data.
RESULTS Thirty-fi ve interviews were conducted: 20 with HIV- positive youth (fi ve males, 15 females)* and 15 with health care providers. Twelve youth (four males, eight females) had been infected perinatally, and eight (one male, seven females) behaviorally. Participants were 17 years old, on average; 16 identifi ed themselves as black, three as Latino and one as white. The provider sample consisted of three pediatricians, two obstetrician-gynecologists, three nurse practitioners, one nurse and six social workers. Although it was not an inclusion criterion, all youth participants had received medical care from the health care providers tak- ing part in this research.
Eighteen of the 20 youth had disclosed their HIV status to another individual at least once, though not necessarily to a sexual partner. Of the 11 who reported being sexually
active, three had been perinatally infected. Responses from both youth and health care providers revealed a number of common subthemes regarding the principal themes of disclosure and sexual risk reduction.
Disclosure �Stigma and emotions. When asked “What is the most diffi cult thing about living with HIV?” more than a third of the youth responded that it was not being able to disclose their status. A 19-year-old behaviorally infected black male stated that the biggest burden related to HIV was “keeping it a secret, because the people I hang around talk about [HIV] a lot.” Some youth said keeping their HIV status a secret was a barrier to obtaining the emotional support they desperately desired. Expressing the feelings of several youth, one adolescent commented:
“I was so scared. I was like, worried, and I was kind of nervous. I didn’t know what to say, how exactly to say it and how to put it. … I got mixed feelings that day [I dis- closed]. I swear I thought I was sick. I was just, like, oh my God.”—18-year-old perinatally infected Hispanic female
Health care providers also believed that nondisclosure was the most diffi cult thing for youth living with HIV. Providers noted that many youth associated nondisclosure with societal stigma. A pediatrician explained:
“Because of stigma, they don’t get much community support like other chronic diseases. [HIV is] not like cancer, [where] at the convenience store there’s a picture of the child and they’re collecting donations.”
In addition, some providers attributed nondisclosure to an adolescent’s acceptance or internalizing of the disease. As one pediatrician stated, “I think it becomes really diffi cult for many of them to adjust to that transition of ‘I’m a teen, I am HIV-positive,’ and that whole societal piece of the [stigma].”
Both youth and providers said that fear of a negative reaction prevented youth from disclosing their HIV sta- tus. One 15-year-old perinatally infected black female recalled hearing, “Oh, don’t touch this person, because you are going to have AIDS,” or “Don’t touch that, because you’re going to catch AIDS and die.” Trepidation over possible gossip or rejection was cited by the major- ity of youth and providers as barriers to disclosure. One pediatrician reported, “There’s that question of, ‘If I tell him now, will he leave?’ And for [youth] who’ve tried, they have found that that is exactly what happened.” Another 15-year-old perinatally infected black female explained her fear of gossip: “Because people are [stu- pid]. They talk too much. … Like, if I tell my friend, my friend goes to tell her friend, and she tells her friends, [and] it gets around.”
*The gender distribution of our sample refl ects that of HIV-infected indi-
viduals of this age in the local study area (source: Houston Department
of Health and Human Services, Bureau of Epidemiology, AIDS: summary
of Houston/Harris County cases, 2009, health/HIV-STD/1stQRT2009 >, accessed July 29, 2009). Lowering Secondary HIV Transmission Among HIV-Positive Youth
112 Perspectives on Sexual and Reproductive Health
•Trust issues. Health care providers reported emphasizing
trust issues when discussing disclosure with their patients.
A nurse practitioner explained:
“They really have to feel like they trust the person with
that information. … But I advise them not to tell some-
body that might turn around and try to hurt them, …
because it’s a big piece of information to give anybody.”
Youth also emphasized the importance of trusting a
person before disclosing, but “trust” emerged as a vague,
undefi ned concept. Only one youth offered a defi nition:
“loyalty, respect and honor.” The majority appeared unsure
about how to handle disclosure, even with someone they
knew they “could trust.” A few participants described
methods of gauging a person’s reaction before they dis-
closed their status. For example, one youth explained:
“First I would ask them, ‘Well, what do you think about
HIV?’ … If they tell me, ‘Oh, I don’t like to hang out with
[HIV-positive] people and everything,’ I just stay back.
And I’m like, ‘Oh, I’m not going to tell them.’ If they give
me another [answer], like ‘Oh, no matter if somebody has
that; I’ll be his friend,’ or ‘I’ll be there for him,’ I’ll be like,
‘Oh. Well, I have HIV.’”—16-year-old behaviorally infected
Hispanic female
�Disclosure reasons. Fourteen of the 18 youth who had
disclosed their HIV status said they desired a closer rela-
tionship with another person, and described their postdis-
closure relationship as more open than before. All providers
When asked to describe a disclosure incident, eight youth described disclosure to a friend, six to a signifi cant other and four to a family member. All youth who had disclosed their HIV status reported at least one compassionate reac- tion. Half agreed that this supportive experience encouraged them to consider future disclosure. Only two participants recounted a negative reaction to their disclosure, including a 19-year-old behaviorally infected black female, who said: “He told me he loved me so much, he wanted to marry me. Then I told him [my HIV status]. He walked away. [Now], he just treats me like an outsider.” These two participants said the negative reactions would not prevent them from disclosing again, but they would be more selective in whom they would tell.
Other youth described the medical and emotional ben- efi ts of disclosure. For example:
“Now [my friend] protects me. She’s like my guard. … She tries to keep me from certain things. Like when she knows someone’s sick, she’s like, ‘Don’t go by them.’ … She’s like another person that tells me to take my medi- cine.”—14-year-old perinatally infected black female
Some youth indicated that another reason to disclose was to warn others of the risk of infection:
“If they’re doing stuff that I don’t think is smart or put- ting themselves in danger, then I’ll tell them, make them realize that it’s not just a certain population [who get infected], … that it can happen to anyone.”—19-year-old perinatally infected white female �Disclosure strategies. Health care providers identifi ed various strategies to help HIV-positive adolescents address disclosure issues. One social worker described the use of role-play:
“We write … down who they’d like to disclose to and why. … We [ask] who would be the hardest, the easiest, and the pros and cons of what will happen if they don’t want to talk to them again.”
A pediatrician stated: “I have a handout that … tells [patients] to be very care-
ful who they disclose to, talks to them about only telling people you trust, being very careful about telling people you think are your best friends, because you don’t know how people are going to respond to this information.”
In addition, videos in which HIV-positive peers address disclosure issues were cited as a helpful resource. Another strategy was to offer the clinic as the location for disclo- sure. As one pediatrician told an HIV-positive patient, “Anything we can do to be here for you if you want to tell him here, then we can back it up right away with some information.”
Sexual Risk Reduction �Dating challenges. The term “dating” was not defi ned for the youth, but their responses indicated that they consid- ered dating to mean going out regularly with someone as a romantic partner. Of the 18 youth who reported a disclo- sure incident, nine said they disclosed to a dating partner, and four stated that disclosure was a dating challenge. Twelve of the 15 respondents who answered the question about whether their HIV status prevented them from dat- ing did not feel that it did. Nine of the 17 who responded to the question about whether being HIV-positive infl u- enced their intimacy with another person (e.g., made them restrict themselves to holding hands or kissing) said that it did not. One 14-year-old perinatally infected black female reported, “I’m only going to kiss or hold hands, but none of the other stuff, … like tongue kiss, because I’d be scared for him and myself.” Health care providers said disclosure was the main dating challenge for HIV-positive youth. As one social worker commented, “Their relationships often don’t last long, so next week [their] boyfriend is dating someone else and sharing their secret around.”
Nine out of 14 youth who commented on the issue felt that an HIV-negative partner would have trouble relating to their circumstances and that there would be diffi cul- ties with physical as well as emotional intimacy. Regarding physical closeness, one youth explained:
“[With an] HIV-negative guy, it’s more diffi cult. … ’Cause after a while you get more intimate with the per- son, and you think about it, and you know you can’t do that or this will happen. But you love this person, you
Volume 42, Number 2, June 2010 113
care for this person, but you don’t want to pass this thing along.”–18-year-old perinatally infected black female
Upon being questioned about dating an HIV-positive individual, 10 out of 14 youth said that an HIV-concordant relationship would be easier. Only a couple of participants reported fear of reinfection or a partner’s illness as a deter- rent for dating another HIV-positive person. A few others said that dating an HIV-positive individual would provide commonality with their partner, greater confi dence in the relationship and assistance with their antiretroviral medi- cation schedule. One participant stated:
“[It would be] better, because y’all both have to take medicine. … So if you see that person taking the medi- cine, you’re going to remember to take your medicine. And you can talk to that person instead of, like, I’m scared to say this or say that.”—15-year-old perinatally infected black female �Attitudes toward condom use. Discussion related to condoms focused on attitudes toward sex with an HIV- negative individual versus sex with someone who was HIV-positive. Of the 16 youth who responded, half felt it was acceptable to have sex with an HIV-negative partner if a condom was used. As an 18-year-old behaviorally infected black female remarked, “I feel that the person that has HIV should automatically tell the person he’ll need to wear a condom because, you know, they should have feel- ings about the other person. If he refuses, then it just won’t happen.”
Twelve of the 16 youth did not condone having unpro- tected sex with an HIV-negative partner. As a 15-year-old perinatally infected black female exclaimed, “Oh, that’s not good. … If you know you have it, you shouldn’t do that because you don’t want to have to pass it on to anybody else and make them have it.” However, four felt it was acceptable to have unprotected sex with an HIV-negative partner if they had disclosed their HIV status.
More than half of the youth believed that using a con- dom with another HIV-positive person was important. Reinfection was the main concern, followed by pregnancy and risk of other STDs. A 19-year-old behaviorally infected black male explained:
“Y’all can think y’all’s pretty much got the same thing, but something bad’s going to end up happening [to] one of the two people, because somebody’s HIV load is worse than another person’s.”
Youth and providers reported similar reasons for why condoms might not be used: reduced pleasure, males’ resistance, religious beliefs, females’ lack of empower- ment, a desire to have children and loss of spontaneity. �Self-effi cacy for condom negotiation. While all health care providers gave detailed accounts of counseling youth on the mechanics of condom use, they considered the youth to possess low self-effi cacy regarding condom nego- tiation with a partner. As one nurse practitioner stated:
“I’ve noticed it is a little diffi cult for them to ask their partners to use a condom. I think that has a lot to do with their age. You know, they’re not real self-assured at that age
anyway, and then they’re initiating something that’s very adult. And asking them to be something that they may not be—self-assertive.”
Another nurse remarked, “There’s no way that they’re going to say, ‘You know what? You’re not doing that until you put a condom on.’ They’re just afraid to say that or feel that they don’t have the right to say that.”
When the youth were asked about condom use and negotiation, 16 of the 20 expressed a higher level of self- effi cacy than suggested by the providers. Many reported using a direct approach with a partner, as did the 16-year- old perinatally infected Hispanic female who said: “You have to use a condom now. Use it, or now you’re not going to have sex.” However, responses from fi ve youth revealed limited awareness of how to put on a condom, purchase condoms and initiate a discussion of condom use with a partner. In addition, a 17-year-old behaviorally infected black female said, “Oh, I make sure the condom don’t have no holes in it, it’s not old.” �Attitudes toward pregnancy. All of the 11 youth who discussed pregnancy (10 females and one male) expressed interest in having a child in the future. None reported concern about HIV transmission to a partner; rather, concern focused on possible transmission to the baby. For example, an 18-year-old perinatally infected black female stated:
“I wouldn’t encourage anybody to get pregnant, because it’s a possibility sometimes that the baby can catch AIDS. But if you wanted to, then I would take the medications the proper way and just do the right thing.”
Recognizing the need for family planning, many health care providers discussed birth control with their patients. In particular, the providers addressed the potential decreased effi cacy of oral contraceptives when taking cer- tain HIV antiretroviral medications, the adverse effect that antiretrovirals can have on the baby in utero, treatment protocols during pregnancy to reduce transmission risk, potential transmission risk to the partner and the respon- sibilities of parenting. �Risk reduction strategies. Health care providers identi- fi ed various strategies to motivate HIV-positive youth regarding sexual risk reduction. A common strategy was to engage in discussions with youth about the risk of acquir- ing other STDs, reinfection with another strain of HIV and pregnancy. A condom demonstration was another com- monly used strategy. For example, one social worker cited the importance of “teaching them about [condoms]. Letting them have fun with them. Letting them blow them up and play with them … see what they are and under- stand the importance of them. Then it isn’t a secret anymore.” A few providers conveyed the need to fi nd ways to increase self-esteem among HIV-positive youth. According to one pediatrician:
“It’s empowerment, self-esteem. … They’re worth something; they’re not worthless. That’s the most impor- tant thing, and from there, everything else follows. It has nothing to do with the mechanics of condoms.”
[Most youth]
expressed a
higher level of
self-effi cacy
[for condom
negotiation]
than suggested
by the
providers. Lowering Secondary HIV Transmission Among HIV-Positive Youth114 Perspectives on Sexual and Reproductive Health
Recommendations for an Intervention Both youth and health care providers were asked about the potential utility of a computer-based intervention. Providers responded that it could help standardize and reinforce risk reduction messages. Providers and youth thought the computer program should include images, interactive components and personal testimonies from HIV-positive youth. In addition, both groups felt that wait- ing periods within a clinical visit would offer ample time for patients to engage in a computer-based intervention.
Recognizing that HIV-positive youth fear being stig- matized, most providers felt that computer-based inter- ventions within the clinic setting would help to address confi dentiality issues. One social worker stated, “It’s more anonymous. … They would probably feel less on the spot, and there wouldn’t be, maybe, the anxiety.” Many health care providers thought that disclosure could be
addressed
well in a computer-based behavioral intervention by offer- ing peer modeling of disclosurescenarios.
Providers also believed that such an intervention about condom use could enhance conversations between providers and HIV- positive youth regarding condom use, since this is often a diffi cult subject to broach. In addition, many providers said any new behavioral intervention should include self- esteem as a topic. One obstetrician-gynecologist remarked, “[Self-esteem] has nothing to do with condoms. Most teenagers, by the time they’re 13, they know more of the gymnastics of sex than I do. But the self-esteem issues are the [critical] issues.”DISCUSSION In this study, both youth and health care providers reported that disclosure was a major hurdle for young people to overcome when living with HIV. Youth’s hesita- tion about disclosure appeared to be closely tied to their perceptions of society’s views toward HIV-positive indi- viduals. Specifi cally, the fear that members of their social network would look unfavorably upon them kept youth from disclosing their status. Similarly, other studies have found that fear of discrimination and rejection due to HIV- related stigma is a barrier to disclosure.12,13 The revela- tion that both perinatally and behaviorally infected youth are concerned about stigma suggests that HIV stigma is a universal fear.
As found in previous research,16 youth disclosed their status to generate support and acceptance. When asked to describe a disclosure experience, most discussed disclos- ing to a friend or signifi cant other. This fi nding suggests that disclosing to individuals outside the family is fore- most in their minds and represents a particularly stress- ful challenge. Prior research has found that disclosure to a signifi cant other was especially disconcerting for HIV- positive youth.17 Perhaps youth feel that the risk of rejec- tion and breach of confi dentiality is especially high with people outside their family. Youth may feel that family members share a bond that is not easily broken, whereas others are less emotionally invested. Interventions that
include testimonies from HIV-positive youth who have experienced favorable disclosure outcomes could provide positive reinforcement for disclosing one’s HIV status.
Our fi nding that being HIV-positive affected partici- pants’ level of intimacy with HIV-negative individuals corresponds with results from a study suggesting that infected youth may avoid penetrative sex by delaying sex- ual debut or by engaging in touching behaviors as harm reduction strategies.18 A study with HIV-negative youth found that relationship satisfaction was strongly asso- ciated with achieving the level of intimacy they wanted with a dating partner.19 By not obtaining desired levels of intimacy, HIV-positive youth may experience dissat- isfaction with romantic relationships. Most research on sexual behaviors among HIV-positive youth has exam- ined risk reduction efforts, such as condom use, and has overlooked intimacy issues that may directly impact the development of fulfi lling relationships. For example, one study’s intervention to reduce risky sexual behavior among HIV-infected youth focused on increasing self-effi cacy of condom use and negotiation skills, yet did not address adolescents’ intimacy level with their partners.8
For infected youth who engage in sexual relationships, disclosure may infl uence decisions regarding condom use. Although one study with HIV-positive youth found that disclosure of HIV status was positively associated with condom use,10 a few youth in our study believed that sex without a condom was acceptable as long as they had disclosed their status. Similarly, another study found that HIV-positive youth assumed that disclosure of their status shifted the burden of possible infection and need for protection to their sexual partners.20 This fi nd- ing demonstrates the need to develop interventions that increase HIV- positive youth’s motivation to protect the partner regardless of the partner’s knowledge of their sta- tus. One approach would be to develop exercises that pro- vide youth with an opportunity to explore the moral and ethical challenges of disclosure and risk reduction. Future interventions that include a component involving an HIV- infected adolescent’s partner could be an important tool in addressing risk reduction.
While previous studies have reported the nonuse of condoms among HIV-positive youth,3,21,22 actual condom use was not assessed in this study. Although the youth talked confi dently about using condoms with their part- ners, their confi dence and skill level with respect to use remained unclear. The apparent discrepancy between providers and youth regarding self-effi cacy indicates the importance of providers’ fully assessing clients’ skills for proper condom use and negotiation. Future research should examine HIV-positive adolescents’ competency levels for these skills.
One reason for nonuse of condoms that is unique to HIV-positive adolescents is their partner’s HIV status. A study with HIV-positive adolescent females found that they were more likely not to use a condom if they perceived their sexual partners to also be HIV-infected.10
Many…
providersthought that
disclosurecould be
addressedwell in [an]
intervention
by off ering
peer modeling
of disclosure
scenarios.Volume 42, Number 2, June 2010 115
This may indicate that youth lack knowledge or under- standing of the risks of HIV reinfection or acquisition of additional STDs, and may highlight a need for explicit prevention messages that address sex with another HIV- positive individual.
In our study, about half of the participants wanted to get pregnant in the future; however, they did not appear to appreciate the link between conceiving a child and the risk of infecting their partner. While earlier studies have demonstrated society’s unfavorable view of HIV-positive women choosing to have children,23,24 we could not tell whether the youth were aware of these attitudes. Without specifi c information about their motivations for want- ing children, the adolescents’ desire for future pregnan- cies suggests that they have embraced having children in the same ways as HIV-negative individuals.24,25 This fi nd- ing reveals the need for interventions that educate youth about preventing HIV transmission to their partner while trying to conceive.
The U.S. Department of Health and Human Services recommends that HIV-infected adolescents who are clini- cally and immunologically stable receive clinical follow- up every 3–4 months.26 Hence, by utilizing clinic waiting periods, behavioral interventions can occur approximately 3–4 times a year for most HIV-positive youth. Such inter- ventions would allow for ongoing delivery and reinforce- ment of prevention messages, which are essential for risk reduction. In addition, conducting behavioral interven- tions within a clinic setting could stimulate discussions between youth and health care providers regarding sensi- tive topics, such as safer sex. Although the providers in this study were well trained and experienced in counseling their patients, further research is needed to evaluate how much youth apply their care providers’ lessons in their everyday lives. Interventions that query youth directly and monitor clinic encounters could enhance adolescents’ self- effi cacy for condom use and disclosure skills, and could be tailored to address the specifi c needs of perinatally and behaviorally infected HIV-positive youth.
Limitations This study has a number of limitations. It is important to acknowledge the potential for recall bias associated with self- reported behaviors; participants might overstate or under- state their experiences. Some participants may not provide an honest response regarding risk reduction behaviors because that response may not be socially desirable or may garner disapproval. In addition, because the participants in our study were recruited from local HIV and AIDS clinics and an AIDS service organization, and so received specialty care and prevention counseling, they may have greater knowledge and awareness about HIV and disclosure issues than HIV- positive youth who have not been exposed to such care.
Future studies should include a large enough sample to assess disclosure and risk reduction differences based on gender, age and transmission mode. Also, exploring dis- closure experiences related to the different relationships
in an HIV-positive adolescent’s life could assist in tailor- ing techniques for counseling about disclosure with spe- cifi c individuals. Furthermore, the CDC’s defi nition of an adolescent covers a broad age range (13–24), which encompasses different stages of psychological and social development. Distinct risk behaviors may exist among youth within these different developmental stages that require unique intervention approaches to be effective. For example, the initiation of sexual intercourse may be a much less normative behavior for younger than for older adolescent populations. Therefore, it would be benefi cial for future studies to examine HIV-positive youth while taking into account their developmental stage.
Finally, although adolescent participants were asked to describe their perceptions about sexual risk reduction, they were not asked to explain if these perceptions were associated in any way with their sexual behavior. Thus, we cannot comment on any potential differences between youth who were sexually active and those who were not. In future studies, adolescents should be asked if their per- ceptions about risk reduction have infl uenced their sexual experiences.
Conclusions More interventions are needed to help HIV-positive ado- lescents overcome multiple challenges in the areas of disclosure and sexual risk reduction. Efforts to stem the HIV pandemic—including universal voluntary testing and immediate treatment for infected individuals—must com- prise effective interventions to reduce secondary transmis- sion.27 Health care providers need innovative educational tools that can be used in a clinic setting to improve adoles- cents’ skills in reducing their risky sexual behaviors.
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Acknowledgment This study was conducted with funding from the Baylor College of Medicine–University of Texas at Houston Center for AIDS Research, under grant P30 A103621 1-12.
Author contact: aleonard@legacycommunityhealth.org
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Should it be illegal for HIV-positive persons to have unprotected sex without disclosure? An
examination of attitudes among US men who have sex with men and the impact of state law
Keith J. Horvath*, Richard Weinmeyer and Simon Rosser
Division of Epidemiology and Community Health, University of Minnesota, 1300 South 2nd Street, Suite 300, Minneapolis, MN 55403, USA
(Received 6 April 2009; final version received 1 February 2010)
The aims of this study were to describe the overall pattern and predictors of attitudes toward criminalizing unprotected sex without disclosure by persons living with HIV among a broad sample of men who have sex with men (MSM) living in the USA, and to examine whether attitudes and sexual risk behavior differ by states with HIV-specific laws or no such laws. Participants (n�1725) were recruited in a 3.5 month period to complete a cross-sectional 70-minute online survey assessing attitudes and high risk sexual behavior. Participants self- identified as male, 18 years of age or older, a US resident, and having ever had sex with a man. In addition, participants were coded as residing in a state with HIV-specific laws or not. Results showed that most (65%)
respondents believed it should be illegal for persons living with HIV to have unprotected sex without disclosure. However, among the total sample and HIV-positive MSM, attitudes and unprotected sex with recent partners did not vary by state law. Believing that it should not be illegal for persons living with HIV to have unprotected sex
without disclosure was associated with HIV-positive status (OR�0.33), higher education (ORs�0.42�0.64), gay orientation (non-gay orientation: OR�1.54), perceptions that state residents were somewhat or very accepting toward homosexuality (OR�0.75), unprotected anal intercourse with two or more recent sexual partners (OR� 0.72), and lower perceptions of responsibility (OR�0.75). The results did not support the proposition that HIV- specific laws deter high-risk sexual behavior, however further research is needed to examine whether they act as a barrier for MSM at highest risk for acquiring or transmitting HIV.
Keywords: HIV; law; sexual risk behavior; men who have sex with men
Introduction
Despite the adoption of a rights-based approach by several notable global HIV/AIDS organizations (UNAIDS, 2008; World Health Organization, 2008), at least 30 persons have been prosecuted for HIV exposure in the USA since 2008 (The Center for HIV Law and Policy, 2009). Penalties range from a US$100 fine to up to 30 years of imprisonment (Global Network of People Living with HIV, 2009). Although the degree to which HIV-specific laws undermine or support national HIV prevention efforts continues to be debated (Burris & Cameron, 2008; Galletly & Pinkerton, 2006; Lowbury & Kinghorn, 2006; Weait, 2007), there is a continuing need to understand the attitudes that persons from groups disproportionately affected by the HIV epidemic hold about such laws, and how HIV-specific laws affect sexual behavior (UNAIDS, 2008).
Assessing the impact of HIV-specific laws in the USA is complex as laws vary across states on several dimensions, including whether one has knowledge of his or her HIV status, whether or not HIV status disclosure occurred, or if there was a clear intent to
transmit HIV. To examine whether HIV-specific laws,
and knowledge of such laws, influenced condom use,
Burris, Beletsky, Burleson, Case, and Lazzarini (2007)
interviewed 482 men and women living in a state that
either has a HIV-specific law requiring disclosure of
HIV status by infected individuals (Illinois) or a state
that has no such law (New York). Approximately
45% (n�219/482) of respondents believed the law prohibited HIV-positive individuals from having sex
without using a condom. With respect to anal sex,
neither living in a state with a HIV-specific law
nor having knowledge of the law was significantly
associated with increased condom use. However,
participants living in Illinois who disclosed their HIV
status were less likely to use condoms, while New York
residents who disclosed were more likely to use a
condom. An online study of men who have sex with
men (MSM) in the UK showed that over half (57%) of
participants believed it ‘‘is a good idea to imprison
people who know they have HIV if they pass it to
sexual partners who do not know they have it,’’ with
25% being unsure, and 18% opposed (Dodds, 2008;
Dodds et al., 2009). Men who had never been tested for
*Corresponding author. Email: horva018@umn.edu
AIDS Care Vol. 22, No. 10, October 2010, 1221�1228
ISSN 0954-0121 print/ISSN 1360-0451 online
# 2010 Taylor & Francis
DOI: 10.1080/09540121003668078
http://www.informaworld.com
http://www.informaworld.comHIV in this study were more likely to support
imprisonment than those who had tested negative for
HIV or who self-reported as HIV-positive, while HIV-
positive participants tended to believe that responsi-
bility for negotiating sexual exchanges rested with
both partners. Overall, these and other (e.g., Adam,
Elliott, Husbands, Murray, & Maxwell, 2008) studies
suggest variation in knowledge of and attitudes toward
laws that criminalize unprotected sex among persons
living with HIV. MSM remain the largest population infected with
HIV in the USA and similar countries (Centers for
Disease Control and Prevention, 2008; Sullivan et al.,
2009). Studies are lacking that examine the attitudes of
MSM living in the USA toward laws that prohibit
unprotected sex by HIV-positive individuals without
disclosure. Therefore, the aims of this study were to:
(1) describe overall attitudes toward criminalizing
unprotected sex without disclosure by persons living
with HIV among a broad sample of MSM living in the
USA; (2) examine whether attitudes and sexual risk
behavior differ by states that either have HIV-specific
laws or no such laws; and (3) determine the demo-
graphic, psychosocial, and behavioral predictors of
attitudes toward criminalizing unprotected sex with-
out disclosure by HIV-positive persons. The results
have implications for policy-makers regarding crim-
inal laws surrounding HIV transmission, as well as for
prevention efforts aimed to reduce rates of HIV
infection in the USA.
Method
Recruitment and enrollment
Recruitment was guided a priori by the degree to
which legal and HIV experts believed that state laws
were generally favorable or unfavorable to gay,
lesbian, bisexual, and transgender (GLBT) residents
living in US population centers, and matched on
population size and the number of alcohol establish-
ments catering to the GLBT community. Participants
were recruited in a 3.5 month period in 2008 using
online banner advertisements placed on two websites
popular among gay and bisexual men to meet sexual
partners, and targeted toward men living in the
selected population centers. Banner ads stated, ‘‘Par-
ticipate in University Research on Sex and Alcohol
and Earn $30’’, included the university and study logo,
and a picture of a man. Participants must have self-
identified as male, been 18 years of age or older, and
have ever had sex with a man to be eligible for
the study. Of the men who clicked on the banner ad
(n�3370), 56% (n�1874) met eligibility requirements
and enrolled in the survey, and 92% (n�1725) of these men completed the survey.
Procedures
All procedures were approved by the University of Minnesota Institutional Review Board and a federal Certificate of Confidentiality was obtained to guard against the subpoena of participant data. Participants who clicked on the study banner advertisement were taken to a secure study website. Prospective partici- pants viewed a welcome page with an overview of procedures and information about the study and staff. After answering eligibility questions, eligible respon- dents were guided through a series of consent pages (Rosser, Gurak, et al., 2009). An email was sent to participants with a link to the survey for re-entry if they chose to discontinue before completion. Partici- pants who started the survey without finishing were sent reminders. The mean completion time was approximately 70 minutes. Automated and manual de-duplication and validation protocols were applied to ensure that each case represented a unique respon- dent. Ineligible persons viewed a web page that thanked them for their interest.
Measures
Items used for the purpose of this study were taken from a larger online survey of online and offline sexual attitudes and behaviors, substance use, and laws relevant to the GLBT community. Using algorithms, participants were asked a variable number of items depending on their responses. Participants responded to each relevant question with either their answer or by clicking a ‘‘refuse to answer’’ option.
The main outcome variable of interest was: ‘‘should it be illegal for an HIV-positive person who knows his or her status to have unprotected sex without telling the other person of their HIV-status?’’ Response options were: ‘‘no, it shouldn’t be illegal,’’ ‘‘I don’t know,’’ or ‘‘Yes, it should be illegal.’’
Demographic factors (see Table 1) included age (open-ended format), HIV-status (calculated from two questions of when they had their last HIV test and whether they have ever been diagnosed with HIV), ethnicity (Hispanic versus non-Hispanic) and race (check box for American Indian, Asian American, Black, Pacific Islander, White, or an open-ended text box for ‘‘other’’ race), and educational attainment. Participants self-reported their sexual identity (gay, bisexual, heterosexual, or a different sexual identity), as well as their comfort with their sexual orientation (Likert scale from 1�Very Comfortable to 5�Very Uncomfortable). Men were asked to report the poli- tical party for which they tend to vote, and how gay
1222 K.J. Horvath et al.
Table 1. Sample sociodemographics.
Should it be illegal for an HIV-positive person who knows his or her status to have unprotected anal sex without telling the other person of
their HIV-status? a
Total
(n�1725) No
(n�393) Don’t Know
(n�213) Yes
(n�1116)
Column (%) Row (%) Row (%) Row (%) Chi-square value
Age 47.28*** 18�20 7 11 10 79 21�30 41 18 11 71 31�40 24 28 12 61 41�70 28 28 16 56
HIV-status 112.21*** Negative 77 18 12 70
Positive 14 48 14 38 Never tested 9 20 11 69
Ethnicity/race 0.65
White 76 23 12 65 Hispanic 15 21 13 65 All other 8 22 12 66
Education 20.03** H.S. or less 11 17 8 75 Technical/some college 37 21 12 67 College degree 34 25 14 62
Grad degree 18 27 15 58 Sexual identity 15.44*** Gay 86 24 13 63
Other (e.g., Bisexual) 14 17 7 76 Comfort with sexual orientation 14.80** Very 60 25 13 62
Comfortable 25 19 14 67 Less than comfortable 15 19 9 72
Political affiliation 12.40 Democrat 74 24 13 63
Republican 11 18 8 74 Independent 6 19 12 70 Don’t/can’t vote 7 19 10 70
Other 2 23 15 63 Accepting state 10.68* Very/somewhat hostile 27 20 10 70
Neither 15 21 15 65 Somewhat/very accepting 58 25 13 62
Long-term relationship 5.26
No 71 21 13 66 Yes 29 26 12 62
UAI (past three months) 48.08*** 0 63 19 12 69
1 13 20 14 66 2� 23 35 13 52
M (SD) M (SD) M (SD) M (SD)
Responsibility b
16.96 c ***
1�SA to 7�SD 1.81 (1.27) 2.31 (1.50) 1.90 (1.19) 1.61 (1.14)
a Three participants refused to answer the question.
b Defined as: ‘‘I feel responsible for protecting my online sexual partners from HIV or other sexually transmitted diseases’’ (Likert scale from
1�Strongly agree to 7�Strongly disagree).
c One-way ANOVA.*pB0.05; **pB0.01; ***pB0.001.
AIDS Care 1223
accepting or gay hostile they believe people are in their state (Likert scale from 1�Very Hostile to 5�Very Accepting).
Participants reported separately the number of sexual partners they met online, in a bar, and at any other venue with whom they engaged in unprotected anal intercourse (UAI) in the past three months, which then was used to calculate the total number of UAI partners. In addition, men were asked if they were in a long-term relationship and, for those men who were, whether they had engaged in UAI in the past three months with that partner. Finally, men were asked to state the degree to which they agreed with the following statement, ‘‘I feel responsible for protecting my online sexual partners from HIV or other sexually transmitted diseases (STDs)’’ (Likert scale from 1� Strongly Agree to 7�Strongly Disagree).
Analyses
Statistical analyses were performed using STATA 9.2. A variable was created reflecting whether participants resided in a state with HIV-specific laws (or laws that increase penalty based on HIV status) or no HIV- specific law from on an existing database (American Civil Liberties Union, 2008). Demographic, psycho- social, and behavioral group differences were exam- ined with chi-square and Fisher’s exact tests. Factors significantly associated with the main outcome in the bivariate analyses were entered into a multivariate ordinal logistic regression to examine which factors were significantly associated with believing it should be illegal for an HIV-positive person who knows his or her status to have unprotected sex without telling the other person of their HIV-status. The proportional odds assumption was met for all predictor variables. Statistical significance was set a priori at pB0.05.
Results
Sample characteristics
Sample characteristics of respondents are shown in Table 1. Sixty-five percent of participants were be- tween the ages of 21 and 40, 76% identified as white, and 52% obtained a college degree. While 77% (n� 1319) of participants reported that their most recent HIV test was HIV-negative, 14% (n�241) reported being HIV-positive, and 9% (n�149) had never been tested. Of note, 34% of MSM between the ages of 18 and 21 had never been tested, compared to between 6 and 8% of men in the other age categories (not shown, x2[3, N�1707]�214.66, pB0.001). A minority of participants (29%) was in a long-term relationship and most participants (63%) reported no acts of UAI
in the past three months with men they met online, in a bar, or at other venues in the past three months.
Attitudes toward unprotected sex by HIV-positive individuals without disclosure
Sixty-five percent of respondents believed that it should it be illegal for an HIV-positive person who knows his or her status to have unprotected sex without telling the other person of their HIV-status, 23% believed that it should not be illegal, and 12% did not know. Believing that it should be illegal for an HIV-positive person who knows his or her status to have unprotected sex without telling the other person of their HIV-status was associated with younger age, HIV-negative or unknown status, less education, non-gay sexual identification, being less comfortable with their sexual orientation, residing in a state in which they perceived residents were somewhat or very hostile, engaging in two or more acts of UAI in the past three months, and feeling more responsible for protecting online sexual partners from HIV and other STDs (see Table 1).
State law, attitude, and sexual risk behavior
Table 2 shows the frequency and percentage of the overall sample and of HIV-positive MSM who endorsed the main outcome variable, UAI partners in the past three months, and UAI with a long-term partner by whether state-level criminal statutes on HIV transmission existed or not. For the overall sample and HIV-positive MSM, attitudes did not vary according to the existence of criminal statutes on HIV transmission. Likewise, the percentage of parti- cipants reporting no, one, or two or more UAI partners or UAI with a long-term partner in the past three months did not differ by state law.
Multivariate analysis of predictors of believing that unprotected sex by HIV-positive individuals without disclosure should be illegal
Results of the multivariate analysis are shown in Table 3. Participants who were HIV-positive (versus HIV-negative/unknown; OR�0.33) and held a col- lege or graduate degree (versus less education; ORs� 0.42�0.64) were less likely to believe that it should be illegal for an HIV-positive person who knows his or her status to have unprotected sex without telling the other person of their HIV-status. Conversely, men who had a non-gay sexual orientation were more likely than men with a gay orientation to believe it should be illegal (OR�1.54). Compared to men who perceived people in their state to be somewhat or very hostile toward homosexuality, those who rated their
1224 K.J. Horvath et al.
state residents to be somewhat or very accepting were less likely to believe it should be illegal (OR�0.75). With respect to sexual behavior, the odds of believing it should be illegal was significantly less for men who reported engaging in UAI with two or more sexual partners in the past three months (OR�0.72) com- pared to men who self-reported having no UAI partners. Finally, feeling less responsible for protect- ing online sexual partners from HIV or other STDs was associated with decreased odds for believing that it should be illegal (OR�0.75).
Discussion
Most men in this study believed it should be illegal for an HIV-positive person who knows his or her status to have unprotected sex without disclosing it to their sex partners. Believing that it should be illegal was associated with HIV-negative or unknown status, less education, having a non-gay sexual orientation, living in a state that they perceive as hostile toward GLBT persons, reporting fewer UAI partners in the past 3 months, and feel greater responsibility toward protect- ing their online partners from HIV and other STDs. Similar to prior studies (Burris et al., 2007), residing in a state with existing statutes on HIV transmission was not associated with differences in attitudes about the main outcome variable or with decreased sexual risk behaviors in this sample of MSM.
Attitudes varied markedly by HIV status. Although nearly half of MSM living with HIV believed it should not be illegal, most HIV-negative partici- pants and those who had never been tested for HIV were in support. Prior studies show that HIV-negative individuals living in the UK overall were critical of laws that criminalize the transmission of HIV (Dodds & Keogh, 2006). These differences most likely reflect a shift in orientation toward criminal statutes on HIV transmission following seroconversion. Specifically, those who know or believe they are HIV-negative are primarily concerned with protecting themselves from HIV and support the implementation of laws that would appear to reduce their risk of encountering an HIV-positive sexual partner who fails to explicitly disclose his status. Following seroconversion, HIV- positive individuals are likely to fear the potential for such laws to be used to prosecute them for cases that involve their HIV status.
Although age was insignificant in the multivariate model, the finding that fewer older MSM believed that it should be illegal for someone who is HIV-positive to have unprotected sex without disclosure than younger MSM may be, in part, attributed to the high propor- tion (34%) of 18�20 year old MSM who had never been tested for HIV. As noted by others (Dodds et al.,
T a b le
2 . G ro u p d if fe re n ce s in
a tt it u d es
to w a rd
u n p ro te ct ed
se x
b y
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-p o si ti v e
in d iv id u a lsw it h o u t d is cl o su re
a n d u n p ro te ct ed
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p a rt n er
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3 m o n th
s b y st a tecr im
in a l st a tu te
o n H IV
tr a n sm
is si o n .
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u n p ro te ct ed se x b y H IV-p o si ti v e in d iv id u a ls w it h o u t d is cl o su re
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p a st 3 m o n thU A I w it h lo n g -t er m
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n (% a ) n (% a )x2 n (%
a ) n (% a ) n (% a ) x2 n (% a ) n (% a )p -v a lu e
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5 .7 9
2 .4 7
0 .5 2 b
N o H IV
cr im in a l st a tu te2 4 2 (2 5 )
1 2 0 (1 2 )
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6 1 7 (6 4 )
1 3 8 (1 4 )
2 1 4 (2 2 )
4 3 (1 9 )
1 8 6 (8 1 )
E x is ti n g H IV
cr im in a l st a tu te1 5 1 (2 0 )
9 1 (1 2 )
5 0 5 (6 8 )
4 6 9 (6 3 )
9 4 (1 3 )
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H IV -p o si ti v e0 .3 8
0 .2 1
0 .3 0 c
N o H IV cr im in a l st a tu te6 3 (5 0 )
1 8 (1 4 )
4 5 (3 6 )
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� 0 .4 1 .
c p -v a lu e fo r F is h er ’s ex a ct
te st .
AIDS Care 1225
2009; Galletly & Pinkerton, 2006), MSM who have not
been tested for HIV may adopt a HIV disclosure-based
risk reduction strategy (i.e., one that relies on the
disclosure by the HIV-positive partner) that gains
credibility by HIV transmission laws. Sexual ex-
changes are complex and often rely on non-verbal
cues to inform safer sex practices (Adam, Husbands,
Murray, & Maxwell, 2008; Horvath, Nygaard, &
Rosser, in press; Horvath, Oakes, & Rosser, 2008).
Evidence suggests an increasing shift toward non-
disclosure in the MSM community (Sheon & Crosby,
2004) and, therefore, relying on a disclosure-based risk
reduction strategy appears inherently precarious. The recent sexual risk behavior of MSM in this
study was similar to that of other online studies using
similar methodology. Thirty-seven percent of MSM in
the current study reported one or more UAI partners
in the past three months, compared to 31% of MSM
in a prior study (Rosser, Oakes, et al., 2009). Men who
had more UAI partners and endorsed lower responsi-
bility to protect their online sexual partners from HIV
and other STDs were less likely to believe that it should
be illegal for someone who has HIV to have unpro-
tected sex without disclosure. Prior studies show that
greater personal beliefs in responsibility for protecting
partners from HIV and other infections is associated
with decreased transmission risk (O’Leary & Wolitski,
2009). However, as noted above, no significant asso-
ciation was found between the existence of state
statutes on HIV transmission and UAI partnerships
among the total sample or specifically among HIV-
positive MSM. Overall, these results suggest that
state laws on HIV transmission are not a deterrent to
sexual risk taking among MSM, and that prevention
Table 3. Multivariate analysis for believing that it should be illegal for HIV-positive person to have unprotected sex without
disclosure. a
Odds ratio Lower Limit Upper Limit p-value
Age 18�20 Ref. 21�30 0.80 0.48 1.32 0.379 31�40 0.62 0.37 1.05 0.074 41�70 0.61 0.36 1.03 0.065
HIV-status Negative Ref. Positive 0.33 0.24 0.44 0.000
Never tested 1.72 0.48 1.08 0.112 Education
H.S. or less Ref. Technical/some college 0.64 0.44 0.95 0.028
College degree 0.53 0.35 0.78 0.002 Grad degree 0.42 0.27 0.64 0.000
Sexual identity
Gay Ref. Other 1.54 1.08 2.20 0.018
Comfort with sexual orientation
Very Ref. Comfortable 1.11 0.86 1.42 0.419 Less than comfortable 1.21 0.87 1.70 0.254
Accepting state
Very/somewhat hostile Ref. Neither 0.84 0.60 1.18 0.316 Somewhat/very accepting 0.75 0.59 0.96 0.023
UAI (past three months) 0 Ref. 1 1.00 0.73 1.37 0.997
2� 0.72 0.56 0.93 0.013 Responsibility
b 0.75 0.69 0.81 0.000
a Defined as ‘‘Should it be illegal for an HIV-positive person who knows his or her status to have unprotected anal sex without telling the other
person of their HIV-status?’’ (Response options: 0�No, 1�Don’t know, 2�Yes). b Defined as: ‘‘I feel responsible for protecting my online sexual partners from HIV or other sexually transmitted diseases’’ (Likert scale from
1�Strongly agree to 7�Strongly disagree).1226 K.J. Horvath et al.
resources may be more effective if allocated toward addressing empirically supported individual risk fac- tors (e.g., increasing personal responsibility beliefs).
Study limitations
The results of this study are limited in several ways. First, the cross-sectional design prohibits causal inferences about the impact of independent variables on outcomes. In addition, we cannot determine whether the non-significant association between state law and UAI partnerships is attributable to a lack of awareness of the existence of such laws or whether such information is simply not used in MSM’s sexual decision-making. Participant knowledge of the exis- tence of HIV-specific state laws should be considered in future research. Second, while a strength of the study was that participants were geographically diverse, the findings may not generalize to non-Internet-using MSM. Moreover, participants were not randomly selected and, therefore, the extent to which they represent MSM is unknown. Finally, although pre- cautions were taken to detect and eliminate deception, the study relied on self-reported data that may be prone to error.
Implications
Law has been used to address a number of public health domains (Moulton et al., 2008), including HIV (Gable, Gostin, & Hodge, 2009). However, a number of experts have rejected the establishment of HIV- specific criminal statutes as means to deter HIV transmission (Burris & Cameron, 2008; Burris, Cameron, & Clayton, 2008; Galletly & Pinkerton, 2006; Lowbury & Kinghorn, 2006; Weait, 2007). The results of this study support these claims, as we found no evidence that states with and without such laws differed in HIV risk behavior reported by HIV-positive MSM or MSM in general. Even if the existence of such laws deters a small number of HIV-positive persons from engaging in high risk behavior, there is rising concern about the proper enforcement of such laws. A review of cases involving convictions or prosecutions of HIV-positive persons in England from 2005 to 2008 revealed improper enforcement by police of HIV- specific laws as a result of misunderstandings of such laws, a poor understanding of the complexities of HIV transmission, and what actually constitutes scientific evidence in such cases (Terrence-Higgins Trust, 2009). In conclusion, the results of this and other (Burris et al., 2007) studies fail to provide evidence that criminalization is an effective deterrent to engaging in high risk sexual behavior, while more investigation into the full range of possible effects of such laws is needed.
Acknowledgements
This study was undertaken as part of the ‘‘Structural
Interventions to Lower Alcohol-related STI/HIV,’’ grant
number R01AA01627001, funded by the US National
Institute on Alcohol Abuse and Alcoholism (NIAAA).
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http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.gnpplus.net/criminalisation/index.php?option=com_contenttask=viewid=12Itemid=34 http://www.springerlink.com/content/x7g8g116h38l251r/?p=c46ef3780cc342d2b6b3d05f87006663?=2 http://www.springerlink.com/content/x7g8g116h38l251r/?p=c46ef3780cc342d2b6b3d05f87006663?=2 http://www.tht.org.uk/informationresources/publications/policyreports/policingtransmission950 http://www.tht.org.uk/informationresources/publications/policyreports/policingtransmission950 http://www.tht.org.uk/informationresources/publications/policyreports/policingtransmission950 http://hivlawandpolicy.org/resources/view/456 http://hivlawandpolicy.org/resources/view/456 http://data.unaids.org/pub/BaseDocument/2008/20080731_jc1513_policy_criminalization_en http://data.unaids.org/pub/BaseDocument/2008/20080731_jc1513_policy_criminalization_en http://data.unaids.org/pub/BaseDocument/2008/20080731_jc1513_policy_criminalization_en http://www.who.int/hiv/pub/towards_universal_access_report_2008 http://www.who.int/hiv/pub/towards_universal_access_report_2008Copyright of AIDS Care is the property of Routledge and its content may not be copied or emailed to multiple
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O R I G I N A L P A P E R
Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status
Ann Gillard • Mark F. Roark
Published online: 29 June 2012
� Springer Science+Business Media, LLC 2012
Abstract Disclosure of HIV status is an important topic
for youth living with HIV/AIDS, yet theoretical frame-
works for understanding HIV disclosure motivations have
been poorly applied. Self-determination theory (SDT)
proposes that people are at optimal functioning when they
are engaging in activities that are interesting and enliven-
ing. This study utilized SDT to understand young adults’
motivations to disclose their HIV status. Interviews and
observations were conducted with nine youth aged 17–19
and two adult staff. Results indicate that SDT is useful for
understanding types of motivation (i.e., amotivation, con-
trolled, and autonomous motivation) to disclose. Amoti-
vation was the most common type of motivation, and came
from two recursive sources: fear of stigma and previous
experiences of others disclosing without their consent.
Controlled motivation to disclose occurred when partici-
pants were motivated to disclose because of reasons related
to other people, rather than internal or personal reasons,
and included the reasons of wanting to gain a closer rela-
tionship, reciprocate a shared secret, for psychological or
emotional relief, and for attention. Autonomous motivation
included two themes: the life perspective that ‘‘Having
HIV is just part of who I am,’’ and valuing educating others
because education was perceived as important and
beneficial to others. This study extends SDT into the
domain of HIV disclosure in older adolescents. People
providing guidance and support to older adolescents with
HIV/AIDS can use SDT to understand different motiva-
tions
to disclose.
Keywords Youth with HIV/AIDS � Self-determination theory � Motivation � HIV disclosure � Older adolescents
Introduction
Disclosing one’s positive HIV status is typically difficult
and fraught with concern and fear regarding the outcomes
of the disclosure, which has some bearing on the motiva-
tion to disclose. While certain psychological and social
assets can buffer or ameliorate the worry, disclosure
remains a salient issue for people
living with HIV/AIDS.
Adolescents living with HIV/AIDS are especially vulner-
able to the omnipresent concern about disclosure due to
changes related to their ongoing social, psychological, and
cognitive development. Over the last 15 years, advances in
biological and behavioral treatments of HIV infection have
led to longer life spans, improved quality of life, and fewer
psychiatric problems for youth with HIV (Donenberg
2005). Still, disclosure remains a topic of major concern in
adolescents’ lives (Hosek et al. 2000; Wiener and Battles
2006) and the people who support them.
HIV Disclosure
HIV disclosure has been examined in a number of studies,
and some of these studies included influences on motiva-
tions to disclose. In a concept analysis, HIV disclosure was
found to be characterized by the attributes of: experiencing
an event, communicating something, timing, contextual
environment, protecting someone, relationship status and
improving something or being therapeutic (Eustace and
A. Gillard (&) Social Sciences Department, Springfield College,
263 Alden Street, Springfield, MA 01109, USA
e-mail: anngillard@gmail.com
M. F. Roark
Department of Health, Physical Education, and Recreation, Utah
State University, 7000 Old Main Hill, Logan, UT 84322, USA
123
J Child Fam Stud (2013) 22:672–683
DOI 10.1007/s10826-012-9620-2
Ilagan 2010). Eustace and Ilagan (2010) also found that the
process of HIV disclosure contained antecedents and con-
sequences. Antecedents included disease acceptance, desire
to protect others and gain support, and individual, familial,
community, and social factors. Consequences could be
positive or negative regarding family, sexual partners,
friends, and community. In a qualitative study of South
African adolescents with HIV (Petersen et al. 2010), family
and peer support was an important factor in participants’
coping with their HIV status. Petersen et al. also found that
although HIV disclosure to schools by caregivers generally
resulted in greater academic support for the adolescents,
disclosure through gossip and rumor had the potential to
result in stigma and discrimination.
Without social support, youth with HIV can experience
feelings of social isolation, anxiety, and severe loneliness
(Travers and Paoletti 1999). In a meta-analysis of 21 studies
with 4,104 participants conducted by Smith et al. (2008), the
relationship between social support and disclosure across the
studies was significant but small. Smith et al. (2008) con-
cluded that when people living with HIV felt that HIV carried
a greater stigma, they reported less social support, and this
relationship was moderate. Greater HIV stigma also corre-
sponded to fewer disclosures of one’s HIV status. Although
this relationship was small, it was stable between studies.
Stigma is a major constraint to HIV disclosure.
Other factors influencing HIV disclosure have been
examined. In a qualitative study on why 29 adolescents
aged 12–20 disclosed their status, Michaud et al. (2009)
found no associations between the participants’ gender,
age, nationality, and family composition, and the extent
and target of disclosure. Michaud et al. also found that
younger adolescents’ disclosure was linked to that of the
parents, while older adolescents tended to independently
decide how and to whom to disclose. Decisions about
disclosure linked mostly to adolescents’ own representation
and family situation, and not to their level of maturity.
Michaud et al. (2009) found that there were two primary
types of disclosure: passive and active. Passive disclosure
related to situations (especially for younger adolescents)
when parents or caregivers handled the disclosure them-
selves or advised the adolescents how to disclose (such as
to teachers). Active disclosure related to adolescents
deciding to reveal their HIV status directly, such as to
friends or sexual partners. Understanding factors that
facilitate or inhibit adolescents’ self-determined motivation
to disclose is crucial for supporting the work of people who
serve youth with HIV/AIDS.
Self-Determination Theory
One theory that can be utilized to understand youths’
motivations to disclose their status to others is Self-
Determination Theory (Deci and Ryan 1985; Deci and
Ryan 2000). Self-determination theory (SDT) examines the
psychological processes that occur within the social con-
text and how these processes influence one’s reasons or
motivation to act or behave. In a HIV disclosure context,
we propose that self-determination represents motivation to
disclose that exists along a continuum varying along the
lines of motivation that more or less comes from the self,
promotes a sense of an internal locus of control, and is
regulated based on personal importance, conscious valuing,
and inherent satisfaction.
Six dimensions of motivation exist along the SDT
continuum, as seen in Fig. 1. Several scholars have
grouped the six types of motivation into three categories
for ease and simplicity in examining SDT-related concepts
(e.g., Boiche et al. 2008; Fortier et al. 2009; Gegenfurtner
et al. 2009; Ntoumanis and Standage 2009). The three
categories are amotivation, controlled motivation, and
autonomous motivation. Amotivation is a state in which
people do not act, act without intent, or lack the intention to
act (Pelletier et al. 2001) because the related behavior or
outcome is not valued. In the context of HIV disclosure,
amotivation reflects a lack of purpose or plan to disclose
status for any reason. Controlled motivation consists of
external and introjected motivation, and occurs when one
does something for an instrumental or non-internal pur-
pose. In the context of HIV disclosure, controlled moti-
vation reflects disclosing with approval-based pressure
with the purpose of gaining something from outside the
self, such as increased relationship status. Autonomous
motivation consists of identified, integrated, and intrinsic
motivation, and occurs when one does something because
the activity is inherently satisfying, enjoyable, and in line
with one’s value system. In the context of HIV disclosure,
autonomous motivation reflects disclosing because having
HIV is part of oneself and disclosure reflects the value and
goal of helping others. Autonomous and controlled moti-
vation types are not proposed to be mutually exclusive, but
are two independent types of orientations or constructs
(Boiche et al. 2008). In this study, autonomous motivation
reflects planning to disclose for purposes related to per-
sonal identity and values, and controlled motivation reflects
planning to disclose because disclosure would be expected
within the context of the relationship, not because disclo-
sure is valued for its own sake. The third type of motiva-
tion—amotivation—reflects lack of interest in or planning
to disclose.Types of motivation have consequences for action. As
Ryan and Deci (2000, p. 69) explain, ‘‘Motivation pro-
duces.’’ In this study, the product of motivation is HIV dis-
closure (which could have positive or negative outcomes). In
the context of HIV disclosure, autonomous motivation pro-
duces the intent to disclose for the sake of disclosure,
J Child Fam Stud (2013) 22:672–683 673
123controlled motivation produces the intent to disclose for the
sake of relationship status, and amotivation produces a lack
of disclosure. Regulatory processes (i.e., how outcomes are
pursued; Deci and Ryan 2000) for amotivation include the
experiences of feeling non-intentional, non-valuing,
incompetence, and a lack of control. Controlled regulatory
processes include the experiences of feeling compliance,
mostly external rewards and punishments, self-control, and
ego-involvement. Autonomous regulatory processes include
the experiences of feeling personal importance, conscious
valuing, congruence, awareness, synthesis with the self,
interest, enjoyment, and inherent satisfaction.
A wealth of research has demonstrated that more auton-
omous motivation is linked to better outcomes in a variety of
life domains (e.g., Boiche et al. 2008; Ntoumanis and Stan-
dage 2009; Smits et al. 2010; Soenens and Vansteenkiste
2005). SDT has been applied in a number of contexts such as
youth recreation (Baldwin and Caldwell 2003), sports (Spray
et al. 2006), education (Gegenfurtner et al. 2009), summer
camp (Roark et al. 2010), psychopathology (Niemiec et al.
2006), and work (Gagne and Deci 2005). However, SDT-
based studies on motivation have not been applied in the area
of HIV-status disclosure for youth. Applying SDT to HIV
disclosure for adolescents can provide a framework for
understanding this phenomenon.
Self-Determination Theory and HIV Disclosure
Individuals who regulate their behavior autonomously
choose to do so because of the personal importance of the
behavior for their health (Williams et al. 1998). Uysal et al.
(2010) conducted a SDT-based study on self-concealment
in a sample of mostly female college students. Self-con-
cealment was defined as the ‘‘tendency to keep distressing
personal information secret’’ (Uysal et al. 2010, p. 187),
and had a direct negative association with well-being.
Additionally, the researchers found that the association
between self-concealment and well-being were valid regard-
less of personality differences. However, the connection
between Uysal et al.’s study and the present study is ten-
uous because Uysal et al.’s sample included mostly female
college students and included measures about concealing
or sharing general personal information. Disclosure of HIV
status in particular is arguably more fraught than an ori-
entation to share or conceal general problems in one’s life.
While other SDT-based research has addressed the topics
of HIV medication adherence (Kennedy et al. 2004; Lynam
et al. 2009) and distress and well-being of gay men with
HIV (Igreja et al. 2000), to our knowledge, none have
addressed HIV
disclosure in older adolescents.
Accordingly, this study aimed to utilize SDT to under-
stand older adolescents’ motivations to disclose their HIV
status, using qualitative methods (Patton 2002; Yin 2003).
This study was grounded in previous research on the
developmental outcomes of summer camp participation
sponsored by an AIDS foundation in a major southern city
during 2007 and 2008 (Gillard et al. 2010, 2011). Although
not a focus of the previous research, the theme of HIV
disclosure emerged from youth participant data as an area
in need of further investigation. Qualitative approaches to
SDT (i.e., Dawes and Larson 2011; Fortier and Farrell
2009; Oliver et al. 2008; Perlman and Goc Karp 2010) have
been much less widely used than quantitative approaches,
and qualitative approaches were appropriate in this study
because of the focus on understanding motivations for HIV
disclosure in older adolescents.Method
Procedures and Participants
The Springfield College Institutional Review Board
approved the study, and the AIDS foundation management
staff provided permission to conduct this research with
program participants. Data were collected at a program
operated by the AIDS foundation that was held in June
Intrinsic MotivationExtrinsic Motivation
Amotivation
Intrinsic Regulation
External Regulation
Introjected Regulation
Identified Regulation
Integrated Regulation
Non- Regulation
Most Self-Determined
Least Self-Determined
Fig. 1 The types of motivation and regulation within self-determination theory, along with their placement along the continuum of relative self- determination (Deci and Ryan 2008a)
674 J Child Fam Stud (2013) 22:672–683
1232010 and served 41 young adults aged 16–19 who were
selected through consultation with their caregivers and
health care providers and who voluntarily chose to attend.
Participant observations and semi-structured one-on-one
interviews with nine youth participants aged 17–19, and
interviews with two adult leaders were used to gather data.
The first author was a mentor in the program, which
entailed supervising participants throughout daily activi-
ties, driving participants to activities, and engaging in
activities such as discussions and educational and motiva-
tional workshops.
Prior to the first day of the program, the AIDS founda-
tion sent consent forms to parents and caregivers, and
collected signed forms upon participant arrival. On the first
night of the program, the first author explained the purpose
of the study to the group and that she would be approaching
several participants throughout the week to inquire about
their potential participation in interviews. The program
director and first author consulted about which participants
to approach for interviews to ensure a representative
sample of a range of attitudes about disclosure, and to
ensure that only those participants under age 18 who had
parental consent to participate would be approached. The
attitudes ranged from non-disclosed (except to health care
providers) to public disclosure. Throughout the program,
the first author approached individuals for interviews, and
those under age 18 provided assent if they had consent
forms signed by their parents or caregivers, or signed
consent forms if they were 18 or older. Nine participants
agreed to participate and none refused.
Semi-structured interviews lasted 10–60 min each.
Participants who were primarily amotivated to disclose
their HIV status gave shorter interviews, and participants
who had more of a range of motivations to disclose pro-
vided longer interviews. Interviews were typically con-
ducted in a quiet place in sight of, but out of earshot of
other participants. Examples of interview questions inclu-
ded: ‘‘Approximately how many people know about your
HIV status? How did they find out? What were their
reactions? What influenced your decisions to talk to people
about your status? What are your opinions about disclosing
your status in public, such as speaking in front of a group,
writing an article, or other ways?’’
See Table 1 for a summary of interview participants,
their demographic information, and their primary motiva-
tion types. The demographic and disclosure profiles of the
interview participants reflected those of the overall pro-
gram. Of the interview participants, three did not willingly
disclose their status to people outside of the program, three
disclosed to close friends and family, two disclosed only to
close family, and one disclosed frequently and publicly.
Participant observations centered on topics immediately
or tangentially connected to disclosure, such as youth-led
discussion workshops about disclosure held in meeting
rooms at the residence hall where the participants stayed
throughout the program, and the group’s visit to a city
council meeting where the AIDS foundation (but not
individual participants) was publicly recognized by the
council. The first author also recorded observations of
unplanned and unexpected situations regarding disclosure,
such as when the group attended a banquet at a restaurant
with members of the public in attendance, and one par-
ticipant became distraught because she believed that a
guest speaker identified members of the group as having
HIV. The purpose of the participant observations was to
triangulate the data and reduce the likelihood of misinter-
pretation, clarify meaning, and bring credibility to the
findings (Patton 2002). Participant observation data were
compared to interview data to verify results.
Data Analysis
Data were axially and selectively coded, and categories
were generated that related to the SDT concepts of amo-
tivation, controlled motivation, and autonomous motiva-
tion. Indicators were theoretically sampled that represented
Table 1 Interview participant information
Pseudonym Age Gender, race/ethnicity Perinatally or
behaviorally infected?
Found out status
within previous year?
Predominant type
of motivation
Gordon 17 Male, African American Behaviorally Yes Autonomous
Priscilla 18 Female, African American Perinatally No Controlled
Maribel 18 Female, Hispanic Perinatally No Controlled
Nate 18 Male, Hispanic Perinatally No Autonomous
Sasha 18 Female, African American Perinatally No Autonomous
Steve 18 Male, Hispanic Unknown No Amotivation
Tania 19 Female, African American Unknown No Amotivation
Tyrone 17 Male, African American Perinatally No Controlled
Vincent 18 Male, Hispanic Behaviorally Yes Amotivation
J Child Fam Stud (2013) 22:672–683 675
123the concepts relevant to SDT, and their properties and
dimensions were compared until categorical saturation was
achieved (Strauss and Corbin 1998). The authors engaged
in a process to establish inter-rater reliability that consisted
of multiple readings of coded data and discussions to
establish that the codes related to the data and appropri-
ately represented SDT concepts. The first stage of the
process resulted in approximately 85 % agreement. After
consultation, the authors revised their codes to reflect
100 % agreement.
Construct validity was established in three ways to form
correct operational measures of the concepts of self-
determination, motivation, and disclosure: multiple sources
of evidence, chains of evidence, and member checks. First,
multiple sources of evidence (i.e., observations and inter-
views with adults and youth participants) were collected
and the researchers confirmed their convergence on the
same set of findings. Second, an established chain of evi-
dence was created through links between the questions
asked, data collected, and conclusions drawn to ensure a
logical, sequential process that could be anticipated and
reproduced by external auditors. Third, to improve the
credibility of the findings, the first author conducted
member checks with most of the participants from the 2010
program during focus groups held during the 2011 pro-
gram. Participants confirmed that the three types of moti-
vation related to their behaviors and attitudes about
disclosure. The analytic strategy to ensure internal validity
involved relying on the theoretical propositions of SDT to
make sense of the findings, and employed a constant
comparison approach to analysis (Strauss and Corbin
1998). Finally, this study includes a documented auditable
database available upon request to provide reliability. The
authors remained aware and reflexive of potential biases
throughout the study by keeping a researcher journal and
discussing findings with others who work with and conduct
research with youth with HIV/AIDS, and on SDT.
Results
Results of the data analysis revealed that participants
shared both actual past experiences or behaviors, and
intentions or attitudes about disclosing. The results focus
on actual past behaviors, but it is important to note that
attitudes were integral to participants’ explanations about
their motivations to disclose.
AmotivationAmotivation occurs when individuals experience a lack of
intention and motivation to act (Deci and Ryan 2008a).
Explanations of why they felt amotivated to disclose were
the most frequently discussed by all participants, even
those who indicated that they were autonomously moti-
vated to disclose. Amotivation came from two recursive
sources: fear of stigma and previous experiences of others
disclosing without their consent. When others disclosed
without their consent, participants were less likely to dis-
close because they perceived a loss of control over infor-
mation shared and imagined negative reactions, further
reinforcing their amotivation to disclose. Results related to
amotivation had a global quality, wherein the participants
explained their lack of intention to disclose to people in
general, not specific and known people.
Participants reported feeling amotivated when others
disclosed their status for them, without their permission.
Even though participants wished to keep their status private
(i.e., ‘‘It’s my business’’), they often had no perceived or
real control over others’ actions. Peers and parents or
caregivers sometimes disclosed participants’ statuses
without their consent, leaving the participants to handle
whatever fall-out occurred and often fracturing the rela-
tionships. From observations of discussions about disclo-
sure, it appeared that there were slightly more instances of
disclosure without participant consent from parents and
close family members than by friends or peers. The neg-
ative reactions to disclosure thwarted the participants’
social-contextual environment that could have supported
autonomous motivation.
A participant in a group discussion about disclosure
described how she felt when her aunt told her that her
mother told her about her status: ‘‘It’s my business. For her
to tell her [shakes head and sucks teeth]. You can’t tell my
business, especially to someone I don’t like.’’ The partic-
ipant expressed bitterness about the incident that reinforced
her lack of intention to disclose to others; she believed that
if she told others, they might tell others without her per-
mission as her mother had done. ‘‘Vincent’’ provided this
experience at school as the reason for why he did not
disclose his status.
I moved over here to go to high school, and my dad
told my teachers, or someone in the school and it got
around, and all the kids were messing with me. Like I
went to school, I wasn’t expecting it. I went to school
one day and it was like that. They would make
comments in front of me, like loud enough so I could
hear, like ‘be careful, I heard that guy’s got a disease,
be careful, don’t eat at the same table because you
might get what he’s got.’ Then little by little they
started [saying] ‘‘HIV and AIDS.’’
Participants also discussed reasons they were amotivat-
ed to disclose because of specific examples of previous
experiences in which the person to whom they disclosed
reacted in negative ways. Implicit in these descriptions was
676 J Child Fam Stud (2013) 22:672–683
123the belief that if their closest and caring family members
would reject them, they could expect nothing more from
people less close. For example, Vincent explained that his
father used to ‘‘give me hugs, kisses, take me out. But after
all this, everything stopped.’’ Later in the interview, Vin-
cent described his family interactions and said, ‘‘For a
while, they kind of rejected me and would keep their dis-
tance,’’ and did not want Vincent to touch his baby cousin.
Stories were common of family rejection based on inac-
curate knowledge of HIV transmission. ‘‘Sasha’’ expressed
anger and frustration about her grandmother over the years:
The only person who didn’t accept it [having HIV]
was my grandma, and she’s really distant from me.
She just started hugging me like this year ‘cause
[before] she thought she would get it. I remember
when we were little and we were at the pool and she
wouldn’t get in the pool ‘cause she thought she could
catch it thataway.
Hearing other people’s negative stories of disclosure
also promoted participants’ amotivation to disclose. For
example, while discussing the effects of her participation at
a camp for youth with HIV/AIDS on her decisions to dis-
close, ‘‘Maribel’’ explained, ‘‘It more scared me sometimes
though, all the stories that I heard [at camp]. So I was
always more cautious.’’ Maribel did not want those nega-
tive stories and consequences to happen to her, further
reinforcing her amotivation.
‘‘Gordon’’ summarized the attitude of many of the
program participants about why they had no intentions to
disclose, ‘‘I feel like, friends, especially the school I go to,
you tell one person somebody something, it go to one
person and the next person and it come back. And then you
never know how people gonna take it.’’ When asked why
they did not tell people their status, Gordon replied
‘‘Rejection,’’ and Maribel replied, ‘‘There are judgments
out there.’’ ‘‘Priscilla’’ was asked if she would ever speak
in public about her HIV status, and replied, ‘‘No. Because
the world is so cruel and I can only take so much. I can
only take so much.’’ Priscilla had recently graduated high
school after enduring 4 years of persistent stigma and
negative interactions because of her known positive HIV
status. Predominately amotivated participants believed that
they had a lack of control over the transmission of
knowledge about their HIV status, and over others’ reac-
tions to learning the news, so they had a lack of purpose or
plan to disclose status for any reason.
Controlled Motivation
Controlled motivation ‘‘involves behaving with the expe-
rience of pressure and demand toward specific outcomes
that comes from forces perceived to be external to the self’’
(Deci and Ryan 2008a, p. 14). Controlled motivation con-
sists of both external regulation in which one’s behavior is
controlled by external factors related to reward or punish-
ment, and introjected regulation in which the behavior
is related to avoidance of shame, approval-seeking, and
conditional self-esteem (Deci and Ryan 2008b). Results
indicated that controlled motivation to disclose HIV status
occurred when participants were motivated to disclose
because of reasons related to other people, rather than
internal or personal reasons. Controlled motivation to dis-
close HIV status included the reasons of wanting to gain a
closer relationship, reciprocate a shared secret, for psy-
chological or emotional relief, and for attention.
Disclosing to gain a closer relationship was the most
common theme in the category of controlled motivation.
Priscilla explained, ‘‘When I get ready to tell someone,
mainly it’s because I’m in a relationship with them … because they wanted to be intimate.’’ Some participants
had ‘‘scripts’’ for disclosing, such as ‘‘Nate’’ who
explained, ‘‘Like, before I actually become officially, they
become officially my friend friend, I’ll kinda test them
out.’’ Maribel used a similar strategy to disclose, ‘‘I used
the whole hypothetical method, like ‘What if I told you
this, or what if I told you that?’ See how the person
responds to that to decide if I really want to come out and
tell them.’’
Often, participants discussed their attitudes about dis-
closing to gain a closer relationship. Vincent discussed
what it might be like making friends and disclosing to them
in college: ‘‘If they’re a good friend they have a right to
know so they can be a support system or they can keep
their distance from me or whatever.’’ Gordon explained
how relationships could be tested by disclosing: ‘‘If they
really love and care about you, they want to be with you.
But if they leave you, you know how they really feel. If
they really care, they’ll stay.’’
The theme of ‘‘reciprocity’’ emerged in several inter-
views and group discussions, and participants reported that
they often disclosed their status to another individual
because that person had first disclosed something private or
sensitive to them. Participants seemed to experience some
pressure to disclose to someone else, based on their per-
ceptions of the relationship, but disclosure was still vol-
untary to a limited degree. Feelings leading up to the
disclosure conversation were reported as containing a sense
of pressure or conflict, and lack of integration or comfort
with the self.
One program participant shared her criteria for dis-
closing her status in romantic and potentially sexual rela-
tionships: ‘‘If you’re together for a month, that shows a
level of commitment and you have a trust basis.’’ Priscilla
conveyed a specific situation: ‘‘I told this one dude because
he shared some personal information about being raped or
J Child Fam Stud (2013) 22:672–683 677
123whatever, and I told him that ‘cause I guess I feel that I was
obligated to tell him that for some reason.’’ Later Priscilla
discussed what happened for her in a couple of her rela-
tionships: ‘‘You feel like he’s telling you everything about
him, and you’re telling him everything too, but if you don’t
tell him this it’s like a weight on your shoulders. You like,
‘I have to, I have to.’’’
A few instances emerged of disclosing for psychological
or emotional relief. Maribel expressed feelings of obliga-
tion to disclose her status to her friends as a way of
explaining why she took medicine while on overnight trips
or visits: ‘‘I didn’t want them to think I was taking drugs or
anything [laughs].’’ Telling her friends her status relieved
the burden of ‘‘sneaking around.’’ She explained that she
told her friends because ‘‘I didn’t see the point of that when
I already trusted them. So I might as well just tell them, and
I did so they would know and everything.’’ Similarly,
‘‘Tyrone’’ discussed in his interview his primary reason to
disclose to his best friend: ‘‘Get the weight off my shoul-
ders, then I would know what he was gonna say.’’ An adult
mentor explained that she observed that participants dis-
closed to cause ‘‘whatever questions people are asking to
stop.’’ Gordon disclosed to his guidance counselor to
relieve the pressure created as the counselor kept asking
him how he felt about being sick and sharing with Gordon
his own personal experiences with his father who had HIV.
Data analysis of controlled motivation to disclose
resulted in some minor themes that were inherently
untestable because the source of the information was sec-
ond-hand. First, disclosing to receive attention included the
receipt of awards and recognition for educating people
about HIV, disclosing for ‘‘shock value,’’ and legal obli-
gations to disclose. During an interview with Nate (who
expressed primarily autonomous motivation to disclose his
status), he shared that he had received several awards for
his volunteer work in educating people about HIV/AIDS.
He relayed in an interview and with another adult mentor
that his mother suggested that getting awards and recog-
nition was why he disclosed so publicly. However, Nate
railed against that accusation and was adamant that per-
sonal recognition or awards were not his purposes in his
public disclosure efforts. Additionally, one program par-
ticipant was perceived by adult mentors to disclose his HIV
status to ‘‘shock’’ others. According to one of the adult
mentors who knew him for several years, this participant
disclosed at assemblies at his school to gain social status,
pity, and attention. The adult mentor explained that for
some youth, ‘‘I think for some of them it’s reaching out.
The need of love. And if they disclose, would that person
feel sorry for them, and show them more love?’’ Finally,
during workshops with facilitators, several participants
raised questions about the requirement to disclose their
status to sexual partners because of legal obligations, which
reflected the potential for additional aspects of controlled
motivation to disclose. In sum, participants with predomi-
nantly controlled motivation disclosed because disclosure
was expected within the context of the relationship, not
because they valued disclosure.
Autonomous Motivation
Autonomous motivation ‘‘involves behaving with a full
sense of volition and choice,’’ (Deci and Ryan 2008a, p. 14).
Autonomous motivation consists of identified/integrated and
intrinsic regulation. Identified/integrated regulation refers to
behavior that, while somewhat influenced by extrinsic fac-
tors, is primarily sourced within the individual because of
valuing of activities that have personal importance or
because activities reflect their set of goals and values.
Intrinsic regulation refers to behavior done because of the
positive feelings associated with the behavior itself.
The category of autonomous motivation was the
smallest of all categories of motivation in terms of par-
ticipants sharing actual previous experiences. Rather, sev-
eral participants speculated on what they might do in the
future. Autonomous motivation included two themes: the
life perspective that ‘‘Having HIV is just part of who I am,’’
and valuing educating others because education was per-
ceived as important and beneficial to others. Education
consisted of talking to friends or strangers about HIV/AIDS
in general or in relation to participants’ personal experi-
ences. However, although the disclosure occurred by
choice, participants did not indicate enjoying or feeling
comfortable with the process of disclosure (with the
exception of Nate, discussed below). Rather, autonomously
motivated disclosure seemed to be a hardship that was
ultimately worthwhile because of its integration with the
self and alignment with personal values.
A few participants discussed their attitudes regarding how
living with HIV was integrated into their lives. Nate
explained his approach: ‘‘It’s kind of easy for me to tell
people because I’m a real person and if you don’t like me for
who I am, then obviously you might miss out on a very cool
person and maybe a longtime friend.’’ He also explained that
‘‘HIV’s not a death sentence, it’s a lifestyle … Just because I have HIV doesn’t mean anything else … I’m not any dif- ferent from anyone else.’’ Two participants discussed what
they thought about Nate’s approach and suggested that they
wanted to adopt his attitude. For example, Gordon shared his
plans for when he returned to school in the fall: ‘‘I’ll be … saying ‘So what? I have it. I’ve been going to school with you
all year, and I’m still here. I eat so much food, I’m healthy.’
That’s why I think now I can tell people.’’
Some participants perceived disclosure as a necessary
opportunity and responsibility to educate others on an
important and potentially life-saving topic. Some interview
678 J Child Fam Stud (2013) 22:672–683
123participants shared that they had used or planned to use the
opportunity to educate others about HIV/AIDS as a
springboard for disclosing their status. ‘‘Tania’’ explained
that she wanted to tell more people about her status because
she was ‘‘mad that people are clueless and ignorant.’’ Nate
frequently wore tank tops that revealed on his shoulder a
3-inch by 1-inch red AIDS ribbon tattoo. He used the
display of his tattoo as an invitation for others to ask him
about it, to talk about his status and how he acquired HIV,
and to answer questions. Nate frequently spoke to high
school classes and community groups about HIV/AIDS.
Discussing his decisions to disclose his status while
teaching classes about HIV/AIDS, Nate said, ‘‘I have the
choice not to tell them or to tell them. But I want to. I
should tell them because they’ll get more out of it [if I tell
them about my status], but I really don’t have to.’’
Two participants (Sasha and Nate) discussed instances
of public disclosure. Sasha discussed what happened when
she allowed her picture to be published on the front page of
a newspaper that mentioned her positive HIV status:
It made me feel better about myself because I don’t
like keeping secrets too much. ‘Cause at times I get
depressed and I keep too much inside and it just
overflows and I will break down. So I just wanted to
let that out, just a little bit.
Later in the interview, Sasha expressed nervousness but
openness to engaging in further public speaking at the
bequest of her doctor; she understood the decision to do so
to be her choice.
Other participants shared that they utilized opportunities
to disclose when the topic of HIV or AIDS emerged in social
situations. Some participants wanted to educate others
because they wanted their friends to know more about their
lives and not be worried for their health. Maribel discussed
the importance of education to reduce stereotypes and mis-
information, ‘‘Like how it can be transmitted. And how
nowadays, especially with technology and medicine, a per-
son can live a relatively normal life, it’s not like they’re in the
hospital or having a hard time.’’ Tyrone speculated on what
would happen when he told his best friend: ‘‘[He will]
probably will have the same response as everybody else, like
‘Oh, are you gonna die?’ Or [I will] have to explain to him the
whole, explain that the virus attacks the immune system.’’
Priscilla explained why it was so important to educate
others: ‘‘So they won’t have to go through the same thing
… So, I would hate that to happen to anybody, even my worst enemy. I wouldn’t wish [HIV] on anybody.’’ Priscilla
shared a story of educating her friend that reflected a
conscious valuing of education:
I told one girl because she was really sexually active
and I was like ‘You have to stop. Because I can sit
here and tell you I have HIV.’ She said ‘Huh?’ I said
‘Yeah. It don’t mean that the person you’re sexually
active with will tell you.’
Sasha referred to her motivation to educate others as
wanting to ‘‘Put out a warning hoping that somebody else
would listen. To help save somebody else.’’ Sasha hoped to
educate others through her poetry so that they would
understand living with HIV/AIDS and ‘‘know how that is.’’
The most autonomously motivated participant was Nate,
as evidenced by his response to a question about what
makes it easier to tell people his status:
HIV is who I am and I do value it, and it’s something
I’ve been taught through my whole life since I got
diagnosed and my mom educated me ever since I was
diagnosed and I’ve been educated on it and it’s been
drilled in my head, like for years, and I research it
myself and I love doing it [educating others].
Nate demonstrated integrated motivation as he
explained his approach to education: ‘‘I’ll take all the
personal questions you want. It can be anything from me
having sex to I want to have a kid when I’m older. I don’t
mind, I will answer them with honesty.’’ In sum, instances
of autonomous motivation to disclose HIV status reflected
motivation that came from within the self, with full choice
and volition, and for purposes related to personal identity
and educational goals.
Discussion
This study utilized SDT to understand young adults’ moti-
vations to disclose their HIV status. The results of this study
indicate that SDT is useful for understanding types of self-
determined motivation (i.e., amotivation, controlled, and
autonomous motivation) to disclose. Amotivation was the
most commonly reported type of motivation, and involved
fear of stigma and rejection based on real or perceived
instances of information shared by others without consent in
personally important social contexts, and feelings of loss of
control over information shared about their status. The
accumulation of negative experiences over time seemed to
reinforce in participants feelings of amotivation. Controlled
motivation involved participants wanting to disclose to gain
a closer relationship, reciprocate a shared secret, for psy-
chological or emotional relief, and for attention. Autono-
mous motivation involved participants’ life perspectives that
‘‘Having HIV is just part of who I am,’’ and having values and
goals to educate others. Given that a fundamental premise of
SDT is that people are naturally inclined toward growth and
well-being, opportunities to experience active or autono-
mous motivation are warranted, especially for adolescents.
J Child Fam Stud (2013) 22:672–683 679
123Disclosing one’s HIV status because of relationship-
related external motivations reflected controlled motiva-
tion. In this study, disclosure was a means to an end for
most participants, and was not done for any inherent sat-
isfaction found in disclosure. Therefore, we conceptualized
controlled motivation as a type of motivation intended to
bring others closer. That is, the motivation to disclose was
controlled by intentions to manage relationships with oth-
ers. This particular finding extends the concept of con-
trolled motivation in the field of SDT. The motivation to
disclose to deepen a relationship, reciprocate a shared
secret, to gain psychological or emotional relief, and to
garner attention has strong connections to other research on
social support and HIV disclosure. For example, social
support in the context of HIV/AIDS can be important for
health outcomes because members of an individual’s social
network who are aware of individuals’ HIV status can
provide encouragement and support for medication adher-
ence (Roberts and Mann 2000).
Disclosing one’s HIV status for inherent personal sat-
isfaction reasons reflected autonomous motivation. In this
study, disclosure was personally valuable because of its
relation to personal identity and as a means to educate
others about HIV/AIDS. Therefore, we conceptualized as
autonomous motivation this type of motivation that was
inherently personal. The helping attitude reflected in the
autonomous motivation to disclose as a means for educa-
tion about HIV/AIDS can promote feelings of closeness
with others, which can be important for youth feeling
isolated because of their HIV status. Participants’ expla-
nations of motivations to disclose as a means to educate
others about HIV/AIDS relates to SDT-based research on
volunteering. Thoits (1994) suggested that people with
greater personal well-being tend to have more volition to
volunteer, such as those with positive personality attributes
(e.g., happiness, self-esteem, low depression). Addition-
ally, people with more social resources are more likely to
volunteer and this work in turn promotes further well-being
(Mellor et al. 2009). Weinstein and Ryan (2010) suggested
that autonomous motivation for helping provides benefits
for both helper and recipient because both experience
greater need satisfaction. Autonomous motives underlying
adolescents’ identity styles have been shown to positively
relate to commitment and personal well-being, whereas
controlled motives negatively relate to psychosocial
adjustment outcomes (Smits et al. 2010).
In an evaluation of the impact on HIV-positive people of
public disclosure of HIV status, Paxton (2002) found that
decreasing stigma and stopping new infections were
equally strong motivators to becoming community AIDS
educators. Participants reported that public disclosure led
to a diminution of discrimination, was extremely reward-
ing, and led to a less stressful, more productive life and
improved well-being. Paxton’s findings, combined with the
findings from this study, suggest a need for further research
on the benefits associated with autonomous motivation in
the context of public HIV disclosure. For example, Nate
and Sasha (and a couple of other program participants)
appeared to demonstrate indicators of well-being, such as
hope for the future and desire to improve their communi-
cation skills through formal education with the purpose of
educating others.
Implications
The findings from this study indicate implications for
policy and practice for people who work with and care for
youth living with HIV/AIDS. Specifically, practitioners can
utilize these findings to gain understanding of the lived
experiences of young people with HIV/AIDS that can
inform counseling and programming. Through under-
standing the issues related to self-determined motivation to
disclose status, practitioners can develop empathy and
sensitivity, and can better support clients as they explore
issues, develop goals, become empowered, and enact
decisions based on clarified personal values.
Given that autonomous motivation closely relates to
enhanced physical, emotional, and psychological well-
being in domains other than HIV disclosure, practitioners
should work with clients to identify potential positive
social and emotional benefits of disclosure, such as by
learning about others’ positive experiences. Of course, it is
imperative to compassionately respect the type of moti-
vation to disclose that individuals possess; disclosure can
be a life or death decision for some youth. Still, disclosure
can have numerous benefits outside of the self as well,
especially regarding the decrease and elimination of stigma
throughout communities. More research is needed about
the conditions, contexts, and situations that lead to auton-
omous motivation to disclose, and how to create these
conditions that support growth and well-being.
When parents (and peers) tell others without permission,
it breaks the security of attachment and brings into question
one’s sensitivity and responsiveness (LaGuardia et al.
2000). Emotional reliance (willingness to turn to others in
emotionally salient situations) is associated with greater
well-being and varies across different relationships, cul-
tural groups, and gender (Ryan et al. 2005). Given this,
counseling and support policies for families should make
explicit the potential negative consequences of disclosing
youths’ status.
We urge practitioners to carefully consider the
assumption that frequent and public disclosure is most
beneficial for people living with HIV/AIDS. This might
be true on a population-level. However, in this study,
680 J Child Fam Stud (2013) 22:672–683
123individuals who were amotivated to disclose their status
seemed likely to experience harmful outcomes of pressured
disclosure such as loss of trust and self-esteem or loss of
significant personal relationships, and amotivation contin-
ued in a reinforcing cycle because of these concerns.
People living with HIV can have difficulty maintaining
close personal relationships because of stress associated
with the diseases and rejection from close ties (Brashers
et al. 2004). Youth with HIV/AIDS are wise to consider the
quality of the relationship before disclosing and make
‘‘educated guesses’’ about the potential trajectory of their
relationships (Poindexter and Shippy 2010).
People within the support systems of youth with HIV/
AIDS could increase their discussions of disclosure tech-
niques and planning. Supporting youth in developing a
healthy social identity could include discussions about
strategies to challenge stigmatizing attributions projected
onto people living with HIV/AIDS. Bakeera-Kitaka et al.
(2008) found that young people with HIV in their study
lacked specific behavioral skills, such as disclosure of HIV
status to their sexual partners, and this closely linked to
fear of rejection and stigma. Sturdevant et al. (2001) found
that without disclosure, less condom use was reported, even
controlling for the perception that the sexual partner was
infected. Garnering positive social support can be an
important life skill and create greater protective factors for
youth (Lam et al. 2007).
Limitations to this study exist. This study utilized a
broad distinction between three primary motivation types
rather than precise distinctions between the six types of
motivation in the SDT continuum. Additionally, this study
is limited in generalizability because of the small sample
size of nine participant interviews. However, the conver-
gence of data from participant observations and interviews
with staff members in conjunction with member checks
and other means to improve reliability and validity of the
qualitative adds rigor to the findings.
Future research is needed. More research should be
conducted to quantitatively measure the types of motiva-
tions to assess their prevalence in the context of HIV dis-
closure. Longitudinal studies should be conducted to
explore if and how self-determined motivation to disclose
changes over time. Research should be conducted with age
groups older and younger than adolescents aged 17–19 to
further establish operational constructs of SDT in the
context of HIV disclosure, such as experiences of auton-
omy, relatedness, and competence. Future research should
also include variables related to length of time that par-
ticipants have known their status, and the mode of trans-
mission (i.e., perinatal or behavioral).
This study extends SDT into the domain of HIV dis-
closure in older adolescents. SDT proposes that people are
at optimal functioning when they are engaging in activities
that are interesting and enlivening. Goffman (1963) sug-
gested that deciding to disclose a stigmatizing condition
can transform people from passive recipients of stigma into
an active agents in control of their own lives. This reso-
nates with the basic premise of SDT that ‘‘people are active
organisms, with evolved tendencies toward growing,
mastering ambient challenges, and integrating new expe-
riences into a coherent sense of self,’’ (SDT Overview,
www.psych.rochester.edu/SDT/theory.php). As Paxton
(2002) noted, there is a ‘‘paradox’’ in coming out openly as
an HIV positive person because ‘‘in facing monumental
fear and stigma, one is inevitably liberated from the
overwhelming burden of secrecy and shame, (p. 588).
Disclosure can be ultimately beneficial to all concerned
because it can enrich the disclosers’ lives and help their
communities increase in compassion and care for people
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- Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status Abstract Introduction HIV Disclosure Self-Determination Theory Self-Determination Theory and HIV Disclosure Method Procedures and Participants Data Analysis Results Amotivation Controlled Motivation Autonomous Motivation Discussion Implications References
C O N C E P T A N A L Y S I S
HIV disclosure among HIV positive individuals: a concept analysis
Rosemary W. Eustace & Perla R. Ilagan
Accepted for publication 26 March 2010
Correspondence to R.W. Eustace:
e-mail: rosemary.eustace@wright.edu
Rosemary W. Eustace PhD RN CFLE
Assistant Professor
College of Nursing and Health, Wright State
University, Dayton, Ohio, USA
Perla R. Ilagan PhD RN
Assistant Professor College of Nursing and Health, Wright State University, Dayton, Ohio, USAE U S T A C E R . W . & I L A G A N P . R . ( 2 0 1 0 )E U S T A C E R . W . & I L A G A N P . R . ( 2 0 1 0 ) HIV disclosure among HIV positive
individuals: a concept analysis. Journal of Advanced Nursing 66(9), 2094–2103.
doi: 10.1111/j.1365-2648.2010.05354.x
Abstract Aim. This paper is a report of an analysis of the concept of HIV
disclosure.
Background. There is a growing interest among healthcare providers and researchers
in HIV disclosure as an effective HIV prevention and early disease management ini-
tiative. However, the concept still remains unclear. Conceptual clarity is important for
providing an expanded theoretical definition and understanding of attributes of HIV
disclosure. This information is useful in constructing better HIV disclosure measures
in HIV/AIDS nursing practice and research.
Data sources. A computer search of the following databases was conducted to capture
the meaning and processes of HIV disclosure among HIV-positive individuals:
PubMed, CINAHL and PSYCINFO. Only English language journals were used.
Publication dates of the literature review ranged from 1999 to 2009. The following key
words were used: HIV disclosure, self-disclosure, disclosure and serostatus disclosure.
Methods. The Walker and Avant (2005) concept analysis model (Strategies for
Theory Construction in Nursing, Pearson Prentice Hall, River, NJ, 2005) was used to
guide the analysis process, which was completed in
2009.
Results. The concept analysis revealed that HIV disclosure is a complex process
characterized by the following attributes: experiencing an event, communicating
something, timing, and contextual environment, protecting someone, relationship
status and improving something or being therapeutic. In addition, the process of HIV
disclosure varies across time.
Conclusion. The proposed HIV disclosure attributes provide nursing scholars and
researchers with new directions on how to reframe research questions, develop mea-
surement tools to reflect better the diversity and fluidity of the process of HIV
disclosure among HIV-positive individuals. Policy implications include the need to
develop approaches that protect individual and public rights.
Keywords: concept analysis, HIV disclosure, HIV/AIDS, nursing, theoretical models
Introduction
Since the inception of the HIV epidemic in the early 1980s,
numerous HIV prevention programs and public health
measures have been underway. Countries around the world
continue to adopt effective strategies to prevent new HIV
infections and improve the quality of life of HIV-infected
individuals and their sexual and social networks. New
2094 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd
J A N JOURNAL OF ADVANCED NURSING
strategies that promote early diagnosis and prevention of
HIV infection for HIV-positive individuals are now in place
(Hogben et al. 2007). Within these programs, there is also a
growing emphasis on HIV disclosure among HIV-infected
individuals as an effective prevention and early management
initiative (Pinkerton & Galletly 2007). HIV disclosure is
supported by empirical evidence indicating that a substantial
number of people report high levels of delayed or non-
disclosure by people living with HIV/AIDS (PLWH/A)
(Skogmar et al. 2006). Likewise, the evidence suggests that
HIV-positive individuals continue to engage in unsafe sexual
and drug-sharing behaviours without serostatus disclosure,
which hinders HIV prevention efforts (e.g. Simoni &
Pantalone 2004, Stirratt et al. 2006). To facilitate the
prevention of further HIV transmission and early access to
treatment, HIV/AIDS practitioners need to implement scien-
tific behavioural interventions that focus on HIV disclosure
among PLWH/A. However, to do so, it is important that
they develop a clear understanding of the concept of HIV
disclosure (Sullivan 2005, Greeff et al. 2008). Previous
personal experiences of working with HIV-positive clients
suggest that despite extensive training in HIV testing and
counselling and prevention, the majority of HIV/AIDS
counsellors/case managers are not clear about the underlying
attributes of the concept of HIV disclosure. As a result, it
becomes somewhat difficult to assist HIV positive clients
effectively through the disclosure process (Kalichman et al.
2007). In addition, most empirical studies on HIV disclosure
among PLWH/A subpopulations operationalize this disclo-
sure as simply a dichotomous ‘Yes’ or ‘No’ response (i.e.
disclosed/not disclosed), which does not capture the broader
meaning of the concept. Therefore, the aim of this paper is to
provide nurses with a basic understanding of the meaning
and usefulness of the concept of HIV disclosure by using the
Walker and Avant’s (2005) concept analysis approach.
Expectations of the analysis include proposing a theoretical
definition of HIV disclosure as well as raising awareness of
the attributes, antecedents and consequences of HIV disclo-
sure among nurses. This information will be useful in
constructing better HIV disclosure measures in advanced
HIV nursing practice and research.
Background
The concept of HIV disclosure has its roots in ‘self-
disclosure’. The concept of self-disclosure was originally
developed by Canadian Human Psychologist Sidney Jourard
(Jourard 1958, Jourard & Lasakow 1958), and was simply
understood as a communication approach that involved
sharing information about oneself. The concept has been
adopted in nursing and embedded in the humanistic commu-
nication theory developed by Dr Bonnie Duldt (Duldt 1991,
Duldt & Giffin 1985). According to the theory, self-disclosure,
trust and feedback are central tripods of the interpersonal
communication process. On the other hand, self-disclosure is
also viewed as a risky rejection in terms of telling how one
feels and thinks about certain life events (e.g. a diagnosis of
HIV/AIDS or cancer) (Duldt & Griffin). Unlike cancer,
self-disclosure of HIV/AIDS has enormous risks because of
the stigma that can occur due to blame, shame, fear
and scapegoating (Thorne et al. 2000). This makes the
HIV disclosure concept unique and at the same time
challenging.
Although several models of HIV disclosure have been
proposed, the majority offer a narrow perspective that does
not reflect the broader socio-economic and cultural perspec-
tive of the disclosure process (Zea et al. 2007). For instance,
some scholars have examined HIV/AIDS discourse in the
context of HIV-positive social relationships (Bairan et al.
2007), while others have focused on disease progression and
consequences (Serovich 2001, Serovich et al. 2008). The
disease progression theory suggests that some seropositive
individuals’ decisions to disclose their status occur when the
disease progresses to AIDS, because they can no longer hide
the disease or keep it secret. On the other hand, the
consequence theory suggests that an individual’s decision to
disclose their serostatus occurs after carefully analysing the
anticipated outcomes. Additionally, others have described
HIV/AIDS disclosure by examining the disclosure methods/
strategies (Serovich et al. 2005). For instance, Serovich et al.
(2005) developed a typology that depicted five primary
categories of HIV disclosure among men namely, point-blank
disclosure, indirect disclosure, stage-setting, buffering, and
seeking similar disclosure. Thus, it is apparent that the
validity of the theories and measures employed in HIV/AIDS
disclosure research raises further questions, making it difficult
for researchers and care providers to pursue potential clues
that are critical in supporting the disclosure needs of their
clients (Greeff
et al. 2008).
Data sources
A computer search of the following databases was conducted
to find the meaning and processes of HIV disclosure
among HIV-positive individuals: PubMed, CINAHL and
PSYCINFO. Literature examining HIV disclosure from 1999
to 2009 was reviewed. The following key words were used in
the search: HIV disclosure, HIV self-disclosure, disclosure
and HIV serostatus disclosure. Papers describing the mean-
ing, uses, characteristics, antecedents, consequences, barriers,
JAN: CONCEPT ANALYSIS HIV disclosure
� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2095
process and outcomes of HIV disclosure among HIV positive
individuals were included in the analysis.
Method
The Walker and Avant (2005) concept analysis model was
used to guide the analysis. The model has eight steps:
(1) selecting the concept, (2) determining the aims or purpose
of analysis, (3) identifying uses of the concept, (4) determin-
ing the defining attributes, (5) identifying a model case, (6)
identifying additional cases (e.g. alternative/borderline and
contrary case), (7) identifying antecedents and consequences
and (8) defining empirical referents. The first two steps have
already been covered in the introduction and background
sections above. The other steps are discussed below.
Results
Uses of self-disclosure and HIV/AIDS disclosure
The Merriam-Webster Online Dictionary (2010) describes
disclosure as simply an act or instance of disclosing or
making something known that was previously unknown or
concealed. The term disclosure has been used in the business
and medical literature as a policy tool to protect the public
and improve performance (Repetto 2005). In the medical
literature, disclosure is used to inform consumers about
healthcare issues such as medical errors and diseases/trau-
matic conditions (Bradley & Follingstad 2001, Webster et al.
2009). In nursing, self-disclosure has been used in relation to
therapeutic relationships, especially in mental health nursing
practice (Ashmore & Banks 2002). As a concept, it is defined
as self-awareness (Burnard & Morrison 1992, Newshan,
1998) and may be associated with either a loss (stressor) or
gain (opportunity of) (Chandra et al. 2003b). As an oppor-
tunity, an individual can increase their quality of life through
social, financial, emotional and behaviour gains. As a
stressor, disclosure may be associated with discrimination,
abandonment and stigmatization (Chandra et al. 2003a,
Kalichman et al. 2003). The above-mentioned outcomes of
self-disclosure of HIV serostatus have been conceptualized
through disease progression and consequence theories (Sero-
vich 2001). Empirically, however, these theories continue to
lack explanatory and predictive powers because they have
not been adequately tested among various HIV subpopula-
tions (Simoni & Pantalone 2004).
Thus, HIV disclosure can be defined theoretically as a
complex and multifaceted process of making a voluntary or
involuntary decision about whom to inform about one’s
serostatus, why, when, where and how. Individual factors
(such as self-esteem, self-efficacy, sex, age), relational factors
(e.g. family, partner and community–dyadic relationships)
(Serovich 2001, Simoni & Pantalone 2004) and cultural
factors are critical variables and need to be considered in this
process (Greeff et al. 2008, Mutchler et al. 2008). Theoret-
ical constructs such as perceived antecedents, type of
relationship and positive outcome/expectations about dis-
closing are also important (Sullivan 2005). The literature
describes some unique characteristics or attributes that make
up the concept of HIV disclosure among HIV-positive
individuals. These attributes are summarized in the following
section.
Attributes of HIV disclosure
In summary, the characteristics of HIV disclosure include: (1)
experiencing an event, (2) communicating something, (3)
timing, (4) contextual environment, (5) protecting someone,
(6) relationship status and (7) improving something or being
therapeutic.
Experiencing an event
Disclosure happens when a certain life event is experienced
that influences the feeling(s) or thought(s) of disclosing or not
disclosing it to others. In the case of HIV, the person is faced
with a diagnosis that is seen as shameful and life-threatening
and needs to decide how, when, where, what and to whom to
disclose or not to disclose.
Communicating something
Disclosures cannot happen if there is no communication.
Therefore, the attribute of communication in HIV disclosure
includes the act of telling someone about a life-threatening
and shameful disease that nobody is aware of or suspecting. It
includes the release of a burning issue (Winstead et al.
2002).
Others have defined this process as catharsis, or the oppor-
tunity to ventilate feelings by talking to someone (Derlega
et al. 2004). Making the decision to communicate is a diffi-
cult and personal process. The process of communicating a
sensitive topic such as HIV seropositivity is influenced by
individual and social factors. For the most part, HIV-positive
individuals who intend to communicate their serostatus may
actually decide not to disclose because they lack the strength,
motivation or will-power to do so (Sullivan 2005). This may
happen to people who have low self-esteem or low self-effi-
cacy. Other factors include race/ethnicity, gender and age
(Sullivan 2005), personal childhood experiences with family
secrets and parental silence (Lester et al. 2002), the mode of
transmission (Ko et al. 2007) and medium of communication
(Serovich et al. 2005). For instance, African American and
R.W. Eustace and P.R. Ilagan
2096 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd
Latina HIV-positive individuals are less likely to disclose their
status than their White counterparts (Sullivan 2005, Rice
et al. 2009). Moreover, research indicates that men who have
sex with men (MSM) tend to disclose their HIV status to
friends immediately after obtaining the test result, while
heterosexual men tend to disclose their seropositive status to
family members a few days after the test results are received.
Additionally, injecting drug users (IDUs) have been said to
have the most difficulties in disclosing HIV to others (Ko
et al. 2007). As for the medium of communication, point-
blank and direct disclosures have been the most commonly
used strategies (Serovich et al. 2005).
Timing
The timing of HIV disclosure refers to the social meaning of
when and why individuals decide to disclose their serostatus
to others. HIV-positive individuals may become more
accepting or open about their illness over time but struggle
when it comes to whom and when to tell (Winstead et al.
2002). Empirical evidence indicates that disclosure becomes
easier the longer someone has been living with HIV, because
they become more open and comfortable with the HIV status
or can no longer hide the symptoms (Serovich 2001,
Winstead et al. 2002, Batterham et al. 2005). For example,
the longer it takes to disclose, the more risky it might be in
terms of maintaining trusting relationships. When partners
feel betrayed, they are more likely to end the relationship.
Concerns over timing of disclosure and sexual activity,
however, are still unclear (Simoni & Pantalone 2004). How
does this work for HIV-positive individuals? Do they engage
in safer sex before or after disclosure? Surprisingly, delaying
disclosure may also be beneficial to HIV-positive individuals
because it may give them more time to know the other people
involved and thus anticipate possible reactions and conse-
quences to disclosure (Rutl
edge 2007).
Contextual environment
The contextual environment is critical in HIV disclosure/non-
disclosure. It describes the setting and potential contextual
factors under which disclosure is more or less likely to occur.
Seropositive individuals, their families and communities, as
well as their socio-cultural and political norms, constitute the
environment. If HIV stigma is present, HIV-positive indi-
viduals are less likely to disclose (Wouters et al. 2009).
Conversely, disclosure can occur only if the person feels
secure, in control and in a comfortable environment
(Rutledge 2007). For example, personal disclosure is more
likely to occur in the person’s own home rather than that of
their sexual partner’s because this affords a greater sense of
security. Silent communications through the presence of other
evidence of seropositivity such as medications (e.g. taking or
displaying medications in the open), brochures (support
groups) are more likely to occur at home and hence facilitate
disclosure. For some individuals, however, this may also
become difficult to accomplish and anonymous disclosure
over the internet or through another person is desirable,
because the process is easier and rejection is less obvious
(Rutledge 2007). However, anonymous sexual contexts such
as public sexual venues may also affect disclosure because of
fear of being detected (Simoni & Pantalone 2004). Other
contextual factors may include substance abuse, income and
other socio-cultural factors (Simoni & Pantalone 2004). As
far as taking highly active retroviral treatment (HAART) is
concerned, there is a possibility that this may influence the
process of disclosure in both negative and positive ways. This
finding, however, is not conclusive (Klitzman et al. 2004).
Protecting someone
HIV-positive individuals choose to disclose/not disclose their
status because they feel a sense of responsibility to protect
their partners and social networks (personal vs. shared
responsibility) (Jeffe et al. 2000, Winstead et al. 2002,
Sullivan 2005), and in some sense to protect themselves
(Gorbach et al. 2004). This can be described as another-
focused reason (Chandra et al. 2003a). This sense of pro-
tection can occur in many different ways. Some may choose
to go ahead and tell their partners about their status so that
they can decide what they want to do. To some, this is a
moment of fulfilling the need to educate (Emlet 2008). Others
may realize that their partners have the right to know but
choose not to disclose because they believe that, as long as
they have protected sex, the partners do not need to know
(Winstead et al. 2002). For some individuals, serosorting may
be another option (Wong et al. 2009). This is a new strategy
that involves commitment and checking whether a partner is
indeed positive before sexual encounters. If a partner is per-
ceived as HIV-positive, then the seropositive individual is
more likely to disclose. As for self-protection, if people con-
sider themselves to have a low viral load (which may reduce
possibility of transmission), they are less likely to disclose
(Gorbach et al. 2004, Simoni & Pantalone 2004).
Relationship status
The disclosure process to others has its own patterns and
limitations. The attribute of relationship status is character-
ized by a selective disclosure process to preserve privacy.
Some HIV-positive individuals are secretive about who they
disclose to and may not disclose to everyone (Kalichman
et al. 2003). Often, HIV-positive people will disclose their
status to some friends and family members, healthcare
JAN: CONCEPT ANALYSIS HIV disclosure� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2097
workers, employers, others in the community and/or some-
times to their partners. As for sexual partners, disclosure is
more likely to occur in longer romantic relationships than
casual relationships (one-night stands, anonymous partners,
group scene, etc.) (Batterham et al. 2005, Rutledge 2007).
Most people feel that if they have a romantic relationship
they would be more inclined to disclose than when they are in
a casual sexual relationship. For some individuals, however,
disclosure may be a strategy to excusing oneself from getting
to know another person, especially in situations where there
is lack of attraction (i.e. also known as ‘cop outing’) (Rutl-
edge 2007).Furthermore, family and friendship functioning is critical
in the disclosure process. In many cases, family size or social
network densities are not statistically significant predictors of
HIV disclosure (Kalichman et al. 2003). There has been a
consistent pattern of disclosure which suggests that women
are more likely to disclose than men (Kalichman et al. 2003,
Shaffer et al. 2001, Wouters et al. 2009). In addition,
disclosure is more likely to occur among friends, mothers
and sisters than fathers and brothers (Kalichman et al.
2003). Cultural differences are also vital in selective disclo-
sure, with HIV-positive individuals being more likely to
disclose to friends in the West than in countries such as those
in Africa and India, where family is most important. For
instance, Kalichman et al. (2003) found that friends were
disclosed to most often and were perceived as most
supportive among people in the United States of America
(USA). Likewise, the literature on disclosure to children
reveals unique patterns, with more disclosure among chil-
dren aged 10 years and older (Lester et al. 2002, Asander
et al. 2009). Other relational factors affecting HIV disclo-
sure/non-disclosure include number of sexual partners and
sexual orientation. HIV-positive individuals who have a
greater number of sexual partners are less likely to disclose,
compared to those with fewer partners (Sullivan 2005). In
addition, homosexual men have been reported to disclose
more than bisexual and heterosexual individuals (Sullivan
2005). These findings, however, are not conclusive because
of non-representative samples (Batterham et al. 2005). In
terms of sexual orientation, heterosexual individuals, in
particular women face unique challenges associated with
HIV disclosure. Some of these may be influenced by their
roles in society and the power imbalance within their
relationships. Semple et al. (1993) identified stressors in a
sample of 31 HIV-positive, mostly White, heterosexual
women with no reported history of intravenous drug use.
The researchers identified self-disclosure of HIV status to
children, concern about having infected children, caring for
an infected child, and making alternative arrangements for
caring for children as important stressors in the lives of
women who had children. In addition, race/ethnicity has
been found to play a key role in HIV disclosure. A study by
Elford et al. (2008) indicated that Black African heterosexual
men and women were less likely to tell their current partners
about their HIV infection than White or ethnic minority gay
men. Moreover, African American and Latino men leading
double lives by engaging in both heterosexual and homo-
sexual relations are less likely to disclose their HIV status to
female partners, and are also more likely to engage in
unprotected sex (Mutchler et al. 2008).
Improving something or being therapeutic
The therapeutic effect of disclosure has been commonly cited
as a reason for disclosing serostatus (Chandra et al.2003a).
Disclosure to significant others is important for coping with
HIV/AIDS and gaining social support among HIV-positive
individuals (Chandra et al. 2003a, Greeff et al. 2008).
Empirical evidence suggests that disclosure to significant
others can help increase social support as well as initiation
and adherence to HIV treatment and medications (Serovich
2001, Winstead et al. 2002, Stirratt et al. 2006). Disclosure
to friends has been reported to be most likely and friends
have been found to be very supportive (Kalichman et al.
2003). In addition, disclosures to mothers and sisters have
been reported more often than fathers and brothers, and are
perceived as the most supportive family members. The
extended family, on the other hand, is viewed as more
supportive than all immediate family members with the
exception of mothers (Kalichman et al. 2003).
Cases
Model case
Walker and Avant (2005) suggest that providing a model case
as an example of the concept will demonstrate all its defining
attributes. The following is a constructed example of a model
case. Patient A saw an advertisement about a local commu-
nity health project offering free HIV testing and decided to
get a test. She was somehow not very sure if she was at risk,
but knew that she had experienced unprotected sex with
multiple partners. After taking the test she was given a pre-
liminary positive result, and this was later confirmed at the
local health department. With the help of the counsellor,
Patient A decided to disclose her status to her mother
6 months later after learning her diagnosis. She disclosed to
her during a nurse practitioner follow-up visit. She believed
that her mother would be more accepting and supportive,
and that she deserved to know more about HIV transmission,
prevention and management.
R.W. Eustace and P.R. Ilagan2098 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd
Alternative/borderline case
An alternative case is designed to demonstrate a situation
where some of the defining attributes antecedents or conse-
quences are present. Patient B was admitted to the hospital
with high fever, body malaise and vomiting. He had been out
of work for a while because of being ill. He had lost a lot of
weight, as he had not been eating well. He had been involved
in unsafe sexual activity and had being speculating that he
might have HIV. He had told his best friend J because he was
very accepting and non-judgmental. His friend requested that
he get tested. It took him a while to finally do so. The test
result indicated that he was HIV-negative. Patient B is an
example of an alternative case because he possessed some of
the attributes of HIV disclosure, with exception that he was
not HIV-positive, and thus did not need to disclose anything
(i.e. HIV status).
Contrary case
Walker and Avant (2005) defines a contrary case as a clear
example of what is ‘not the concept’. Patient C is admitted
to the hospital with high fever, fatigue and loss of appetite.
He has been experiencing unexplained weight loss in the last
2 months. He has now officially learned that he has cancer.
He does not want to tell his wife about the diagnosis but
shows an interest in telling his boss at work. He believes
that his boss is very supportive and will make sure he
continues to receive health insurance coverage. This case
demonstrates some attributes of disclosure, but not HIV
disclosure.Antecedents of HIV disclosure
The antecedents of HIV disclosure can be summarized in two
categories, namely before and after HIV diagnosis, and may
include individual, familial, community and social factors.
Post-diagnosis factors may include disease acceptance and
desire to protect others and gain support (Greeff et al. 2008).
Death of a loved one, partner or child has also been reported
as a factor leading to disclosure (Greeff et al. 2008). Some of
the determinants of disclosure among HIV positive individ-
uals include the act of maintaining secrets because of age-
related factors, social economic status (SES), the need of
privacy and the time-lag between knowing about HIV status
and deciding to disclose (Wouters et al. 2009). It has been
reported that HIV-positive individuals who disclose are on
average older, higher in SES and aware of their HIV status
longer than those who have not told their sexual partner(s)
(Demas 2000). Denial and breaching confidentiality may be
other reasons for not disclosing, as well as fear of negative
consequences for the family (Greeff et al. 2008). Another
important antecedent of disclosure is the presence of
community support initiatives. In their study to determine
the impact of a community support initiative on disclosure to
relatives, Wouters et al. (2009) concluded that the safe
environment created by the support of community health
workers or HIV support groups reduced fear of stigmatiza-
tion and rejection and encouraged disclosure among PLWH/
A. These findings support consequence theory as an expla-
nation of whether an individual decides to continue keeping
the secret or to disclose by considering the cost and rewards
of the decision (Serovich 2001). Overall, we can conclude
that, depending on the relationship target, the perception of
HIV-related stigma shapes people’s positive or negative
concerns about what might happen if they disclose (Derlega
et al. 2004). Other factors may include knowledge of the
disease (Skogmar et al. 2006), race/ethnicity (Fekete et al.
2009), and quality of communication, family functioning,
gender and sexual orientation (Lester et al. 2002).
Consequences of HIV disclosure
The consequences of HIV disclosure may be categorized as
either negative or positive in relation to the family, sexual
partners, friends and community. Negative consequences
include anxiety because of an uncertain outcome. HIV
disclosure generates fear of rejection for sex, loss of
romance, separation, divorce, and negative labels such as
handicap or sickness, as well as stigma and death sentence
(Skogmar et al. 2006, Calin et al. 2007, Rutledge 2007,
Wong et al. 2009). HIV disclosure is regarded as one of the
triggers of HIV stigma (Sandelowski et al. 2004, Greeff et al.
2008). Other negative consequences may include loss of
social support and abandonment assault/violence and impris-
onment. For instance, many states in the USA now consider
HIV transmission associated with non-serostatus disclosure
as ‘criminal transmission’. An individual can be taken to
court if their sexual partners or social networks think that
they contracted the disease because the individual did not
disclose their status (Simoni & Pantalone 2004). Moreover,
HIV disclosure to children may result in problem behaviour
and negative family functioning, especially among adoles-
cents (Li et al. 2007). Potential negative outcomes for
children include poor academic achievement, lack of pro-
social behaviours (e.g. cooperation, helping, trust), sexual
risk-taking, substance abuse (Delaney et al. 2009), fear of
the unknown, fear of death or separation, and denial or loss
of social relationships (Winstead et al. 2002). HIV disclosure
in the community has also been reported to result in denial
due to distrust toward seropositive individuals who disclose
because of their physical appearance (not thin/ill) and the
JAN: CONCEPT ANALYSIS HIV disclosure� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2099
thought that they are doing this for monetary gain (Greeff
et al. 2008).As for positive consequences, disclosure is commonly
associated with reports of consequent safer sexual behaviour
and greater social support. It has been found that individuals
who disclose are more likely to report more frequently or
always using condoms, reducing the number of sexual
partners and/or becoming monogamous, increased social
support, with families providing the most support (Demas
2000, Wong et al. 2009). Other possible variables in relation
to the benefits of mothers’ disclosure to their children include
reduced worry, increased parental self-efficacy and improved
parent-child relationships (Winstead et al. 2002, Li et al.
2007). Disclosure may also lead to improved medication
adherence (Mellins et al. 2002).
Empirical referent
Following the model case, it is clear that empirical referents
should incorporate assessment of HIV testing and diagnosis,
timing of testing and disclosure, communication patterns and
types, context of disclosure, relationships types and social
support. These factors, together with the antecedents and
consequences, yield useful information that can offer new
research directions in HIV disclosure, in particular instru-
ment development.
Discussion
The proposed attributes and definition of HIV disclosure
were developed based on empirical evidence and earlier
efforts to understand the HIV disclosure process among HIV
positive individuals. The analysis offers a conceptual map for
further research to develop a middle-range theory of HIV
disclosure. Although the research evidence reviewed for this
analysis has generated many important and consistent find-
ings on some aspects of disclosure, such as the relational and
therapeutic (support) factors, many gaps remain. There is a
need for more data about HIV disclosure in order to develop
a more inclusive model. Each of the potential factors within
the proposed major categories (attributes, antecedents and
consequences/outcomes) needs further exploration.
Moreover, majority of the findings in this analysis are
based on cross-sectional and comparative research designs,
which yield limited information about the process of
disclosure over time and across various HIV subpopulations.
In addition, it is imperative to note that very few researchers
have examined HIV disclosure using randomized controlled
trials (Serovich et al. 2009). As a result, it is still difficult to
understand the complex patterns and consequences of
disclosure on HIV-positive individuals’ well-being. There-
fore, any new theoretical consideration of the process of
HIV disclosure should address relationship and therapeutic
needs, as well as the timing, protective, communicative and
contextual factors influencing disclosure. For instance,
future researchers should compare how HIV-positive indi-
viduals and their sexual/social networks perceive the impact
of HIV disclosure on their relationships (Winstead et al.
2002).Conclusion
The major challenge offered in this analysis concerns how
scholars can enrich theoretical conceptualizations of HIV
disclosure. The concept has major implications for advanced
HIV nursing practice through the application of various
What is already known about this topic
• A significant amount of HIV/AIDS prevention literature provides support for HIV disclosure among
HIV-positive individuals.
• Healthcare providers are encouraged to be aware of any implications associated with HIV disclosure in
order to effectively support and meet the needs for
people living with HIV/AIDS.
• There literature does not offer a clear understanding of the concept of HIV disclosure as it reflects the
complex realities of HIV positive individuals.
What this paper adds
• A theoretical definition of the concept of HIV disclosure. • Major attribute categories of HIV disclosure are:
experiencing an event, communicating something,
timing, contextual environment, protecting someone,
relationship status and improving something or being
therapeutic.• The process of HIV disclosure varies across time.
Implications for practice and/or policy
• Develop a HIV disclosure measurement tool for seropositive individuals.
• Offer effective services for people living with HIV/AIDS utilizing the defining attributes, antecedent and
consequences of HIV disclosure.
• Train health care providers on the process of HIV disclosure assistance.
R.W. Eustace and P.R. Ilagan2100 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd
theories such as the humanistic communication theory and
interpersonal theories. The analysis offers nurses a guiding
tool on how to reframe research questions and practical
activities in order to reflect the diversity and fluidity of the
process of disclosure among people with HIV. Both qualita-
tive and quantitative research designs and methods should be
used in shedding light on the complex patterns of relationship
changes and interactions that can explain the process of HIV
disclosure. Socio-cultural norms and attitudes about HIV
should be considered and researched to further the under-
standing of HIV disclosure. Randomized trials, longitudinal
studies and multilevel models that evaluate HIV disclosure
interventions are also valuable designs in this process. The
key attributes of HIV disclosure offer nurses a base for
developing multiple level counselling and psychosocial inter-
ventions to help support HIV-positive individuals through the
disclosure process. Policy implications include the need to
develop better assessment, referral and follow-up approaches
that protect the rights of individuals and the public.
Funding
This research received no specific grant from any funding
agency in the public, commercial, or not-for-profit sectors.
Conflict of interest
No conflict of interest has been declared by the authors.
Author contributions
RWE and PRI were responsible for the study conception and
design. RWE and PRI performed the data analysis. RWE and
PRI were responsible for the drafting of the manuscript. RWE
and PRI made critical revisions to the paper for important
intellectual content. PRI supervised the study.
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JAN: CONCEPT ANALYSIS HIV disclosure� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2103
Strategies and Outcomes of HIV Status Disclosure in HIV-Positive Young Women with Abuse Histories
Gretchen A. Clum, PhD, 1
Lauren Czaplicki, MPH, 2
Katherine Andrinopoulos, PhD, 1
Kathryn Muessig, PhD, 3
L. Hamvas, MPH, 4
Jonathan M. Ellen, MD, 5
and the Adolescent Medicine Trials Network for HIV/AIDS Interventions
Abstract
Young women with HIV and histories of physical and/or sexual abuse in childhood may be vulnerable to difficulties with disclosure to sexual partners. Abuse in childhood is highly prevalent in HIV-positive women, and has been associated with poorer communication, low assertiveness, low self worth, and increased risk for sexual and other risk behaviors that increase the risk of secondary transmission of HIV. HIV disclosure may be an important link between abuse and sexual risk behaviors. Qualitative interviews with 40 HIV-positive young women with childhood physical and/or sexual abuse were conducted; some women had also experienced adult victimization. Results suggest that HIV-positive women with abuse histories use a host of strategies to deal with disclosure of HIV status, including delaying disclosure, assessing hypothetical responses of partners, and de- termining appropriate stages in a relationship to disclose. Stigma was an important theme related to disclosure. We discuss how these disclosure processes impact sexual behavior and relationships and discuss intervention opportunities based on our findings.
Introduction
Advancements in antiretroviral drug treatment haveenabled persons living with HIV/AIDS (PLWHA) to live longer, healthier lives with increased opportunity for engag- ing in intimate relationships. An ongoing challenge to sec- ondary prevention of HIV is understanding and intervening with factors influencing continued engagement in unpro- tected sex with new and existing partners.1–3 HIV-positive women with childhood abuse histories, including both physical and sexual abuse in childhood, have been identified as a particularly vulnerable population, with higher rates of unprotected sex, greater numbers of partners, and additional health risk behaviors, such as substance use, and poorer ad- herence than their counterparts without abuse histories.4–9
One potentially relevant mechanism linking abuse and en- gagement in unprotected sex is disclosure of HIV status. Women with childhood abuse histories report less assertive behavior, greater interpersonal distress, increased shame, and more difficulty with interpersonal communication.10–14
Young women with HIV diagnosis and prior experiences of
physical and/or sexual abuse in childhood may be particu- larly vulnerable to difficulties disclosing their HIV status to partners, which may play an important role in risk behaviors.
Disclosure has been associated with greater adherence to HIV care and regimens, and improved mental and physical health.15 Several factors appear to influence disclosure of HIV status. Persons living with HIV or AIDS who report low self- efficacy to disclose their status are more likely to never or infrequently disclose their HIV status to a sexual partner.16,17
HIV stigma has also been shown to be negatively related to the decision to disclose across studies.18 Exposure to height- ened levels of HIV stigma are associated with increased feelings of negative self-image—including shame and guilt—and a subsequent decrease in confidence to disclose HIV status.19–21
PLWHA are more likely to disclose their HIV status to primary sex partners compared to casual partners22–24 and several studies have found higher rates of disclosure in established relationships lasting longer than 6 months.3,25
Frequency of contact with an individual, and female gender has also been shown to be associated with time to disclosure in women with HIV.26 The association between relationship
1Tulane University School of Public Health and Tropical Medicine, New Orleans, Louisiana. 2The Louisiana Public Health Institute, New Orleans, Louisiana. 3Johns Hopkins School of Public Health, Baltimore, Maryland. 4Washington University, St. Louis, Missouri. 5Johns Hopkins School of Medicine, Baltimore, Maryland.
AIDS PATIENT CARE and STDs Volume 27, Number 3, 2013 ª Mary Ann Liebert, Inc. DOI: 10.1089/apc.2012.0441
191
length and status disclosure, and differences in status dis- closure by partner type are potential ways PLWHA attempt to mitigate the social risk of revealing one’s serostatus.27,28
Strategizing disclosure may be particularly important for women with abuse histories who may already have experi- enced stigma and shame due to the abuse, and who may be more likely to internalize feelings of low self-worth or feelings of powerlessness.29,30
HIV-positive women with abuse histories have numerous abuse-related sequelae that are relevant to disclosure of HIV status and sexual behaviors. For example, a qualitative study of women with sexual abuse histories included reports that consideration of disclosure of abuse was associated with feelings of powerlessness, fears of additional victimization ensuing, and thoughts related to their own responsibility (self blame) for the abuse.31 Similar to the difficulty of dis- closing abuse status, women with abuse histories may have fears or difficulty disclosing their HIV status to partners. This hypothesis is underscored by the fact that discomfort with intimacy, and avoidance of intimacy have also been described in HIV positive women with abuse histories.10
Other studies report emotional distress linked to abuse in HIV positive women, which may also play a role in disclo- sure and sexual behavior, for example, PTSD related avoidance may heighten the likelihood that women will not disclose HIV status.10
Research has shown that women with abuse histories are more likely to engage in HIV risk behaviors relevant to both primary and secondary transmission, including higher rates of unprotected sex and an increased likelihood of having risky sexual partners.10,12,32 Research also demonstrates that women with an abuse history are less likely to successfully negotiate condom use than those without an abuse history, with this effect stronger for minority women.8,33 Women with abuse histories have also been shown to engage in less sexual communication in general, which in turn has been identified as an important mediator between abuse and sexual risk be- havior.4,34 Sexual communication specific to sexual history, as well as condom use, has demonstrated strong associations with condom use.35 Thus, in HIV-positive populations, dis- closure of sexual history, including HIV status, may be an important factor in condom use and may be particularly challenging for those women with abuse histories with poorer communication skills and more abuse-related distress. How- ever, while several studies have demonstrated increased con- sistency of condom use as a consequence of disclosure,36–38
other studies show inconsistent condom use after disclosure within sexual partnerships.2,3,39 40
Given the potential vulnerability of women with abuse histories to having greater difficulty with disclosure through abuse-related sequelae such as low assertiveness, increased shame, poor self worth, and powerlessness, and the increased potential for stigma, investigation of disclosure in this popu- lation is needed. The aims of this study are to explore dis- closure strategies in young HIV-positive women with histories of childhood sexual and/or physical abuse, examine factors influencing those strategies, and to examine outcome associated with disclosure. Greater understanding of the dy- namics of disclosure communication in young women with abuse histories may provide targets for intervention to facil- itate status disclosure or inform strategies for communication in the absence of disclosure that will reduce the likelihood of
unprotected sex and reduce risk for secondary transmission of HIV in this high risk group.
Methods
The specific methods of our interview approach and inter- view development are described in detail in Clum and col- leagues.10 We utilized a naturalistic, inductive approach to explore the experience of sexual and physical abuse on the lives of young HIV-positive women. We adapted the method of the Life Story Interview,41 using audio-recorded one-on-one in-depth interviews. Descriptive demographic data and trauma related symptoms were also assessed. Saturation was deter- mined by consensus of the primary interviewer and authors who reviewed transcripts as interviews were completed.
Participants
Young women with behaviorally acquired HIV were re- cruited from three Adolescent Trials Network Sites (ATN) in Miami, New York City, and Philadelphia. During enrollment, all young women attending the clinic were approached with information about the study. Forty women met the inclusion criteria of age from 18 to 24 years, a reported history of physical or sexual abuse prior to the age of 18, and hetero- sexual sexual activity in the past 4 months, defined as vaginal or anal sex. We stratified recruitment to include substance users, with the result that 23 of 40 (57.5%) participants re- ported greater than minimal use of alcohol, marijuana, or other illicit drugs in the last 4 months.
Study participants received study information from nurse coordinators during a clinic visit; interested participants gave informed consent for eligibility screening. Of 84 women ap- proached for the study, 8 women were not interested or left care prior to screening, thus a total of 76 women completed the screen. Of these, 34 were ineligible based on study inclu- sion requirements and two declined to participate. Interviews were scheduled within 60 days of initial contact, and con- ducted by one of three trained interviewers.
Interviews lasted from 60 to 90 min and began with a semi- structured interview reviewing abuse events, age and fre- quency of abuse, PTSD symptoms, and sexual behaviors, followed by the interview based on the Life Story Interview. All interviewers were trained to administer the interview and be sensitive to psychological issues during the course of the interview. The primary interviewer was a trained Adolescent Medicine physician unaffiliated with the clinics. Additional interviewers included a clinical psychologist and a doctoral level graduate student in public health proficient in qualita- tive research methods, neither of whom were professionally affiliated with the clinics. All participants were debriefed re- garding potential psychological reactions to the interview, and were made aware that assistance was immediately available at the clinic site, or would be available if the need arose later. All young women were also provided with re- ferrals for care within the community in addition to clinic contacts. Interviews were transcribed word for word and the original recordings were destroyed. Interviews were re- viewed by three authors as received. All participants received compensation for time, transportation, and child care, as de- termined by their local site standards. Approval from each study site’s and the first authors Institutional Review Board was obtained.
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Measures
Abuse. Participants were assessed for abuse histories prior to the age of 18 years. A modified version of a stan- dardized traumatic event assessment method42 utilized in the National Survey of Adolescents43 was used. Abuse was de- fined by endorsement of at least one behaviorally specific description of an event of physical or sexual abuse occurring prior to age 18. Examples of specific items include: ‘‘Has a boy or man ever put his penis inside your vagina or rear end or inside your mouth when you didn’t want them to?’’ and, ‘‘In your lifetime, has anyone, including family members or friends, ever attacked you with a gun, knife, or some other weapon, regardless of whether you ever reported it or not?’’
Post-traumatic stress disorder assessment. PTSD symptoms were assessed with an interviewer administered Posttraumatic Diagnostic Scale44 based on the DSM-IV diag- nostic criteria. The scale provides a severity score (17 items) and assessment of functional impairment (9 items yes/no) in the past month. Item anchors ranged from 0 (Not at all or only 1 time) to 3 (5 or more times a week/almost always). The PDS has demonstrated high internal consistency, test-retest reli- ability, good sensitivity and specificity, and diagnostic agreement with the Structured Clinical Interview for DSM-IV- TR (SCID).
The Life Story Interview. A modified version of the Life Story Interview41 was used to guide the interview. Partici- pants identified different life chapters and followed up these chapters with details regarding their significant life events. A question guide with probes in areas such as the impact of abuse, coping, and sexual behavior was available to inter- viewers to facilitate the discussion and encourage elaboration on certain themes and topics as interviews progressed. These themes were chosen based on prior literature examining abuse and its sequelae in HIV positive and nonpositive women 8,45,46
Analyses
Grounded theory was utilized to guide our analysis.47 The analysis process included conventional and directed content analysis.48 Each transcript was reviewed in its entirety. Codes were developed to capture concepts that were important to the research questions. Transcripts were then broken down into text segments that represented an important domain, concept, or theme, labeled with the appropriate code49 and catalogued using Atlas.ti 5.0 software.50 One primary coder, not affiliated with the interviews or clinics, performed all the coding. A second coder reviewed the coding scheme and co- ded 25% of the interviews. A minimum of 80% inter-rater reliability was achieved; any discrepancies were reviewed by three authors of the study and discussed until agreement was obtained. Codes were clustered based on overlapping con- cepts. The relationship among codes and important themes emerging through the clustering of concepts was discussed among two of the co-authors. Identified themes were syn- thesized for presentation. Results are focused on the themes of sexual communication including disclosure, condom use ne- gotiation, and factors influencing these themes. Segments taken directly from interview transcripts are included as illustrations of how the theme is expressed by participants.
Results
Demographics and abuse history
Demographic and behavior data are presented in Table 1. Young women were between the ages of 18 and 24 years. Thirty-five of 40 participants were Black (87.5%), 5 reported ‘‘other’’ status. Two of 40 women (5%) indicated they were of Hispanic ethnicity. Thirty five percent reported they were currently working, 45% reported they were in school, and 45% reported they were in a long-term relationship of 1 year or more. A detailed report of participants’ trauma exposure and symptoms is available in Clum et al.10 Briefly, young women reported histories of sexual (75%) and physical (80%) abuse histories, with 55% reporting the occurrence of both physical and sexual assault. Post-traumatic stress disorder symptoms were, on average, in the moderate to severe range as assessed by the PDS (20.75, SD 10.18) and the impact of symptoms across several life areas were reported, including the impact on sexual relationships (67.5%), general life satis- faction (57.5%), family (52.5%), and friend (50%) relation- ships, and leisure activities (45%). Unprotected sex in the past 6 months was reported by 17 of 39 women (42.5%). Women reported a range from 0 to 50 partners, 2.5% (n = 1) reporting 0, 57.5% reporting 1, 20% reporting 2, 20% reporting 3 or more.
Overview of results
Results are organized by themes and subthemes that include (1) disclosure strategies, with subthemes of (a) disclosure avoidance/delay, and post delay disclosure strategies, (b) strategies used to disclose after delay occurred; (2) relationship factors influencing disclosure with subthemes of (a) intimacy/
Table 1. Demographic and Sociobehavioral Variables in Young HIV-Positive Women (N = 40)
Variable Percent Mean (SD)
Employed 35.0 In school 45% Long-term relationship 45%
Race/ethnicity Black 87.5 Hispanic 5.0 Other 12.5
Child abuse > 18 years Sexual 75% Physical 80% Both 55%
PTSD symptoms 20.75 (10.18) Impact of PTSD
Sexual relationships 67.5 General life satisfaction 57.5 Family relationships 52.5 Friend relationships 50.0 Leisure activities 45.0
Recent sexual partners 0 2.5 1 57.5 2 20.0 3 or more 20.0
Unprotected sex last 6 months 42.5 Recent substance use 57.5
HIV DISCLOSURE AND ABUSE 193
timing, (b) anticipated partner reactions, (c) stigma, (d) emo- tional costs, and (e) moral obligations. Finally, themes around (3) partner reactions to disclosure and (4) links between dis- closure and condom use are discussed.
Disclosure strategies
Disclosure avoidance/delay. The desire to avoid or delay disclosure of HIV status among study participants was com- mon and influenced by myriad personal and relationship factors that led to decreased communication regarding HIV status. One young woman, with a reported history of both childhood sexual and physical abuse, had a difficult time ac- cepting her own HIV status. This impacted her decision to not disclose to her partner of 3 years that she was HIV positive. She said, ‘‘He doesn’t know yet, I have to tell him, so–. I know. I told you that I’m a quiet person. And plus, I don’t think about it. In my eyes, I don’t have it.’’
Several other women felt that their HIV status was a private matter, one that was only shared with select family members and health care providers. Another woman, who selectively disclosed to some partners but not all, struggled with what she saw to be the moral issue of disclosure, ‘‘I would never purposely look for people to just, you know, ‘I’m going to give this to as many people as I can,’ but if I’m in a relationship with someone, and I don’t know how to address the situation, I normally ignore it.’’ In these situations, avoidance plays an important role in the disclosure process, making it difficult for young women to communicate with partners.
Other women avoided or delayed disclosure out of a concern that disclosure could result in loss of their partner. One participant stated: ‘‘But the thing that really was both- ering me was that how I’m going to tell the person that I really love without him wanting to leave.’’ This young woman felt that disclosure could result in termination of her relationship, and because of her investment in ‘‘really lov- ing’’ him, felt the risk of disclosure was greater than the benefits of disclosure. Another participant delayed disclo- sure until she was sure of the strength of her partner’s feel- ings. ‘‘But when I tell them, I find it easier to wait until they already fall in love with you. That’s what it is. Because if they’re not, then I don’t know what they would do. But if I really like them, then I would rather for them to be already in love with me before I tell them.’’ In these situations, the in- tensity of feeling or love for a partner drives these women’s decision to ultimately disclose their HIV status.
Post delay strategies. Among women who delayed dis- closure, patterns of delay were influenced by several factors. For example, some women negotiated their delay in disclosure by not fully expressing the truth about the timing of their HIV diagnosis. As one woman explains, ‘‘I was in a relationship with him for a year prior to finding out. So how was I going to tell him? I said, ‘you gave me HIV.’ No he didn’t. I know he didn’t. And he know he didn’t, but he went and got tested anyway.’’ Similarly, another young woman described: ‘‘And then the second guy, I didn’t tell him immediately, but when I finally told him, I told him as if I had just found out.’’ These women adopted a strategy to address disclosure that allowed them to disclose their status but also allowed them to withhold information from their partner, in this case timing of HIV di- agnosis, that they were not comfortable communicating.
Relationship factors
Intimacy/timing. Several women discussed the effect of contextual factors within a relationship on their decision to disclose, such as how they perceived their relationship with a current partner would develop. For example, one woman based her decision to disclose on both her perceived future with her partner and whether her partner potentially got sick in the immediate future. ‘‘Depends, if I think that we’re going to be together for awhile, then I will say something to him. But if I don’t think we’re going to be together for awhile, then I’ll probably just [not]. Not unless he went to the doctor or something and something was wrong with him, then I would explain to him, but now I wouldn’t.’’ Another woman said that she did not expect to have to disclose her status saying ‘‘I don’t know. That’s the last thing, I won’t ever be close to nobody.’’ The stage of the relationship and level of intimacy were thus important to disclosure.
Anticipated partner reactions. Women reported that they would gauge partner reactions based on hypothetical situa- tions involving HIV. One woman described how she expected to handle disclosure, ‘‘Oh, [if it is] the right person for me to tell my business to like that. If I see that it’s going somewhere, then I’ll just sit down and tell him. And I’ll talk to him. First, I’ll like figure out what you think about it. I ain’t going to come out and say, okay, yeah, you know, but first give an opinion on what you think. From that, I’ll just figure out what I’ll do.’’
Another woman similarly explained her strategy for find- ing out how a partner might react to knowing she had HIV. As one woman explains: ‘‘Well, when the subject of sex would come up, my partners, the guy will usually talk about, oh, they don’t want to catch anything..We start talking about it, and then I will be like, ‘Oh, what if you.’ I remember telling my way of saying it, ‘Well what would you do if I was sick?’ And they would be like, well, they would say this and that but they never change their words and they completely wouldn’t want to like deal with it. So I’m like ‘Okay.’ ’’
Another woman employed a similar strategy: ‘‘It’s hard. You know, we watch shows. If it comes on, I’ll be like, ‘How would you react if-?’.I asked them that for a couple of months, just to see what they would say. And if I feel like I’m comfortable to tell them—you know everybody’s different. I feel like if they can’t take it I’ll break up with them. Then I’ll tell them, ‘It’s for your best’.’’ By testing the hypothetical re- sponse of their partner when determining whether or not to disclose to them, these women were protecting themselves against possible negative and stigmatizing reactions.
Disclosure and stigma. Lack of disclosure was, in fact, associated with a fear of incurring stigmatizing beliefs about HIV from others, particularly gossip and potential rejection by partners. One participant described how HIV-related stigma and her assessment of the particular partner she was with influenced her disclosure decisions: ‘‘My new boyfriend, he don’t know. My ex-boyfriend didn’t. You can’t tell every- body because everybody have a different reaction when they don’t know the real story or the real concept of the disease. So I don’t tell my partner.’’ She went on to say of her other partners ‘‘the other two, no. They’re too ‘hood’. They’re too ‘in-the-street’’. So it’s like, ‘‘I’m not telling you. I know my
194 CLUM ET AL.
distance.’’ Another woman linked the subtheme of intimacy/ timing to the subtheme of stigma. She described how the length of time she has known her partner is important to her decision to disclose her status. She felt that early disclosure was potentially problematic and could lead to public exposure and stigmatization: ‘‘Well, I really look at it as a time issue. If I see I’ve been dealing with this person for so long, I’ll tell them. But I always wait a grace period because I don’t want to tell any and everybody because people are so prejudiced.And everybody knows everybody, and I don’t want to be walking around and they’re like ‘Oh, that’s – she right there.’
These young woman thus made situation specific decisions regarding disclosure based on a character assessment of her partners, with HIV-related knowledge and stigma playing a role in that assessment process.
Emotional costs of disclosure. Other women reported that disclosures resulted in relationship termination and sta- tus exposure. As one woman expressed: ‘‘I have seen people that got treated so bad because they told the person they thought that loved them, and they turned around, and they just turned their back on them, told everybody in the streets their business. So that’s why I say make sure that person is the right person.’’ Much like the women who chose to delay disclosure based on their partner’s reaction to a disclosure scenario, these young women approached each relationship with a strategy for disclosure that was based on an assessment of potential stigmatizing reactions and whether or not they perceived their partner and relationship as ‘‘right’’ for them.
It was evident in several narratives that the emotional cost of engaging in HIV status disclosure was high. One woman described a phenomenon related to disclosure that she thought was relevant to other women that she knew. She said that the cost of engaging in the disclosure process was so great that once you have disclosed to a partner, it is difficult to want to move on to another partner and have to go through the disclosure process again. She explained that this lead to re- maining in relationships that were detrimental: ‘‘I think like, for my friends, a lot of my friends, that most of them rather, that they stay in relationships that they don’t want to be in mostly with their partner that knows because the fact that they’re afraid to start over again.’’
She also directly linked stigma associated with HIV to re- maining in bad relationships: ‘‘And most of the times it’s bad relationships because the partner uses it as, you know, no- body else is going to want you because you got that or things like that. And that’s really hard to know that you have to start all fresh and have to go through the whole process of telling your partner and all that. That’s hard. So I have friends stuck in situations you don’t want to be in because you don’t want to start over.’’
This perception reflects several important themes, including the stigma of living with HIV and the links between stigma, disclosure, and increased vulnerability to ‘‘bad relationships’’ that might include emotional or other forms of abuse.
Moral obligation. Some women eventually disclosed their status to a sexual partner. One primary motivation appeared to be feelings of guilt over not disclosing sooner and a sense of moral obligation to disclose. As one woman described: ‘‘In the beginning [of the relationship] I just used protection. And then it just was eating me up inside. I just had to tell him.’’
Another woman stated: ‘‘I think it should be a moral obliga- tion to tell even if you might make a mistake. Some women feel as though after it’s done, it’s done, and then just go on repeating the same mistake. They have sex with a guy and then leave him alone because they’re so afraid that he’s going to find out, or they just never ever really able to tell him, or if you—just because a mistake is made doesn’t mean you can’t clean it up.’’
However, she herself was still unable to tell some of her partners in spite of her belief that she had an obligation to do so. She adds: ‘‘I have gone back and told people, and I have people that I need to tell, but I don’t just dismiss it, you know.’’ She struggled with what she felt was a moral obligation to disclose and the reality of actually disclosing, but was clear that her decision making was not taken lightly.
Partner reactions to disclosure
Women who disclosed their status, reported partner reac- tions to HIV disclosure that were varied, including positive, negative and neutral responses. Some women reported men who were shocked and upset, but eventually accepted the diagnosis and maintained the relationship. One woman who waited to tell her sexual partner about her status felt fortunate in his decision to stay involved with her: ‘‘About 6 months to a year, then I told him. I wouldn’t say he was okay. I can’t say it didn’t bother him, but he didn’t turn his back; he didn’t leave. He stayed. I was lucky.’’
Other women said that their partner ‘‘didn’t care’’ about the diagnosis. Several women mentioned that when they did disclose their status to partners, partner reactions included a willingness to risk acquisition of HIV. As one woman who made selective assessments regarding which partners to dis- close to stated: ‘‘I only told one partner after my baby’s father, and he understood it. He didn’t care. He didn’t care. He’s like, ‘I’m with you. I don’t care’ or whatever. ‘If we get it, we get it together.’’’ It appeared that her partner’s attitude toward ac- quiring HIV represented a gesture of intimacy. She continued: ‘‘Even before he went and got tested he said, ‘I don’t care. I love you. Oh well, we’re going to get it together.’’’ Another woman reported that she and her partner had not used con- doms during their sexual relationship even after her disclo- sure, and she saw his HIV diagnosis as an eventual certainty: ‘‘And we haven’t [used a condom], and he gets tested, and so, far so good. I’ll face that road when we get to it because, of course, eventually, he’ll most likely—he’ll eventually get it or something.’’
Partner reactions to disclosure also demonstrated a lack of education about HIV. As one participant described her part- ner’s response to her disclosure: ‘‘It went off pretty well [the disclosure] because he don’t believe that I have it.He got tested (after unprotected sex). And he’s like, ‘I really don’t believe you because I’m good now and it don’t say positive.’ So he don’t believe me.’’ In this case, her partner’s lack of knowledge regarding HIV transmission influenced his reac- tion to her disclosure, and potentially her ability to commu- nicate effectively about risk for transmission and motivate her partner to engage in safe sex strategies.
Disclosure and condom use
The relationship between disclosure and condom use was also complicated and varied according to disclosure timing,
HIV DISCLOSURE AND ABUSE 195
partner reactions to disclosure, and prior condom use be- havior. As is evident from some of the above quotes, some young women did disclose their status to their partners, but this disclosure did not result in safer sex practices. Several women who had not disclosed their status to partners re- ported that they engaged in unprotected sex with partners, and that the delay in their disclosure made it more difficult to initiate safer sex as time passed. As one participant stated: ‘‘We never used protection from day one, which, when I first was with him, I knew; I had found out. I didn’t know how to tell him when we were sexually active without protection, before I even told him. And then once I told him, he was so afraid, so he was upset about it because I didn’t tell him.’’ Another participant who had not disclosed her status to her partner described her distress at not saying anything about discontinued condom use: ‘‘Yeah, we used a condom, but he took it off. He took it off, but I still felt bad because I should have said something.’’ Thus for some women, delay of dis- closure appears to be related to difficulty in initiating or maintaining condom use.
However, not all of the women in the study had difficultly negotiating condoms. Here, those women who reported that ‘‘they don’t negotiate,’’ meaning that condom use was a given and non-negotiable, were consistent with reporting regular condom use in their sexual relationships. Insisting on condom use did not necessarily mean that a woman had disclosed her status; rather, it meant that she had a policy on condom use that she had identified for herself and made clear to her partners. One woman articulated her beliefs regarding con- dom use and partner reactions to requests for condom use: ‘‘And be like if they’re not using a condom I’m leaving. That’s it. And if they’re just going to let you leave like that, then that means they never cared about you.’’
Other women reported more difficulty with condom ne- gotiation, including justifications for their use in lieu of status disclosure and dealing with negative partner reactions. For example, one woman stated: ‘‘Yeah, and I’m like, ‘‘But you have to.’’ He’s like, ‘‘Why’’? And then, I don’t want to just tell him right there and then, but then at the same time—because once I said, ‘‘Oh, well, you might have something, and you don’t know it,’’ or something like that, and then he’ll get real defensive. So I don’t want to bring it up like that, so I try not to just be around it.’’
Other women made distinctions between condom use with their main partner versus a casual partner, as one woman said: ‘‘I mean, if it’s just a fly by night— yes, I’m going to use a condom but if it’s just my main boyfriend— you know, nn-nnn.’’ Thus, for some women, the decision to use condoms or negotiate condom use is affected by the need to demonstrate intimacy, to imply exclusivity and in some cases to avoid disclosure of HIV status. It was also clear that those women who were more comfortable and assertive with condom ne- gotiation, had partners who accepted condom use, and who were willing to ‘‘move on’’ if partners did not want to use condoms were more likely to engage in safe sex practices.
Discussion
This study provides insight into the complexities sur- rounding HIV disclosure and safe sex negotiation among HIV positive women with abuse histories. Women with abuse histories may experience sequelae stemming from abuse that
have the potential to affect how they approach disclosure with partners. Increased sense of powerlessness, self blame, shame, and decreased assertiveness associated with prior abuse ex- periences may impact women’s decisions to disclose and the strategies they engage in regarding disclosure and sexual behaviors. While all women in this study had abuse histories, and thus we could not compare their narratives around dis- closure with those who have not experienced abuse, several themes emerged that were consistent with abuse sequelae.
Women in this study employed a variety of strategies around disclosure of their HIV status. Some women avoided status disclosure altogether, either because they viewed their HIV status as a private matter that could be problematic in a relationship or had a difficult time accepting their own status. Many delayed status disclosure and struggled with defining the right situation or the right person to tell their status to, and employed strategies such as gauging partner reactions to potential disclosure scenarios or considering the future of their relationship with a sexual partner to determine whether or not to disclose their status. Delay strategies were thus tied to relationship factors that together influenced women’s disclosure.
Relationship factors, including fear of partner rejection, fear of stigmatizing reactions from partners, and a sense of moral obligation to notify partners of their HIV positive status were major factors driving the decision to disclose across narratives. These findings are consistent with other qualitative studies where HIV positive youth describe fear of rejection and stigmatizing responses as major drivers in their decision whether or not to disclose their status.51,52 These narratives thus suggest an exchange pattern within relationships that may further elucidate motives for lack of disclosure within certain types of relationships, with certain types of partners, and at particular points within the relationship. These ex- change patterns align with theories of exchange within sexual relationships including equity theory53,54 and investment theory.54–57 Similar to findings from previous research dem- onstrating increased disclosure of serostatus to primary and longer term partners, women in this study were more likely to disclose their HIV status to longer term partners, choosing to exchange this information with trusted partners with whom they were willing to share a level of intimacy. Intimacy is a valuable resource exchanged in relationships. Disclosing a stigmatized condition is a social risk,27 and sharing this risk creates inequity in the relationship and may also prohibit termination of the relationship because of the investment of intimacy through the sharing of personal information that reveals a vulnerable aspect of their perception of self this re- source.54,58 Young women in this study described hesitation in leaving a partner, even in scenarios where the relationship did not meet their expectations, given their investment of shared intimacy through status disclosure, and a desire to avoid having to repeat this process again with someone new.
Following exchange theory, it is also possible that partici- pant’s perceptions of self and self worth as an HIV-positive woman, and as a woman who has experienced abuse, low- ered her belief in the ability to find a better partner who would accept her status. Applying an exchange framework, as voiced by the participants in this study, assists in under- standing the role of perceived external and internal stigma as a determinant of disclosure. In addition to increasing efficacy and skills related to sexual communication, addressing
196 CLUM ET AL.
underlying perceptions of self-esteem and internalized stigma related to HIV is also important in intervention development.
Women voiced concerns about reactions to disclosure that include stigmatizing responses and relationship termination. Relationship loss and stigmatization as a result of disclosure are real possibilities. Strategies for managing disclosure to minimize stigmatizing reactions, such as partner education regarding living with a partner with HIV, are warranted. Strategies for assisting women with cognitions related to fears of stigmatizing responses and how they might prepare for a variety of possible partner reactions (including positive and negative responses) or loss of partner may also reduce distress associated with actual or imagined disclosure. A recent study found individual variation in disclosure strategies as a method of coping with the stress of HIV diagnosis,59 thus tailoring to individual preferences should be considered.
The results of this study also suggest that disclosure and condom negotiation strategies may need to be tailored to the stage of the relationship, as women who delayed disclosure reported concerns about how to disclose after time had passed in a relationship and/or they had engaged in unprotected sex. Women who choose not to disclose or wait to disclose should be equipped with skills to manage their own feelings or dis- tress related to not disclosing, and also strategies for ensuring maximal safety of self and others in their sexual relationships. This may mean introducing or strengthening strategies for negotiation and communication, with a particular emphasis on dealing with partners who are persistent in their desire to not use condoms.
In our study, those women who were clear that they would not have sex without a condom were the most likely to practice safe sex. This is consistent with literature doc- umenting a strong relationship between sexual communica- tion and engagement in protected sex.60 Further, less assertive women and those who did not believe they could control condom use in partners were less likely to use condoms.61 For those women who consistently used condoms in this study, motivations for the safety of self and others appeared to be important. However, there was also evidence of positive es- teem for self that was evidenced in those who said they ‘‘don’t negotiate’’ and always use condoms. These women did not appear to link intimacy to their use of condoms unless it was to suggest that a partner who won’t use condoms is not a good choice for a partner. Further, they had the skills to be assertive and the willingness to ‘‘move on’’ from a partner if needed, perhaps suggesting greater emotional and/or economic in- dependence.62 Leveraging these phenomenon, such as moti- vations for safety of self and others and positive self regard could be useful in promoting safe sex practices and facilitating disclosure.
Another important finding in this study was the reported willingness of male partners to risk HIV acquisition after learning a woman’s HIV status. This risk taking appeared to be tied to intimacy for some, to feelings of invulnerability, and perhaps to a lack of education about risks for transmission and what HIV ‘‘looks like’’ in others. HIV-related stigma or lack of education may lead to beliefs that people with HIV look sick, malnourished, and could not appear to be a healthy, functioning young adult woman. A recent qualitative study of HIV-positive women and their serodiscordant partners un- derscored the findings that intimacy, invulnerability and lack of education may contribute to serodiscordant partners’ un-
willingness to use condoms, and also suggested that sexual pleasure and control were important factors.63 The authors also described a ‘‘wearing down’’ process where women’s attempts to get partners to use condoms are met with partner resistance and subsequent arguments, resulting in unpro- tected sex as the outcome.
Strategies for managing partners who are persistent in their negotiations not to use condoms should be considered for this population. Notably, some women experienced ongoing dis- tress with regard to their partner’s unwillingness to use con- doms, for fear of their eventual HIV infection, which has also been noted in the literature.63 Future research should explore sexual risk taking in couples where HIV is an issue from a relational perspective. For those women who are HIV posi- tive, venues to educate discordant partners and provide ac- ceptable strategies for sexual safety, as well as interventions that focus on the quality of the couple’s relationship generally and sexual relationship specifically may be beneficial.64
Other emotional constructs may also be relevant to women with abuse histories negotiating disclosure and condom use that were not explored here. A recent study exploring abuse, attachment in relationships, and sexual risk concluded that attachment anxiety had direct effects on sexual risk behav- iors,65 thus relational factors such as attachment could be an important link between the effects of abuse and sexual risk. Additionally, for those young women with abuse histories, understanding cognitions related to intimacy, safety, and es- teem of self and others may be an important focus for changing behavior and increasing sexual safety.
This study has several limitations. First, all women had abuse histories, so comparing the experiences of those HIV- positive women with abuse histories and without abuse his- tories on disclosure and links to condom use would help clarify those factors that are unique to the experience of abuse. It is possible that women with childhood abuse histories are not different than their non-abused counterparts in the way that they approach disclosure with partners. Future studies should use quantitative and qualitative methods to pursue this question further. Nonetheless, given the high prevalence of abuse in HIV-positive women and the theoretical and empirical support for vulnerability to low assertiveness and poorer sexual communication in women with child abuse histories, it is important to understand their lived experiences and begin to target interventions to their needs. An additional limitation is the focus on a clinical population. All women were engaged in HIV related clinical services, and this may reflect a higher functioning group that is not representative of the larger population of HIV-positive women with abuse histories. Most of the women were African-American and represent a narrow age range. Disclosure strategies may vary as a function of ethnicity and developmental stage. Time since trauma, and the presence of cumulative trauma may also be relevant variables that impact adjustment and disclosure. Further research should include exploration of these issues in a range of women using both quantitative and qualitative methods. Finally, the impact of abuse on sexual communica- tion and behavior is relevant to men with HIV as well. Further studies should include men and women and examine gender as a potential modifier in these relationships. Women with abuse histories continue to engage in unprotected sex, and may be particularly vulnerable due to sequelae of their abuse experiences. In addition to addressing their mental health
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symptoms, there is great need to address communication and disclosure strategies, and assist women with relational factors influencing sexual behavior.
Acknowledgments
We acknowledge the ATN sites that participated in this study: Montefiore Medical Center, Bronx, NY; University of Miami School of Medicine, Division of Adolescent Medicine, Miami, FL; and Children’s Hospital of Philadelphia, Phila- delphia, PA. We thank ATN’s Behavioral Leadership Group, ATN Coordinating Center at University of Alabama at Bir- mingham, and Westat, Inc. We are grateful to the members of the ATN Community Advisory Board and to the youth who participated in this study. This study was funded by grant No. 5-K01MH070278 to the first author from the National In- stitutes of Health through the National Institute of Mental health. Additional funding and support was provided by The Adolescent Trials Network for HIV/AIDS Interventions (ATN) which is funded by Grant No. U01 HD40533 from the National Institutes of Health through the National Institute of Child Health and Human Development (A. Rogers, R. Nugent, L. Serchuck), with supplemental funding from the National Institutes on Drug Abuse (N. Borek), Mental Health (A. Forsyth, P. Brouwers), and Alcohol Abuse and Alcoholism (K. Bryant).
Author Disclosure Statement
The authors declare no conflicts of interest with respect to the authorship and/or publication of this article.
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Address correspondence to: Gretchen Clum, PhD
Department of Community Health Services Tulane University School of Public Health and Tropical Medicine
1440 Canal Street, TW-19 New Orleans, LA 70112
E-mail: gclum@tulane.edu
200 CLUM ET AL.
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