­

The Role of Families in Preventing and Adapting to HIV/AIDS
Issues and Answers

Willo Pequegnat­ National Institute of Mental Health

José Szapocznik University of Miami

A­

lthough the role of families in caring for its sick members is as old as hu­ mankind, only and health professionals,in recent years have researchers, family practitioners recognized the important role of the family in disease pre­ vention and health promotion (Anderson & Bury, 1988 ; Cohen & Wills, 1985; Kazak, 1989) . With enhanced treatments, HIV infection is now becoming a long-term chronic illness affecting hundreds of thousands of families . As a seri ous chronic illness, HIV infection is creating pressure o n health care and social and mental health service providers to design comprehensive systems for fami­ lies . For each of the more than 688,200 persons in the United States with AIDS, there are parents, siblings, aunts and uncles, and friends and partners in the fam­ ily constellation who are affected (Centers for Disease Control and Prevention [CDC], 1998b) . The family is de facto and often de jure caretakers when one of its members is ill or in trouble (Pequegnat & Bray, 1997).
AUTHORS' NOTE: The second author was partially supported in writing this chapter by NIMH Grant R37 MH55796 . Requests for further information on this chapter should be sent to Dr. Willo Pequegnat, Associate Director, Primary Prevention, Translational, and International Research, Center for Mental Health Research on AIDS, National Institute of Mental Health, 6001 Executive Boulevard, Room 6205, MSC 9619, Bethesda, MD 20892 (Express Mail : Rockville, MD 20852) ; e-mail:
Wpequegn@nih.gov.

In the United States today, 2 people younger than age 25 become HIV in­ fected every hour, whereas in the world this number is estimated to be 450 . This means that a generation of families may not be able to fulfill their potential . For­ tunately, the AIDS mortality rate in the United States has been reduced in recent years with the advent of life-saving medications . Perinatal transmissions have been essentially eliminated in the United States, and cost-effective strategies are being explored in developing countries . However, for those infected who are fortunate enough to receive medical care, medication regimes can be so rigorous that doctors will not always recommend the most complex regimens for fear that patients will fail to adhere with dire consequence : the emergence of drugresistant strains. AIDS is changing the demographics of families not only in the United States but in other countries as well (Ankrah, 1991 ; Bor, 1990 ; Bor & Elford, 1994). The generation that should be parenting the next generation and participating actively in the workforce is experiencing the highest infection rates because AIDS has most severely affected persons between the ages of 25 to 44 . AIDS dif­ fers from other diseases in an important way : It infects persons when they poten­ tially have a long life span ahead of them . Africa best illustrates the devastation of AIDS for families and economies when people in their most productive years are struck down . In some African villages, there are primarily grandparents and children because the parent generation has died of AIDS . Remarkably, all the gains made in the past 30 years in life span have been wiped out by HIV disease in many sub-Saharan countries where the life expectancy has again fallen to 40 years old . In countries with a long history of AIDS, a new phenomenon of childheaded households is emerging (Foster, 1998) . This provides a picture of the devastation that could occur in the AIDS urban epicenters in the United States if prevention programs are not pursued vigorously. The epidemiology of AIDS has made it difficult to use traditional family models in studying and providing care to infected and affected groups . Families coping with HIV infection, unlike the standard American family of television sitcoms, are often nontraditional . Family networks include extended family members, nonblood relations, foster parents, and friends and partners chosen for familial roles . Offering services to families therefore requires a thoughtful con­ sideration of the many configurations and types of families in modern America. When affected by HIV/AIDS, families from all walks of life may need our services. The programs presented in this book are highlighted in the appropriate sections of this chapter to place the work of the National Institute of Mental Health (NIMH) Consortium on Families and HIV/AIDS in context . There are a range of perspectives in the chapters, from those that focus on the role of parents in pre­ venting HIV infection in their children (Dilorio et al ., 2000 [this volume] ;

Jemmott et al ., 2000 [this volume] ; Krauss et al ., 2000 [this volume] ; McKay et al ., 2000 [this volume]) to seropositive mothers who must work out permanency planning for their adolescents to ensure a better future for their youth, including good mental health outcomes (Bauman, Draimin, Hudis, & Levine, 2000 [this volume] ; Rotheram-Borus & Lightfoot, 2000 [this volume]) . In urban epicen­ ters of infection, there are adequate medical and social services for seropositive women ; Mitrani, Szapocznik, and Robinson-Batista's (2000 [this volume]) pro gram to help women adapt to HIV/AIDS focuses on interventions to improve family relations and other natural support systems and improve relations be­ tween natural supports and formal services . In contrast, in rural areas where there are few social services and seropositive women experience severe isola­ tion, Wingood and DiClemente's (2000 [this volume]) prevention program fo­ cuses on helping these women develop a family-like social support system of se­ ropositive women like themselves . Although many of the programs proposed are built on behavioral theory, mostly social cognitive theoretical orientation, some that work with HIV-affected families directly use systemic family princi­ ples (Mitrani et al., 2000 ; Rapkin, Weston, Murphy, Bennett, & Munoz, 2000 [this volume]). This chapter is organized into six major sections : (a) epidemiology of HIV infection in family members, (b) definition of family, (c) families as a frame­ work for prevention and adaptation to HIV, (d) role of families in preventing the spread of HIV, (e) role of family in adapting to and dying of HIV, and (f) conclusions. EPIDEMIOLOGY OF HIV INFECTION IN FAMILY MEMBERS Poverty, substance abuse, and community violence are disproportionately pres­ ent in the lives of inner-city children (Bell & Jenkins, 1993 ; Garbarino, Kostelny, & Dubrow, 1991) . In addition, the incidence of HIV and AIDS infecBoyd­ tion has risen dramatically in poor, primarily minority neighborhoods ( Franklin, Aleman, & Lewis, 1995) . Because many significant stressors co-occur in these poor communities, it is not surprising that being reared within an innercity environment has been associated with exposure to a wide range of health and psychological risks (Eng & Butler, 1997). As the third decade of the AIDS epidemic approaches, several trends in the number of reported AIDS cases have emerged—trends that are likely to affect the nature of the epidemic for years to come . Of special significance is the growing number of adolescents and young adults infected with HIV, particularly women and people of color . In fact, inner-city African Americans represent 50% of all new HIV cases diagnosed with AIDS (Boyd-Franklin et al ., 1995 ; CDC .

1998b) . By the end of 1998, almost 700,000 AIDS cases had been reported in the United States, and of these, almost 100,000 were among adolescents and young adults ages 13 to 24 (CDC, 1998b). Adolescents African American youth are disproportionately represented among adoles­ cent cases of HIV infection . The number of adolescents infected is doubling ev­ ery 14 months (CDC, 1998c) . The primary risk factor for contracting HIV among adolescents is unprotected sexual intercourse . Reflecting the level of sexual risk in the nation, each year approximately 12 million new sexually trans­ mitted disease (STD) cases are reported, of which 3 million are individuals younger than age 20, with minorities overrepresented (CDC, 1998b ; IOM, 1997) . Although African American adolescents are overrepresented in current HIV cases, current risk for adolescent Hispanics is also high because of the poor rates of reported condom use at last intercourse : 48% for Hispanics as compared to 64% of African Americans (CDC, 1998a). With 60% of 12th graders from a national sample reporting having had sexual intercourse (CDC, 1998c), a fairly substantial proportion of adolescents are at potential risk for contracting HIV. Because school connectedness is linked to later onset of sexual intercourse, most likely the 60% estimate among 12th graders represents a considerable underestimation of the actual rate of sexual inter­ course among 17-year-old youth who have dropped out of school . Although each emerging cohort of adolescents has been aware of the need to use condoms for protection against HIV and other STDs, less than 50% of adolescents use condoms consistently (Jemmott, Jemmott, & Fong, 1998). Women During the past decade, the percentage of AIDS cases among women has grown from 9% in 1985 to 16% at the end of 1998, with a significant number of these infections due to heterosexual transmission (CDC, 1998b) . Although rep resenting 12% of the U .S . population, African American men account for 35% of AIDS cases among males in the 13 to 24 age group, and African American women account for 51% of cases among women in the same age group (CDC, 1998b) . For that reason, most prevention programs in this book are focused on African American women and their families. As Wingood and DiClemente (2000) and others have suggested, HIV infec­ tion is increasing in women, and they are often at risk because of the behavior of their partners (Ginzburg, Trainor, & Reis, 1990 ; Grinstead, Kegeles, Binson, & Eversley, 1993) . Because of the imbalance in status and power, interventions have focused on issues of empowerment, skills training, and effective sexual ne­

gotiation (Amaro, 1995 ; El-Basset & Schilling, 1992) . More recent approaches have worked with couples directly to improve couple communication and un­ derstanding (e .g ., Mitrani et al ., 2000). There is strong evidence that there is more efficient transmission of HIV from men to women . One of the facilitators of transmission may be the presence of an STD that increases vulnerability to HIV infection (Wyatt & Chin, 1999 ; Wyatt, Moe, & Guthrie, 1999) . Because there are frequently no symptoms for STDs in women, they may not seek treatment . Consequently, women who engage in fewer risky acts than men may still be at greater risk of becoming infected (Pequegnat & Stover, 1999) . Another aspect of HIV places women at higher risk of disease progression . Women, even with a lower viral load than men, appear to have a poorer disease course . Women experience more HIV-associated prob­ lems, progress to an AIDS diagnosis more quickly, and die from the disease sooner than men. Few studies have examined the unique stressors that affect women living with HIV. Semple et al . (1993) identified the major stressors in 31 predominantly Caucasian women living with HIV. The main HIV-related stressors were being informed of their HIV serostatus (27 .8%), having chronic financial strain (11 .1%), terminating an exclusive relationship as a result of learning their HIV serostatus (11 .1%), having a child develop behavioral problems subsequent to learning their serostatus (11 .1%), and coping with the death of a friend from AIDS (11 .1%) . Other studies report additional gender-specific stressors for women with HIV, such as the caretaking responsibilities for a seropositive child, the decision to continue or terminate a pregnancy, the shame and stigmatization about having HIV, the isolation of not knowing other women with HIV, the lack of physicians who are knowledgeable about the medical and gynecological conditions common among women with HIV, and the lack of HIV support groups (Rehner, 1994 ; Selwyn, O'Connor, & Schottenfeld, 1995) . In a recent study, African American poor urban women reported poverty and the problems associ­ ated with poverty as their greatest problems, regardless of HIV status (Smith et al ., 2000) . These burdens are made worse by the absence of supportive family relationships to assist women in effectively coping with these stresses, often not being prescribed the latest therapies, and barriers that poor women and women of color experience in accessing health care. Children and Adolescents as Orphans and Abandoned Children In New York City, where two of the interventions associated with children in this book were conducted, at one time it had been estimated that 75,000 adoles­ cent children would have been orphaned by HIV/AIDS by the year 2000 (Levine & Stein, 1994) . However, with the advent of medications in the United States,

these numbers may be much lower. Internationally, 1 in every 3 children or­ phaned by HlV/AIDS is younger than age 5, and increasing numbers of aban­ doned children live in bands in urban cities in Africa. The chronic illness and death of a parent are uniquely stressful life events (Christ, Siegel, & Sperber, 1994 ; Rutter, 1966), perhaps the most difficult experience a youth can face . In the Western world, about 5% of children experience the death of a parent before age 15 (Silverman & Worden, 1992 ; Weller, Weller, Fristad & Bowes, 1991). However, as can be expected, in U .S . urban HIV/AIDS epicenters, this number is considerably higher. Children of mothers with HIV/AIDS may receive services while their parents are alive . However, because they are not designated as recipients of services, the responsibility of any existing social service system may be terminated when the parent dies ; often there is no safety net for them . Because few of the children are HIV infected, they will not qualify for the same level of services the parent had obtained . If the parent has made no permanency plans for them, they may need to fend for themselves. If they end up in foster care, there are limited or no income supports, no bereavement assistance, and no support options for higher educa­ tion . Although the evidence is clear that a secure placement with supportive and loving caregivers can be cost-effective, custody planning is labor intensive and time-consuming and requires resources . However, the cost for not providing for proper permanency planning may be even greater in terms of school failure, early sexual debut, substance abuse, delinquency, and other behaviors that may ultimately cost society more and result in a squandered life.

DEFINITION OF FAMILY The so-called "ideal nuclear family" only accounts for 7% of the total number of households in the United States (Levine, 1994) . In recognition of this reality, the NIMH Center for Mental Health Research on AIDS (formerly the NIMH Office of AIDS) has adopted the definition of a "network of mutual commitment" to connote the range of organizational structures that are the reality of families to day & Bray, 1997) . (NIMH has developed a logo that captures the di­ versity of modern families ; see Figure 1 .1 .) Thus, persons who fulfill the roles traditionally specified by genetics and legal terms are acknowledged as family members (Mellins, Ehrhardt, Newman, & Conrad, 1996) . The members of these nontraditional families may be more similar in shared values and interests than traditional extended family members because they select each other more often than is the case for members of biological families . Intergenerational families that include grandmothers parenting their grandchildren is only one configura­ tion that is meeting the challenge of the global orphan problem (Williamson, 1994) . A model that has elegantly served the needs of gay men is the d.ifAerlnthaoubgwmiyfrnadlochie(Lvjy,198)

Figure 1.1

NIMH Logo

gay men in the 1990s may have "come out" to their parents and siblings and may consequently rely on their family of origin's support more than has been the case historically, many familial needs have been and continue to be filled by families of choice, composed of partners and extended family and friendship networks. Social networks, such as those of intravenous drug users, share intimate social experiences and paraphernalia in shooting galleries or on the streets . These so­ cial networks at times perform many familial roles even when substance abusers are in close touch with their families (Bekir, McLellan, Childress, & Gariti, 1993 ; Page, 1990) . Although not generally known, 26 out of 28 reports attest to the regularity with which most drug addicts maintain contact with one or more of their parents or parent surrogates (Stanton & Shadish, 1997).

FAMILY CONFIGURATIONS The following are some family configurations that are common in families in­ fected and affected by HIV/AIDS and are based on real families, but the names are fictitious . Ruby had several children before she became infected in her 30s; when she died, her two uninfected and one infected children were left to be cared for by her mother—the children's grandmother . The grandmother already had her daughter-in-law and her two children fathered by the grandmother's son in her household . The daughter-in-law and the grandchildren have been living with the grandmother since her son was incarcerated and received a 7- to 10-year

prison sentence . A second family is a mixed serostatus couple—such as John and David—who have a close circle of friends who play multiple familial roles. A third family can be a seropositive single mother, Jean, who lives with her chil­ dren, some of whom are seropositive and others seronegative, and her current boyfriend—Raphael—who is not the father of any of the children . The fourth family is a seropositive woman and her boyfriend—Juanita and Sam—who are trying to decide if they are going to have a baby and, if so, whether Juanita will take the full AZT regimen to prevent vertical transmission . A fifth family can be members of a social network of injection drug users in an urban area—such as Frank and Jim—who participate in a relatively stable social network that injects together in shooting galleries and other gathering places known only to them; they play both the instrumental and social support roles of extended family members to others in their social network . Finally, there is the family in the chapter by Rapkin et al . (2000) in which an HIV+ man in a homosexual relation ship is providing the social support to the grandmother of his partner's brother's girlfriend's baby. FAMILIES AS A FRAMEWORK FOR PREVENTION AND ADAPTATION PROGRAMS Historically, Western scientists and service providers have had an individualis tic perspective (Szapocznik, 1994), but those among them with a family systems perspective balance the interests of individuals, on one hand, with the collective well-being of the family, on the other (Boyd-Franklin, 1989) . In tackling prob­ lems related to preventing HIV infection and adapting to HIV/AIDS within families, it is important to understand HIV-related behaviors in the social context in which they are learned and reinforced (cf. Perrino, Gonzalez, Soldevillo, Pontin, & Szapocznik, in press ; Szapocznik & Coatsworth, 1999 ; Szapocznik & Kurtines, 1993) . Noncontextual, fragmented approaches may complicate the problem and create a sense of hopelessness on the part of individuals, families, peers, and health care workers rather than promoting family efficacy and more effective family resource use. Impact of Which Family Member Is Seropositive Although families most affected by the AIDS epidemic have problems in common, they are likely to face very distinct issues based on the lifestyle and premorbid vulnerability of the infected family member . The challenges faced by the family member can be quite dissimilar depending on, for example, whether the person is a gay man, an older woman, a pregnant adolescent, or an infant . A double crisis can occur when the family discovers unsuspected homosexuality, bisexuality, infidelity, or drug use at the same time that they learn of an HIV+

status . The family member must then cope with lifestyle as well as chronic health problems and death and dying issues . Social isolation may result from the stigma associated with HIV infection, a possible high-risk lifestyle, real or per­ ceived rejection by family and friends, desire to remain anonymous, and not knowing how or with whom to talk about concerns and to whom to disclose their serostatus (Roffman, Gillmore, Gilchrist, Mathias, & Krueger, 1990). Family Composition and Roles In addition to the differences due to who in the family is infected, the prob­ lems families face and the ways that they cope are largely influenced by family composition . For example, women are more likely to be single parents, whereas gay men may be more likely to consider friendship networks as family . The cur rent "family system" of living with a person with AIDS (PWA) may or may not include significant partners, parents, grandparents, children, siblings, in-laws, other relatives, close friends, and even neighbors and unrelated members of the PWA's household (Mellins et al ., 1996) . Critical differences among families are associated with family culture and with family members' ages and genders, the makeup of their households, their lifestyles and patterns of contact, and length of tenure in the house. The distribution of family roles and responsibilities— such as raising children, bringing in an income, and assisting the PWA—can also play a large part in shaping the kinds of problems families face, as well as options for coping with those problems . While providing support to the seropos­ itive family member, families are also trying to prevent further infection among its members. ROLE OF FAMILY IN PREVENTING THE SPREAD OF HIV As HIV infection has spread among heterosexuals, researchers have focused on risk reduction activities among families and social networks, Families are con­ sidered by many to be the single most influential force in the life of children and adolescents (Szapocznik & Coatsworth, 1999) . HIV prevention family programs have typically taken the form of education about HIV/AIDS and interventions aimed at developing parental competencies that can influence adolescents' behaviors . Increased attention has been given to examining how families serve to promote or encourage adolescents to adopt responsible behavior that decreases high-risk behaviors (Brooks-Gunn & Paikoff, 1993) . It has been sug­ gested that negative family life experiences are risk factors for h. In contrast, parental monitoring of adolescent activities ig-rskbeavomndlsct delays initiation of sexual behavior (Romer et al ., 1994; Stanton et al., 1993 ; St. Lawrence, 1993) . Other researchers have explored the impact of socioculturally

related factors and family system functioning on issues relevant to the percep­ tion of HIV/STD risk and risk reduction among poor, urban, and ethnic families, particularly African Americans and Hispanics (Boyd-Franklin, 1989; Szapocznik & Kurtines, 1993). Due to economic and social conditions, these subgroups of families have been identified as the most at risk of acquiring HIV infection. The increasing numbers of sexually active adolescents and their failure to use condoms consistently, along with the upward trend in HIV infection among ado­ lescents, have renewed public health efforts to provide information on protective sexual practices to adolescents . Consistent with the public health model, most sex education programs are individually directed toward adolescents themselves and are provided through convenient venues such as school and community agencies. Some students may understand and use the information delivered this way, but others may not be ready to appreciate its significance, and still others may not be ready or predisposed to adopt recommended behaviors. Repeated exposure to sexual health messages presented in a variety of forums during the formative years can help ensure that information is available when youth are ready to receive it. One option for matching readiness of youth with availability of information is to provide parents with information and skills (including training on developmentally appropriate ways of relating and communicating about sex) to guide their adolescents in making responsible decisions regarding sexual behavior. The assumption here is that information is provided to parents will, in turn, be pre­ sented to their adolescents, and skills developed in parents will permit them to present and reinforce information in developmentally appropriate ways about sexual risk behavior throughout the teen years . Moreover, parents can do a lot more than present information about sex . Parents communicate values, model appropriate behavior, encourage bonding to family and school, encourage chil­ dren to form a long-term view of thier b ehavior, and monitor the behavior of their children and their friends . Consequently, alert parents can have consider­ able information about what is occurring in the life of an adolescent at any one time and can adapt their interventions to the life conditions and the potential risks facing their adolescent. Because families are the most proximal and fundamental social system influencing human development (Bronfenbrenner, 1986), they are a strategic point of entry for effective and lasting behavioral change— that is the objective of the interventions described in this book. Research has overwhelmingly demonstrated the role that families play in healthy development (Christopherson, Miller, & Norton, 1994 ; Leland & Barth, 1993) . The quality of parent-child relations is also an important predictor of sex­ ual risk behaviors . Adolescents who report low levels of parental support (Biglan et al ., 1990) or more emotional distance from their families are more likely to engage in sexual behaviors at a younger age (Whitebeck, Conger, &

Kao, 1993) . Remarkably, children's perceptions of their relationships with their parents at ages 7 to 11 predict age of first sexual intercourse 11 years later (Miller, Norton, Curtis, Hill, & Schvaneveldt, 1998), Level of mother's coercive behavior and "love withdrawal" predict earlier age of first intercourse for women (Miller et al ., 1998) . Positive family factors have also proven protective of sexual risk behaviors (Leland & Barth, 1993) . In particular, adolescents' be­ liefs that they have a close relationship with their parents are protective against early sexual intercourse. Paikoff and colleagues found that there is greater risk of early sexual debut with earlier pubertal maturation if there is family conflict (Paikoff et al ., in press). Although the overall quality of the parent-child relationship is important in preventing risky sexual behaviors in teens, parent-child communication is a crit­ ical of their risky sexual behaviors . The lack of open and comfort­ able discussion about sexuality, even in the most relevant relationships, is a ma­ jor concern for adolescent HIV prevention (IOM, 1997) . In general, parents and children do not speak sufficiently about sexuality (Hutchinson & Cooney, 1998), and, as a result, adolescents overestimate their mothers' level of approval of their sexual behavior, whereas mothers underestimate the amount of sexual activity of their teens (Jaccard, Dittus, & Gordon, 1998) . Parent-child communication about sex decreases HIV risk behaviors (Leland & Barth, 1993; Stanton et al ., 1993) . Youth reporting parent-child discussions about sex are more likely to delay sexual activity (Fox, 1981 ; Darling & Hicks, 1982 ; Stanton et al., 1999). Mother-adolescent discussions regarding condom use prior to first sexual inter­ course increase the chances of adolescents using condoms during first sexual in­ tercourse and subsequent encounters (Christ, Raszka, & Dillon, 1998; Christopherson et aL, 1994 ; Miller et al ., 1998). Given the important role that parents can play in promoting the sexual health of their adolescents, particularly as it relates to HIV prevention, several parentoriented interventions have been developed by members of the NIMH Consor­ tium on Families and HIV/AIDS and are presented in this book (Dilorio et al ., 2000 ; Jemmott et al ., 2000 ; Krauss et al ., 2000 ; McKay et al ., 2000) . Krauss has developed a prevention program for mothers and fathers to use with preadolescent children to help parents become experts in their children's eyes (Krauss et al ., 2000), In this way, parents can teach and model for their children knowledge, attitudes, and behaviors about HIV/AIDS and safer sexual prac­ tices . These efforts are aimed at fostering family involvement in the sexual health of adolescents, including delay of sexual intercourse, acquisition of information about HIV/AIDS, and enactment of HIV risk reduction practices. Parents participate in four 3-hour group training sessions, given once a week. These sessions cover HIV knowledge and HIV safety skills ; child development; parent-child communication ; communication about sex, drugs, and HIV; recog­ nition of risky situations and how to avoid them ; negotiation skills to handle

risky situations ; and sensitive and safe interactions with persons with HIV. The initial parent training is followed by a parent-child session in which each parent and child meet alone with a facilitator, the parent chooses activities to perform with the child, and the child has an opportunity to ask any unanswered questions. The parent group meets again after 3 months to discuss real-life situations that have occurred. Parents play a pivotal role in guiding adolescents' sexual behavior during transition years in which situations of "sexual possibilities" are likely to in crease (McKay et al., 2000) . A sexual possibility is an opportunity for young people to engage in risky behavior because they are not closely supervised . The intervention developed by Paikoff (1995) combines both parent-only groups and child-only groups with multiple-family groups . It is meant to promote com­ fort and communication about information and values related to puberty, early sexual behavior, and HIV/AIDS . Work in this realm has borrowed heavily from Bronfenbrenner' s (1986) social ecological theory, which considers parents as the most fundamental social context influencing children's development into adaptive or maladaptive adolescents (i .e., children who manage more or less constructively their social relationships). This work recognizes that the sexual behavior of adolescents must be approached as part of the social development of the youth and that parents have a crucial role to play in guiding and shaping the social and sexual development of their children . It should be noted that within this movement there are two streams : One of these builds on the evidence that parents or parent figures lose influence as children reach adolescence, and the other builds on the evidence that parents or parent figures continue to have con­ siderable influence on their children, even as children grow into adolescence, but that as youth mature and grow in their search for autonomy, it takes consider able skill to harness this influence in such a way that it can continue to guide youth even after they enter into a world in which peer norms—perceived and real—gain significant influence . Clearly, the work of Paikoff et al . (in press ; see McKay et al ., 2000) is representative of the latter approach. Dilorio and her colleagues (2000) have developed a prevention program for mothers and their adolescents (11 to 14 years old) . The long-term objectives of this approach are to foster family involvement in the sexual health of adolescents, including delay of sexual intercourse, acquisition of information about HIV/AIDS, and the enactment of HIV risk reduction practices . Mothers and ad­ olescents meet every 2 weeks over 3 months for a total of seven sessions. All sessions are designed to be interactive with the use of games, videos, role-plays, and skits to demonstrate and practice skills learned in the session . There are also take-home activities in which each participant can set a personal goal to be ac­ complished before the next session. Interventions with parents, particularly mothers, may be critically important to reduce HIV risk-associated sexual behaviors of African American male ado­ lescents . Jemmott and her colleagues (2000) have therefore developed an inter­

vention that is designed so that mothers can teach their sons about sex to de­ crease risky behavior among this very at-risk population . This program helps mothers examine their personal values related to sexuality and provides them with factual information to share with their sons . Activities are intended to in­ crease mothers' understanding about developmental challenges and social c.omuniatskl stressors that their sons are experiencing and to improve their parental

ROLE OF FAMILY IN ADAPTING TO AND DYING OF HIV
Although AIDS until recently was almost universally a fatal disease, with ade­ quate treatment it is increasingly becoming a chronic disease . When adherence to treatment is a challenge, when symptoms persist, when the infected individ­ ualpsychologically or phsically debilitated by the illness, or when there are is other complicating factors such as substance abuse, mental illness, or other se­ vere conditions, families continue to be under considerable stress, and their commitment to the patient continues to be challenged . Many issues within families can be addressed in preventive interventions, such as the following: 1. disclosure of disease status and symptoms; 2.­ disclosure and stigma about revealing within the family the route of infection (ho mosexuality, drug use); 3. overcoming obstacles in the past relationship between the seropositive person and her or his family; 4. developmental issues and changing roles (e .g ., an adult who for many years was independent needs to be reintegrated into family for care, the teenager of a dying par ent trying to move toward emancipation, a drug-addicted mother in recovery who needs to regain a role as mother and daughter within her family, etc .); 5. stress and coping abilities of the seropositive individual and family ; and 6. adaptation to disease, infectiousness, and the dread of a "death" sentence. There are also issues of the family in relation to its social environment, such as social stigma if extended family, friends, and neighbors find out about the HIV status ; relationship between family of origin, on one hand, and family of choice and friends, on the other ; and relationship between the various aspects of family and the health care system. Multiple problems create obstacles and challenges for families attempting to cope with AIDS, including geographical distance ; competing demands for family members' time, energy, or other resources (Stoller & Pugliesi, 1989) ; lack of knowledge about how to be helpful (Good, Good, Schaffer, & Lind 1990; Starrett, Bresler, Decker, Waters, & Rogers, 1990) ; and a history of negative

interactions (Shinn, Lehmann, & Wong, 1984 ; Fiore, Becker, & Coppel, 1983; Fobair et al ..),1986 As illness advances, some family members withdraw due to physical or emotional exhaustion or overidentification with the patient (Carl, & 1986 ; Dunkel-Schetter & Wortman, 1982 ; Flaskerud, 1989 ; Namir, Wolcott, Fawzy, 1989) . Family members may also be reticent to discuss problems with the PWA, for fear of making the PWA sicker by worrying him or her. By the same token, PWAs may be reluctant to become a burden to their family members (Hays, Catania, McKusick, & Coates, 1990) . The problems of coping with ill­ ness are compounded by the stigma of AIDS . PWAs and their families may expe­ rience rejection from friends, loss of jobs, and harassment (Bor, Miller, & Goldman, 1993) . Concerns about disclosure may cause parents affected by AIDS considerable difficulty in seeking support, disclosing to their children, and making permanency plans for children who will be orphaned at their death (Smith & Rapkin, 1995, 1996). Families affected by AIDS face multiple health care and psychosocial problems throughout the illness trajectory . Problems include complex medical man­ agement and caregiving issues, disruption of family roles and routines, and con­ cerns the family's future as illness progresses . The course of illness and the efficacy of treatment are both unpredictable at the level of an individual, making it impossible for families to know precisely when and with what prob­ lems they will need to cope . Often families have not resolved issues associated with the PWA's exposure to HIV, including homosexuality, bisexuality, sub­ stance use, and infidelity prior to finding themselves in a caretaking role. Family members may have caretaking concerns that include helplessness associated with being overwhelmed by the needs of their ill family member for time, energy, or money, and they may feel that they do not possess the abilities needed to be good caregivers . Major adjustments in the family's lifestyle may need to occur if the ill family member lives at home . Siblings and spouses may have additional concerns such as having their needs ignored as the family at­ tends to the sick member. There may be anger in low-income families where ev­ eryone is expected to contribute to the household but the seropositive person is unable because of fatigue and unpredictable health. Several studies conducted prior to the advent of the newest medications have provided an initial taxonomy of the problems experienced by families affected by symptomatic AIDS cases (Pequegnat & Bray, 199'7) . These stressors are still relevant when the seropositive family member is unable to tolerate treatment, is unresponsive to such treatment, or has other conditions that make medication adherence difficult (e .g ., substance abuse, mental illness) and consequently con­ tinue to manifest severe physical symptomatology: I . concerns about recurring acute illness episodes; 2. difficulty in adhering to a complex medical regimen;

3.­ isolation from other family members and friends, contributing to the deterioration of partner and family relationships; 4.­ emotions associated with illness (e .g ., depression, confusion, loneliness, fear, and suicidal ideation); 5. guilt about having infected others; 6. difficulty in maintaining a predictable routine; 7. anxiety about financial problems; 8. complicated task of relating to multiple health and mental health providers; 9, lack of good medical care and counseling; 10. lack of available and affordable housing and related services because of their known health status; 11. possible need to address problems of substance abuse and change in lifestyle; 12. lack of respite from providing care and inadequate or unavailable alternative child care; 13. need to plan for bereavement and future of the survivors ; and 14, handling the stigma of a disease with moral overtones. Obviously, AIDS places an enormous strain on family systems . Families are called on to respond and manage an unpredictable illness while managing other chronic and acute stressors, often with little or no specialized training, guidance, or support. Given the scope and uncertainty of the challenges they face, families affected by AIDS need flexible coping skills that can be applied to a variety of circumstances . It is interesting to note that the patterns of reliance on family seem to differ according to population or site . In a study of the use of public health service in the New York City greater metropolitan area, Crystal and Kersting (1998) found that asymptomatic persons tend to rely on social support from their families, but as the disease progressed, public health services are used more for more complex health complications, In contrast, a study in San Fran­ cisco revealed that seropositive gay men tended to rely on their families of choice and extended support network, but as the disease progressed, they tended to rely more on their family of origin (Hays et al ., 1990) . These differences may be explained by proximity to family . In New York, a larger heterosexual popula­ tion tended to live closer to their families . As the disease progressed, the family may have become exhausted or burdened with having to care for more than one seropositive family member. In San Francisco, on the other hand, the population was more largely homosexual with parents not living in the area . As the disease progressed, the family of choice or the extended family of choice may have be come exhausted, and in fact romantic partners may have also become ill and died, at which time the seropositive person tended to seek the support of their families, who often lived out of town and had not been taxed up to that point with the stress of day-to-day care .

Coping with AIDS is exacerbated when more than one family member in a household, or even in the close extended family, is HIV infected, including chil­ dren . Indeed, many families have already experienced significant losses due to AIDS . PWAs and their families are subject to considerable distress associated with these demands and concerns . Of course, problems related to AIDS co­ occur with other issues facing the family . Given high levels of poverty, sub stance use, unemployment, and poor health care, at any given time, AIDSrelated problems may not even be the most pressing for these families (Smith et al ., 2000) . In addition to the stressors experienced by all families, AIDSaffected families have additional challenges that require family solutions, such as caretaking for the ill family members and reassigning roles filled by the sero­ positive person prior to the illness . Rapkin et al. (2000) have developed an intervention to enhance AIDS-affected families' abilities to problem solve . The Fam­ ily Health Project (Rapkin et al ., 2000) teaches families problem-solving skills. Problem solving is broken down into its component elements, and families are encouraged to follow these steps : (a) create a comfortable climate for problem solving, (b) identify the problem, (c) brainstorm, (d) weigh the consequences of various alternatives, (e) think through together the implementation of possible solutions, (f) set goals, and (g) evaluate solution outcomes. Taking another tack, Szpaocznik and colleagues (see Mitrani et al ., 2000) have designed an intervention to improve the quality of the social relations and supports of African American seropositive women . In their work, this team found that one out of every two seropositive African American women who re­ ported problems with their families had a recent history (less than 3 years) of drug addiction or abuse. Not surprisingly, however, for all the women—those who had been drug abusers and those who had not—the usual problems in living confronted by inner-city minority families were prevalent : poverty, parenting is sues, day care, family conflict, marital infidelity, and violence in the neighbor­ hood causing the loss of lives of close friends and family members, among oth­ ers . For these women, family therapy to assist in the integration to the family of origin was needed because frequently, family members felt that they had been betrayed in prior episodes of sobriety that ended in relapse . An approach focusing on changing the quality of relationships, building family trust, increasing mutual support, and reducing blaming and personal attacks (family negativity) was successful in helping the seropositive women regain a valued role with their families . Often family work targeted restoring the woman to a parenting role with her young children, whose guardianship she had frequently lost to her mother because of addiction and neglect . A broadly social ecological perspec­ tive also helps to rebuild a supportive network around the woman and her family that includes the family's relation to kin and other neighborhood supports, faith community, and HIV support groups, among others. Although Szapocznik and colleagues' prevention program reintegrates women into their social support system, a program that helps seropositive

women build social support networks to enhance and prolong their lives is the WILLOW program (Wingood & DiClemente, 2000). The WILLOW program creates HIV support networks for women in semirural areas, where these women feel isolated through stigma and low rates of disclosure . There are sev­ eral compelling clinical and public health reasons to design a secondary preven­ tion program for women living with HIV aimed at building supportive social networks, increasing coping skills, and reducing stress, risky sexual behaviors, and STDs . First, an effective program could reduce the risk of disease progres­ sion among women living with HIV that may result from women's exposure to other strains of HIV or sexually transmitted diseases during unprotected sex. Second, an effective program could promote quality of life among women living with HIV that may result from reducing stressors, enhancing coping skills, and building stronger social networks that, it is hoped, will translate into a more healthy life and less need for expensive health care . Third, an effective program could reduce risk of HIV transmission to seronegative sexual partners . Finally, an effective program could reduce risk of HIV transmission to unborn children. Children and Adolescents as Orphans and Abandoned Children Based on the literature on childhood bereavement, it is anticipated that chil­ dren and adolescents who are orphaned will experience long-term difficulties in . adjustment as a result of losing a parent (see Sandler et al ., 1992, for a review) Losing a parent in adolescence is of particular concern because it may affect de­ velopmental processes of self-concept and identity formation, interpersonal re­ lations, schoolwork, family involvement, and psychological well-being . At the individual level, bereavement can impede a youth's successful completion of these developmental tasks and interfere with a successful transition to adulthood (Balk, 1991) . The negative impact on adolescents whose parents live with HIV/ AIDS may be even greater than would be suggested by the bereavement litera­ ture because these families typically experience additional AIDS-specific stressors, including stigma (Herek & Capitanio . 1993), protracted illness that may disrupt childhood, internal and familial conflict over disclosure (to whom? when? how much?), and, because HIV/AIDS is associated with poverty, a lack of buffering resources such as a second parent in the home and involvement in substance use subcultures, which may adversely affect pre-AIDS family coping. At the family social ecological level, having a parent incapacitated by AIDS and later losing that parent to AIDS have ecodevelopmental consequences (cf. Szapocznik & Coatsworth, 1999) . When families are functioning in an adaptive way, parents are typically the family leaders, and when they are ill or die, that family leadership and connectedness may be lost unless provision has been made to have it taken over by someone else . Parents connect the child to the extended family . Parents also have critical roles to play in providing guid­ ance, nurturance, and support . Moreover, they can be involved in collaborative

relations with teachers to help a child achieve in school and may exert sufficient influence to guide youth toward prosocial peers and away from antisocial peers. When a parent becomes ill or dies, these important ecodevelopmental functions are lost or at best imperiled. The literature on childhood parental loss has focused mainly on post-death factors and has tended to neglect pre-death factors. Parents who are dying of AIDS are often burdened by poverty, inadequate medical care, and a host of other interrelated social problems . Many of these chronic stressors and those that occur in poor communities have been found to affect children's mental health (Achenbach, Howell, Quay, & Conners, 1991 ; Florenzano, 1991; Garbarino et al ., 1991 ; Jaenicke et al .,1987 ; Masten, Best, & Garmezy, 1990; Quinton, 1989 ; Wallerstein & Kelly, 1980), The parent's terminal illness itself is a chronic stressor that may create psy­ 1.G9ar7mezy) chological risk for children (Garmezy & Rutter, 1988 ; Rutter, and Rutter (1988) found that repeated stressors (e .g ., multiple hospital admis­ sions of an ill parent) were more likely to be related to psychological disturbance in children in the context of chronic psychosocial adversity. The effects were not cumulative but geometric : Children were 4 times more likely to demonstrate psychiatric disorder when exposed to two stressors and 10 times more likely when exposed to more than five stressors . Because children of parents with AIDS may have many potent risk factors for psychological disturbance before parental death, they may be especially vulnerable to psychological disorder af­ ter the death. To address these problems with children and adolescents orphaned by HIV/ AIDS, two prevention programs that were developed with a community-based organization are presented . Although AIDS orphans are an appropriate target for preventive efforts, few systematic attempts have been made to intervene. Bauman et al . (2000) have developed Project Care, which is a preventive intervention designed to improve the psychological functioning of children who sur­ vive the death of a parent from AIDS . This intervention has four specific goals: (a) facilitating disclosure decisions and heightening communication between the ill parents and their children and future caregivers, (b) enhancing the stabil­ ity and security of the child's future through development of an appropriate and feasible custody plan prior to the parent's death, (c) working with the caregiver and child after parental death to ease the transition to the new family, and ( d) providing access to concrete resources and social support. This is accomplished by a carefully crafted home-based program that is delivered in two parts : (a) after parental diagnosis with AIDS (or late-stage HIV disease) and (b) after parent death, Family specialists meet with the family approximately every 2 weeks to access the resources that are required (e .g ., lawyers, social workers, etc .) to move the family along the permanency planning continuum and to accomplish disclosure and transition goals . A range of psychoeducational materials is used to address healthy eating, stress management, and relaxation .

Another program designed to help parents make decisions regarding disclo­ sure and custody as well as to increase a family's ability to maintain positive daily routines while the PWA is ill has been developed by Rotheram-Borus and Lightfoot (2000) . The coping skills of a family to handle the challenges of HIV disease are extremely important in their adjustment to HIV and normalizing life. The ultimate goal of this prevention program is the long-term adjustment of the adolescent children after their parent has died . This program is designed to ad­ dress issues of social identity, roles, rules, and behaviors of these youth . There are different phases of the intervention : coping skills intervention, illness phase, and adjustment phase, which occurs after the parent has died.

CONCLUSIONS AIDS has presented families with a whole constellation of new prevention and adaptation challenges . The prevention programs presented in this book provide service providers with an array of options for working with families around these issues . Family-oriented prevention programs can greatly enhance the quality of life of families infected and affected by HIV . They also provide pro­ grams that can enhance the social service options of service agencies and may ultimately prove to be cost-effective by keeping family members from becom­ ing infected and by keeping those who are infected out of the expensive public health care system.

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