Module two: HIV counseling and testing

JOURNAL OF ADOLESCENT HEALTH 1993;14316%35S

INTRODUCTION Adolescents, like adults, need appropriate support and counseling to assist them in making the important decision to learn their HIV serostatus. While there are increasing medical benefits for asymptomatic and symptomatic HIV-infected people, these benefits must be weighed against potential risks, such as discrimination and negative psychological outcomes. This module will help outline important elements for HIV test counseling of adolescents. In addition, this module will review skills needed to effectively counsel, support, and educate adolescents during the pre- and post-HIV test counseling sessions.

OBJECTIVES Upon review of this module, the reader will understand some of the unique features of HIV test counseling of adolescents: l

l

l

l

I.

Elements of pm- and post-HIV test counseling of adolescents The influence of developmental issues on the pre- and post-test sessions, such as how these issues affect adolescents’ decision to learn their HIV serostatus The recommended process of testing adolescents for HIV Legal and financial issues affecting adolescents’s ability to obtain HIV testing

THE PROCESS OF TESTING Numerous debates about the process of HIV testing describe the benefits and risks of various forms of testing: anonymous versus con-

16s 10~139xoB3L$6.00

fidential; mandatory versus voluntary; routine counseling and routine testing. Providers must be aware of these various testing options, but ultimately the preferred mode of testing should be the adolescents’s decision (1,2). Anonymous and Confidential HIV Testing Anonymous testi@il;means that the identity of the clients is not recorded in any way by the facility offering the HIV antibody test. In contrast, with confidential testing, the clients’ identity is known and recorded. Access to HIV-related information is, however, subject to state confidentiality laws and/or regulations. Each mode of testing has specific advantages ahd disadvantages. Some of the advantages of anonymous testing are as follows: 0

Anonymous HIV antibody testing provides an important route for adolescents who want to learn their serostatus but also wish to protect themselves from the effects of potential breaches in confidentiality.

0

Anonymous testing virtually removes the potential threats of parenial or agency notification.

0

Anonymous testing eliminates the risk of stigmatization or discrimination for having obtained HIV testing, regardless of the results.

On the other hand, the disadvantages anonymous testing for adolescents are:

of

8 societyfor Adolescent Medicine, 1993 published by Elsevier Science Publiihing Co., Inc.. 655 Avenue of the Americas, New York, NY 10010

o Because providers will not know who the client is or how to contact him/her, anonymous testing does not provide for follow-up care. 0 Becauseadolescentsoften have more difficulty accessing services, this anonymity can further hinder the providers’ abihty to link youth to needed services. Confidential testing holds some distinct advantages for adolescents: 0 Under confidential testing conditions, counselors can arrange follow-up care and provide adolescents with needed support and advocacy. Several potential disadvantages to confidential testing for adolesceuts exist: o

As with adults, confidential information can be mistakenly or inappropriresulting in such ately released negative consequences as discrimination or stigmatization.

0 An adolescent may feel uncomfortable obtaining HIV-related services from a known counselor, and prefer to keep that information from a particular agency or staff member. In any case, the adolescent must be given the option to choose whichelver type of testing is most appropriate to her/his needs. Setting: Continuity

of Care 1s Ideal

Ideally, HIV counseling and testing should take place in a setting in which an adolescent can also obtain HIV or AID?3 care. Again, to assure continuity of care and access to medical services, confidential testing may be preferred over anonymous testing. At a minimum, an agency providing counseling and testing needs to have a solid referral system in place. When working with adolescents, it is recommended that providers take an active role in making referrals by making telephone calls, arranging appointmen@, ensuring that a client has the means to get to the appointment, and continuing follow-up until the adolescent has gone to the first appointment. Counselors

at

anonymous

testing

sites,

should also be skilled at finding referrals for HIV-positive adolescents in need of care. Agencies, as well as private physicians, who serve adolescents must be equipped to offer counseling and information to clients who are considering HIV testin 3. Should the provider elect to refer the adolescent elsewhere for counseling, testing, and medical care, s/ he has to discuss the kinds of information the adolescent needs to obtain from the referral agency. ESee Appendix A for a checklist of questions the adolescent can dsk the provider or referral.] andatcbry and VoIuntary Testing Mandatory testing (testing that is required as a precondition for entry into a program or job) carries many risks and few benefits. One potential benefit might be curtailment of the epidemic through behavior change. There has been no evidence, however, that knowledge of serostatus alone affects sexual or drug use behaviors (3). Although counseling offered in conjunction with mandatory testing might promote behavior change, there is insufficient evidence to justify mandatory testing on this basis. The Job Corps, Peace Corps, and al!. branches of the military, programs that require HIV antibody testing for entry, have not provided data that would support this thesis; no studies, in fact, have examined the effects of mandatory testing on HIV-positive youth risk-related behavior (4). HIV-positive military applicants are not admitted, but HIV-positive Job Corps applicants can be accepted. However, two lawsuits against the Job Corps were filed by HIV-positive adolescents who charged that inadequate care and medical services were provided. Additionally, these programs provide minimal, if any HIV counseling; and applicants report being notified by mail that they are HIV positive. The risks of mandatory testing for adults and adolescents alike include invasion of privacy, abridgement of civil rights, discrimination, exclusion from desired propsychological negative and gr-p outcomes for those unprepared to learn their serostatus. Adolescents, in particular,

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MODULE TWO

may face additional risks, exacerbated by their social and economic position. These risks include limited access to appropriate health-care services, no or inadequate health insurance, insufficient skills to negotiate complex systems of care, and no access to confidential care. Therefore, mandatory testing offers few, if any, benefits to adolescents (4). Voluntary testing linked with counseling, informed consent, and follow-up medical and/or psychosocial care provide adolescents the opportunity to learn their antibody status after having considered the risks and benefits. As active decision makers, adolescents may be more motivated to engage in risk-reduction practices and seek follow-up care. e Provider-Initiated

Testing

Provider-initiated testing refers to a situation in which a provider raises the topic of HIV testing and presents it as a voluntary option, Unlike the situation in which a client seeks out HIV antibody testing services, this situation occurs when a client may have presented for other reasons, and the provider believes it to be in that client’s best interest to consider being tested for HIV. The potential for coercion is one risk of this testing mode. This is a danger particularly for adolescents, who may have more difficulty asser&ing their own needs and preferences under such circumstances, and therefore, may be more prone to agree to HIV testing without actually being prepared to learn their serostatus. If a provider initiates such a discussion, s/he must be sure the adolescent understands that receiving services is not contingent upon being HIV antibody tested. Another potential disadvantage to provider-initiated testing is that linkages between testing and treatment services are often deficient. If the adolescent does agree to be HIV ~tibody tested, the provider needs to confirm that the adolescent is truly consenting, prepared to learn her/his serostatus, and can be ensured access to proper care. As with other modes of testing, providerinitiated HIV antibody testing can hold sev-

eral advantages for the adolescents. If a provider initiates a discussion of risk and risk-reduction methods, the interaction may provide the adolescent a “window of opportunity” to discuss questions about HIV and risk status. If the adolescent presents with a sexually transmitted disease (STD), pelvic inflammatory disease @‘ID),or other condition that indicates s/he has been engaging in behaviors that place her/him at risk for HIV infection, a discussion of risk and testing can help the adolescent learn about the connection between her/his own behavior and HIV infection. If the adolescent consents to be tested and is HIV positive, the provider can then initiate early care and treatment. Because relatively few HIV-positive adolescents are in care, practitioners need to accept responsibility for conducting more vigorous “case finding,” in part by incorporating HIV counseling and testing into their routine of care. HIV Testing at the Adolescent AIDS Program (AAP) At the Adolescents AIDS Program, HIV antibody testing is provided on a confidential basis. Clients are referred to the program from other agencies, such as communitybased organizations. AAP also performs provider-initiated testing with some adolescents admitted to the general adolescent unit at Montefiore Medical Center. For example, adolescents who are admitted with substance use or PID are provided with counseling abos: HIV and then, if deemed appropriate, offered HIV antibody testing.

ADOLESCENT DEVELOP HOW IT AFFECTS HIV TESTING To effectively communicate with thta youth, the counselor may need to utilize some of the following techniques: . Verbal counseling skills include thrj ability ask open-ended questions, allow time ior the client to respond, offer verbal prompts such as, “‘what do you mean by that, tell me more about that,” as well as paraphrasing and

HIV COUNSELING

summarizing thoughts.

the

client’s

feelings

and

0 Nonverbal skills, such as body language and eye contact, convey to the adolescent the counselor’s openness and willingness to be of help. * Establishing rapport at the beginning of a counseling session and assuring csnfidentiality are crucial to developing trust and encouraging the adolescent to be an active participant in the counseling process. = Sensitivity to ethnic and cultural differences is necessary to providing accessible and effective services. The resources listed at tile end of Module Six: Indiv,dual Risk Assessment and Reduction provide information about basic counseling skills and crosscultural sensitivity. Differences in stage of cognitive development may cause some adolescents to be the following: Concrete thinkers Magical thinkers Deniers Feeling immortal Sensitive to peer pressure Having difficulty in weighing options A task of the test counselor is to interact with the adolescent on her/his dev&Rmental level. Using counseling skills with adolescents requires that the counselor assess the particular development level of the individual adolescent. Following are questions counselors may consider as the counseling session progresses: How experienced is the adolescent at concrete thinking? How oriented to the future, if at all? How realistic a planner? How able is s/he to weigh options? How realistically does s/he assess risk? How realistically does s/he assess own skills about implementing behavior change? These questions will help provide counseling that is appropriate to the developmental level of the adolescent. In the sections that follow, we discuss the elements of pm- and post-test counseling. By involving the client as much as

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possible in the counseling process, the counselor will be better able to provide developiientally appropriate information and problem-solving assistance to engage the youth in deciding -whether to learn her/his HIV serostatus. When offering HIV testing to adolescents, it is important to ensure that they fully understand the social, psychological, medical, and legal consequences of learning their HIV serostatus. Given the complexity of these issues, combined with adolescent-specific development traits, a single pre-test counseling session conducted under a specific time limit may be insufficient to fully assess and/or prepare the adolescent for the potential consequences of her/his decision. If the provider believes a single pre-test session is insufficient for informed decision making, and it is logistically feasible, the counseling session should be extended without hesitation. Another major concern is that notification of seropositivity may precipitate a suicide attempt. Our experiences with adolescents at AAP has not borne out this fear (51, although other research indicates that suicidal thoughts or behaviors are possible outcomes (6). Therefore, a crucial aspect of HIV test counseling for adolescents is assessment for current suicidal thoughts as well as past suicidal ideation or attempts, which are often the best predictors of future suicidal behaviors (7). Even those youths who state they would be suicidal could be tested if medically indicates, as long as appropriate supports, including the ability to hospitalize, are in place.

Because adolescents are often economically and legally dependent on adults, providers must pay special attention to issues of consent, cctidentiality, and financial accessibility. ence and Capacity to V Antimony Testing In nearly all states, adolescents aged 18 years or older are legally defined as adults. For these adolescents, the issue of consent

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MODULE TWO

Table 1. statutory provisionsfor Minor Consent to HIV Testing and Treatment

-or

Minor cunsent fo treatment for HlV or AIDS

At least 11 states

At least 3 states

A&OlKl

Colorado Iowa Michigan

consent to HIV testing

California Colorado Delaware Iowa Michigan Montana New Mexico New York Ohio Wisconsin

Minor consent to STD diagnosis and treatment where HIV is classified as STD

Minor consent to diagnosis and treatment of communicable, contagious, or infectious diseases where HIV is classified as such

Minor consent to diagnosis and treatment of reportable disease (where AIDSis reportable); may be able to consent to HIV care

Minor consent to medical care if the minor is living apart from parents, legally emancipated, mature, high school graduate, married, or parenting

At least 12 states

At least 7 states

At least 2 states

More than 25 states

Alabama Florida Illinois Kentucky Mississippi Montana Nevada South Carolina Tennessee Vermont Washington Wyoming

Alabama Idaho Montana North Carolina Oklahoma Texas Virginia

California Pennsylvania

See: Gittler J, QuigleyRick M, Saks MJ (19901.Adolescent health care decision making: The law and public policy. Washington, DC: Carnegie Council on Adolescent Development

Adaptedfrom: EnglishA, Expanding access to HIV services for adolescents: Legal and ethical issues. In: RJ DiCiemente, ed. Adolescents and AIDS: A Generation in Jeopardy. NewburyPark,CA: Sage, 1992(Endnote8).

is the same as for adults: they are legally able to consent to their own medical treatment (8). For adolescents not yet legally considered adults, under age 18 years in most states, laws regardir.g consent for medical services differ depending upon the type of service and the particular state. In attempt to clarify any confusion, this section, addresses only the legal rights of adolescents under age 18 years to consent for HIV antibody testing. Most adolescents under the age of 18 years are legal dependents of a parent or guardian, but many states have laws that allow access to HIV antibody testing without the consent of an adult. At least 11 states explicitly petit minors to consent to HIV testing, while many other states may permit consent under the authority of other laws concerning the diagnosis of sexually transmitted diseases, and emancipated or mature minors (8). [Table 1 summarizes these laws by state.] In states where laws give adolescents the right to consent to HIV antibody testing, the adolescent still must demonstrate the ability

to give informed consent. Meaning, s/he must be able to show an understanding of potential consequences, risks, and benefits of being tested for HIV. For instance as stipulated in the New York State Confidential-

ity Law, a provider must determine that a person has the “capacity to consent.” Because this law has no age restrictions, a minor is able to consent provided s/he has the “capacity” to do so. Upon meeting state specific conditions, an adolescent must sign a consent form indicating that s/he understands the meaning of the HIV antibody test, the benefits and risks of learning one’s serostatus, and the parameters of confidentiality. Though either state or agency forms can be used, consent forms should be written in clear and easily understandable language. [See Appendix B for an example of a consent form.] 0 Need for Confidentiality When considering HIV antibody testing, confidentiality of HIV-related information is a major concern for many adolescents. Agen-

HIV COUNSELING

ties that offer testins a,eed to explain to adolescents the state-specific parameters of confidentiality. These parameters include:

Some state laws, such as New York, may indicate that under certain conditions a physician can inform sex and/or drug partners of a patient’s HIV status. The goal at Ihe AAP is to encourage patients to notify partners as welI a responsible adult themselves. Acquiring the reputation as a “clinic that tells” would ultimately drive patients away, depriving them of necessary medical 2nd i;tiai,&ing. Under all circumc2re stances, it is essential to inform adolescents of the stipulations and limitations of the state’s confidentiality law.

23.5

Adolescents are usually financially dependent on other people, such as their parents, legal guardians, or a state facility. This financial dependence can create barriers to accessing care, as well as compromises in confidentiality. Thus. any agency that is offering testing should to be prepared to offer services at low or no cost.

0 How and where will the HIV test results will be recorded? 0 Who has access to th_e.seresults? 0 Under what circumstances may results and other HIV-reiated information be released? 0 What requests for HIV-related information do not require the adolescent’s permission? The AAP is governed under New York State HIV confidentiality law. The most recent statute and regulations require written informed consent for HIV--related testing, limits disclosure of HIV-related information, and usually requires written consent for release of information. In New York, as in other states, adolescents who have the legal authorization to consent to HIV testing, also possess the right to consent to the disclosure of HIV-related information (8). According to the New York State law, however, certain agencies are permitted to receive HIVrelated information without a specific release form. These agencies include correctional facilities,. foster care, and adoption agencies who are legally responsible for a particular client (9). Other social service agencies, such as drug-treatment facilities or schools, do not have the authority to automatically receive HIV-related information, so we can assure clients confidentiality with respect to these agencies. In order for these agencies or service providers to obtain HIVrelated information about a client, s/he must sign a form authorizing the release of such information. [See Appendix C.1

AND ‘EETDJG

atory

EmpIoyment

HIV Testing Training

for Entry to

As previously noted, the Job Corps, all branches of the military, and the Peace Corps require an HIV antibody test as a precondition to entry into the program. While the military excludes HIV-positive cants, the Job Corps began accepting positive youth into the program in 1989. The danger of these mandatory entry tests is that youth who learn that they are I-ITJ positive through these entry requirements may be unprepared for the possible emotional and psychological consequences, ranging from exclusion from job training, as in the cast of the military, to inadeq&e medical and psychosocial services (4). Providers who serve these youth, both inside and outside of these agencies, need to provide pre- and post-test counseling to help adolescents prepare for the potential consequences of learning their serostatus and actively facilitate their entry into early medical care if HIV positive.

N. This section outlines the essential elements of pre-test counseling sessions. The overall goal is to assist the adolescent in making an informed decision about whether to learn her/ his I-IIV serostatus. In this pre-test session, counselors should: Evaluate the adolescent’s in pursuing HIV testing

motivation

Help the adolescent assess the benefits and drawbaks to HIV testing at that specific time Educate the client about HIV testing

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MODULETWO

*

e Risk Assessment and Risk Reduction

Assess the clients coping skills

* Provide structure and support for the adolescent to make her/his decision * Help the client develop a coping and support system during both the waiting period and after receiving her/ his test results The pm-test counseling may be divided into the following elements: rapport * Establish confidentiality

and

assure

* Risk assessment and reduction * Discuss meanings of the HIV test

and implications

* Perform a risk/benefit analysis * Investigate coping history and help develop future strategies * Determine capacity to consent o Establish Rapport and Assure Confidentiality It is essential for the counselor to begin establishing a rapport with the adolescent at the initiation of the first session and continue building this rapport with the client throughout the counseling process. To begin establishing a rapport, the counselor can: o Introduce her/himself to the client Welcome the adolescent to the facility o Be supportive of the adolescent’s willingness to discuss personal issues with the counselor o Provide relevant positive feedback early in the session

o

Throughout the counseling sessions, the counselor should be direct, honest and forthcoming. The counselor also needs to establish the limits of confidentiality early on by stating: “Everything we discuss here today will be kept private unless you tell me something that indicates to me that you or another person is in immediate danger of being hurt.”

The risk-assessment portion of pm-test counseling really begins with the counselor establishing the adolescent’s motivation for seeking testing. Questions such as: &ringsyou here today?” o “Can you tell why you were referred to us?” o “What

are some of the reasons that you think you might want to get the HlV test?”

o “What

can help clarify the adolescent’s reasons for seeking testing, her/his self-assessment of risk, and, if the adolescent has been referred, whether s/he actually perceives her/himself to be at risk. It is important for the counselor to use this portion of the session to continue establishing a rapport with the client, showing interest and care about the adolescent’s own perceptions and ideas. A variety of reasons might motivate the adolescent client to seek HIV test counseling. For example: o

Concern about exposure to HIV through unprotected sexual activity and/or shared needle use o Misperception of risky behavior o Fears around transmission through casual contact o Other emotional reasons unrelated to actual risk status

Counselors need to be sensitive to and aware of a range of intimate issues. For instance, some adolescents may have a history of sexual abuse or sexual offenses; others may have concerns about their sexual identity or sexual behaviors; and others may need to reveal and discuss illicit drug use. All of these are powerful and emotionally charged topics. If these topics are pertinent to the adolescent’s decision and potential coping, counselors need to encourage discussion of them. Of course, when deemed appropriate, a counselor should refer the adolescent for other related services not directly part of the pre- or post-HIV test counseling. Referrals might include counseling and/or medical treatment for sexual abuse, sexual offend-

HIVCOUNSELLNGANDTESTlNG

ing, sexual health (including tity>, and drug treatment.

sexual

iden-

As part of the risk assessment. counselors should solicit from the adolescents their understanding of the modes of HIV transmission. By asking the adolescent what s/he knows, the counselor can begin to assess the client’s cognitive and development level. For example, the counselor may ask: “You said you know about HZV infection and AIDS. What are some of the ways a person can get HIV?” The core element of the risk assessment consists of identifying the sexual and drugusing behaviors in which the adolescent has engaged. The counselor might begin such a discussion by asking: “Do you think you have been at risk for HIV infection ? What are some of the ways you have been at risk?” Even if the adolescent does not report engaging in any risk behaviors, the counselor needs to specifically review the different behaviors that may place an adolescent at risk for HIV. This risk-awareness education is an essential complement to risk assessment. Risk-reduction strategies follow discussions of risk assessment and awareness. One goal is to help identify misconceptions about risk reduction. For example, when an adolescent states that s/he can tell if her/his partners are “sick,” the counselor should correct this misperception. Another goal of risk reduction is to ascertain if the client reports difficulties in effectively carrying out safer behaviors. For example, if a client reports frequent condom breakage, the counselor can use this opportunity to discuss and demonstrate correct usage of condoms and the importance of using lubrication with Nonoxyno19. Last, the counselor needs to strategize with the adolescent ways to implement riskreduction behaviors. A more in-depth discussion of risk assessment and reduction can be found in Module Six: Individual Risk Assessment, Awareness, and Reduction. Thus, overall, a risk assessment should help the counselor to:

23s

o Identify risk behaviors o Clarify misconceptions about what behaviors put a person at risk for HIV infection o Plan risk reduction with the client eanings and Implications

of the

In order to assess the adolescent’s conception of the HIV test, the counselor needs to find out the adolescent’s understanding of the test. The counselor might ask: “What do you think the HZV test means or shows?” During this part of the pre-test session, the counselor needs to provide information and clarify misconceptions about the following aspects of HIV testing: 0 The difference between and AIDS:

HIV infection

* Clarify that the HIV test is a test specifically for the HIV infection, not AIDS * Explain that a person can have virus in their body for many years before developing HIV-related symptoms or AID!3 o The HIV test detects the presence of antibodies in the person’s blood, therefore the adolescent must understand the differences between the virus itself, and the antibodies produced by the body in response to viral infection. o The presence of antibodies does not confer immunity to HIV infection o HIV affects the ability of the immune system to prevent infection Patients also need to understand the meaning of a “negative” and “positive” HIV test result. For instance, many believe that a “negative” result is a “bad” result, indicating that they have the HIV virus. With a positive result, adolescents must understand the following information: o HIV antibodies are present o Emphasize that HIV infection does not equal AIDS o HIV can be passed to others through

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MODULE TWO

vaginal, anal, possibly oral sex, and needle sharing o Reinfection with HIV by continued exposure may make the infection worse l

o Investigate Coping History and Develop Future Strategies The counselor might ask:

Perform Risk/Benefit Analysis

“‘Haveyau ever had to deal with a difficult situation or upsetting news in the past?”

To address this aspect of the pm-test counseling, the provider might ask:

“‘How did/might you handle something like that?”

da yau think same af the benefits of knowing that yau are HZV positive might be?” “What

The counselor can elicit discussions about early medical intervention, avoidance of reinfection of HIV or other sexually transmitted diseases, ability to do family planning, ability to protect others from infection. A similar and equally important question is: “What are same of the possible drawbacks of knowing yau are HIV positive?”

This discussion should include some of the following thoughts: o You might get so upset that sometimes you might think about harming or actual1.y harm yourself or another person 0 Rear:tions of your friends and family members could be both supportive and rejecting 0 Concerns about people finding and fears about stigmatization discrimination

out, and

Q Due to issues of payment, accessing quality medical care can be difficult o Fears of death and dying Thus, overall, the purpose of a risk/benefit analysis is to identify a list of the risks and benefits associated with HIV testing. Armed with information, adolescents wilI be able to approach this important decision in a thoughtful manner. Because the results of an HIV test may be devastating, the counselor must assess the adolescent’s ability to handle the results. The adolescent’s past coping strategies can provide insight to past suicidal attempts of ideation, and past effective coping mechanisms.

Information from such questions should be part of the risk/benefit analysis. Having discussed past coping history, the counselor can help the adolescent think about expectations and coping mechanisms vis-a-vis the test results: “If yau decide to get the HIV test, what do you think the results will be?” This question may elicit whether the client believes s/he is immune to HIV. The adolescent also may give a realistic prediction of her/his serostatus or indicate needless concem- “the worried well.” If the adolescent expects a positive HIV test resu!t, and if there are physical indications that this is likely to be true, then the counselor can begin to help prepare her/him. o Forecasting and Role Pllaying Possible Reactions to a Positive Result Whether the adolescent feels that the results will be positive or negative, it is important to help her/him anticipate possible reactions to the result. Simply clsking, “How do you think you might react to a positive result?” will open such a discussion. Sometimes during a roleplay with a client yields more information and helps the client think about her/his reaction more than asking hypothetical questions about the future. A counselor might begin such a roleplay with the following introduction: “Do you have a good imagination? I’d like to pretend with yau now that you have already had the test for HIV, that it is 2 weeks from now. Pretend t&atI have your result already, and you have returned for your test result. Da yau think you con put yourself in this rake?” “Okay, let’s pretend that I hove your re-

HIV COUNSELING

sult here and it is positive, meaning that you have HIV. ” A&W roleplay to proceed 3-5 minutes. Assess and discuss client’s reactions. Help client identify positive coping strategies. 0

astin

ions

Playing tive Test

e

le

Role play a negative test result. Use it to discuss the window period and retesting, depending on the last incidence of risky behavior, as well as the desirability of avoiding risky behaviors to avoid future HIV infection. 0

As part of the discussion on coping plans, the counselor needs to discuss the waiting period, developing supports, and notifying contacts. The counselor can assist the adolescent in handling the waiting period by asking questions that might help the client anticipate some of the feelings s/he might have. Some of these questions might include: ‘How do you think you will feel during the waiting period? “Can you teld anyone tested?”

“If so,who,and

you have been

what can you say to

them?” “What can you do if you feel really upset or nervous?” The goal is to develop a plan for the waiting period between being tested and getting the results. Include a discussion about where the adolescent might get professional support during this waiting period, such as from the agency offering testing. At AAP, clients are encouraged to contact the program if during the waiting period concerns or problems arise. 0 support systems Moving on to helping develop support systems, the counselor needs to help clients think about who they might turn to during the waiting period but also, even

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TESTING

25s

more importantly, after receiving their test results. Some of these question might be: “If you were HIV you tell?”

positive, who could

If the client says nobody,

ask:

“Who hme yelp turned to in the past?” If they still cannot think of anyone to tell, ask: “What are some agencies or people you might look to for It is important that the client identify at

least one confide. 0 Notifyifr

adult

in

whom

s/he

can

artners

The issue of notifying sexual and drugusing partners is complex. It is important to recogtCze that not all adolescents are immediately willing to noti_fytheir sexual and needle-sharing partners. Partner notification is a process, one which usually takes a while after initially raising the issue during the pre-test counseling session. At the AAP, if an adolescent is HIV positive, they may continue a relationship with a partner and further opportunities to discuss partner notification will arise. For programs that do not offer long-term medical or psychosocial services, it is appropriate to discuss partner notification in depth during pre-test counseling, and then emphasize its importance at the post-test session&). Like other aspects of planning with adolescents, planning partner notification will be most effective if the counselor helps the adolescent devise concrete strategies for notifying contac*s but does not impose them on the adolescent. The counselor might explain to the client: “If you test positive for WV, it is important for you to let yuuv sexual partner(s) or your needle partners knuw SO that they can know they are at risk fer ~217, get counseling and care, and protect themselves and others porn in@-

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MODULE

TWO

tion. They also can decide whether or not to get tested.” The counselor also needs to help the cli-

ent plan the notification by helping her/ him think about: * * * *

Whom to tell? Where to tell? How to tell? When to tell?

Asking concrete questions, planning specific statements, and doing roleplays are among the strategies the counselors can use to enable the client to consider notifying contacts. @ Discussing Confidentiality and Determine Capacity to Consent o

Review the differences between confidential and anonymous testing and what is being offered to the adolescent

o Discuss the effects payment procedures can have on maintaining confidentiality At AAP, billing is discussed at the time of the referral, prior to the adolescent coming in for pre-test counseling. If this is not the case at other agencies, it is crucial that the adolescent be informed of any third-party insurance billing that might pass through their own or their parent’s workplace. The adolescent needs to be aware that this type of billing may compromise confidentiality. At this point, it is appropriate to discuss whether the client will get tested that day. The client should be reminded that s/he is not obligated to get tested as a result of the counseling session. There should be a discussion about whether or not the client feels ready and wants to get tested. Additionally, the counselor needs to decide if the adolescent is ready to get tested, The counselor may have concerns about suicidal attempts and/or no support system being in place, and may choose, with or without the adckcent, to postpone testing either indefinitely or until after further counseling.

Reading and Signing the Consent Form Upon deciding to get tested, an adolescent reads and signs a consent form. Consent forms need to meet legal standards and comply with institutional policies. At the AAP, a standard consent form is used, and staff ensure that the adolescent understands the contents of what s/he is signing. At other programs, such as the Larkin Street Youth Center, an adolescent-specific consent form is used. [See Appendix B for sample consent forms.1 Additional Pre-Test Session Topics Schedule further pre-test session(s) as requested or needed or schedule post-test session. The adolescent should be informed that test results, whether negative or positive, will only be given in person-not by telephone. Plans should be made for contacting the adolescent if s/he does not show up for a later appointment or for test results. As the session is ending, the counselor should give the adolescent contact numbers and encourage communication doring the waiting period in the event that the adolescent has questions, concerns, or fears.

VII. ELEMENTS OF POST-TEST COUNSELING The post-test session consists of these basic parts: * Delivery and processing results * Empowerment and coping

of

the

The post-test counseling usually takes place more than one session with HlV-positive adolescent clients, and, in a comprehensive clinical services site, occurs over the length of several visits. As a newly diagnosed client begins to deal with being HN positive, s/he may be ready to cope with different issues in the post-test counseling.

HIV COUNSELING

Test Counseling

for an

-Positive Adolescent

0 Delivery and Processing of the Results Especially when delivering the results, the counselor must be straightforward. Casual conversation may unduly increase the adolescent’s anxiety level. EXAMPLE: “Your test results are back and show that you do have HIV infection; in other words, you are HIV positive.” Upon giving the results, the counselor must allow the client time to respond. Counselors often want to jump in to comfort and to “do” something immediately for the client. Often times, this response emerges out of the counselor’s own personal need to allay her/his own anxiety. Some common responses among adolescents to a positive HIV test have been: * * * * * * * * *

with

* “‘I’m gonna die.” * “My family will freak.” Self-blame, guilt, and feeling of contamination and contagion are also common. Adollescents also express concerns about confidentiality. For example, a you ‘h may inquire: “You’re you?”

not going

27s

cent understand the T-cell function in the immune system. If the immune system seems to be uncompromised, the provider can reassure the adolescent. If the immune system is compromised ah dady, the provider can inform the adolescent that there are medications that are helpful in maintaining the current functioning. Uncertainty is one feeling clients often express. Patients ask, “How much time do 1 h4Ive kft?” It is inaccurate to give a time frame. Instead, a realistic message of hope is more useful: “People live for year5 with HIV infection, and there is lots we can do to help you.” Even if clier ts do not bring up the subject of death, the provider should raise the subject; for example, s/he could say, ‘Mwny people fee2 they’re going to die right away or soon when they are diagnosed HIV positive. But, in fact, lots of people live for many years with HIV/AIDS.” Although adolescents are often thought to have extreme feelings of immortality, the staff of AAP has found this to be a misconcqotion, particularly wher: dealing with youth from the inner city. Many of our clients have already seen friends, relatives, Feers get sick and /or die. Some do not have any sense they have a future, regardless of their HlV infection.

Disbelief Panic crying Repetition of results Rage Relief Silence Demanding a retest Wanting to leave

Panicked reactions are common, teens saying such things as:

AND TESTL!‘G

to tell anyone, are

Only when the client is ready should the counselor begin to elicit information and repeat back what s/he has heard regarding the client’s feelings and interpretation of the results. If T-cell results are available, the provider might use them to help the adoles-

Adolescents may have realistic fears that they wilI not be able to fulfill their future plans and dreams. The counselor can reassure the adolescent that plans may need to be modified but not eliminated, and that the timetable for reaching their goals may have to change but not the goals themselves. The counselor can also reassure the adolescent that they can pursue those activities and interests in which they engaged prior to learning their serostatus. For disenfranchised youth, who may have more immediate concerns like food, shelter, and clothing, the prospect of becoming ill might seem quite distant. l3y providing referrals to assist meeting more immediate needs, s/he may be able to deal with her/his HIV infection more actively.

28s

MOIXJLE TWO

Many adolescents, both female and male, express concerns about the ability to have children. They need assistance in coming to terms with having a baby that could be HIV infected, and support for choosing not to become pregnant (or get someone pregnant), as well as for choosing to bear children. The issues involved in an adolescent’s decision about having children are complex. These may include desires to leave a legacy; “magical thinking” that if they become a parent they will not get sick because they are needed; wanting to feel grown up, which is an issue for HIVnegative lidolescents as well. Some adolescents may be quite adamant about not wanting children but may become pregnant regardless, reporting that, “it just happened” or, “just didn’t use protection.” Inconsistencies between what the adolescent says and what actually happens are common; the counselor needs to help the adolescent reach insights and acknowledge feelings, some of which might be contradictory. The counselor who is able to remain nonjudgmental about these issues may be more successful in helping the adolescent carry out her/his plans, including those around family planning. Adolescents who identify as gay or lesbian may also be concerned about the prospect of having children; counselors should not assume that because an adolescent is gay or lesbian, s/he has no desire to have children. 0 Empowerment

and Coping

+ Support System The first step in empowerment is the establishment of a support system. The counselor should explore with the youth whom and how to tell. Negative reactions and discrimination can be realistic outcomes of disclosure. Adolescents need to be aware of these possibilities and be told that they do not need to tell everyone about their HIV status, especially not immediately.

Assess whether the client needs assistance in telling those people who s/he has identified as potential supports. The counselor might ask, “What would make it possible fur you to tell?”

What would help in that situation?” The counselor can assist with disclosure, if the client requests it. Family or couples counseling might be another helpful service for the adolescent. Next, as during the pre-test session, reassure the client about confidentiality, while remaining within the parameters of the facility and the state law. For instance, if the adolescent’s life is in danger-in the case of suicidal ideation-or another person’s life is endangered, the agency may have to break confidentiality. The client needs to be aware tif this limit. * Risk Reduction Risk reduction is now emphasized from a two-way perspective, explaining that safer sex and drug use is both for the client’s own self-protection in terms of reinfection, strain mixing, and exposure to other infections and to protect other people. The risk-reduction message is thus twofold: -The adolescent her/himself tant and worth protecting.

is impor-

-The adolescent has the responsibility to protect other people. When discussing drug use or other risk behaviors, the practitioner must be nonjudgmental. [See Module Six: Individual Risk Assessment, and Reductionj The folIowing information should be conveyed to the adolescent: -Being high can affect theti decisionmaking capacities, and therefore place a person at higher risk for unsafe behaviors.

HIV COUNSELING

-Explain how to clean needles/ “works” even if the adolescent does not inject drugs.

and

demonstrate

-Ask adolescents to call or talk to someone first if they feel like hurting themselves. -Emphasize the importance of medical follow-up and assure transition to such follow-up.

condom

-Discuss other behavioral changes for lessening risk of reinfection and transmission.

-Ask client for ways that the agency can reach her/him, if the client does not get in touch. Establish a plan for maintaining confidentiality under this circumstance.

Overall, service providers should encourage questions and communic+ tion. Urge the client to call the agency upset or has if s/he becomes questions. Hiis essential to develop strategies and concretely plan what the client will do next. Both short-term (that day) and longerterm (next day, next week) plans should be discussed. The counselor might ask: “WJzut do you

need to do/happen

29s

ity for follow-.,p, they should also be given a hotline number.

-1f the adolescent chooses to stop using drugs and desires help in doing so, offer referrals for drug treatment. -Discuss use.

AND -IFSTING

St-Test Counseling for Negative Test

0

Delivery and Processing of the When delivering negative results, the counselor must also be straightforward. Casual conversation may increase the adolescent’s anxiety level. For example, the counselor might say: *IWe received the resuZts of your HIV ontibody test, and they were negative.”

next?” As with a positive result, allow the client time to respond. Encourage discussion.

‘What are you going to do when you leave here?” “What are some other options?” sumeone you might want “IS te talk to?” “What can you do if .vou we abne and it becomes really scary for you?” Continued Care and Follow-Up The client should also be prepared continued care and follow-up

for

-An

adolescent should leave the testing site with phone number(s) and specific names of agency contacts.

For agencies that do not offer clinical care, the counselor needs to make a specific referral for medical follow-up and, if possible, make th,e first appointment fur the adolescent. If the adoescent is referred to another facil-

Although the client’s results are negative, s/he still needs time to react and express feelings. For example, the waiting period may have been extremely anxiety provoking, and s/he may need to discuss this. Furthermore, the counselor must ensure that a client knovvs that there is a window period of between 6 months and 1 year between infection and seroconversion. Therefore, a negative test result does not necessarily indicate immunity. If the adolescent has engaged in risky behaviors within the last year, a retest in 6 months should be suggested. 0 Enq3owentnentand Coping As with a positive HIV result, the counselor should help conduct a risk assessment and reduction plan. 1 Six: Individual Assessment tion.] This should include methods of safer sex and drug use.

30s

MODULE TWO

Strategize to reduce risk of future exposure to HIV infection. For clients with extreme anxiety, referrals for additional or long-term education/counseling might be appropriate. For clients who have other concerns, such as deaths of family members, referrals to support groups or service organizations might be appropriate. For clients with other issues, such as histories of sexual abuse, homelessness, or drug abuse, referral to appropriate services is crucial.

ENDNOTES 1. Haymes R, Karlson K, Kunreuther E, Schnee L. HIV antibody

2. 3.

4. 5.

6. 7.

counseling and testing for adolescents: Policy recommendtitions and oractical euidelines. New York AIDS and Adolescents NetGork of Niw York, 1992. English A, ed. AIDS testing and epidemiology for youth. J Adolesc Health Care 1989;10:52%57S. Futterman D, Hein K, Kipke M, et al. HIV-positive adolescents: HIV testing experiences and changes in risk-related sexual and drug use behavior. In: Program and Abstracts of the Sixth International Conference tin AIDS 199O;SC:6633254. Hein K. Mandatory HIV testing of youth: A lose-lose prop osition. JAMA 1991;266:2430-1. Futterman D, Hein K, Reuben N, et al. Establishing an adolescent AIDS program: The first Xl HIV positive patients. Pediatrics 1993 fin press). Rotheram-Borus, MJ, Koopman C HIV and adolescents. J Primary Prev 1992;12:6542. Rotheram-BorusMJ,Koopman, C. I’idolescents and AIDS, In: Steuber ML, ed. Children and AIDS. Washington, DC: American Psychiatric Press 1992~4547.

8. English A. Expanding access to HIV services for adolescents: Legal and ethical issues. In: DiClemente RJ, ed. Adolescents and AIDS A Generation in Jeopardy. Newbury Park, CA: Sage, 1992~26283. 9. New York State Department of Social Services. HIV Infection and the Adolescent. New York State Department of Social Services, Office of Human Resources Development 199159.

RESOURCES AIDS and Adolescents Netwtirk of New York. HIV antibody counseling and testing for adolescents: Policy recommendations and practicaI guidelines. AIDS and Adolescents Network of New York, 1992. (2121925-6675. English A, ed. AIDS testing and epidemiology for youth: Recommendations of the work eroua 1Adolesc Health Care 1989~10: S52-S57. ”

.-

English A. Expanding ccess to HIV services for adolescents: Legal and ethical issues. In: DiClemente RJ, ed. Adolescents and AIDS A Generation in Jeopardy. Newbury Park, CA: Sage, 1992: 262-83. Isham, M. Adolescent guidelines for HIV counseling and testing. In: Baxter M, Green S feds). HIV and Adolescence: Facing the Challenge of the 90’s. Special Programs for Youth, 375 Woodside Ave., San Fransisco, CA 94127,199l. Larkin Street Yo&h Center. HIV and Homeless Youth: Meeting the Challenge. La&in Street Youth Center, 1044 Larkin St., San Francisco, CA 941a, 1990. Massachusetts Department of Public Health. Adolescent HIV counseling and tating policy. AIDS Office, Department of Public Health, 150 Tre ont St., Boston MA 02111 1990. 4 Massachusetts Department of Public Health. Recommended guidelines: Adolescent HIV counseling and testing. AIDS office, Department of Public Health, 150 Tremont St., Boston MA 02111, 1990. North RL. Leg11authority for IIIV testing of adolescents. J AdoIesc Health Cafe 1990;11:176-8?.

Appendix A

Do you usually take care of people 10 to 21 years old?

_-

Do my parents or another adult have to come with me?

Do I need my parents’ or another adults’ permission to have the I-IN test?

--

Will my parents or another adult be told the results whether I want them to be told or not? Can I get tested free? If not: How much will it cost? Do I have to pay before I get the test? Do you give teenagers who can’t afford the price a reduced rate? Will a bill be sent in the mail fro the lab, test and for the office visit? Would you put the test results in my me&al

records?

Will you put the test results in my medical records in the future? Will you automatically Will you automatically it asks for them?

give the results to r.iy school? give the results to my school if

Will you notify my sex parTncr(s) if I want you to? Will you notify rrly partnerL4

If I dan’t want you to?

Will you give the results te my. employer? Will you give the results bo my future employer? Will you give the results to my parents’ insurance company? Will you help me talk to my parents, sex partner(s), or otl.,?r people whom I might want to tell? 1%idiyou give the results to my insurance company in the future? Will someone explain both advantages of HIV testing?

and disadvantages

Do you give counseling before and after I take the test? [If the answer to this question is yes, be sure to ask how long the counseling session will be. You need a place that will give you a lot of time.3 Can I come back more than once to talk about whether or not to have the test? [You should be able to take your time making this decision.1 How long will I have to wait for an appointment? How long does it take to get the test results? How will I be told the results?

‘Information Checklist”Copyright 1992 by Consumers Union of U.S., Inc.. Yonkers, NY 10703-1057. Reprinted by permission from CONSUMER REPORTS BOOKS, 1992.

--

Appendix B TATE DEPARTMENT OF HEALTH

II you want to mquest an HIV related test in New York State, you must Qive your amsent ln wrfting. hdtn# #oPHIV mere am a number of tests that can be done tar HIV. ~sg ycur dodar or counsebr for spectfk lnfonnatbn on these tests. A commn test for HIV iS the HIV Antibody test, a bbod teat. A sample of bbod ls taken from your armwith a naadla. The test shows Wyou are infected with HIV, tha vhw whkh ls known to cause AIDS. A negative l4lV anllbody test result means that you p&ab)y are not lnfectscf.Howaver, it takes time for HIV intectbn lo show up in your bbod. ll you think you have been expowd to HIV during the past six months. you will need to be retested to confirm that you are not infecled. Your doctor or HIV dunsebr will explain this ta you. A p~ltl~ HIV antibody test boil means that you have been exposed to the virus and are infected. You can infect other6 Sometimes the test result is not clearly positive or negative. Your doctor or counsebr will exptain such a resull and ash that you gtve consent for another sample of blood to be taken so that other tests can be done. mere are bffneflts to being tested if you test negative: Your doctor or counsebr will tell you how to protect yoursell from getting infected with the virus in the fulure. + You can end the fear which may come from not knowing il you are infected. if you test posittw: Your doclor can give you medical care and treatment that can heip you stay healthy and can slow down HIV ilfnass. . Your doctor can tell you how to prevent passing the virus to others. If you have had a chi# stnce you were infected, your child may nead addttbnal care and treatment. Your doctor can provide informatbn abcut medkal care available for Mdren who may be infecled with HIV. if you are a pregnant woman, your doctor can provide the cara you need and tnformatbn about services and optbns available to you. Your doctor can tell you about the risks of passing HIV infection to your baby and the medical cara available for babbs who may be fnfected with HIV. If you are thinldng of having a child. you will be told about the PosdMmy of passing the virus to your baby. l

l

l

l

l

CQtIfldatttlal or Anunyfnwn Voluntary Teatlng When you decide to be tested. you may choose either anonymous or eDnfttential testbQ: ff you do not want anyone to know your test results or that You wBIB tested, you can go to an anonymous test sle. You will not he asked your name or address.

l

If you want your results to be care and become part of your medical record, a confbential test oan be by your heafth care provider.

Fteattlts New York State law protects HIV related information, including HIV test reSUItS, from being disclosed by health and social service providers without the patient’s consent. By law. giving HIV information about you without your consent or testing you for HIV without your written consent may be punished by a fine of up to %5000 and a jail term of up to one year. In the law. there are some exceptions that give your health care providers permission to share HIV information about you without your written consent. These include: Medical professbnais treating you or your child may discuss your HIV informatbn wilh each other or wilh their supervisors, hut only in order to provide necessary care for you or your child; A hospital or other heatth care pnMder may share HIV informationwith your insurance company 1 the informationis necessary to pay for your medical care; A physician may inform your sexual or needle-sharing contacts without giving your identfty and only alter informingyou of his/her intent to do so; A commitlee, organizatbn or government agency, when it needs such information to supervise, monitor or administer a health or social service may have access to this information; AQenCieSor prospective adoptive or foster parents for foster care or adoption purposes may have access lo this information: A federal, state, counly, or bcal heallh officer may have access to this information when state or federal law requires disclosure: if you are a minor, your parent or guardian can be told HIV related information about you if it is necessary to provide timely care for you, unless it wouid not be in your best interest to do so; Any person to whom a cowl orders disclosure may have access lo this information: Medical personnel and certain other supervisory staff may have access to your HIV information in order to provide services to you or lo monitor services. if you are in jail or prison. or on parole. l

l

l

himen

hnmunaddiciancy

Virus thatcauses AIDS.

(wntinued~

DOW25562 f6rSl! p 1 of 2

Appendix B (continued~

rtant information to

l-800-962-5065.

(212) 870-8624 of the New York City Commission on for help. These agencies Human Rights at (212) r civil rights. are responsible for prot

My questions about the HIV test were answered. I agree to be tested for WV. Date:_ Signature of b’h;prson fo be fesfed or person aurhorized to consent for Ihe pg n to lest

Print name of person lo be tested.

Print name of person consenting if different from person to be tested.

Pm-test counseling was verbally provided in accordance with Article 27-F of the New York State HIV Confidentiality Law HIV including, how the HIV test is done, the meaning of the test and test results.,the possible consequences of discbsi information, and the protections against unauthorized disclosure of HIV related informatbn provided by faw. to the above individual. I answered the above individual’s questions about the test and offered him/her an unsigned copy of the WIV Informed Consent Form at the time informed consent was obtained.

Name

Facilily/plovider Name

DOH-2556~ (9’91)

P

2 of 2

345

Appendix C

AUTHORIZATION FOR RELEASE OF COPGIDENTIAL HIV* RELATED INFORMATION-

JEW YORK STATE Xl’ARl-MEN- OF HEALTH

mxhehit+

CASE MANAGEMENT

PROGRAMS

Confide.ntial HIV Related Formation is arty information indicating that a person had an HIV related est, or has HW infection, HIV related Uness or AIDS, or any information which could indicate that a mson has been potentialiy exposed to l-W. Under New York State Law, except for certain people, confidential hzgkn

HIV related information

cm only

to persons you ailow to have it by signing a release. You can ask for a list of people who can be

$ven cc&dential HIV related information withuut a release form. If you sip this form) HIV related infctmation can be given to the people listed on the form, and for he reason(s) listed on the form. You do not lwe to sign the form, and you can change your mindat

lny timtz. If you expedience d’

’ * ~ticm because of release of HIV related information, you may contact ‘rhe PJew York State Division of Human Rights at (212) 870-8624 or l-MO-750~AIDS, ot the New York City c2xnmission of Human Riglm at (2rZI 306-76%. These agencies are responsible for protecting you rights.

PLEASE DO NOT FILL IN SHADED SECTIONS.

Name and address

of pemsigning

this form (tt other than above):

Relationshtp to person whose HIV i.nformation will be released:

Fnm:

TOto:

*Human Inununodeficiency Virus that causes AKt3.

PLEASE

DOH-3507

(4/W)

p. 1 of 2

COMPLETE

INFORMATION

ON REVERSE

SIDE

35s Appendix

C Icontinued)

AUTHORIZATION FQR RELEASE OF CONFIDENIFIAL HIV RELATED INFORMATION - CASE MANAGEMENT BRtX%gPgMS I authorize Provider nanw and address to release the records of the person named on the reverse, including HIV r&t& infomation, to the agencies listed below. I also authorize the agencies listed below to release such records back to the named provider and to share necessary HIV related information among and between themselves for the

purpose of providing assistance in receiving needed services. I understand that these records, including the HIV related infmnation, cannot be shared by these agencies with persms or organizations not named or identified on this release and hat I can withdraw my consent to this release agreement at my time.

Agency

AgwKy

nsune:

name: 1

Address:

Address:

Staff member name (if known):

Staff

Staff member title (if known):

Staff member title (if known):

Agency name:

Agency

Address:

AddW?4%

Staff member name (if known):

Staff mcmbcr name (if known):

Staff member title (if !xncnvn):

Staff member title (if known):

member

name (if known):

name:

Agency name;

Agay

Address:

Address:

Staff mmnber name (if known):

Staff menlber name (ilknuwn):

Staff member

Staff member

My questions

title {if known):

about

related information

this form have been

I know

title {if known):

t!nat I do not have to allow release

and that I can change my mind at any time. Date:

Signature: DOH-3507

answered.

IIWIV:

(4/92) p. 2 of 2

of I-W