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HIV/AIDS: Children

Abstract and Keywords

HIV/AIDS has introduced an array of issues and needs for children, youth, and their families. Family-focused interventions have emerged as a viable strategy for researchers and practitioners seeking effective and appropriate responses for the prevention, treatment, and care of children, youth, and families affected by HIV/AIDS. This discussion provides an overview of the epidemiology of HIV infection among children and youth, and highlights common elements and trends in the development, implementation, and testing of family-focused interventions. The discussion concludes with a commentary on areas for future attention.

Keywords: HIV/AIDS, children, adolescents, family, interventions


Children, youth, and families are significantly affected by HIV/AIDS. Important advances in the use of antiretroviral drugs, HIV screening of pregnant women, and the use of cesarean deliveries have greatly reduced the spread of HIV prenatally (Centers for Disease Control (CDC), 2005; Lindegren et al., 1999). Similarly, other medical advances have resulted in AIDS, once a fatal disease, now being a chronic disease; there is an increased life expectancy for individuals afflicted with HIV. Accompanying these medical advances are new challenges for social work and other health practitioners and researchers responding to the health and mental needs of children and youth. Over the course of the HIV/AIDS pandemic, family-focused interventions have emerged as a distinct methodological strategy for responding to the needs of this population. This entry provides a brief survey of current characteristics shared among family-focused interventions. Recognizing the significant advancements that have occurred internationally in designing and testing the family-focused interventions for children and families, we have limited this discussion to the United States. Some studies conducted in the United States serve as models for adoption internationally. On the other hand some international interventions offer models for addressing unique problems associated with families and HIV/AIDS in the United States, for example, HIV/AIDS and orphans, sexual coercion among women, and the interaction among HIV infection, heterosexual identity, and male same sex behavior (Culver & Gardner, 2007; Icard et al., under review; Jewkes et al., 2001). Additionally, while significant work has emerged through ethnographic studies, surveys, and longitudinal studies focusing on children and families affected by HIV/AIDS, this discussion is restricted to scientifically tested interventions involving randomized control trails. Since many of these studies are still under way or have recently been completed, final outcomes are not presented.

Demographics of HIV Afflicted Youth

On the basis of current data, approximately 9,348 children under age 13 are afflicted with AIDS, of whom 91% were infected as a result of mother-to-child transmission of HIV, an additional 4% acquired HIV from a transfusion of blood or blood products, and 3% acquired HIV from transfusion due to hemophilia (Centers for Disease Control and Prevention [CDC], 2005). Of the reported cases of HIV/AIDS in children under 13, an estimated 59% were Black/non-Hispanic, 23% were Hispanic, 17% were White/non-Hispanic, and less than 1% was in other minority groups (National Institute of Allergy and Infectious Diseases [NIAID], 2004). These statistics show a decline in prenatal HIV infections from 1991 to 2002, while the percent of AIDS diagnoses for children under 13 have slightly increased (CDC, 2005). Black/non-Hispanic continue to outnumber Whites in new AIDS diagnoses and deaths since 1996 (CDC, 2006).

HIV Infection in Infants and Children

On the basis of data from 2001–2005 (NIAID, 2004), the majority of HIV/AIDS cases among male adolescents ages 13–19 were attributed to male-to-male sexual contact (78%), followed by high-risk heterosexual contact (11%), and injection drug use (7%). Female teenagers (13–19) comprise 42.3% of teenagers with HIV infections and 57% of reported AIDS cases among youth. The female representation is higher for teenagers than for any other age group (CDC, 2007). For adolescent females ages 13–19, the majority of HIV/AIDS cases were attributed to high-risk heterosexual contact (86%), followed by injection drug use (13%) (CDC, 2007). These statistics on HIV/AIDS in children and youth shape the design and testing of HIV/AIDS family-focused interventions for prevention, treatment, and care among children, adolescents, and families.

Family-Focused Interventions


Family-focused interventions have demonstrated considerable effectiveness in reducing drug and alcohol abuse as well as tobacco use among youth (Alexander, Robbins, & Sexton, 2000; Brooks & Rice, 1997). Over the past several years HIV researchers and practitioners have increasingly turned to family-focused interventions in responding to the prevention, treatment, and care needs of children and families affected by HIV/AIDS. Many of these initiatives emerged as a result of a request for applications (RFA) from the National Institutes of Health that appeared in 1995 for studies on family-focused HIV prevention interventions (NIH, 1995, April 7). From 1997 to 2007, more than 238 family-based HIV intervention studies have been federally sponsored (Computer Retrieval of Information on Scientific Projects [CRISP], n.d.). Family interventions have become a significant methodological strategy used by researchers and practitioners in responding to the effect of HIV/AIDS on children, adolescents, and families.

Elements of Existing Interventions

There is considerable variability among family-focused HIV/AIDS interventions. The differences among family-focused programs are attributed in part to how the concept of family is operationalized and applied. Carter and McGoldrick (1999) make the point that definitions of the family vary from the traditional, with emphasis on nuclear and extended families, to untraditional with more expanded definition and an emphasis on the diversities that exists in family structures and relations. At a broad level and regardless of the definition of concept of family, family-focused interventions can be characterized by four common elements that include the focal unit, family change agent, intervention technology, and intervention setting.

The focal unit is the individual(s) in the family whose behavior or service need is being targeted for prevention, treatment, or care (Icard & Siddiqui, 2004). The family change agent is the individual(s) in the family responsible for delivering the intervention. For example a goal of a family-focused HIV prevention intervention may be to dissuade HIV risk behaviors among children by changing or modifying the behaviors of parents as change agents. A change agent could also be a biological or adoptive parent, guardian, or caregiver such as a nanny. Intervention technology refers to the strategies and methods used to equip the family change agent with the skills and resources needed to respond to prevention, treatment, or care requirements of the focal family member(s). Role plays, videotaped sessions of parent and children interactions, take-home exercises for parents and child to practice skills in their homes, and computer games are some examples of the various types of technologies employed in family-focused HIV/AIDS interventions. Intervention setting refers to where the intervention is delivered. For example, family-focused interventions may be delivered in a home, school, or agency setting.

Current Interventions

A cursory survey of scientifically developed and tested family-focused HIV interventions was done using databases from ERA Commons, Computer Retrieval of Information on Scientific Projects (CRISP), and Medline Health Information from the National Library of Medicine to identify current intervention trends. The selection was restricted to R01s, or investigator-initiated large scale family-focused intervention studies in the United States. In the following section we present selected interventions followed by a discussion that highlights examples of family-focused interventions. The examples reflect contemporary complexities of how HIV/AIDS affects the needs of children and families. Interventions are organized according to the focal unit or target population (that is, children and youth, special youth populations, and parents).

Children and Youth as Focal Units

Disparities in HIV/AIDS risk in relation to race/ethnicity, particularly the overrepresentation of African American, Hispanic, and American Indian youth, have captured the interest of researchers and practitioners. Considering that African American youth have one of the highest HIV-afflicted rates (NIAID, 2004), Jemmott et al. (2000) developed a prevention program for African American mothers and their sons. The Mother and Son intervention is a skill development program designed to increase mothers' abilities to teach their sons about sex. The goal is to decrease risky sexual behavior. Taking a slightly different approach to reducing HIV rate in urban African American youth, Icard (2000) focused his attention on testing a three-session intervention called Teaming African American Parents Together with Survival Skills (TAAPSS). TAAPSS was delivered to parents and their children ages 11–13. An additional component of this study is a test of the effectiveness of the intervention when delivered by parents versus professional group facilitators.

Turning attention to rural African American youth, Brody (2006) designed and tested the Strong African American Families High School (SAAF-HS) intervention. SAAF-HS is a seven-session intervention designed to dissuade rural African American youth from engaging in HIV risk and substance abusing behaviors. Parents and youth participate in separate sessions as well as together in combined parents and youth family sessions

Although Hispanics comprise 13% of the U.S. population, they account for 18% of the reported HIV cases (CDC, 2007). Low-income, urban, Hispanic youth have been identified as a group that may be at risk for the spread of human immunodeficiency virus (HIV). Directing attention to Hispanic youth, Pantin (2003) has employed a social-environmental model to test the efficacy of a parent-centered drug abuse and HIV prevention intervention titled Familias Unidas. Familias Unidas focuses on drug abuse and risky sexual behavior among Hispanic youth and targets three risk and protective factors: family functioning, parental monitoring, and the adolescents' social cognitive mediators.

American Indian youth constitute another at-risk population segment that has received limited attention from HIV prevention researchers and practitioners. For 2001–2005, on the basis of data from 33 states with confidential names, American Indians and Alaska Natives represented less than 1% of the total number of HIV/AIDS diagnoses reported for this period (CDC, 2005). However, during this period the estimated rate of AIDS diagnosis for American Indian and Alaska Native adults and adolescents was 9.3, the third highest after the rates for Black adults and adolescents (68.7), and Hispanic adults and adolescents (24.0) (CDC, 2005). These estimates suggest under reporting for American Indian and Alaska Native youth. To address the problem of HIV infection among American Indian youth, Kaufman (2003) developed a prevention intervention program explicitly for American Indian middle school youth. One of the aims of the intervention by Kaufman (2003) is on family and community context affecting HIV risk behavior among American Indian youth.

Special Youth Populations

Homeless youth. Homeless youth are at an increased risk for HIV infection because of a high prevalence of HIV-related risk behaviors, including drug use, sexual contact with persons at risk for HIV infection, and exchange of sex for drugs (Allen et al., 1994). Using out-of-school status as a crude proxy for homeless youth, a study conducted by Allen and colleagues revealed that out-of-school adolescents aged 14–19 years are significantly more likely than in-school adolescents to report ever having had sexual intercourse (70.1% versus 45.4%) and to have had four or more sexual partners (36.4% versus 14.0%).

Several familial risk factors have been linked to youth runaway behavior, including physical abuse and sexual abuse (Whitbeck & Hoyt, 1999; Whitbeck, Hoyt, & Ackley, 1997). Milburn (2004) has focused on family protective rather than risk factors to design an intervention titled Parents and Adolescents Collaborating Together (PACT). The aims of the PACT intervention are to improve family functioning of newly homeless children. This five-session intervention is delivered in short term shelters to newly homeless youth. The intervention technology for PACT consists of sessions that are designed to reduce HIV-related sexual and substance use risk acts by reframing runaway episodes, improving family functioning, increasing problem-solving skills, as well as promoting positive family interactions. The program focuses on important dynamics within family relations that may influence youth who run away and are homeless and thus are at risk for HIV transmission.

Youth with emotional and psychiatric disorders. The needs of adolescents with psychiatric disorders are also of concern. Recent research findings provide evidence that high-risk behaviors, especially intravenous drug abuse and nonprotected at-risk sexual intercourse, are reported by 20%–50% of psychiatric patients (Grassi, 1996). The prevalence of HIV infection has been found to be higher in psychiatric patients than in the general population (Otto-Salj, Kelly, Stevenon, Hoffman, & Kalichman, 2001; Sullivan et al., 1999; Susser et al., 1995).

Notwithstanding these statistics, limited attention is directed to adolescents with psychiatric disorders as a vulnerable and disadvantaged segment of the population at increased risk of HIV infection. In one of the few existing intervention programs, Donenberg (2002) has examined and developed an intervention designed to focus on the family processes and dynamics in mother–daughter relationships of emotionally disturbed girls that predict girls' sexual debut and risky sexual behavior. The program targets mothers of 13–15 year-old girls seeking outpatient psychiatric services at inner-city clinics in Chicago. The intervention is delivered in a clinic setting and includes structured videotaped interactions.

Parents as Focal Units

A number of studies conducted prior to recent HIV medical advances focused on problems experienced in families by parents affected by AIDS (DiClemente et al., 2001; Pequegnat & Bray, 1997; Rotheram-Borus & Stein, 1999). With the advent of highly active antiretroviral therapy (HAART) and the increased life expectancy among people infected with HIV, attention has broadened to address such issues as medical treatment adherence, disclosure, and stigma. Feaster (2002) has been conducting a study to evaluate a family intervention that is designed to increase treatment adherence in HIV+ parents. This is a four-month intervention that targets recently sober HIV+ women, their families, and their social networks to support HIV medical adherence, reduction in HIV transmission risk behaviors, and drug abuse relapse prevention.

Coping with HIV/AIDS can be particularly overwhelming for women. In addition to the stressors that come from the role as mother, there exist additional strains that come from managing medical as well as psychological demands. Studies reveal social isolation, depression, and a lack of confidence in parenting skills are common problems affecting the quality of life for HIV+ women. To address these concerns, Davies and colleagues (2007) are testing a brief six-week behavior intervention designed to promote positive parenting skills among HIV+ mothers. Similarly, Murphy and colleagues (2007) are testing an intervention designed to help HIV+ mothers disclose their status to their 6- to 12-year-old children. The primary aim of this intervention is to improve mother–child communication and parenting skills as they relate to disclosure.

Overall, parental chronic illnesses and related stressors have been shown to relate to adjustment problems in children (Romer, Barkman, Schulte-Markwort, Thomalla, & Riedesser, 2002) and parents living with HIV and their children experience similar patterns of stress and behavioral maladjustments (Rotheram-Borus et al., 2006). Parent-focused interventions have shown to be effective in coping and adjustment, and long-term positive behavioral outcome in children and youth (Rotheram-Borus, Lee, Gwadz, & Draimin, 2001; Rotheram-Borus, Lee, Yin-Ying, & Lester, 2004).

Challenges and Future Directions

HIV/AIDS medical treatment advances have introduced a new set of challenges for researchers and practitioners in responding to the needs of children, youth, and families. The family-focused programs highlighted in this discussion offer promise for introducing innovative strategies into the field. Still, there are continued needs for interventions and strategies that target neglected as well as emerging populations most affected by HIV/AIDS. Carter and McGoldrick (1999) call attention to the need to widen our lens and expand our views on the family. Likewise, a more expanded view of the family is needed in designing, implementing, and testing family-focused HIV interventions for children, youth, and families. Along these lines researchers have begun to broaden the focus on families more broadly by directing attention to how HIV/AIDS impacts men and their roles as fathers. Included among these recent works is Kershaw's (2006) work on HIV/STD risk among young expectant fathers, and Grinstead's (2003) studies on HIV+ men leaving prison. There is also the emerging attention being directed to the family change agent by focusing on communities in addition to families to dissuade HIV risk behavior among youth, for example, work by Browning (2003) examining the influence of social networks and family processes, including parental warmth and engagement on sexual risk behavior among adolescents. Still, limited attention is given to gay, lesbian, bisexual, and transgendered youth and families of choice. Of additional concern, is the ongoing need for better ways to introduce evidenced-based family-focused interventions into the field. There is also the need to create a feedback loop wherein the experiences in the field can be used in creating and refining intervention strategies to be more effective in responding to the current and changing complexities of HIV/AIDS among children, youth, and families. New service delivery systems and health policies are needed to respond to the special needs of AIDS patients and their families, including single mothers and gay couples.


Family-focused interventions have emerged as a viable methodological strategy for responding to the needs of children, youth, and families affected by HIV/AIDS. This cursory view of interventions serves to illustrate current trends in the use of family-focused HIV interventions targeting children and youth. The studies discussed so far highlight the complexities that exist in designing interventions that target the four key elements of family-focused interventions: the focal family member, the family change agent, intervention technology, and settings for delivering programs. There is less variety than expected in interventions geared toward HIV/AIDS in children and youth. Existing family-focused interventions are mostly geared toward mother–child dyads within the family. The role of fathers, despite a few studies directed to this segment, remains a neglected area. There is also the need for family interventions that focus on the broader network of mutual commitments shaping family dynamics and processes including differentiations in blood relations (for example, siblings), extended kinships (for example, aunts, grandmothers), and fictive kin (for example, foster parents, community aunties). Lastly, there is a need to consider the influences of external agents, such as friends, community and neighborhood organizations on the potential and capabilities of families' responsiveness to children, youth, and family members affected by HIV/AIDS.


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                                                                          Further Reading

                                                                          National Institute on Drug Abuse. (1997). Preventing drug use among children and adolescents: A research-based guide. (NIH Publication No. 97-4212). Rockville, MD: Author.Find this resource: