See all articles attached.You are a consulting psychologist for a local clinic and have been asked to follow up on a consultatio

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.

HEALTH POLICY AND ETHICS

1012 | Health Policy and Ethics | Peer Reviewed | Obermeyer et al. American Journal of Public Health | June 2011, Vol 101, No. 6

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 ETHICS

disclosed. 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 ETHICS

States, 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

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