Psychosocial Issues

Introduction

This module focuses on understanding common psychosocial issues faced by young people with HIV. Providers can be more effective in addressing these issues when they are sensitive to the patient's cultural context. Are the patient and his or her parents native born or immigrant? What language do they speak at home? What are the patient and family's support networks? How do community attitudes around HIV, sexuality, youth, and the health care system affect the patient's care and well-being? Integrated with the discussion are tools and specific recommendations for integrating culturally focused assessment questions and creating a more bias-free and supportive clinical environment.

Learning Objectives

Upon completion of this module, providers will be able to:

1. Understand the components that make an ideal first visit for adolescent patients in terms of cultural and linguistic appropriateness.
2. Perform a brief psychosocial assessment (the HEADSS interview) that is sensitive to cultural norms particular to racial and ethnic minorities and LGBT youth, to aid in the identification of comorbid conditions.
3. Articulate 3 of the known challenges that frequently confront perinatally infected and newly diagnosed patients as they negotiate adolescent development.
4. Cite 2 examples of how comorbid psychiatric illnesses may either increase the risk of HIV acquisition or affect disease progression in HIV-infected youth.

Instructions

• The course may be navigated either by selecting the "Next Page" button at the bottom of each screen, or by using the course outline buttons in the left navigation column.

• All users will be asked to complete a final evaluation to help the sponsors assess the value of the course.

Authors

Lisa M. Henry-Reid, MD

Lisa M. Henry-Reid, MD, is currently the chair of the Division of Adolescent Medicine at John H. Stroger, Jr. Hospital of Cook County, Chicago, IL. She is a member of a number of community services, including Rush Presbyterian St. Luke's Hospital, Protocol Development Advisory Committee, Adolescent Medicine Trials Network, Committee on Pediatric AIDS, American Academy of Pediatrics, and Illinois Caucus of Adolescent Health Advisory Committee. Lisa M. Henry-Reid, received her MD degree, from Howard University College of Medicine in Washington, DC, and has completed her residency in pediatrics and her fellowship in adolescent medicine.

Lori S. Wiener, PhD

Lori S. Wiener, PhD, DCSW, is currently the coordinator of the Pediatric Psychosocial Support and Research Program, Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland. She also participates in a number of community services, including Pediatric Care Committee, Clinical Center, National Institutes of Health, End Of Life Interest Group, National Institutes of Health and Genetics Faculty Member, National Cancer Institute. Lori S. Wiener received her MA and PhD degrees in social work from New York University, New York. She is also a member of several editorial review boards.

Ana Garcia, PhD (candidate)

Ana Garcia has held a faculty position as an adjunct assistant professor at the University of Miami, Miller School of Medicine in the Department of Pediatrics Division of Infectious Diseases and Immunology since 1986. Ana Garcia has an MA degree in clinical social work and is currently completing a PhD degree in social work at Barry University in Miami, Florida. She is the pediatric coordinator of the Ryan White Title IV Project at the Miami Family Care Program. Having lectured extensively and contributed to the literature on psychosocial issues affecting infants, children, youth, and their families, she will continue to focus her immediate goals on psychosocial/adolescent research, the transition of 200 perinatally infected youth into adulthood, and further program development.

As a social work clinician, Ana Garcia has worked with HIV-infected children and their families since 1983. This grassroots experience has contributed to her consulting work with the Robert Wood Johnson Foundation, the World Health Organization, PAJHO, the Surgeon General's Work Group on AIDS, the National Minority Health Council, the Hispanic Women's Leadership Council, and the Health Resources Services Administration. Ana Garcia has served on the boards of the National Catholic AIDS Network and Health Crisis Network, and is currently a board member of Care Resources, a Miami-based HIV/AIDS community-based organization.

HIV Care and Culture: Making the Connection

The U.S. population was once viewed as a melting pot in which different cultures blended to form a more homogenous national identity. Today, describing our collective national identity as a quilt might be a better metaphor. Although there is a sense of an American identity, different segments of our society are increasingly recognized for the unique strengths they contribute to the whole. The diversity of American cultural perspectives adds richness to our daily experience. In almost every arena, culture influences our behavior and the choices we make.

Public health experts now recognize that cultural groups face disparities in availability of health care and access to health education. As a result, health care providers have become increasingly aware of the need to consider culture in the context of their work with patients and their families. Thus, cultural competence has become an important area of skill building for health care providers, and some believe it is an ethical imperative. 12

It is important to note here that racial and ethnic minority youth often face limitations in their access to adequate health care. The guidelines and recommendations listed in this section are intended to enhance and support cultural competence among providers serving HIV-infected youth.

• Among adolescents 13 to 19 years of age, the proportion of AIDS cases is: 3
  • 70% African American
  • 15% White, not Hispanic
  • 13% Hispanic
  • <2% Asian American/Pacific Islander (AA/PI) and American Indian/Alaska Native (AI/AN)
  • Over 60% of cases among males involved male-to-male sexual contact as the likely transmission category in this age cohort, increasing to over 70% percent for young adults between ages 20 and 24.

Although more recent national data provide only limited adolescent-specific transmission information, we do know that transmission among adult populations varies significantly on the basis of race and ethnicity. Providers must take the time to educate themselves about the HIV/AIDS epidemic in their local community, and to understand the impact of the epidemic on their client population in the context of demographic variations in transmission, as well as substance abuse trends and other locally available information.

• During 2001-2004, in nearly every demographic and transmission category, the largest percentages of HIV/AIDS cases diagnosed were among Blacks/African Americans. Disparities were observed in all demographic and transmission categories; however, the disparity was especially pronounced among Black/African American women, children, and persons with high-risk heterosexual contact.4 Blacks/African Americans continue to represent the greater proportion of youth living with HIV. However, rates of HIV infection are growing among other minority groups. In fact, increases in the annual percent change of HIV diagnosis rates from 2001 to 2004 were greatest among AA/PI women (14.3%) and men (8.1%)."

HIV Care and Culture: Making the Connection

Community

History and Beliefs

Personal and community experiences may contribute to mistrust of health care providers or arouse concerns about being treated as a "guinea pig."

• There are many examples throughout the history of health care in the United States of systemic abuse directed toward poor people, minorities and immigrants. Many of these incidents came to light in the 1970s and have not been forgotten by parents and grandparents of today's adolescents. Perhaps the most notorious example is the Tuskegee Syphilis Study (1932-1972), in which predominantly poor, rural, African American participants went untreated despite the availability of penicillin.5There were also several public and private campaigns aimed at forcing or coercing Native American, Puerto Rican, and poor women in the United States to undergo sterilization. In addition, immigrant and refugee families may have experienced abuse in their countries of origin. Perceptions about the trustworthiness of medical professionals are often passed from one generation to another, and negative impressions may make it difficult for adolescents to believe that health care providers are working in their best interest. Even if adolescents do not feel this mistrust themselves, their parents, grandparents, or guardians may have reasonable concerns that will need to be addressed throughout treatment.

Beliefs based in our cultural traditions influence the ways we take care of ourselves.

• Assess culture-based beliefs regarding HIV, medication, alternative and traditional treatments, and medical interventions. This might include use of herbs, spiritual counseling, prayer, or ceremony, as well as concerns about certain medications. Providers should be proactive in learning how adolescents' cultural backgrounds may influence their health care. There may be community practitioners such as spiritual advisers or naturopathic therapists who can increase your knowledge of non-Western healing approaches.

Stigma

Intimacy and sexuality are viewed differently across cultures.

• Homophobia or family stigma regarding a gay lifestyle may be problematic for the adolescent. Some families may be accepting of a gay lifestyle to some degree but unwilling to have open discussions. Others may be very accepting and include the adolescent's partner in family activities. It is important to learn about each adolescent's unique experience within his or her family.
• For many AA/PIs, homosexuality is seen as a Western phenomenon, and therefore they deny its existence in their communities.6 Gay AA/PIs may deny their sexual identity or may have ambivalent or conflicted identities, which may increase the risk of contracting HIV or progression of the disease.7
• Among Blacks/African Americans and AI/ANs, reproductive sex is given great importance because it serves to help sustain the groups' presence in the world, when historically their existences have been endangered by racism and genocide. Thus, some homosexual practices may be seen as intended to limit the groups' growth.8 Among Blacks/African Americans, there may also be religious prescriptions against homosexuality. Gay Black/African American youth may find it challenging to negotiate their sexuality in the midst of confronting racism and concerns regarding loss of family or other support systems as a result of religious conflicts. These stressors may be associated with increased sexual risk behavior.

Family and Community as Assets

Use a multisystems approach.9

• Adolescents living with HIV have multiple medical and psychosocial needs. It is important to assess all the culturally and linguistically appropriate resources available to them at the individual, family, and community level and to be familiar with laws that may support care. These resources can help in designing effective interventions with adolescents or their families and in linking them to important community-based services or networks.

Stay family focused.

• Although adolescence is often marked by a move toward independence from the family, which can involve the challenging of family values, young people do not exist in a vacuum. They are a part of networks formed by kinship, community, and non-blood ties that can make living with HIV and negotiating their growth and development an easier journey. Look for and utilize family and community support networks, but don't force connections that do not work for the patient. Remember that the persons an adolescent may consider as family members may not be limited to immediate family and individuals who are related by blood.

HIV Care and Culture: Making the Connection

Communication

• Psychiatric and other interventions are most successful when providers are aware of the cultural and linguistic competencies needed for each patient. Clinicians can also improve patient care by assessing the patient's health literacy skills. 1011 Health outcomes can be improved by establishing and facilitating clear communication with the patient and determining whether the patient prefers to receive information and education via the Internet, print material, or audio/visual media.

• Maintaining a nonbiased posture helps to create a nonjudgmental atmosphere. This may increase the adolescent's sense of comfort in discussing intimate and interpersonal relationships.

• HIV and the social issues adolescents face create a range of challenges. Knowing their strengths and building on them will facilitate successful negotiation of these challenges.

• Patients and providers often differ in their perspectives regarding illness and approaches to care. It is important to assess patients' perspectives that may be culturally grounded, address the differences between their ideas and yours, and negotiate a treatment plan that the adolescent can follow with appropriate support.

Psychosocial Assessment

The best adolescent care starts with a solid understanding of the unique set of psychosocial issues that affect each patient. Providers should use each adolescent health visit as an opportunity to examine psychosocial issues, identify health-compromising behaviors, promote healthy lifestyles, and review pertinent developmental concerns. Young people are usually receptive to information about their bodies and health. Once relationships established on trust and respect have been formed, it is not uncommon for young patients to regard their health care provider as an adult who "gets it." Effective partnerships with youth and their families are the building blocks of cultural competence, helping young people to make the most of the health care available to them. To help establish trust, providers must:

• Create a clinical atmosphere that is comfortable for adolescent patients and their parents
• Effectively communicate adolescent confidentiality issues and patient rights
• Understand the patient's spheres of influence (home, school, peers, and self) that affect health

Psychosocial Assessment

Making Adolescent Patients & Their Parents Your Care Allies

Because most young adults do not access health care routinely, it is important to create a clinical atmosphere that engages them and retains them in care. Adolescents are not interested in whether a provider dresses like them or is up to date with the latest slang. They want to be respected, have their opinions considered, and be allowed to participate in their health care. An environment and approach to care that is sensitive, nonjudgmental, and respectful regarding cultural norms, sexuality, sexual orientation, risk-taking behaviors, and youth culture can help young people take responsibility for their own health care.

Episodic health care should be discouraged, because unmet medical needs may not be identified during these brief contacts. Instead, annual visits should be strongly encouraged, as they provide the opportunity to monitor medical, psychosocial, and emotional well-being. Regularly scheduled contact supports development of therapeutic alliances with adolescents and their families as well as long-term retention in care. In an effort to promote continuity of care and appropriate follow-up, youth should be encouraged to seek medical care for all nonemergent problems with their primary care practitioner.

Parents also can play a key role in improving adolescents' health care. Providers should take the opportunity to address key adolescent health issues with parents, including:

• Psychosocial and physical development in the early, middle, and late stages of adolescence
• Adolescent nutrition and fitness recommendations
• Peer pressure perils
• Communicating with teens about sex, sexuality, and substance use
• Internet safety

Remember that family and community ties are very strong among many Blacks/African Americans, AI/ANs, AA/PIs, and Latinos, and they can play an important role in all aspects of life. For example, Blacks/African Americans may have "non-blood kin" who are significant caregivers for young family members.9 Among Latinos, godparents (compadres and comadres) may assume responsibility as coparents of children. Extended family such as aunts, uncles, grandparents, and others in the community may be very valuable resources for youth. Among AA/PIs, an individual is seen as interdependent with his/her family members, instead of autonomous as is generally believed in mainstream American culture. Many AA/PIs , especially when sick, turn to family members as their primary source of help and support.713 Within AI/AN families, emotional and social support from extended families may be available to the adolescent. Get to know who is important in young patients' lives and who will be involved in their health care. Be prepared to educate godparents or non-blood kin in the same way you would educate biological parents.

Psychosocial Assessment

Adolescent Confidentiality Issues & Patient Rights

Providers must understand and be able to effectively communicate--with both patients and parents--the confidentiality and access-to-care rights that apply to minors in their localities. Confidentiality concerns are one of the most significant barriers preventing many adolescents from accessing health care services.14 Many young people fear that disclosure of sensitive information to parents or guardians may negatively impact family relationships, result in punitive actions, or cause personal or family embarrassment.

To assure adolescents that it is safe for them to be forthcoming, providers should:

• Explain their policies related to confidentiality in the presence of both the adolescent and parents or guardians.
• Inform adolescent patients that the same courtesy of confidentiality is extended to their parents or guardians.
• Encourage young people to share sensitive information with a responsible adult, preferably a family member.
• Assure parents and guardians that you are working with them to ensure the health of their children and will be proactive in promoting difficult conversations.

It is important to become familiar with local statutes regarding the types of services that are available to minors without parental consent. Along with your confidentiality policy, this information should be explained to both adolescents and their parents or guardians.

Psychosocial Assessment

Getting a Good HEADSS Start

The HEADSS (Home, Education, Activities, Drug use and abuse, Sexual behavior, Suicidality and depression) interview is a quick and effective tool for examining the important spheres of adolescence (eg, home, school, peers, and self) that affect health. The HEADSS interview and physical exam should, whenever possible, occur with the provider and patient only; however, some youth--particularly AI/AN adolescents--may want family members involved in the discussion. When speaking with adolescents about their health, remember:

• Youth do not always ask the questions to which they want answers.
  Instead, many hope their provider will bring up the issues they are concerned about. That is why the HEADSS interview is such an important tool for identifying problems that should be addressed.
• Youth run the spectrum in terms of being very comfortable talking about everything to being extremely guarded.
  It is useful to preface the HEADSS questionnaire by informing patients that you will be asking some very personal questions as a way of getting to know them better and identifying issues that may require further evaluation by physical examination, laboratory testing, or educational counseling. Give them permission to refrain from answering questions they are uncomfortable with.
• Youth are more likely to be concrete thinkers than abstract thinkers.
  To ensure that patients understand the health information you provide, ask them to restate the information in their own words. Encourage patients to call your office if questions arise after the visit, and assure them that no question is silly.
• Youth may hold values and beliefs that influence their behavior or limit the information they provide you.
  A young patient may have been taught that it is not proper to discuss certain "private" matters outside the home. It may be necessary to reassure patients multiple times of your confidentiality policies and to encourage them to let you know when they have concerns about the questions being asked. It can be helpful to explain why certain questions are asked. Make sure that youth understand your definitions of behaviors such as "sex." Some youth may think of sex as involving only vaginal intercourse. Thus, it is important to be specific.

Psychosocial Assessment

The First Adolescent Visit

(Click to see larger image)

First, meet with the patient and the parents or guardians together to initiate rapport building:

• Obtain history of present illness, medical history, and family history.
• Inform patients and parents of local laws governing adolescent consent for care.
• Explain your need to meet separately with patients and their parents or guardians, and review your confidentiality policy with each patient and family. Be aware that parents or guardians may hold values that influence the amount of responsibility they are willing to give adolescents regarding their health care decision making. The degree of latitude may vary with the age of the adolescent. Parents also may have fears that their child could put himself or herself at risk of harm or illness. It is necessary to talk with parents and address any concerns they may have about your need to meet separately with their child.

Then, meet with the patient alone:

• Assure the patient that you are trustworthy, and encourage honesty in all dialogue.
• Administer the HEADSS interview, taking into account any adaptations that may be warranted on the basis of cultural, racial, or ethnic considerations.
• Conduct any necessary physical examinations.
• Review your findings and thoughts with the patient.

Next, meet with the parents or guardians alone:

• Remind them of the confidentiality agreement.
• Ask whether they have any concerns to share with you.
• Discuss any appropriate concerns of your own that may have arisen from the visit.

Finally, review results of the visit with the patient and family and, if you have received permission from both parties, discuss issues that were raised during the visit.

The First Adolescent Visit

Psychosocial Assessment

Video: Jason's First Visit

The following video shows Jason, a 16-year-old newly diagnosed HIV-infected African American male, during his first primary care visit with a new physician, Dr. Johnson. Jason received a positive result from an HIV test administered at a street fair the previous week.

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

This section addresses the major psychosocial health issues that providers should be aware of when treating HIV-infected youth. It should be noted that many of these issues are common among both perinatally and behaviorally infected youth; however, there are psychosocial issues unique to perinatally infected youth, and those are highlighted here.

All HIV-infected youth--whether they acquired HIV perinatally, through an early-life transfusion, by sexual abuse, or by way of behavioral risk factors--confront the same challenges as their healthy peers, including experimental behavior and the development of skills needed for adulthood. However, unlike other youth, HIV-infected youth must negotiate these challenges while living with a highly stigmatized disease. Their choices regarding intimate relationships, sexual activity, and experimentation with drugs and alcohol are complicated by:

• Fears of rejection
• The side effects of HIV medications
• An uncertain life span
• Concerns about disclosure and transmission
• The impact of loss
• Stigma

Cognitively, late adolescents and young adults who have achieved or who are in the process of completing the developmental tasks of adolescence may be more capable of dealing with their HIV status proactively. But, even these patients require significant psychological and emotional support. Further, all HIV-infected young people experience two other transitions to adult life that are affected by their illness: academic/vocational planning and negotiating the adult medical care system. It is critical to help them understand and internalize that HIV is a chronic illness that, when successfully managed, can still allow for a long and healthy life that includes marriage or long-term relationships, children, academic/vocational success, and longevity. Black/African American and AI/AN youth may have access to rites of passage programs or activities that can help to foster their growth and development. Among many in these cultural groups, the transition to adolescence is seen as a time for preparation to assume community responsibilities and live productive adult lives. There may be community-based programs available to youth and families.

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

LGBT Sexual Orientation

Lesbian, gay, bisexual, and transgender (LGBT) adolescents come from all racial and ethnic groups, socioeconomic levels, and religious denominations. They live in large cities and small towns. They are members of single-parent, two-parent, blended, and foster families. They are student leaders, athletes, and active members of civic groups as well as school dropouts and street youth. For the most part, lesbian, gay, and bisexual youth are indistinguishable from their heterosexual peers--in fact, most are invisible.

The struggle to develop and integrate a positive adult identity--a primary developmental task for all adolescents--becomes an even greater challenge for LGBT youth, who learn from earliest childhood the profound stigma of a homosexual identity. Unlike many of their heterosexual peers, LGBT youth have no built-in support system or assurances that their friends or family members will not reject them if they acknowledge their sexuality. The social and emotional isolation experienced by LGBT youth is a unique stressor that increases vulnerability and risk of developing a range of health and mental health problems. 16 Among the psychosocial stressors unique to lesbian and gay adolescents are:

• Lack of awareness and limited knowledge among providers about sexuality (identity and behavior)
• Stress from coping with stigma associated with homosexuality
• Lack of support, or overt hostility, from family and friends
• Need for secrecy to protect LGBT identity
• Lack of appropriate outlets for socialization and exploration of sexual identity (secrecy and fear of discovery promote high-risk, anonymous behaviors)
• Lack of clear HIV prevention and coping messages that include lesbian and gay adolescents

Ethnic minority youth who are also LGBT face additional stressors and challenges in consolidating sexual, racial, and ethnic identities. For many members of ethnic minority groups, race and ethnicity form core components of identity. Together with gender and sex roles (also culturally based), they frame an evolving sense of self. By the time an adolescent becomes aware that same-sex feelings and behaviors may signal homosexual orientation, primary identity--race/ethnicity--is well established. In a society that discriminates on the basis of race and ethnicity, strong connections with family and ethnic community are essential for survival. However, support is rarely available for an adolescent's homosexual identity. Only among some AI/AN groups is homosexuality acknowledged in language and lore as part of a third-gender cultural tradition, although acceptance in many of these communities has largely been replaced by more negative mainstream attitudes. For providers, cultural and behavioral differences have implications for history taking, assessment, and diagnostic workups as well as for access to prenatal and reproductive care. The unique stressors of managing multiple levels of stigma, including race, ethnicity, homosexuality, and gender, require additional sensitivity and knowledge of appropriate community resources.

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Adolescence and HIV

A key task in working with HIV-infected adolescents is helping them adjust to their HIV status. Whereas psychosocial care is an intrinsic part of primary care for all people with HIV, meeting psychosocial needs is paramount in caring for adolescents. Without proper support, adolescents have enormous difficulty accessing care and adhering to treatment. Goals of psychosocial care for youth include:

• Identifying and addressing crises (eg, suicidal behavior, homelessness)
• Providing access to benefits, entitlements, and services
• Promoting adherence to medical regimens
• Assessing and expanding social support (if needed)
• Supporting development of self-care and life-enhancing practices
• Identifying and treating chronic problems (eg, depression, substance abuse)
• Promoting skills to live independently and to make the transition to adulthood
• Reinforcing and sustaining safer sex behaviors
• Encouraging drug treatment and supporting recovery to prevent relapse (if needed)

Normal adolescent behavior that would be healthy in other youth can be detrimental to the health of an HIV-infected young person. Developmental tasks of adolescence such as risk taking, struggles for independence, experimenting with adult behaviors, impulsivity, and a sense of invulnerability, coupled with awakening sexuality, put adolescents at particular risk of acquiring HIV and nonadherence to complex medical therapies.17 As HIV-infected adolescents strive for independence, many are dependent on doctors, a medical system, case workers, and medicines. Resentment and ambivalence for such forced dependency is not uncommon and often manifests itself in poor adherence and substance abuse-related behaviors. For many perinatally infected adolescents, there are added challenges arising from the fact that they were not expected to survive childhood and, therefore, were not prepared for adulthood and independent living. Providers should understand the key psychosocial challenges unique to youth who acquire HIV perinatally or behaviorally:

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Importance of Disclosure

Regardless of family circumstances or mode of HIV infection, adolescents are very concerned about sharing information regarding their HIV diagnosis with others. Disclosure of one's HIV status is complex and delicate, and each disclosure is encumbered with consequences. For some youth, the impact of a new diagnosis is immediate. For others, it can take weeks to years for the emotional reality of the diagnosis to be absorbed. The particular developmental traits of adolescence make it particularly challenging for young people to cope with the diagnosis of HIV. These include a strong sense of invulnerability and immortality, being prone to peer pressure, limited ability to conceive of long-term consequences of behavior, and a struggle between a sense of omnipotence and impotence. For adolescents who have already experienced poverty, loss, and living arrangements that brought constant threats and dangers, living with HIV is another burden in their lives, and it is often perceived as confirmation that the world they inhabit is untrustworthy. 18 Despite these challenges, providers should facilitate the support needed for a patient to learn the importance of disclosure. A multisystems approach may help the provider locate important community supports for the process of disclosure. For example, peer support groups, networks, or interactions may be helpful during contemplation and after disclosure.

Adolescents who disclose their HIV status to peers and family have been shown to have:

• Better psychosocial outcomes
• Fewer symptoms of posttraumatic stress disorder
• Greater likelihood of disclosing to romantic partners
• Higher peer self-competence 19
• Greater resources and psychological support from family and friends

On the other hand, sharing one's health status with others can result in being shunned and even discriminated against. Referral to a mental health professional or a spiritual adviser who is informed about HIV/AIDS can help adolescents decide to whom, how, and when to disclose their status to others. Role playing, in particular, can be a very effective way for teens to practice informing potential sexual partners about their HIV status.

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Mental Health & Adherence

Mental health issues are often associated with poor adherence to treatment regimens among adolescents. Without maximal viral suppression through proper adherence to an effective treatment regimen, improved health outcomes for HIV-infected children and adolescents will not be achieved. Adherence rates for adolescents and young adults taking antiretroviral medications range from about 29% to 61%. For adolescents, many factors affect long-term HIV medication adherence. Adherence issues are addressed in greater detail in the Antiretroviral Treatment and Adherence module, but in the context of psychosocial issues, it is important to understand that adherence is influenced greatly by disclosure issues, peer relationships, difficult social conditions, substance use, family belief systems, psychological distress, depression, complications with day-to-day routines, and family perceptions of the value of the medication regimen.

It is possible that some youth may have concerns regarding how well medications work for people from their racial/ethnic group. These concerns may originate with adults or caregivers in the family who have misgivings about the treatment of minorities in health care facilities. It is very important to assess whether young people have any beliefs about their medications that might make them less likely to adhere. Black/African American, AI/AN, AA/PI, and Latino cultural groups often rely on traditional approaches to healing. Find out whether youth are using herbs or other interventions that might impact the efficacy of the medication or their adherence to the regimen. Additionally, common side effects of HIV treatment include rashes and unusual deposits of body fat (lipodystrophy), and poor body image resulting from these side effects can be a significant barrier to adherence. Including adolescents in therapeutic decisions and listening to what they have to say about treatment-related body changes will contribute toward greater adherence to proposed interventions and may improve their quality of life.20

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Addressing Difficult Issues

It is important for providers to help adolescents and their parents or guardians deal with topics that are often difficult to address. Sex and death are often hard for families to discuss, yet the way these and other difficult issues are addressed can help determine whether an adolescent's treatment succeeds or fails. The LEARN model (see Toolbox) may offer some guidelines for discussion of difficult topics and implementing interventions as necessary.

Talking about Sex

Providers should talk openly to adolescents about their peer relationships, sexuality, and sexual practices and explore their underlying fears of stigmatization and rejection in order to facilitate open discussion and behavior change. 21 The Prevention with Positives module provides greater insight into how to address sexual risk reduction with adolescent patients.

• As many HIV-infected adolescents and young adults age, sexual experimentation will occur, sometimes leading to pregnancy. Thus, health care providers should periodically review safer sexual behaviors with adolescent patients and make barrier protection available to them.22
• After assessing whether it is safe to do so, providers should encourage adolescents to have open and honest conversations with their parents or members of their extended family about their sexuality and sexual practices, as it can help them feel less alone and more supported. Be aware that parents may have sexual taboos or be hesitant to talk with youth about sex. Their cultural value may be that sex takes place in a marriage. In this case, providers will have to help youth and parents find comfortable, common ground for discussing sexual practice.
• Help adolescents think about intimacy beyond sexual contact. We live in a culture where sexual intercourse is openly emphasized. In an effort to help adolescents develop healthy, lasting relationships, it is important to encourage them to develop a strong sense of self-worth and to find value in their intimate relationships that goes beyond sexual contact.

Talking about Dying

Many adolescents want to share in decision making about end-of-life care, and they want to have these conversations before they are hospitalized or dying. 23 Many adolescents do not disclose their own preferences about end-of-life care to their family members in order to protect them. Others avoid the topic so their families will not know how ill they are feeling. 24 Consequently, many youth say what they think their family members or doctors want to hear.

Family Issues with Death

Similar to the diagnosis of other life-threatening illness, the family's response to the diagnosis of HIV/AIDS in a child can include shock, fear, guilt, disbelief, anger, and sadness. Families often describe a feeling of disorganization or being overpowered, and they often experience anticipatory grief reactions as they begin to mourn the loss of the hopes and dreams of the family's future together. Other concerns include the possible loss of social support, loss of a sense of physical well-being and invulnerability, and loss of employment or housing. Patients in advanced stages of illness should be reassured that they will receive palliative care and should be involved in decision making about whether to continue or stop treatment, last wishes, and whether they want to die at home or in a hospital/hospice.

Patient Issues with Death

A majority of perinatally infected children have lost a biological parent and sometimes a sibling as well. Children try to maintain the relationship with the parent they have lost. Developmental considerations (whether the child is able to understand the finality and irreversibility of death and their own risk of death), the manner in which the surviving parent or relative responds to the child, the availability of social support, and subsequent life circumstances can influence whether a child develops bereavement-related problems. 25 It is imperative that providers assess for complicated grief reactions. This includes understanding the quality of the relationship between the child and deceased parent, whether the parent arranged care for his or her children prior to death, communication around the time of death, and continuity in the child's or adolescent's life after the death of a parent.

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Culture, Family Dynamics, & HIV

Race and Ethnicity

It is important for providers to obtain a clear understanding of the family's cultural background and the factors that might influence responses to an HIV diagnosis or affect the disclosure of a diagnosis to a child.26 Among some cultural groups, certain issues are not discussed with younger members. Family secrets regarding substance abuse or secretive sexual behavior that can come to the surface when HIV is diagnosed may be topics that are off limits. Black/African American families may be hesitant to "air their dirty laundry" and want to maintain privacy.27 This is related to the historical experience of racism in White institutions and the need to be cautious because of the risk of mistreatment, referred to as "healthy cultural paranoia" by Grier and Cobbs.28 The stigma associated with HIV/AIDS may intensify a family's perceived need to be protective of its members. Providers will need to spend time building meaningful relationships with families. Honesty and genuineness in relationships with families will help to ease the tensions that may be present.

Providers may find that Latino families have a respect for the authority of a health care provider that aids the building of a strong partnership with families.29 This tendency to be more trusting of health care providers can help to engage the family. However, it is important to note that language can be either an important barrier or a valuable facilitator in building relationships with Latino families. Providers may need to be able to switch between Spanish and English or engage the collaboration of an interpreter. Often, people are more able to discuss emotion-laden topics in their first or dominant language.

The use of disease as a strategy for colonization, a history of unethical research practice, and underfunded reservation-based medical treatment have left many AI/AN people and communities distrustful of medical providers.30 Because the traditional extended family is the recognized center of AI/AN life, it is critical during the first medical contact for the health care provider to have the patient identify the persons who are considered to be family members. Family distrust can inadvertently become an issue if family members usually take on the responsibility of making treatment decisions and they are inadvertently ignored owing to a misunderstanding by the clinician. Without trust by the family, the patient may distrust both the clinician and the suggested medical treatment.

Although issues for Latino and Black/African American youth are addressed throughout this module, White-Anglo youth are the minority population in most HIV clinics. These youth often describe "standing out" and are concerned about not "fitting in" or being taken seriously because of their skin color and assumptions about their lifestyle.

Parental Guilt

A diagnosis of perinatally acquired HIV infection often brings to light previous family secrets, including parental HIV infection, paternity, history of parental sexual behavior, and substance abuse.31 Providers should know that a majority of perinatally infected children acquire the virus from their mothers and that the ensuing parental guilt about transmission distinguishes this disease from cancer and other life-threatening pediatric illnesses. Providers can help parents differentiate between cause and intent by helping parents understand and come to terms with concerns regarding their HIV infection and reminding them that it was not their intent to harm their child. This exercise can reduce guilt and allow emotional energy to be directed toward seeking treatment, living a healthy lifestyle, and practicing good parenting.

"Well Children"

Providers should be aware that "well" children in an HIV-affected household have tremendous and often neglected social, psychological, and legal needs. With no voice to represent them, these well or "affected" children are often silent victims of the HIV/AIDS pandemic.32 Many HIV-infected parents experience a series of preexisting and long-standing family disruptions even before the HIV diagnosis. Their children often suffer from significant anxieties about future losses (eg, who will care for them if their parents and siblings die) and concerns about their own health. It is the pervasive threat of death and the fear of being left alone that constitutes chronic trauma for child survivors of HIV infection.33 It is not uncommon for some of these youth to become parentified, a term used to describe children who are forced to take on adult responsibilities and roles before they are emotionally or developmentally able to manage these roles successfully.34 The greater the severity of the parents' illness, the more the children assume inappropriate adult role behaviors. Those who report more parental role behaviors also report more externalizing dysfunctional behaviors, including sexual behavior, alcohol and marijuana use, and conduct problems.35

In considering psychotherapeutic interventions for the well children in HIV-affected households, providers should:

• Assess for parentification
• Assist with respite child and parental care
• Assist with permanency planning and building legacies
• Increase social support networks
• Facilitate ongoing mental health services 36
• Address envy and rivalry that might arise when the HIV-infected child is receiving special medical care and parental attention 37

Key Cultural & Psychosocial Challenges of HIV-Infected Youth

Provider Obligations

Providers who treat HIV-infected youth must understand their responsibilities regarding "duty to warn" and "duty to protect others from harm."

• Know local disclosure laws. As disclosure laws differ from state to state, providers have an obligation to know their state's laws, and should be aware that these laws may differ greatly even among the cities and towns within a particular state.
• Understand that patients with psychiatric conditions have unique rights. Providers also should be aware of the consent, confidentiality, and competence laws concerning the treatment of adolescents with psychiatric conditions.
• Actively facilitate partner notification. Honor local laws pertaining to partner notification. Helping patients notify at-risk individuals is fundamental to prevention and linkage to early treatment if partners are also infected with HIV.
• Prevent patients from intentionally infecting others. Willful exposure cases (ie, when an HIV-infected person intends to cause harm by intentionally infecting another person) can be both an ethical and a legal issue for providers.

CASE STUDY:

Sonia

Sonia is a 19-year-old Dominican with perinatally acquired HIV infection. Accompanied by her grandmother, she presents at a routine 3-month HIV visit with chronic fatigue, flat affect, "difficulty remembering things," and gastrointestinal complaints. Her medical history includes two early childhood hospitalizations for Pneumocystis pneumonia, chronic sinusitis, skin infections, oral candidiasis, headaches, several hospitalizations for varicella, and growth delay. During the past year, her CD4 count has remained below 200 cells/µL and her viral load has been higher than 100,000 copies/mL.

Family History:

Sonia's mother was informed that she was HIV infected after a visit to the emergency room in 1992. At the time, Sonia, age 5, was her only child. In addition to his relationship with Sonia's mother, Sonia's father was secretly having sexual relationships with men and women who were injection drug users. When Sonia was 3 months old, her father abandoned the family. A year later, Sonia's mother married her new boyfriend and they eventually had two children together. Sonia believed that her stepfather was her biological father. After Sonia's mother was diagnosed HIV positive, all family members were screened for HIV infection. Sonia was the only other family member who was found to be HIV infected and was immediately diagnosed with AIDS. Sonia's mother never told her that she was infected with HIV.

Social History:

Sonia began a ZDV regimen immediately after she was diagnosed with HIV; however, her health remained poor during childhood and she was hospitalized on numerous occasions. Her mother, feeling very guilty for Sonia's infection, focused so much attention on her that the extended family members stepped in to care for the two younger children. Sonia's mother closely guarded the fact that she and her daughter were HIV infected. This strained her marriage but counseling was refused. The relationship ended in divorce when Sonia was 8 years old. At the time of the divorce, when Sonia's mother was becoming symptomatic herself, she reluctantly disclosed to her older sister that both she and Sonia were HIV infected. When Sonia was 10, her mother died of AIDS-related complications, and her three children moved in with their maternal grandmother. At the funeral, Sonia overheard her grandmother telling a relative that her mother had died of AIDS and that she, too, was infected with HIV. When Sonia confronted her grandmother about what she overheard, her grandmother confirmed the information but told her not to tell her siblings and that they should all forget the past and concentrate on the present. Despite the grief, family upheaval, and some "learning challenges" and problems with "attention," Sonia did graduate from high school the year prior to this visit.

Current Situation:

Sonia lives with her grandmother and siblings and works part-time as a cashier at a local grocery store. Sonia wants to be a psychologist, but she is struggling to make passing grades in two classes at the community college. No one in Sonia's family has attended college, and Sonia is having a hard time getting family support to pursue a college education. In addition, her grandmother speaks very little English and cannot help Sonia with her academic workload. Sonia has Medicaid coverage, has attended the same pediatric clinic since her diagnosis, and has access to all the HIV medications prescribed to her. Nevertheless, adherence has been a major struggle and a source of considerable conflict between Sonia and her grandmother.

Sonia has a few friends, none of whom knows that she is HIV infected. Over the past year, she has been involved in her first romantic relationship. At this visit she tells her new pediatrician, Dr. Klein, that she has not disclosed her HIV status to her boyfriend because she fears he would leave her if she did. When asked about condom use, Sonia reports using a condom every time she and her boyfriend have sex but she makes Dr. Klein promise not to tell her grandmother that she is sexually active. Sonia's grandmother has told her not to make the same mistake of getting pregnant too young as many of her friends have done. Sonia thinks that her grandmother would be very upset if she knew about her being sexually active. Sonia also tells Dr. Klein that she can't sleep because she is extremely worried that her boyfriend may be cheating on her. She also reports "drinking a little" and "not being very good at remembering to take all of her medications."

Discussion Questions:

1. How is Sonia's history of family secrets affecting her health?

• Dr. Klein should assess Sonia for complicated grief reactions. Was it her mother's wish that she and her siblings live with her grandmother? Does Sonia experience guilt over her mother's death? Dr. Klein or other psychosocial staff members should work with Sonia's grandmother to ensure that she and her siblings are given the opportunity to remember their mother openly, grieve, and create rituals that allow them to remain emotionally connected to their mother. Dr. Klein should probe to determine how much her fear of losing her boyfriend is related to the fear of losing yet another person to whom she is attached. Additionally, he should explore how the pattern of family secrets may have caused Sonia's reluctance to disclose her HIV status to her friends and her boyfriend.

2. Is Sonia clinically depressed?

• Although the symptoms that Sonia presents with at this visit can be signs of disease progression, they are also signs of depression. Because perinatally infected adolescents are at high risk of comorbid psychiatric disorders, Dr. Klein should assess for unresolved guilt, grief, and mood disorders. He should find out how disclosure to friends and, in particular, sexual partners has been handled in the past. Suicidal ideation among HIV-infected youth is not uncommon, so Dr. Klein should probe for these feelings and refer to a youth-friendly psychiatrist or other mental health provider, if appropriate.

3. How has Sonia's HIV infection affected her neurocognitive abilities?

• HIV-infected children are at increased risk of developing central nervous system disease characterized by cognitive, language, motor, and behavioral impairments. The "difficulty remembering things" that Sonia described may be related to psychological distress, but it also can be a symptom of HIV-associated cognitive impairment. The learning issues presented, especially those related to attention, are clear indicators that Dr. Klein should order neurocognitive testing.
• Dr. Klein should discuss Sonia's professional aspirations with her to determine how realistic it is that she could complete the graduate work required to become a psychologist. Dr. Klein should explore the availability of educational support resources outside the family to help Sonia cope with her school workload. Sonia could be referred to a mentorship program to expose her to professional women who could mentor her.

4. What issues related to sexuality should Dr. Klein explore with Sonia?

• Sonia reluctantly and secretly admits that she is sexually active. Dr. Klein should listen to her concerns about disclosing her HIV status to her boyfriend and sensitively assess her level of knowledge and skill for communicating this information to him. Sonia's family members have chosen secrecy as their way of dealing with HIV--an approach she has adopted in her own relationships. If she does not fully understand how to prevent HIV transmission and feels that she cannot tell her boyfriend herself, Dr. Klein should ask whether she would be open to him or other staff members meeting with her and her boyfriend to disclose her status and help him understand the implications.
• Dr. Klein should probe to determine whether Sonia is truly using condoms every time she has sex and whether she is using them correctly. If she is not using condoms consistently and correctly, he should counsel her about the importance of preventing transmission of HIV and protecting herself from other sexually transmitted diseases. If needed, she should be referred for counseling to improve her condom negotiation skills.
• Although Sonia reports that her boyfriend is the only person she has had sex with, Dr. Klein should probe to determine whether Sonia has had other sexual partners and whether they may have been exposed to HIV.
• Finally, Dr. Klein should discuss the HIV transmission risks of different sexual activities so that Sonia understands how to have sex safely. In addition to this, Dr. Klein could talk about the grandmother's concerns about Sonia getting pregnant too young.

Addressing Psychosocial Comorbidities among HIV-Infected Youth

For youth who are at risk of HIV infection, normal stressors associated with adolescent development often are exacerbated by poverty, violence, racism, homophobia, homelessness, and child abuse. These factors greatly increase adolescents' risk of becoming substance users and developing mental disorders, which, in turn, can lead to risk-taking behaviors that may expose them to sexually transmitted infections (STIs), including HIV.

HIV-infected adolescents face additional stressors associated with their disease, including loss and bereavement, cycles of wellness and poor health, barriers to care and social services, anxiety, and depression. 3839 Poor coping skills or an inability to adapt to their diagnosis makes them vulnerable to abusing alcohol and other substances.

It should be noted that children infected with HIV are at increased risk of developing central nervous system disease characterized by cognitive, language, motor, and behavioral impairments. Each of these conditions can have a significant impact on an HIV-infected adolescent's ability to learn and on his or her academic and learning achievements. For example, "difficulty remembering things" may be related to psychological distress but also can be a symptom of HIV-associated cognitive impairment. Neurocognitive testing and vocational assessments and testing are appropriate and important interventions.

This section explores the key issues related to HIV-infected adolescents with psychosocial comorbidities, including common elements to look for, the stigma of mental health conditions, the cultural challenges of addressing mental health, successful approaches to care and referrals, the rights of youth with psychosocial comorbidities, and a review of common psychoactive medications used in the treatment of youth with HIV/AIDS.

Addressing Psychosocial Comorbidities among HIV-Infected Youth

What to Look For

Youth with HIV/AIDS are at greater risk of psychiatric morbidity during childhood and early adolescence, compared with the general pediatric population, and a diagnosis of major depression is seen with increasing frequency during adolescence. 40 Youth with psychiatric illness also may be more vulnerable to HIV infection as decreased self-esteem and self-efficacy may prevent them from protecting themselves. Providers should assess all HIV-infected adolescent patients for psychiatric disturbances, including:

• Substance use
• Depression
• Anxiety
• Posttraumatic stress disorder
• Mood dysregulation
• Adjustment disorders
• Bereavement
• Dysthymia
• Attention deficit disorder
• Psychosis

Standardized screening tools (see Toolbox) and in-person interviews can aid in the identification of these key psychiatric comorbidities. Comorbid conditions such as depression and substance use can exacerbate nonadherence to HIV treatment and consequently undermine the patient's HIV treatment.

One of the greatest health disparities in the United States is the lack of mental health and substance abuse treatment services for youth, specifically those from impoverished or low socioeconomic backgrounds. In 2002, it was estimated that 1.4 million 12-17 year olds required substance abuse treatment; however, only 7% of substance abuse treatment centers provided services for patients younger than 18, so only 10% of the 1.4 million young people requiring services actually received them. 41 The paucity and affordability of mental health and substance abuse services pose secondary risks of HIV infection, untreated mental health issues, academic failure, and homelessness. Interventions to address and to treat a patient's comorbid conditions may well lead to improvement in medical and psychiatric outcomes. 424344

Addressing Psychosocial Comorbidities among HIV-Infected Youth

Mental Health & Stigma

Individuals diagnosed with a mental disorder feel stigmatized by their illness and often experience shame, grief, and anger over their diagnosis. Once they have "recovered" from learning of the diagnosis, they feel they can pass for "normal" as long as no one finds out about their condition. In addition to their HIV diagnosis, adolescents can perceive their association with psychiatric services as stigmatizing. Many youth already see themselves as stigmatized by segments of society because of their appearance, behaviors, and attitudes, and thus may be resistant to accepting mental health services. 45

In recent years, mental health practitioners have recognized the importance of "bringing the service to the patient" in an effort to minimize barriers to care:

• At-home therapy provides mental health services to children, adolescents, and their families where they live. Although not ideal for all individuals (some patients tightly guard their privacy and prefer that staff not visit their homes), this approach addresses barriers to services. This approach also avoids referring adolescents to mental health services in the community, where they are known to their peers and neighbors.
• Availability of a mental health practitioner in the primary or specialty clinic site facilitates access to services. A culturally sensitive psychiatrist, psychologist, or social worker should be identified as a member of the multidisciplinary team, and the treatment should be normalized as a routine service intervention of the care plan.
• Alternative approaches can be tried in the event a mental health practitioner is not available for the youth in a particular community. Information on how to access support via the Internet should be made available in these cases, especially to those living in rural areas. Some websites offer valuable resources that address many of the concerns associated with a new diagnosis and provide updated information on current treatments and interventions. Several of the youth-specific sites have chat rooms with "instant messaging" capabilities. If a young person is reluctant to seek services within the community for fear of recognition, this cyber approach may be a suitable alternative.

Once a therapeutic alliance is formed between the patient and the mental health practitioner, retention in care is optimized. Having an array of choices appeals to youth who are seeking to be more involved in the decision-making process regarding their health.

Addressing Psychosocial Comorbidities among HIV-Infected Youth

Cultural Diversity & Mental Health

In a multicultural patient population, it is often difficult to achieve patient compliance with referrals to mental health services. Beliefs concerning treatment of mental health conditions vary among members of different cultural groups, many of which reject conventional Western methods of treating mental health disorders. For mental health concerns, in communities where there is a strong sense of spirituality, families may consult spiritual leaders for help. Some may comply with the conventional medical treatment recommendations while incorporating interventions grounded in their own cultural traditions.464748

According to the 2000 U.S. Census, Hispanics of all races represent 13.3 percent of the U.S. population, about 37.4 million individuals. 49 The use of spiritualism, Santeria, and other religious approaches to health and mental health conditions in this group is common. Community storefronts that offer spiritual readings or the neighborhood curandero that promotes the use of herbal treatments, special diets, and spiritual prescriptions can influence the patient to reject the clinician's recommendations for psychotropic medications and psychotherapy. 50 Of special concern to the clinician would be adverse effects and contraindications between certain holistic treatments and conventional medications. Patients should be encouraged to give detailed information regarding all current "medications," including herbs and vitamins.

Regarding the AI/AN population, the 2000 U.S. Census reported that 4.3 million people (1.5% of the U.S. population) identified themselves as being of members of this demographic. There are approximately 700 AI tribes and AN villages in the United States, with 569 tribes having a special trust relationship with the U.S. government. The degree of access to and use of traditional AI/AN medicine varies from group to group. Traditional practices can include ceremonies specifically for the community or for the individual and family. Traditional medicine represents vast systems of prevention and treatment that operate at several levels, culminating with practitioners who dedicate a substantial portion of their lives to healing. 51

As a result of the trauma of colonization and subsequent abuse perpetuated by policies of assimilation, AI/AN people have been put at risk of behavioral, emotional, and mental health problems. With the recent strengthening of tribal culture, there has been an increase in the availability of tribal services and culturally sensitive mainstream mental health services. Consequently, a clinician has a higher probability of ensuring culturally sensitive services for an AI/AN adolescent patient, particularly when working in conjunction with the family and, possibly, members of the extended family.

The expression of distress through somatic complaints has been documented across many cultural groups. A mild to serious anxiety disorder will be described as suffering that ranges from "nerves" to "demonic possession." 52 Familiarity with the wide scope of beliefs among the many cultures, and a nonjudgmental approach to these beliefs, will provide the clinician with the tools and skills to develop and implement a viable treatment strategy that is agreeable to both the patient and the physician. 53

Addressing Psychosocial Comorbidities among HIV-Infected Youth

Successful Approaches to Care & Referrals

Not all primary care settings have the ability to provide mental health and substance abuse treatment services. Identifying and establishing relationships with service providers who are culturally competent, adolescent friendly, and able to offer prompt entry into care is recommended.

• Collaboration and coordination with existing systems of care, such as substance abuse treatment centers for youth, mental health service facilities, and social service agencies, are key factors in minimizing fragmentation of services for these youth.
• It is important to ask referral sources about service fees, accepted insurance plans, and sliding-scale rates to prevent denial of services or financial hardship for the patient and family.
• Maintaining a follow-up relationship with referral sources will help patients to make the most of them.

Addressing Psychosocial Comorbidities among HIV-Infected Youth

The Rights of Youth with Comorbid Conditions

Providers treating HIV-infected youth with psychosocial comorbidities often must address sensitive issues with both the youth and their parents or guardians. As discussed previously, the parents or legal guardian of an adolescent generally have the legal right of consent for treatment, although many conditions exist in which the adolescent may provide consent for himself or herself. Adolescents have the right of confidentiality in almost all circumstances in which they have the right of consent. Some situations do arise in which the clinician must assess the patient's competence and determine whether a parent or guardian should be notified. Clinicians should be aware of local laws that address adolescent family planning, pregnancy, testing and treatment of STIs, reporting of child abuse, provision of mental health and substance abuse treatment, and the physician's duty to maintain patient privacy.

A component of the adolescent psychosocial interview assesses the quality of a patient's relationships with family members, in particular with parents or guardians. The clinician, while fostering open communication between the adolescent and adult caregiver, ultimately is bound by the principle of patient privacy. This interaction becomes complex when culture-based family practices are introduced. 53 For example, in some cultures, the family plays a strong role as a unit in the decision-making process, and excluding family members from that process is viewed as disrespectful. It is prudent to ask patients privately whether they want a parent or guardian present during the medical visit, as this gesture acknowledges the "authority" position of the parent or guardian within the family structure.

Several issues of significant concern for the clinician, such as child sexual abuse within the family, drug use, poor mental health, STIs, pregnancy, and homosexuality, will be difficult to introduce into discussions with certain parents or guardians. 5455 Engaging the assistance of mental health care providers will provide extra support for the clinician in addressing these sensitive issues with parents and other family members. The initial discussion of these issues may induce anger, sadness, disbelief, and anxiety in the parent. Therefore, follow-up supportive counseling is important for helping to assure their emotional well-being. 56 This special attention also may serve to convey the clinician's sincere concern for the family members as well as the patient, motivating them to play a more active role in pursuing services for their child.

Addressing Psychosocial Comorbidities among HIV-Infected Youth

Psychoactive Medications

Many HIV-infected adolescents suffer from poor mental health or psychiatric illness that may be treatable with psychoactive medications. Results from studies on children and adolescents living with HIV indicate increased incidence of mental disorders in this population; and poor mental health can itself be a risk factor for acquiring HIV.57 One study among perinatally infected youth found that 40% had one or more anxiety disorder, 21% had attention deficit hyperactivity, 13% had one or more behavioral disorder, and 11% had oppositional defiant disorder. 42 These disorders, in addition to mood disorders, may require treatment with psychotropic medications.

Because many psychotropic drugs are metabolized via the cytochrome P450 family of enzymes, there is a large potential for drug interactions with ARVs that inhibit or induce these metabolic pathways. These interactions can be bidirectional, as some antidepressants also inhibit cytochrome P2D6. For example, fluoxetine was shown to increase the area under the plasma concentration-time curve (AUC) of ritonavir by approximately 20%. 58

Close monitoring of the patient by the psychiatrist and the clinician will assure that adverse effects are noted early and that changes in the treatment plan occur appropriately (see Toolbox for resources on common psychoactive-ARV drug interactions). Clinicians also should be sensitive to the concerns that family members may have regarding the possible toxic effects of psychoactive medications, and should provide culturally informed guidance regarding the safety of medication regimens.

The key drug categories and corresponding medications that are commonly used in the treatment of HIV-infected youth are as follows:

• Sleep aids: zolpidem (Ambien), eszopiclone (Lunesta), diphenhydramine (Benadryl)
• Antidepressants: citalopram (Celexa), escitalopram (Lexapro), sertraline (Zoloft), bupropion (Wellbutrin), duloxetine (Cymbalta)
• Antianxiety drugs: lorazepam (Ativan), diazepam (Valium), clonazepam (Klonopin), buspirone (BuSpar)
• Mood stabilizers: lithium, divalproex (Depakote)
• Antipsychotics/Mood stabilizers: olanzapine (Zyprexa), aripiprazole (Abilify), quetiapine (Seroquel)
• Psychostimulants: methylphenidate (Ritalin), dextroamphetamine + amphetamine (Adderall)

In addition to medications used to treat psychiatric disorders, clinicians should be aware of the interactions between HIV medications and recreational substances that are commonly reported among adolescents, including alcohol, marijuana, MDMA ("ecstasy," "E," "X"), methamphetamine ("crystal," "crank," "Tina"), cocaine ("snow," "crack"), and other drugs (see Toolbox for resources).

CASE STUDY:

Gisela

Gisela is a 17-year-old HIV-infected Latina who presents for a routine medical visit (her last visit was 3 months ago). She appears withdrawn and sullen, and she avoids eye contact. Although she is clean, she appears thin and disheveled. Her grandmother and mother are with her.

Family History:

The nuclear family and some extended family members emigrated from Central America when Gisela was 2 years old. She currently lives with her mother, her mother's boyfriend, 2 siblings (a 19-year-old pregnant sister and a 4-year-old brother), her maternal grandmother, an aunt, and 2 cousins in a small 4-bedroom house in a city in the northeastern United States. Gisela's father died from a work-related injury when she was 11, and she has had trouble adjusting to the loss.

Although the route of her infection is classified as occurring through heterosexual transmission, Gisela acquired her infection 5 years ago as a result of sexual abuse over a 2-year period by an uncle who recently died of AIDS-related complications. Gisela's HIV infection was diagnosed at age 13 by a physician in the community health center when she presented with complaints of "white spots" in her mouth, swollen glands in her neck, and genital sores, which were later diagnosed as herpes. The family has difficulty discussing these events and is vague when prompted for information about how she may have been infected.

Social History:

Gisela is described by her mother as being temperamental, hard to handle, and high-strung. Her mother reports that many people in her family suffer from "nerves." As a child, she maintained good grades in school, was described by her mother and grandmother as being helpful around the house and, although she became moody at the onset of adolescence, happy. At the end of her seventh grade in school, Gisela's mother began to notice changes in her behavior and personality but attributed it to "teenage blues." Since then, Gisela's relationship with her family has deteriorated, her eating and sleeping habits have worsened, and she has run away from home twice in the past year. Gisela's mother suspects that she is using drugs.

Present History:

Gisela's medical history has been noteworthy for a CD4 count of <200 cells/µL and an HIV RNA polymerase chain reaction value of >750,000 copies/µL for the past 12 months. Her ARV regimen has been changed twice upon evidence of drug resistance, and the current therapy is a twice-daily regimen to facilitate adherence. Gisela's past compliance and adherence with ARV therapy has been poor. Following her initial treatment for genital herpes at age 13, Gisela has since had an outbreak of oral/genital herpes that required hospitalization secondary to weight loss. A second hospitalization for weight loss was secondary to Candida esophagitis.

During this clinic visit, her mother and grandmother state that Gisela was hospitalized a week earlier for pelvic inflammatory disease (PID). During that hospitalization, the nursing staff reported that Gisela seemed anxious and depressed, and had "cut" scars on both arms. These findings prompted a psychiatric consultation. Although the consultant did not recommend psychiatric hospitalization, psychotropic medications (Buspirone and Celexa) and intensive outpatient psychotherapy were prescribed.

Gisela's mother has difficulty accepting her daughter's acting out and her HIV status. Although her grandmother is well aware of Gisela's medical and emotional problems, her level of understanding is limited. Gisela's mother attributes her daughter's behavior to missing her father, with whom she was very close. Her mother will not discuss the period in Gisela's life when she was sexually abused and, as a result, infected by her uncle. Her mother feels that a few days under the nurturing hands of her grandmother, some herbal teas, and a visit to the curandero will return Gisela to her old self again.

During this medical visit, the physician documents Gisela's flat affect, unkempt appearance, and her poor compliance with antiretroviral and psychotropic medications. She denies substance use, but does admit to feeling very depressed. The physician does not order drug toxicology testing during this visit. Gisela is referred for mental health follow-up at the Community Mental Health Center, located 3 blocks from her home, and next door to "Hang In There," a local teen drop-in center where Gisela is well known. Gisela tells the doctor that she will take her medicines and follow through with the referrals. She has no plans, however, to comply with the referral, as she does not want to be seen entering a mental health facility by her neighbors and peers.

Discussion:

The physician acted appropriately in acknowledging the authority of the mother and grandmother, by allowing them to stay in the room during the interview. It is important to receive information from the family and hear their point of view. However, their continued presence did not allow an opportunity for the provider to establish a relationship with Gisela, acquiring her trust and confidence whereby she could share some of her concerns with him. He could have empowered Gisela by politely, yet firmly, asking the relatives to step out of the room while he interviewed and examined Gisela alone. It may have been useful for a male provider to be assisted by a female provider in Gisela's case. This may have helped to put her at ease as well as satisfy her mother and grandmother, who may have had concerns about leaving her with a male provider. If Gisela's first language is Spanish, having a provider who can speak to her in Spanish would enhance communication and comfort for her.

Gisela's recent behavior, poor health history, and present appearance constitute a "red flag." This provider should have ordered drug testing despite her denial of substance use. Although her current level of functioning could be attributed to depression, Gisela could be self-medicating with drugs or alcohol to cope with her stressors.

It is not uncommon for adolescents to agree to comply with a prescribed treatment regimen while in the doctor's office, as a means to minimize hassle and avoid an unwanted lecture. Given the history of sexual abuse, the physician should talk with the family regarding the needs of sexually abused youth. Here, it also would be important to assess how the family views Gisela, whether they see her as a victim or as sexually promiscuous, which could be relevant to understanding her depression. This discussion would be a good segue into the referral for mental health services and their importance for Gisela's well-being. However, the physician may have failed to realize that Gisela's home was close to the mental health facility and was, therefore, unaware of the barrier posed by referring her there. If he did notice the proximity of her home to the facility and felt it would facilitate compliance by being close to home, he should have asked her whether that arrangement was suitable to her. Offering Gisela several options would have been the better approach.

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Resources

For Providers

Tools: Assessment and Counseling

• Adolescents, HIV, and Mental Health. Materials developed by the Mental Health Subgroup of the AETC Adolescent HIV/AIDS Workgroup. 09/2006.
  • Introduction: Special Issues for Adolescents with HIV. Author: Linda Frank, PhD, MSN, ACRN (Workgroup Leader)
  • Anorexia Nervosa and Bulimia. Tables with diagnostic criteria and clinical resource guide.
  • Depression. Tables with diagnostic criteria and clinical resource guide.
  • Gender Identity Issues. Tables with definitions of related terms and suggested clinical approaches to adolescents with gender identity issues.
• Case Finding, Primary and Secondary Prevention for Adolescents: Clinical Risk Assessment and Screening Guide. Comprehensive guide from the Pennsylvania/MidAtlantic AIDS Education and Training Center.
• Child and Adolescent Depression and Anxiety Toolkit. Center for Children with Special Needs, Children's Hospital and Regional Medical Center, Seattle, Washington. Links to resources for families and professionals. Includes multilingual information.
• A Guide to Sexual History Taking with Men who have Sex with Men. California STD/HIV Prevention Training Center. February 2006. Includes questions for adults and teens.
• HEADSS questionnaire with additional questions for for Lesbian, Gay, Bisexual or (LGB) Youth. Adapted with permission, from Goldering JM, Cohen EH: Getting into an adolescent's H.E.A.D.S. Contemporary Pediatrics 1998; 5:7, and Ryan C, Futterman D. Lesbian and Gay Youth: Care and Counseling. Columbia University Press. 1998.
• Health Education and Counseling Guidelines for STD/HIV Prevention The Client-Centered Risk Assessment/Risk Reduction Session. California STD Controllers Association, California Department of Health Services, California STD/HIV Prevention Training Center. No date.

Tools: Medications

• HerbMed. An interactive, electronic herbal database - provides hyperlinked access to the scientific data underlying the use of herbs for health. It is an impartial, evidence-based information resource provided by the nonprofit Alternative Medicine Foundation, Inc.
• Management of Depression and HIV. AIDS Education and Training Centers. 2006. Comprehensive toolkit with algorithms and tools for diagnosis and treatment of depression in people with HIV.
• Psychiatric Medications and HIV Antiretrovirals: A Guide to Interactions for Clinicians. New York/New Jersey AIDS Education and Training Center. Provides guidance for minimizing drug interactions and more severe reactions among patients being treated with psychiatric medications in conjunction with antiretorvirals. Data were compiled from published studies and anecdotal reports on March 2004.
• Recreational Drugs and HIV Antiretrovirals: A Guide to Interactions for Clinicians. New York/New Jersey AIDS Education and Training Center. Summer 2005. This educational guide is intended to provide advice that may reduce harm to patients who use these substances in conjunction with antiretroviral agents. Its data is a compilation of information obtained through published and anecdotal studies up to June 2005.

Cultural and Linguistic Competency

• Cultural Competence Resources for Health Care Providers. Health Resources and Services Administration. Extensive online listing.
• An Expanded Look at Some Cultural Groups. From The Provider's Guide to Quality and Culture, Management Sciences for Health. Information about 9 cultural groups, including their strengths and protective factors, challenges to health and well-being, and principles for culturally competent health services.
• Learning Module: Cultural and Spiritual Sensitivity, A Quick Guide to Cultures and Spiritual Traditions. Wintz S, Cooper EP. Association of Professional Chaplains. Training module including information about religious and health-related beliefs of several dozen cultural groups. 2003.

General Reference

• Adolescent Provider Toolkit. Adolescent Health Working Group. Collection of resources for health care providers who work with adolescents, incorporating adolescent health care best practices and including resources for providers, parents, and teens. The Toolkit modules contain screening tools, brief office interventions and counseling guidelines, community resources and referrals, health education materials for teens and their adult caregivers, literature reviews and internet resources. Some sections are translated into Spanish, Vietnamese, and Chinese. 2003-2007.
• Practice Parameters. American Academy of Child and Adolescent Psychiatry. Library of practice parameters on topics such as: Assessment of a Child and Adolescent, Anxiety Disorders, Depressive Disorders, and Posttraumatic Stress Disorder.

Legal Issues

• Adolescent Confidentiality Issues & Patient Rights. Guttmacher Institute, State Policies in Brief, May 2007.
• Common Legal Issues & Concerns, Adolescents with HIV: A Guide for Clinicians. AETC Adolescent HIV/AIDS Workgroup. 2006. Covers confidentiality and disclosure, education, and non-adherence.
• National Standards for Culturally and Linguistically Appropriate Services in Health Care. U.S. Department of Health and Human Services, Office of Minority Health. 2001.
• www.LEP.gov. Federal clearinghouse on language access regulations, including legal guides, tools, and resources for organizations seeking to improve access to limited-English proficient (LEP) clients.

For Youth

• ambienteJoven. A Spanish-language website for Latino young men who have sex with men (YMSM) and for Latino gay, lesbian, bisexual, transgender and questioning (GLBTQ) youth in the United States and Latin America.
• Making MEDS Work for You. Lerner-Weiss N, Burr C. François-Xavier Bagnoud Center, University of Medicine and Dentistry of New Jersey. Booklet for young people with HIV infection who have decided to begin antiretroviral therapy. Written with the ongoing input of an advisory group of experts in HIV care and young people living with HIV, the booklet discusses how antiretroviral medicines work in the body and makes suggestions about successfully managing medication schedules. 2005.
• MySistahs.org. Website by and for young women of color.
• OutProud: The National Coalition for Gay, Lesbian, Bisexual & Transgender Youth . Community website with news, resources, forums.
• Safe Schools Coalition: Resources for GLBT Youth of Color. Resource listing.
• YouthLine: Queer Youth of Colour. Canadian website for LGBT youth.
• YouthResource. Created by and for GLBTQ youth and offers support, community, resources, and peer-to-peer education about sexual health and other issues of concern to GLBTQ youth.

For Families

• Child and Adolescent Depression and Anxiety Toolkit. Center for Children with Special Needs, Children's Hospital and Regional Medical Center, Seattle, Washington. Links to resources for families and professionals. Includes multilingual information.
• Depression in Children and Adolescents. National Institute of Mental Health. Resources for parents and providers.