Delivering HIV transmission prevention services to ...

Delivering HIV transmission prevention services to HIV-seropositive persons in clinical care

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Mary Spink Neumann, Gary Marks & David W Purcell

Summary Healthcare providers caring for HIV-seropositive men and women have a unique opportunity to help their patients engage in healthy behaviours that improve quality of life and reduce risks of transmitting HIV to others. This chapter describes brief behavioural intervention strategies and referral mechanisms they can use. The clinical care setting is ideal for addressing behavioural issues because healthcare providers can sensitively integrate behavioural prevention with routine medical care and assess and address behaviour change across time. The chapter begins with discussion of psychological, social, cultural, and structural issues that may lead to risky sexual and drug-use practices by HIV-seropositive patients. Characteristics of healthcare providers that may facilitate or detract from prevention efforts are also discussed. The chapter continues with suggestions for eliciting risk information and integrating it into prevention messages regarding the importance of protecting patients' own and their partner's health if they are sexually active or if they use drugs. Suggestions for reinforcing these messages within the clinical care setting, screening patients for behavioural risk, and providing appropriate intervention strategies tailored to those risks are presented. The referral of patients with behavioural and psychosocial issues to community-based agencies is also discussed.

Introduction Men and women with HIV/AIDS who engage in unsafe sexual behaviours may place others at risk for HIV infection and place themselves at risk for secondary infections - such as syphilis, gonorrhoea, human herpesvirus 6 and hepatitis B and C – that can accelerate their HIV disease and make them more infectious [1,2]. Thus, it is extremely important that HIV-seropositive persons who are sexually active and those who inject illicit drugs engage in safer sex and drug-use practices, or abstain from sex and drugs, to guard their own and their partners' health. HIV-seropositive persons encounter a range of barriers that impede their access to, and use of, healthcare and prevention resources. In addition, their attitudes toward sex and druguse practices and, ultimately, their behavioural choices are influenced by ethnically and culturally determined values and attitudes and by their type of HIV-related risk. Healthcare providers can adopt a variety of measures to address these matters for their HIV-infected patients. Research has shown that HIV-seropositive patients who have good relationships with their healthcare providers and who believe that their questions and concerns are being addressed are more likely to make positive health choices such as keeping medical appointments, adhering to their antiretroviral therapy and increasing their self-care behaviours [3,4]. Healthcare providers also can influence their HIV-seropositive patients to make positive choices about their sex and drug-use practices. This chapter presents the underlying causes of, and issues related to, HIV-related risk behaviours among HIV-seropositive persons and describes how healthcare providers can address these risk behaviours. Healthcare providers caring for men and women with HIV infection can play a key role in helping their patients reduce risk behaviours and maintain safer practices. By sensitively screening for the patient's risk, communicating prevention messages, normalizing discussion of sex and drug-use behaviours and positively reinforcing changes to safer behaviour, healthcare providers may significantly improve their patient's health and reduce their risk for transmitting HIV The provider's effectiveness is enhanced through the repeated patient contact afforded by ongoing clinical care. Brief provider-delivered approaches have been effective with a variety of health issues, such as smoking and physical activity [5-14], which suggests that their use with HIV-seropositive patients may be effective. Importantly, the effectiveness of the intervention may be enhanced when offered in the context of a positive and supportive patient-provider relationship that includes mutual agreement of the respective roles and responsibilities of the healthcare provider and the patient [15].

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However ideal the clinical care setting, especially the HIV outpatient clinic, is for delivering prevention messages and for addressing behaviour change, it is considerably under-utilized for these purposes. For example, several investigators report that nearly 25% of healthcare providers caring for HIV-seropositive persons never discuss safer sex with their patients [16-19]. The clinical care setting provides an opportunity to involve healthcare providers in prevention, to reach a large number of HIV-seropositive persons, to integrate behavioural interventions into routine medical care, to deliver ongoing counselling and support to patients and to refer patients to other services as needed. Behavioural interventions can be performed during the medical exam each time the patient is seen at the clinic. `Behavioural intervention' means a systematic mechanism or specific strategy designed to change the knowledge, attitudes, beliefs, behaviours or practices of individuals in order to reduce their health risks. Behaviour change is often a slow process that occurs in incremental, sometimes discontinuous, steps; patients will have different behavioural issues that need attention at any given time. Therefore, a brief behavioural intervention conducted at each clinic visit has the potential, over time, to address the individual needs of patients and to motivate them to adopt and maintain safer practices.

Working with HIV-seropositive persons Persons with HIV and their healthcare providers bring their own perceptions and expectations to the clinical care office visit. Past experiences, current circumstances and cultural values can affect a person's behaviours, which take place within the context of the person's physical and social environment. Healthcare providers who are conversant with the underlying issues, contexts, circumstances and motivations of their patients' risk behaviours and barriers to changing those behaviours are in a good position to help their patients overcome obstacles that impede clinical care and behaviour change. Providers who are aware of their own issues that they bring to the patient-provider interaction may be able to deal with them constructively.

Patient factors The patient's HIV-related risk behaviour can be influenced by his or her personal situation, psychological state and past experiences [20]. When faced with competing priorities, patients may choose to deal with their pressing life issues and ignore their health and HIV prevention. Furthermore, people constantly adjust and adapt their behaviours and resist the changing conditions and circumstances that affect them. Depression. Depression, with its symptoms of anxiety, guilt and shame, sometimes affects HIVseropositive persons. Depression has been associated with unsafe sex among many groups of HIVseropositive persons, such as men who have sex with men (MSM) [21-25]; injection drug users (IDUs) [26]; youth [27]; and heterosexual men, women and serodiscordant couples [28,29]. Some MSM may cope with the stress of their serostatus by avoidance or distraction, such as having sex or relapsing to unprotected sex to make themselves feel better [21,24]. Many IDUs organize their lives around drug use and are continually anxious from the physical and emotional demands of usage [30]. HIV-infected IDUs often have poor coping or problem-solving skills and may increase their drug use to relieve depression [26]. For many HIVseropositive youth, depression and other psychological disorders predate their infection [31] and are exacerbated by their positive serostatus [27]. Women who have been pregnant while infected may feel guilty for infecting their fetuses or having an abortion, especially if they were drug dependent, had psychological disorders or learned of their serostatus during a prenatal test [32]. In addition, the combination of HIV-related depression and drug use has been found to adversely affect the progress of HIV disease and the daily functioning of HIV-seropositive African Americans [33]. This situation may be similar for other ethnic groups. Substance use. In general, substance use impairs a person's judgment and is associated with having unprotected sex. Substance use is affected by the person's stage of use or dependency, type of drugs used, setting and available means of hygiene, social relationships between users, economic status and emotional and physiological state at the time of injection. All of these factors can influence the safety of every injection episode [34]. Among youth, being HIV-seropositive correlates with use of alcohol and marijuana [31].

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Many HIV-seropositive youth have these and other drug addictions [27,31]. Some HIV-seropositive IDUs increase their use of illicit drugs to help them mentally and emotionally cope with their serostatus; such selfmedication may increase their risk for transmission. Among serodiscordant heterosexual couples, alcohol use correlates with relapse to unprotected sex [35]. Stigma. Stigma, rejection and even violence do occur as a result of HIV infection [36], and yet HIV-seropositive persons are urged to disclose their serostatus to current and future partners. Some studies have found that disclosure has not been related to safer sex unless safer sex was negotiated after disclosure, and many HIV-seropositive persons have safer sex without disclosing [36-38]. MSM and women who have sex with women (WSW) already face stigma associated with homophobia. Minority persons confront racism. IDUs are categorized as criminals. Adding HIV infection to sexual and racial minority status and to drug use compounds stigma. Some infected persons may cope with fears of stigma and rejection by becoming abstinent; others may increase their number of casual sex partners. Desire for intimacy. The emotional desire for intimacy is normal; however, condom use can interfere with feelings of closeness. HIV-seropositive persons cope with their desire for intimacy in a variety of ways. MSM may turn to monogamy as a risk-reduction strategy or seek HIV-seropositive partners with whom to have unprotected sex [36]. Youth are more likely than adults to become abstinent [31]. Some researchers note that serodiscordant couples have sex less often and use condoms more after diagnosis but these changes do not persist [35]; other researchers report that discordant couples eventually become fraternal or the couples break up [36]. Along with the desire for intimacy is the desire for children, a frequent issue for women and serodiscordant heterosexual couples. Faced with the choice of safer sex or children, some persons choose the latter [17,35,36,39]. History of violence. HIV-seropositive persons may experience psychological effects from a history of violence, or physical or sexual abuse during childhood or later years. Many HIV-seropositive youth have experienced physical and sexual abuse [31] and dealing with HIV infection exacerbates their psychological distress [27]. Some may have unprotected sex as a reaction to anger over past abuse [36]. HIV-seropositive persons may also be victims of violence because of their serostatus [40]. Experiences with health care. Several things make it difficult for HIV-seropositive patients and their providers to achieve the relationship and clinical care that patients desire. One is the patient's previous experience with the healthcare system, before and since HIV diagnosis. Generally speaking, HIV-seropositive persons have some past clinical care experiences in common. One example is many healthcare providers and staff inaccurately presupposing that heterosexuals do not have anal sex, lesbians only have sex with women and IDUs do not have sex [41,42]. Another example is providers and staff non-verbally communicating negative reactions by showing facial expressions of shock or disgust, shaking their heads ‘no,’ failing to maintain eye contact, turning their backs while talking and keeping excessive distance between themselves and their patient [41]. Other HIV-seropositive patients have reported that indiscreet labelling of clinic notes and their medical charts have compromised confidentiality [43]. HIV-seropositive women have reported discontinuity in services and service providers and insufficient resources and expertise in treating their health needs, especially their gynaecological needs [44]. Infected women generally receive little or no information on birth control [17]. Two other concerns expressed by some HIV-seropositive women are taking HIV/AIDS medications that have not been tested on women and differential treatment between women receiving public assistance and women with their own health insurance [44]. Some WSW have reported that they are assumed to be heterosexual and, if they disclose their sexual orientation, have confronted disgust, denial of care, condescension, intimidation, breaches of confidentiality, attempts to change their sexual orientation, undue roughness in their physical examination and even sexual assault by their provider [42]. WSW also have had to deal with the myth that lesbians are immune to HIV and other sexually transmitted infections (STIs), even though many WSW also have sex with men [42]. The result of this myth is that WSW are less likely to be screened for HIV, STIs, or cervical cancer. These experiences inhibit WSW from disclosing their sexual preferences and behaviours to their healthcare providers.

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Many MSM have encountered homophobia [3]. Some have received inaccurate explanations of what to expect throughout the course of their illness [18]. Young MSM have reported stereotyping, judgmental attitudes, treatment for STIs without counselling, sexual misconduct by their providers and denied access to psychological care [45]. These experiences may cause MSM to avoid the healthcare system. IDUs are typically less satisfied with their patient-provider relationship with their primary care staff interactions than are persons infected through heterosexual exposure [4,41,43]. One of the problems is that providers seldom address IDUs' sexual activities.

Societal and cultural factors The patient's HIV-related risk behaviours are influenced by the societal, cultural and physical context in which the patient lives. Some of these factors include his or her amount of control, economic situation and availability of health care and prevention. Other factors - such as culture and ethnicity - establish the patient's basic premise on values, roles and expectations [20]. Amount of control in relationships. Lack of control in relationships may be a significant contributing factor to unprotected sex and needle sharing [39,46-48]. Regardless of serostatus, many persons lack the skills and self-efficacy for negotiating safer behaviours with their partners. This lack of skill inhibits persons from exercising control in their relationships. The nature of the relationships - such as dependence on commercial sex work for subsistence or dependence on another person for financial support, drugs, or inhome nursing care - also contributes to lack of control. Control in relationships often is assigned by culture; for example, Hispanic women traditionally leave decision-making to their men and are expected not to raise sexual issues. In serodiscordant couples, the seropositive persons may risk verbal or physical abuse from their partners [40]. Lack of control affects needle-sharing among IDUs. For example, if injection partners pool their money to purchase a dose of heroin, the order of injection may depend on the amount of money each contributed, or joint purchase of a syringe may inhibit bleaching between uses [34,49]. Other circumstances, such as homelessness, immaturity or legal status as a minor, add to lack of control. Lack of control may lead patients to subordinate their needs to the needs of other persons. For example, women may be caretakers for other HIV-seropositive family members [44]. Finances. Finances, including poverty, unemployment, financial emergencies and problems with health or life insurance, are associated with issues of control in relationships. Being unemployed correlates with having unprotected sex for women in serodiscordant heterosexual relationships [35] and with being a victim of violence among HIV-seropositive MSM [40]. Lower socioeconomic status, as is the case with some minority patients, contributes to decreased access to health care and juggling of competing priorities for limited available funds, such as choosing between medication and food [31]. Transportation and housing. Transportation and housing needs may influence a person's HIVrelated risk behaviour. Patients may have difficulty keeping appointments and purchasing condoms, clean needles or medications if they have no car and if public transportation is not close to their home, clinic or pharmacy. Rent and HIV prevention may be competing priorities for persons with limited funds. HIV-seropositive women may need food and childcare programmes in addition to housing and transportation [44]. Patients may have tenuous living arrangements or may be homeless and may have to exchange sex for money, a place to sleep, or a ride to an appointment. Youth are especially vulnerable [27,31 ]; they may have run away from home or, in the case of young MSM, may have been forced to leave home when they revealed their sexual orientation [42]. Persons who are homeless are more likely to be victims of violence [40], and homeless IDUs have no reliable places to inject unobserved, to keep injection paraphernalia and hygiene supplies or to access clean water [34]. Immigrants and undocumented residents may have limited choices about where to live. Cultural values and attitudes. HIV-seropositive MSM, IDUs and heterosexual men and women may encounter prevention barriers if they happen to be symptomatic, poor, or persons of colour. For example, many African Americans are suspicious of institutional settings. Some may recall the Tuskegee project* and

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have concerns about being unwitting test subjects for HIV/AIDS studies or for testing new drugs. Some African Americans believe that HIV/AIDS is part of a US government plan for deliberate racial genocide [51]. Hispanics who are less acculturated to the dominant culture of the USA may hold the traditional cultural values of showing respect to authority and avoiding conflict and may not ask their healthcare provider questions, even if they have not understood an instruction or explanation. Less acculturated Hispanics may not report same-sex activities to their healthcare providers because of religious values or the belief that men having male-male sex are `gay' only if they are the receptive partner [52]. Hispanics who are more acculturated tend to have more unsafe sex than do less acculturated Hispanics [53]. Many Hispanics have received medical services from providers who did not speak their language and who did not supply a medical interpreter. Confidentiality is breached if they need to have an accompanying family member translate for them. HIV-seropositive Asian Americans and immigrants, who value harmony and avoidance of conflict, may consider disclosing their serostatus to relatives only when health reasons necessitate it [54]. Barriers to disclosure to family members include protection of the family from shame, protection of the family from obligations to help, avoiding communication of highly personal information and avoiding personal dishonour [54]. Consequently, a provider needing next-of-kin decisions for a hospitalized Asian patient may discover that the patient's family is unaware of their relative's HIV status. Legal issues. Legal issues may be in the forefront of a patient's mind, leaving little time or attention for HIV prevention. HIV-seropositive parents may be dealing with child custody lawsuits, trying to find childcare or deciding the guardianship of their children should both parents become ill or die [19,44,52,55]. IDUs may engage in theft or sexual exchange to support their drug habit [34]; because drug use is illegal, IDUs often have a history of incarceration and may be on parole. State and local syringe and paraphernalia laws may criminalize syringe possession, which makes it difficult to always use clean needles. HIVseropositive youth frequently have a history of arrest, incarceration, or out-of-home placement [31]. Substance-using pregnant women may be concerned about potential charges of in utero child abuse or loss of custody when the child is born. Public policies. Public policies that may affect HIV-related risk behaviour include the Americans with Disabilities Act, confidentiality of medical records, disclosure laws, HIV name reporting, drug paraphernalia and syringe laws, partner notification, linguistic accessibility, criminalization and child custody. How these policies pertain to any particular patient cannot be predicted, but HIV/AIDS healthcare providers need some familiarity with these policies to more fully understand how a patient's policy-related concerns might affect their behaviour.

Provider factors The healthcare provider is another factor in the HIV-seropositive patient's universe. The provider should assess what he or she introduces into the patient-provider interaction either deliberately or inadvertently and be aware of how the clinical care setting, his or her own attitudes, and other factors affect the patient. To increase their influence on a patient's behaviour, providers should make a conscious effort to be positive, supportive and respectful and to treat the whole person, not just the infection. Clinical care setting. The environment of some clinical care settings can be uncomfortable, impersonal, unwelcoming, or intimidating. Office procedures – such as discussing a diagnosis within earshot of other patients or flagging the charts of HIV-seropositive patients in a strikingly different way from those of other patients – may violate confidentiality. In addition, the clinical care setting may not be equipped to assist the patient with his or her HIV prevention needs. For example, Asian Americans and immigrants may need assistance in providing AIDS education- for example, translated brochures – to family members who _________________________________________________________________________________________________ The Tuskegee Syphilis Experiment was a US Public Health Service research project in which 400 African American men infected with syphilis were recruited for a longitudinal study to determine the effects of untreated syphilis. The research ran from 1932 to 1972. The men were prevented from receiving syphilis treatment during the course of the project, even when a cure was found in 1943 [50].

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have little knowledge in this area [54]. Office staff may have personal biases towards HIV-seropositive patients or their risk behaviours, and that bias may show. Personal bias. The healthcare provider may prefer to treat diseases other than HIV or may think of patients as ‘cases’ instead of people. The provider may presume that they know the patient's current activities, or may be uncomfortable discussing sex, or may have a tendency to misinterpret high-risk behaviours as the patient's personal inadequacies or cultural maladaptation. The provider may be repulsed by certain HIV-related risk behaviours or fear occupational exposure when treating HIV-seropositive patients. The provider may have other personal biases – such as homophobia or racist attitudes – or may think that the patient would be better served by a provider of the patient's own race or sex. Racial or ethnic matching between patients and providers does not generally seem to be related to patient satisfaction with their patientprovider relationship [4], although for some individual patients, this may be important. Some providers may view patients' questions as challenges to their expertise or may believe that it is not their job to address nonmedical concerns. If providers do not make a conscious effort, they may non-verbally express their bias to their patients. Awareness of patient's perspective. While a patient's culture and race or ethnicity remains constant, his or her psychological state, experiences, finances, and relationships may change from one office visit to the next. Risk behaviours may change over time, improving or worsening, and patients may engage in more than one HIV-related risk behaviour. For patients, managing their HIV infection is important but may not be the most important issue in their lives. Surveys of HIV-seropositive persons reveal many common expectations for their patient-provider relationships. They want their healthcare provider to have technical expertise and up-to-date information [3,4,44]. They expect their providers to initiate discussions about HIV and their sexual history, to include them in treatment decision-making and to provide comprehensive care or to consult with or refer them to other specialists [3,17,44,56]. Patients also want their healthcare providers to be compassionate, empathetic, non-judgemental and comfortable discussing personal issues [3,4,44,57]. They want providers to ask about their relationships and sources of social support, to offer prevention strategies and risk-reduction counselling, to emphasize the importance of favourable health practices and to address their whole person – physically, psychologically and emotionally [3,44,57]. Other desires are more specific. Many young MSM also desire respect for their social identity [45]. IDUs often want referrals to drug treatment programmes that are caring and supportive [3]. Women frequently want appropriate gynaecological care, counselling on contraception and zidovudine during pregnancy and on-site child care [17,44]. They would also like assistance with public transportation to the clinic; access to housing, food and legal aid programmes; assistance with medical payments and referral to support groups, with separate groups for women infected by heterosexual transmission and for those infected through drug-related behaviours [44]. WSW would like providers to be aware of their particular health issues [42,58]. Some less-acculturated Hispanics may want to involve family members in collective decision-making with the provider. Some African Americans would like their providers to be open to alternative treatments and to spiritual approaches [17].

Provider response Persons are more likely to change their risky behaviours if their underlying psychological, social, and cultural factors, not just the desired behaviour change, are addressed. Behaviours are not static; patients who are abstinent currently may not remain abstinent for the rest of their lives. The longer the time since diagnosis, the more difficult it may be to maintain safe behaviours [35]. One advantage of delivering HIV prevention interventions during clinical care visits is that providers see patients repeatedly and can follow their medical and behavioural progress. Another advantage is that patients who are motivated to get regular medical attention may also be motivated to change their risk behaviours, given direction and encouragement.

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Healthcare providers can do several things to address patients' HIV-related risk behaviours. They can prepare to integrate interventions into their clinical care settings by (a) receiving training on speaking comfortably with patients about sex and drug-use behaviours and to use simple, everyday language [6,16,59], (b) becoming familiar with the underlying causes of and issues related to risk behaviours among HIVseropositive persons [20] and (c) establishing an approach to incorporate HIV risk-reduction interventions during patients' clinic visits. Healthcare providers can prepare to make patient referrals by identifying local HIV prevention and social services, especially those in the USA supported by the Ryan White CARE Act and contacting persons in those local service programmes to facilitate subsequent referrals.

Receive communication training Healthcare providers must be able to communicate effectively with their HIV-seropositive patients about risk reduction. To do so, they must be able to speak comfortably about the sex and drug-use behaviours that put the patient at risk for transmitting HIV and acquiring other sexually transmitted and blood-borne diseases [16,41,60]. If such conversations and related risk-reduction messages are not judgmental, punitive, blaming, or fear-invoking, they are more likely to be effective, and HIV-seropositive patients will be more likely to discuss their risks [3,4,61-64]. Providers should be aware of the potential importance of race, ethnicity and social class in communicating with their patients but should not make assumptions based on stereotypes. Being sensitive to cultural values related to medical treatment, sexuality, homosexuality, abortion, dying and disease etiology will minimize provider and client frustration [16]. Healthcare providers also need to be able to give explanations and instructions in simple, everyday language to minimize patient confusion and misunderstanding. For example, patients may be confused about the true risks of oral sex or may think that their undetectable viral load means that they are no longer infectious and no longer need to take precautions. We suggest that all providers ensure that they are able to speak clearly and comfortably with their patients about sensitive issues. Healthcare providers in the USA can receive training in communication skills at AIDS Education and Training Centers (AETCs), funded by the Health Resources Service Administration (HRSA), and at other sources [65]. The training offered by AETCs is free and provides Continuing Medical Education credits. The US Centers for Disease Control and Prevention (CDC), HRSA, the National Institute of Mental Health (NIMH) and the Infectious Disease Society of America (IDSA) are preparing recommendations for healthcare providers with regard to HIV prevention for HIV-seropositive persons seen in clinical care settings. This suggestion follows the CDC/HRSA/NIMH/IDSA recommendations [66]. We suggest that healthcare providers initiate a partnership with the patient to address the medical and behavioural aspects of keeping the patient as healthy as possible and protecting the patient's sex and drug-sharing partners [15]. This might be done by making a general statement of commitment to the patient's health care followed by a suggestion that the provider and patient take responsibility for complementary aspects of medical care and prevention of HIV transmission. The healthcare provider can take responsibility for medical matters, the patient can take responsibility for behaviour and partner protection, and both can work together to decide on what these involve. This partnership approach has been empirically examined in other medical contexts - such as treatment for hypertension - and has been found to be associated with an improvement of patients' understanding of their disease and its treatment [67], retention of medical information [68,69], satisfaction with health care [70-72] and adherence to clinic appointments and treatment regimens [73-76]. The approach also appears to have application to HIV-seropositive patients [3,19].

Prepare clinical care setting To establish an approach to incorporate HIV risk-reduction interventions throughout patients' clinic visits it is necessary to structure the clinical care setting in ways that support and enhance a provider-based intervention and that reinforce HIV prevention messages.

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Repetition of prevention messages in various places and by various staff members helps reinforce the messages' importance and increases the likelihood that patients will remember them [16]. Reinforcement can be accomplished with pamphlets, posters and condom distribution. Staff members such as the receptionist, nurse, medical assistant, physician assistant, and physician can assist the healthcare provider's HIV prevention efforts. In some clinical care settings, it may be feasible to make counselling or more intensive interventions available. Healthcare providers can assess constraints to delivering counselling or HIV risk-reduction messages-such as patient load, provider discomfort or lack of training- and find ways to minimize these potential barriers. We suggest that all HIV-seropositive patients, especially new patients, receive printed information in their primary language about HIV transmission risks and the importance of preventing transmission to others and disease progression in themselves. This information can be presented in a pamphlet and given to patients when they check in with the receptionist. The information can be available at other locations in the clinic as well. Posters and other visual cues containing prevention themes and messages can be displayed in the waiting and examination rooms, where appropriate. Additionally, condoms should be readily accessible. Efforts should be made to ensure that all clinic staff members and the provider reinforce each other's messages and activities. For example, office staff could offer patients male and female condoms at checkout. These suggestions follow the CDC/HRSA/NIMH/IDSA recommendations [66].

Screen patients for risk Screening patients to determine their HIV-related risk will enable healthcare providers to more efficiently provide appropriate interventions for their patients. Risk screening refers to a brief evaluation of HIV behavioural risks and clinical factors used for decisions about which patients should be provided with tailored counselling, offered risk-reduction interventions, or referred for further interventions or services. Risk screening can be done by the provider during the consultation, as part of taking the medical history, or by office staff interviewing the patient or giving a selfadministered questionnaire before the consultation. Research has shown that the majority of patients will tell their healthcare providers about their risk behaviours when asked [3,41]. Few risk screening approaches have been proposed specifically for HIV-seropositive patients; those that exist are designed for research studies (CDC/HRSA/NIMH/IDSA working group, CDC, personal communication). We recommend that screening HIV-seropositive patients for risk, including laboratory tests for STIs, be done at each office visit. Open-ended questions encourage the patient to provide details. It helps the person doing the screening if he or she begins with a standard, comfortable-to-deliver, open-ended statement or question, such as `People's lives are constantly changing, so I ask all my patients about their current behaviours' [41]. As a minimum, we suggest using open-ended questions to determine the patient's sexual orientation and past or present symptoms or diagnosis of STIs, drug use and sexual behaviour, especially sex while under the influence of drugs or alcohol. Providers should follow affirmative responses with probing questions to determine the nature and extent of the patient's risk, such as injecting drugs with shared equipment, frequent unsafe drug injection, unprotected anal sex with partners of the same or opposite sex, infrequent condom use, numerous anonymous sex partners and serostatus of sex and needlesharing partners. The healthcare provider can probe for other issues of concern, such as not remembering sexual activity while drunk and harm or threats of harm. A discussion of the patient's risks, concerns and barriers to safer practices also provides helpful contextual information, uncovers misconceptions and alerts the provider to any urgent psychosocial needs. We also suggest that healthcare providers solicit questions from their patients, respond using everyday language and ask if the answer was understood and if the patient has other questions. In cases where the healthcare provider has concerns over comprehension, it might be useful to ask the patient to repeat in their own words what they understood the provider to have said.

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Provide general intervention The time that HIV-seropositive patients spend in consultation with their healthcare providers is often a missed opportunity for prevention [17,19,77]. With a sentence or two, providers can encourage their patients to engage in safer behaviours. General interventions are a type of behavioural intervention and consist of the healthcare provider establishing a partnership with the patient and delivering general prevention messages. General prevention messages emphasize the need for safer behaviours to protect the patient's own health and the health of his or her sex or drug injection partners. The effectiveness of positively framed messages, such as staying healthy and keeping partners safe, in promoting preventive behaviours among healthy patients has been shown in other health and safety contexts [78,79]. The self-protective, negatively framed message, such as getting sick, may be quite powerful when communicated directly to HIV-seropositive patients by their healthcare providers. For example, it has been found that HIV-seropositive patients who believed that contracting a secondary infection-such as syphilis or gonorrhoea-might accelerate their HIV disease were more likely than other patients to engage in safer sex [80]. We recommend that healthcare providers give all patients general prevention messages. Patients who are already using safer sex and injection practices should also hear these messages to help prevent relapse. It is important that healthcare providers commend these patients and reiterate the importance of continuing safer practices [3,15]. The healthcare provider should deliver general prevention and safer sex messages and repeat the brief risk screening at each visit. By listening carefully, the provider may discover changes in the patient's behaviour or circumstances. For example, an abstinent patient may have started dating, a patient who previously declined may subsequently express interest in referral for drug abuse treatment, a female patient may suspect she is pregnant, or a patient may have lost his job and health insurance benefits. Such changes may indicate a need for tailored messages or referrals.

Provide tailored intervention Patients who currently are engaging in high-risk behaviours need more than just general prevention messages. Providers can tailor prevention messages to these patients' specific HIV-related risks. Tailored interventions are another type of behavioural intervention and rely on risk screening to identify the patient's specific risk behaviours, prevention messages specific to those issues and a mutually acceptable strategy for addressing those needs. Tailored messages are specific for each risk behaviour and the patient's willingness to change. During each visit, the healthcare provider can address each risk behaviour, emphasizing those the patient is closest to changing - that is, a behaviour that the patient plans to change or for which the patient has tried a safer behaviour for a short time or inconsistently- and encourages the patient until the change is complete and the patient is regularly practicing new, safer behaviours. Follow-up visits enable healthcare providers to continue to motivate their patients' movement towards adoption and maintenance of safer behaviours. Success in progress towards and completion of a change in behaviour encourages persons to attempt additional changes. Healthcare providers can then continue to positively reinforce maintenance of safer behaviours by praising the patient's efforts and by encouraging patients who relapse to resume the safer behaviours [81-84]. Although there is evidence for the efficacy of providerdelivered tailored messages for other health issues [85-89], the efficacy of single, brief, provider-delivered interventions with HIV-seropositive patients has not been studied extensively [19,90]. However, given the efficacy of the approach with other health issues, it might be applicable when adapted for the circumstances of HIV. We recommend that healthcare providers deliver tailored interventions to patients with recent STI or current symptoms of sexually transmitted disease (STD), those whose risk screening indicates current unsafe sex or drug injection practices and those who have mentioned issues of concern [19,90]. This recommendation also follows the CDC/HRSA/NIMH/IDSA recommendations [66]. First, the healthcare provider needs to

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determine which risk behaviours and underlying issues are feasible to address during the clinic visit and which may require referral (see Table 8.1). For those that can be dealt with during the visit, the provider should ask probing questions to determine how close the patient is to changing each behaviour. Figures 8.1 and 8.2 are examples of how to tailor a message accordingly. At each visit, the provider should inquire about the patient's current sexual and drug-use behaviours and progress toward changes discussed during the last visit. The healthcare provider should reinforce positive behaviour change through feedback, reminders and praise. If a patient has recently engaged in a high-risk act, the provider should reassure the patient that behaviour change can be difficult, learn the context or cause of the relapse and together strategize how the patient can avoid risk when faced with similar circumstances in the future. If a patient's lack of a specific risk-reduction skill is a barrier, it would be useful to include discussion and practice of that skill during the office visit. Examples of skills are correct condom use, ability to negotiate safer sex or needle use, coping with negative emotions, avoidance of situations that trigger risky behaviours and knowing how and when to disclose serostatus. Other members of the clinic staff can coach patients on risk-reduction skills or give general messages while the provider gives tailored messages. Two rows of sample messages are presented in each figure. The top row contains messages related to preserving the patient's health, and the bottom row has messages that focus on protecting the health of partners. The sample messages are constructed around motivational strategies appropriate for how close the patient is to changing the risk behaviour. The messages are leading questions intended to encourage the patient, through introspection, to progress towards adopting and maintaining safer behaviour. Tailored messages should address the patient's particular circumstances and encourage problem-solving to achieve behaviour change.

Make referrals Some patients may need more than the provider-delivered, tailored intervention. These patients may benefit from being referred to intensive behavioural interventions conducted elsewhere in the provider's clinic or to community agencies that offer HIV prevention services. Patients may also need referral to other types of support services to address personal problems that are obstacles to safer behaviours. If these problems are not addressed, then the patient may not be able to change his or her behaviour, regardless of whatever other interventions he or she may receive. Refer patients to interventions. Patients' risk behaviours are influenced by their environment, relationships, prior experiences and the challenges of living with HIV/AIDS, and therefore they may need referral to other, more intensive, HIV prevention interventions. For intensive behavioural interventions in the provider's clinic, there is strong evidence from randomized controlled trials (RCTs) for the effectiveness of short, single-session interventions [92-97] and for longer or multi-session interventions [98-101] for individuals and groups of HIV-seronegative patients. Evidence for the effectiveness of multi-session interventions for individual and groups of HIV-seropositive patients in clinical settings is limited to a few RCTs [102,103] and to other studies that may not have assessed behavioural outcomes [80,104-108]. Information on single-session interventions for individual HIV-seropositive patients in clinical settings are limited to studies that were not RCTs [109-115] (see Table 8.2). This lack of research is due partly to the earlier lack of life-prolonging treatments. Only since 1996 and the widespread introduction of protease inhibitors have HIV-seropositive persons became a focus of prevention efforts and resources. There is very good precedent with other chronic and communicable diseases to believe that interventions to change risk behaviours will be effective with HIV-seropositive persons.

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Table 8.1. Examples of issues that may be successfully addressed within clinical care settings and examples of issues that may need referral to outside agencies Issues that may be successfully addressed within clinical care settings Lack of knowledge about HIV transmission risks Misconceptions about transmission risk of specific types of sexual and drug-use practices Misconceptions about the relationship between viral load and transmission of HIV How and when to disclose HIV-seropositive status to a sex partner How and when to disclose HIV-seropositive status to family and friends Importance of using condoms or not exchanging body fluids with partners Ways of reducing the number of sex partners Ways to remember to use condoms and keeping them accessible How to convince a sex partner to use condoms Ways to obtain support from family, friends and lovers Ways to clean/disinfect injection equipment Ways to obtain clean needles Ways to avoid sharing injection equipment Mild psychological distress stemming from situational circumstances Issues that may need referral to outside agencies Insurance coverage (health or life insurance) Excessive use of alcohol or recreational drug use Drug addiction including injection drug use Depression, anger, guilt, fear, denial, suicidal ideation, or other mental health needs Need for social support Need for intensive HIV prevention intervention Sexual compulsivity, sexual dysfunction Sexual or physical abuse or threat (victim or perpetrator) Desire to have children (counseling for contraception or artificial insemination) Housing or transportation needs Nutritional needs Financial emergencies Child custody, parole or other legal matters

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Figure 8.1. Example of tailoring intervention about condom use ‘In the past year, have you had sex? ’

NO

→

→

Inquire about another risk behaviour or STOP

↓ YES

↓ ‘How often do you use condoms when you have sex?’

─────┐ │ ↓

↓ NEVER/SOMETIMES

ALWAYS

↓

↓

‘What do you plan to do in the future?’

“How long have you been using condoms?’

/

|

\

/

|

\

NO PLANS

UNDECIDED

HAS PLANS

6 MONTHS

↓

↓

↓

↓

↓

↓

‘Did you know that your could catch an STD that way, and it would advance your HIV infection?’

‘How do you think catching herpes would affect you?’

‘You’ve done great! How do you feel about yourself now?’

OR

OR

OR

‘How do you handle a situation when you want to use condoms but your partner doesn’t?’ OR

“How would you feel 5 years from now knowing that you had given someone HIV?’

‘How do you think not using condoms affects the people you’re having sex with?’

‘Who have you talked to about your plans?’

‘What kind of support do you get from your family and friends?’

‘You’ve done great! Have you ever though about changing anything else?’

‘What problems do you anticipate when you start using condoms?’ ‘How do you plan to deal with them?’

‘How did they react?’

OR

Where it is not feasible to have patients receive intensive behavioural interventions in the provider's clinic, there is strong evidence from RCTs for the effectiveness of HIV prevention interventions delivered by health departments and community-based organizations to HIV-seronegative persons [116-123]. Efficacy studies of agency-delivered interventions far HIV-seropositive persons presently are limited to a few RCTs [124-126] and to other studies, most of which did not assess behavioural outcomes [81,127-132]. However, interventions for HIV-seronegative persons are likely to be effective when adapted for seropositive persons. Efficacy studies are under way to test promising interventions specifically designed for HIV-seropositive persons.

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Figure 8.2. Example of tailoring intervention about needle sharing ‘In the past year, have you used a needle to inject drugs?’

NO

→

→

Inquire about another risk behaviour or STOP

↓ YES

↓ ‘How often do you loan or borrow a needle or works?’

─────┐ │ ↓

↓ NEVER/SOMETIMES

ALWAYS

↓

↓

‘What do you plan to do in the future?’

“How long have you been using your own and not sharing?’

/

|

\

/

|

\

NO PLANS

UNDECIDED

HAS PLANS

6 MONTHS

↓

↓

↓

↓

↓

↓

‘Are you afraid of getting hepatitis?’

‘What would you gain by trying not to share your needles and works?’

‘What are some of the good things that might happen if you stopped sharing needles and works?’

‘What are the situations in which you may be at risk of relapsing?’

‘You’ve done great! How do you feel about not sharing?’

OR

OR

OR

OR

OR

‘Have you heard that HIV can survive in the cotton, cooker and rinse water?’

‘Does anyone close to you ever talk about sharing needles and works? What do they say ?’

‘How do you think your friends will deal with you when you don’t loan (borrow) needles (works)?’

‘How do you handle a situation when you don’t want to lend your needle but your friend is begging you to?’

‘You’ve done great! What do you do to reward yourself?’

We suggest that healthcare providers make provision for referring HIV-seropositive patients to intensive behavioural interventions. Members of the provider's office staff - such as nurses or health educators - could be in charge of conducting intensive interventions. Alternatively, staff members from a local HIV prevention, community-based organization could be invited to conduct interventions at the provider's office or clinic. Attendance at and completion of these interventions should be noted in the patient's regular medical records. For clinical care settings where it is not feasible to conduct intensive interventions, patients may be referred elsewhere in the community. A person from the provider's staff could make referral appointments according

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Table 8.2. Examples of HIV prevention interventions Setting

Population

Intervention

Effects

STD clinic

Heterosexual African Americans and Hispanics (HIV-)

Small groups of persons of the same sex and ethnicity view a culturally specific video, discuss condom use and negotiating with partners and receive condoms in one 45-minute session facilitated by a counselor

Reduced STD reinfections [93-94]

University student health centre

College students (HIV-)

Small groups of persons view a video and are instructed about risk behaviours, condom use and HIV counseling and testing in one 60-minute session lead by a physician

Increased communication with sex partners about HIV [95]

STD clinic

Clinic patients (HIV-)

Individuals assess their risks and attitudes towards condoms and set and meet risk-reduction goals during four 50-minute sessions conducted by a counselor

Increased condom use and reduced STD reinfections [97]

Medical centre office

Men who have sex with men (HIV-)

Small groups of persons learn AIDS risk reduction, behavioural self-management, assertion and relationship skills and social support development in twelve 70- to 90-minute sessions led by two clinical psychologists and two assistants

Increased condom use and reduced unprotected anal sex [98]

Outpatient methadone clinic

Women who inject drugs (HIV-, HIV+)

Individuals receive free methadone maintenance, transportation, case management, psychiatric treatment, food vouchers, support groups and two counsellor contacts per month for 18 months

Reduced sharing injection equipment and reduced exchanging sex for drugs or money [100]

Communitybased organization

Heroin sniffers (HIV-)

Small groups of persons are taught about and discuss sex and AIDS, drug use and seeking drug treatment. They then role-play refusing offers of injection in four 1- to 1.5-hour sessions conducted by two trainers

Reduced likelihood of transitioning to drug injection [114]

Community centre

African American women (HIV-)

Small groups of persons view a video and discuss gender and ethnic pride and sexual decision making. They then learn and practice sexual assertiveness, communication, condom use and coping skills in five 2-hour sessions led by peer educators

Increased condom use, negotiating condom use and refusing to have sex without a condom [115]

School building during a weekend

African American youth at high risk (HIV-)

Small, age-matched groups of youth participate in games, video viewing and exercises to learn about risks related to sex and drug use, correct condom use and implementing safer sex – including abstinence – in one 5-hour session conducted by a counselor

Increased condom use and reduced number of sex partners [117]

Communitybased organization

Men who have sex with men (HIV+)

Small groups of persons review HIV trans-mission, risks and testing in a 1- to 1.5-hour lecture led by a gay health educator. They learn behavioural adaptation strategies and build safer sex acceptability in one 140-minute skills-training session led by a psychotherapist

Increased condom use for insertive anal sex [123]

HIV-, HIV-seronegative; HIV+, HIV-seropositive; STD, sexually transmitted disease.

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to an agreed protocol, follow up with the intervention provider to see if the patient attended and note the progress in the patient's records. In either case, the provider may discuss with the patient what she or he learned and was able to use successfully in adopting or maintaining safer behaviours. These suggestions follow the recommendations published by CDC/HRSA/NIMH/IDSA [66]. Refer patients to other services. Problems such as mental illness, substance abuse or homelessness may prevent patients from changing their risky behaviours. Patients may need substance abuse treatment, but their access may be limited by the low number of available appointments in some areas. Such problems may be beyond the capacity of healthcare providers to address during clinic visits, yet they need to be dealt with. Providers can identify local HIV prevention and social services, such as those supported by the Ryan White CARE Act in the USA or other prevention case management programmes. They can then establish a mechanism for linking patients to these services, and for follow up to ensure or encourage their use and also for receiving referrals back from these services. To make appropriate referrals, it is important to identify the types of services each agency provides and the clientele they serve. Referrals can be offered as part of integrated services and case management [33]. The primary care provider should be prepared to (a) assess the patient's likelihood of adopting and maintaining preventive behaviours with respect to HIV transmission, (b) characterize which barriers to preventive behaviour are most important to address for their patient and (c) refer the patient to appropriate clinical or supportive services that can address the barriers to adopting and maintaining behaviours that prevent HIV transmission. These suggestions are in keeping with the CDC/HRSA/NIMH/IDSA published recommendations [66]. Clinical care for HIV-seropositive individuals should ideally be a comprehensive continuum of care (see Table 8.3). This continuum of care may not exist in one physical location or in one agency. The primary care provider can be a sole provider of medical care or part of a multidisciplinary team that provides primary care to the patient. To make use of this continuum of care for the benefit of preventing HIV transmission, healthcare providers need to first identify factors that are likely to influence the patient's ability to adopt or sustain behaviours to reduce risk for transmission of HIV Assessment includes examination of the patient's willingness and ability to accept and complete the referral process. Service referrals that match the patient's self-identified priority needs are more likely to be successfully completed than those not matching patient Table 8.3. Continuum of care services that may be needed by HIV-seropositive persons Subspecialty care (for example oncology, dermatology, ophthalmology, pulmonary) Experts in the evaluation and treatment of sexually transmitted infections (STIs), tuberculosis and hepatitis C Reproductive health services Mental health services Substance abuse services Oral health Nutritional services Legal and domestic violence services Health insurance eligibility assistance Housing and food assistance Prevention case management Transportation services

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priorities. When a provider does not know where to refer patients or when patient needs are especially complex, referral to a case management system should be made [133-135]. In planning a referral, the healthcare provider will need to select a service that will be responsive to the patients' needs and appropriate to the patients' culture, language, gender, sexual orientation, age and developmental level. In consultation with the patient, providers can assess and address any factors that may make it difficult for the patient to complete the referral, such as lack of transportation or child care, patient work schedule, or cost. Accessibility and convenience of services predict whether a referral process will be completed. We recommend that patients be provided with specific information, including contact name, eligibility requirements, location, hours of operation and telephone number. For some patients, however, this may not be sufficient. Providing assistance, as in setting an appointment or addressing transportation needs, facilitates completion of referrals. Outreach workers and peer counsellors or educators can serve as important and effective resources to help patients identify needs and plan successful referrals. Knowledge of, or access to, a guide listing available referral resources and a system for tracking and monitoring referrals can help with the referral process. The referral system might include, where appropriate, memoranda of agreement for delineating roles and responsibilities of collaborating providers. An example of the contents of a referral guide is listed in Table 8.4. In the USA, referral guides can be obtained from state and local health departments, local health planning councils, consortia and community planning groups. Local, state and national HIV/AIDS information hotlines and internet sites and other community-based health providers may also serve as resources.

Table 8.4. Contents of referral resource guide For each resource, the referral resource guide should specify: Name of the provider or agency Range of services provided Target population(s) Service area(s) Contact names and telephone and fax numbers, street addresses,e-mail addresses Hours of operation Location Competence in providing services appropriate to the client's culture, language, gender, sexual orientation, age and developmental level Cost for services Eligibility Application materials Admission policies and procedures Directions, transportation information and accessibility to public transportation Client satisfaction with services

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We suggest that healthcare providers or a member of their clinic staff document the receipt of referred service and progress towards satisfactory completion of the service. Information obtained through follow-up can identify barriers to completing the referral, responsiveness of referral services in addressing patient needs and gaps in the referral system. If the patient did not access or complete a referral, the provider should determine why and respond appropriately, such as rescheduling an appointment, making suggestions for addressing the problem or offering an alternative referral that would not present the same obstacle. If the services were unsatisfactory, the provider could offer additional or different referrals. If the patient did complete the referral, the provider should determine the patient's degree of satisfaction. Providers could note patient comments in their referral resource guide and consider this information when making referrals for other patients.

Conclusions Healthcare providers treating HIV-seropositive persons can help their patients protect their health and the safety of their partners. Spending a few moments on prevention at each clinic visit can help move patients toward the adoption and maintenance of safer behaviours. The healthcare provider can further improve patients' health outcomes and quality of life by referring patients to social, prevention and other medical services that address patient concerns and behaviour change or treatment obstacles. To influence their patients, healthcare providers should first prepare themselves to deliver HIV prevention messages and to make referrals and prepare their clinical care setting to support the provider's HIV prevention efforts. The providers' preparation includes increasing their awareness of the personal, social and cultural factors in patients' lives that influence HIV-related risk behaviours. The personal factors that the providers bring to their patient-provider interactions are also vital to successful outcomes for patients. Other steps in adequate preparation include learning to become comfortable in discussing sensitive issues, involvement of other clinic staff in prevention efforts and identification of sources of HIV prevention interventions and psychosocial services to which to refer patients. After preparing themselves, healthcare providers should deliver brief, general prevention messages to all patients at every visit and reinforce these messages elsewhere in the clinical care setting - such as by providing printed information. Providers should sensitively conduct risk screening to discover patients' HIVrelated risk behaviours. For patients currently engaged in unsafe behaviours or who have a recent STI, providers can deliver brief, HIV prevention messages tailored to the patient's specific risks. For at-risk patients with needs that are not easily addressed during the medical examination, providers can refer these patients for more intensive behavioural interventions, psychosocial services or both. At each subsequent office visit, providers can follow up with their patients to encourage their progress toward changing risky behaviours and maintaining safer ones. By following some of these suggestions, providers can fulfil a crucial role in helping patients to change their behaviour and helping their community to reduce the spread the HIV epidemic.

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