the family’s future as illness progresses. The course of illness and the effi cacy of treatment may be unpredictable, making it impossible for families to know pre-cisely what problems they will need to cope with and when.
Family members may feel helpless and overwhelmed by the needs of their ill family member for time, energy, or money; and they may feel lacking in good care-giving skills (Szapocznik et al. 2004 ) . Family and caretakers can be instrumental in helping the patient maintain good medical treatment adherence (Lyon et al. 2003 ; Simoni et al. 2006 ) .
Of course, problems related to AIDS co-occur with other issues facing the family. Given high levels of poverty, substance abuse, unemployment, and poor health care, at any given time, AIDS-related problems may not be the most pressing problems for families (Smith et al. 2001 ) . In addition to the stressors experienced by all families, AIDS-affected families have challenges that require family solutions, such as caretaking for the ill family members, replacing the lost income, and reassigning roles fi lled by the seropositive person prior to the illness.
social support in the intervention condition, compared to standard care condition (Rotheram-Borus et al. 2001 ) . Over four years following the delivery of the interven-tion, fewer adolescents became teenage parents and fewer parents were drug depen-dent in the intervention compared to the control condition (Rotheram-Borus et al.
2004 ) . At six years, youth in the intervention condition reported signifi cantly less substance use three and six years later. In addition, positive parental bonds reported at baseline reduced emotional distress at three years and increased positive future expec-tations at six years Rotheram-Borus et al. 2006 ) .
Based on the success of this initial intervention for families living with HIV, Rotheram-Borus and colleagues began a series of adaptations of this intervention for different contexts. These adaptations rest on the premise that there are predict-able challenges faced by all families affected by HIV (e.g., disclosure, social sup-port, medication adherence, stigma, transmission behaviors), which are affected by the particularities of local culture and social context (Rotheram-Borus et al. 2005a, b ) . The fi rst of these adaptations was in Los Angeles, CA. This adaptation accounted for therapeutic advances in the prevention and treatment of HIV illness as well as shifts in the population of infected mothers, which resulted in moving the interven-tion from New York to Los Angeles. Three hundred and thirty-nine HIV-positive women who were the mother or primary female caregiver of a child between the ages of 6 and 20 years and 257 adolescents between the ages of 12 and 20 years were recruited. At 6-month follow-up, more mothers demonstrated reductions in hard drug use in intervention compared to control. For adolescents, there was also a reduction in hard drug use and negative family-based life events among the inter-vention group, relative to control (Rice 2007 ) .
Thailand has been the fi rst international context for the adaptation of this inter-vention. Thailand has been extremely successful in mounting individual-based interventions to combat HIV/AIDS. Yet, the effect of HIV radiates throughout the family. Rotheram-Borus and Li initiated a study in Northern and Northeastern Thailand to adapt the cognitive-behavioral intervention developed by Rotheram-Borus and her colleagues. The adaptation of the intervention contents, tools, and activities was achieved through a series of workgroups involving a U.S. research team, the local Thai research team, and health care providers from Thai provincial, district levels. Adaptation of intervention tools and activities required careful reframing to fi t the Thai culture. In particular, as a country deeply rooted in Buddhism, meditation emerged as a highly relevant and applicable relaxation activity in Thailand. Therefore, meditation was employed throughout the pilot sessions as a relaxation activity. In addition, meditation was applied as a stress management tool in several of the intervention sessions. Similarly, singing and dancing were incorporated as ice breaking activities; these were highly relevant and appropriate in Thai culture, thus promoting group cohesiveness and supportive environment. The team is currently mounting the main trial and providing the family-based intervention in northern and northeastern Thailand, focusing on family well-being, in a nonstigmatizing setting (Lee and Singparu 2007 ) .
Different international contexts create unique challenges to the adaptation of the original family-based program. Work has been done in China to assess the needs of
families affected by HIV. The studies illustrate that family is an intricate part of the disclosure process in China, and demonstrates the importance of including families in HIV/AIDS interventions. This is especially important and relevant in the context of China’s new “four frees and one care” policy (Li et al. 2007 ) . Moreover, because of the family challenges caused by HIV/AIDS, some children needed to fi nd paid jobs outside the home in order to contribute to the family’s income. Lack of money also impacted the family’s capacity to provide children with ample, healthy, nutri-tious food. The stigma and discrimination these families and children faced only added to their diffi culties. Together, these challenges affected children’s normal developmental process and school performance, and some children were not able to attend school at all (Ji et al. 2007 ; Lin et al. 2008 ) .
In the most recent international work on family-based secondary prevention, Rotheram-Borus and her collaborators have developed adaptations of the original family-based intervention for two different communities in South Africa. Unique challenges impact the development and delivery of effective interventions for fami-lies impacted by HIV in high-incidence developing world countries. For example, a vestige of South Africa’s apartheid past is the fragmentation of ante- and postnatal care and TB and HIV testing and care into uncoordinated clinics. Working in KwaZulu-Natal and the Western Cape Provinces, Rotheram-Borus is investigating whether a clinic or neighborhood-based intervention is the optimal settings for the delivery of a family-based secondary prevention program. She is also exploring the impact of using positive social deviants (Mentor Mothers) as interventionists (Rotheram-Borus 2007 ; Trizzino 2007 ) .
Rapkin and colleagues ( 2000 ) developed an intervention to teach AIDS-affected families problem solving skills. The Family Health Project (Rapkin et al. 2000 ) breaks down problem solving into its component elements and encourages families to follow these steps: (1) create a comfortable climate for problem solving, (2) iden-tify the problem, (3) brainstorm, (4) weigh the consequences of various alternatives, (5) think through together the implementation of possible solutions, (6) set goals, and (7) evaluate solution outcomes. Both patients and family members in the experimen-tal group reported that they were more likely to reinforce one another’s problem solv-ing efforts (Rapkin et al. 2007 ). They were also more likely to express uncertainty about problems. Although this result was unexpected, it may refl ect the fact that the patients in the intervention group and their family members reported more unresolved problems. Despite this, they reported greater ability to care for themselves. Families receiving the intervention attended support groups more often than controls and were more likely to have a case manager. Consequently, these families were also more able to maintain their sense of well-being relative to the control group.
Taking another tack, Szpaocznik and colleagues designed an intervention, Structural Ecological Therapy (SET), to improve the quality of the social relations and supports of African American seropositive women (see Mitrani et al. 2000 ) . The intervention focused on changing the quality of relationships, building family trust, increasing mutual support, and reducing blaming and personal attacks (family negativity). This social ecological perspective helped to rebuild a supportive net-work around the woman and her family that included the family’s relation to kin and
other neighborhood supports, faith communities, and HIV support groups. The fi rst test of this approach was successful in reducing psychological distress and family hassles and, that reduction of family hassles was partially mediated by the reduction in distress (Szapocznik et al. 2004 ) .
SET has been adapted to a variety of populations and target behaviors. It is being modifi ed for use in helping seropositive men returning from prison reintegrate into their families (ecosystems). The goals are to mobilize participants’ families and other ecosystem members, such as service providers, to support and motivate reduced HIV risk behavior and increased medical adherence. Participants and their ecosystem members meet with intervention staff in sessions designed to restructure their interactions and communication patterns, to better support participants’ posi-tive behavior change. Preliminary results indicate that men in SET are adapting much better to family life, reducing HIV risk behaviors, and increasing adherence to medication regimens after their release from prison.
Another adaptation of SET is being conducted that focuses on women being reintegrated into their families after drug treatment. Drug abuse and subsequent treatment frequently include prolonged separation from the family, who may feel betrayed due to prior episodes of sobriety that ended in relapse. This adaptation focuses on relapse prevention, HIV medication adherence, and reduction in HIV sexual risk behavior. Like the original adaptation of SET , it works to help seroposi-tive women reestablish a parenting role with their young children, whose guardian-ship they may have lost because of their addiction, neglect, and time away in substance abuse treatment.
While SET reintegrates women and men into their existing social support sys-tems, another program that helps seropositive women build new social support net-works to enhance and prolong their lives. The WiLLOW Program : Women Involved in Life Learning from Other Women was designed to reduce HIV/STD risk behav-iors and enhance psychosocial factors, such as expanding social networks of women living with HIV (Wingood and DiClemente 2000 ) . These women who live in semi-rural areas feel isolated because of stigma and low rates of disclosure. The four-session, group-administered intervention emphasized gender pride, maintaining current and identifying new network members, HIV transmission knowledge, com-munication and condom use skills, and healthy relationships. Over the 12-month follow-up, women in the WiLLOW intervention relative to the comparison reported fewer episodes of unprotected vaginal intercourse and had a lower incidence of bacterial infections (Chlamydia and gonorrhea). Additionally, participants in the intervention reported greater HIV knowledge and condom use self-effi cacy, more social network members, fewer beliefs that condoms interfere with sex, fewer partner-related barriers to condom use, and demonstrated greater skills in using condoms. This is one of the fi rst trials to demonstrate reductions in risky sexual behaviors and incident bacterial STDS and to enhance HIV preventive psychosocial and structural factors. Centers for Disease Control and Prevention (CDC) has evalu-ated and classifi ed WiLLOW as an “evidence-based intervention” and is disseminat-ing it nationally as part of its Continuum of HIV Prevention Interventions for African American Women.
Adolescents whose parents are living with AIDS face daily challenges and stressors related to the stage of their parents’ illness and adjustment following their parents’ death. An intensive, cognitive-behavioral intervention was developed by Rotheram-Borus and colleagues ( 1997 ) that address coping at each phase of adjustment. The intervention targeted long-term social, behavioral, and mental health outcomes of the adolescent for both the mothers and their adolescents.
Parents living with AIDS and their adolescent children participated in both joint and adolescent-only sessions in order to enhance their affective and behavioral skills for coping with the parents’ illness. The intervention was delivered in three modules of 8–16 sessions each. In Module 1, parents were helped to recognize their emotional response to their own diagnosis, make decisions about illness status disclosure, and establish positive daily routines in their household. Module 2 focused on parenting, custody, and estate planning. Adolescents joined their parents for the last eight sessions, addressing their reactions to parental illness and daily routines. After the parent died, adolescents and their new custodial parents addressed issues of bereavement and adjustment in Module 3.
In order to address the disruptive social and economic circumstances of children whose mothers died from HIV, Project Care was designed to test the effi cacy of a short-term preventive intervention (Bauman et al. 2000 ) . The aims of the study were to reduce risk factors and increase protective factors in children to prevent psycho-logical dysfunction after their mothers’ AIDS-related death. The intervention enhanced disclosure and communication among seropositive mothers, the desig-nated guardians, and the children. It enhanced stability and security of the child’s future by developing an appropriate custody plan prior to parental death. It enhanced work with guardian and child after the death of mother to facilitate the transition to the new family. It also enhanced access to resources and social support. Thirty-fi ve percent of mothers disclosed their HIV status to their children, ages 8–12 years old (Bauman et al. 2002 ) . If they disclosed to one child, they usually disclosed to all the children.
In Project Care more than 50% of the mothers with HIV were depressed, which was signifi cantly related to mothers’ reports of having non-HIV-related medical conditions, spending time in bed in the past 2 weeks, having more activity restric-tions, and having a lot of diffi culty caring for their children due to ill health.
Higher scores were also associated with lower education, more negative life events, and greater receipt of inadequate social support. Thus, higher distress was associated with inability to perform usual activities and mobilize social support.
However, other HIV-related health factors, traditional background characteristics, and psychosocial measures (e.g., HIV stigma, parenting stress, family environ-ment) failed to indicate who was most vulnerable (Silver et al. 2003 ) . While maternal illness per se was not associated with childhood distress, maternal depression, inadequate maternal support, or poor mother–child relationships.
However, the mothers’ illness was associated with symptoms of poor mental health in the children. Children behavior problems were signifi cantly related to the mother’s psychological distress and marginally related to her having illness-related activity restrictions. They were not illness-related to other measures of maternal
physical health, stigma, or disclosure of their HIV status to the children. Two children’s dispositional factors: productivity and independence; and two family factors: adaptability and a good parent–child relationship, were related to better functioning of the children. Paradoxically, family cohesion was a risk factor for poorer adjustment (Bauman et al. 2002 ) .
Over the 2-year period, every child (100%) scored in the clinical range (12%
once 25% twice, 26% three times, 27% four times, and 9% all fi ve times). Most were identifi ed by both maternal and child report (only on maternal report, 5%; only on child report, 8%). Chronicity of symptoms was not related to child age or gender, maternal health, parent–child relationship, maternal depression, or participation in Project Care . Two-thirds of the children received mental health services during the 2 years, but less than 25% received care at any one time. Half of the children with chronic symptoms never received counseling (Bauman et al. 2007 ).
An important area of family research that has not received enough attention is advance care planning for seropositive adolescents and their families. Lyon and colleagues conducted a focus group with parents who had lost an adolescent to HIV/AIDS, to collect ideas about a program that would make it easier for families to discuss these sensitive issues (Lyon et al. 2007 ) . Parents reported that it would have been valuable to have a program to help them talk with their children about what kind of treatment they wanted and what end-of-life decisions (e.g., extent of care, after-death plans for children) should be made. Focus groups with HIV-positive adolescents also indicated that they would be interested in participation in such a program. Lyon and colleagues have completed the development of an NIMH-supported Family Centered Advance Care Planning Program (Lyon et al.
2007 ) . Intermediate results indicate that families are fi nding the study satisfying and worthwhile. Furthermore, no problem solving session was needed to work through disagreements. Parents in the treatment program were more satisfi ed than their adolescents compared with parents and adolescents in the control group.
Those receiving the intervention reported feeling “courageous” and feeling “like a load lifted off my mind.” There were no adverse outcomes. Unexpected positive fi ndings included families’ requests for copies of the Five Wishes, an advance directive. Families spontaneously reported that now that they understood how the process worked, they wanted to complete one. Adolescence is a critical period for setting the stage for the development of a sexual code of ethics and for consolida-tion of a moral code of living. This is an under-researched area, an opportunity for families and providers to facilitate the growth of HIV-positive adolescents entrusted to their care.
In summary, there is a need to view the families of patients as partners in the treatment process. Until recently, families of patients were not viewed by the medical community as resources in the treatment of the patient. The family is deeply affected – physically and psychologically – by the trauma of serious illness, espe-cially one as devastating as AIDS. The family – whether of origin or of choice – can provide powerful support, guidance, and solace when its considerable resources are marshaled. Although there are common concerns, coping strategies for different
stresses may be required, depending on which members of the family are HIV-infected. Interventions can restructure familial interactions and communication patterns, enhance family problem solving skills, enhance a supportive social net-work, improve quality of life, and ensure HIV risk reduction.