When parents are first diagnosed with AIDS (often at the same lime they learn their HIV serostatus), they must decide whether and how to tell their children about their health status. Most parents disclose their HIVillness to their adolescents. These adolescents must then cope with HIV-related stigmatization, their grief concerning their parent's life-threatening illness, and their anxiety about their own welfare. Module 1 (8 sessions over 4 Saturdays) of the intervention addressed parents, issues of disclosure, emotional reactions to AIDS, and coping with stigma.
On the basis of a qualitative study, pilot work, and previous intervention experience with persons living with HIV, an extensive manual was written to guide delivery of the intervention (available at http://chipts.ucla.edu). The manual covered all activities and materials needed for each session and included sample scripts for each activity. The intervention was delivered by social workers and graduate students in clinical psychology who had completed an initial 5-day training program for each module and received ongoing supervision. Training included didactic review of the session's goals, role-playing of each session with peers, and observations of pilot sessions.
Because AIDS was discussed in the intervention, only those adolescents to whom parents had disclosed their serostatus could attend (see Figure I for the design of the study). The intervention was delivered in 2 modules, the first module to parents alone (4 Saturdays) and the second module to both parents and adolescents (8 Saturdays). In module 2, each Saturday involved some time with parents meeting alone while their children met in separate groups, along with some time during which parents and youths were together in groups.
The groups typically met at a community center; transportation, breakfast, lunch, and child care were provided. Two sessions were held each Saturday, one 2-hour session in the morning and another 2-hour session in the afternoon (after lunch). Participants met in small groups of 8 to 10 parents or 8 to 10 adolescents, with up to 10 small-group meetings per Saturday.
The design of the intervention was based on social learning principles, Each session began with a review of behavioral successes over the previous week, after which new material was introduced, skills were practiced, and new goals were set. To facilitate skill acquisition, each group member's compliments to others were accompanied with tokens (small pieces of construction paper). A "feeling thermometer" was also routinely used within the group to assist parents and youths in recognizing their affective states and learning emotional self-control of these states. Because goal setting and problem solving were common across sessions, a method of charting problems over time was used.
In module 1, parents focused on their adaptation to positive HIV serostatus, learned to cope with negative affect related to. their health status, made decisions regarding disclosure, and formulated a plan for helping their children cope with the diagnosis. In module 2, parents focused on initiating custody plans, reducing risk behaviors, and creating and maintaining positive family routines while Module 2 adolescent intervention sessions focused on youths' adaptation to their parents' illness, improving parent-youth relationships, and reducing youths' risk acts.
For each content area, parents and adolescents engaged in activities designed to help them identify how HIV had influenced their social identity, social role (e.g., role as a woman or man), rules for acceptable behavior (e.g., regarding conflict resolution), and daily behavioral routines. Because time to death was much longer than expected, parents could attend makeup intervention sessions.
When families were recruited into this study, the parents anticipated dying in about a year. Most had told their children about their HIV status (75%). The children who knew about their parent's health status were exhibiting more behavior problems than those who did not know. These families faced challenges in regard to the illness, disclosure, custody, and saying good-bye. All of the families were dependent on financial support from governmental agencies, and many were hiding their illness from extended family members and friends, typically owing to fear of stigmatization.
A coping skills intervention is one strategy for preventing negative outcomes among adolescents in families in which there is a parent with AIDS. The intervention described here significantly improved adjustment among both parents and adolescents, typically with large effects. While problem behaviors increased or remained stable in the families in the standard care condition, there were significant decreases in these behaviors among both the adolescents and the parents in the intervention condition.
At 2 years, adolescents in the intervention condition reported 4 times fewer problem behaviors and 2.4 times fewer conduct problems than adolescents in the standard care condition. Increases in self-esteem were shown, and multiple problem behaviors decreased at a much higher rate among parents in the intervention condition than among parents in the standard care condition. These are important, long-term changes that are likely to reduce the societal costs of AIDS.
Public health officials may emphasize the social costs of having a parent with AIDS, but the quality of life for families must also be considered. In addition to reductions in problem behaviors, emotional distress decreased more quickly among the adolescents and parents in the intervention condition. At 15 months, there was a 3-fold to 8-fold decrease on each measure of emotional distress among parents in the intervention condition relative to those in the standard care condition.
Similar to the findings for emotional distress, family-related life stressors were significantly less prevalent among adolescents in the intervention condition than among those in the standard care condition. These decreases were again substantial and suggest that quality of life improved for those in the intervention condition in comparison with those in the control condition.
While the intervention substantially improved outcomes among parents with AIDS and their adolescent children, the outcomes for families in the control condition also improved over time, in contrast to existing theories regarding the long-term impact of chronic illness and bereavement. Emotional distress of parents and youths in both the intervention and control conditions improved over time. For example, while emotional distress was significantly less prevalent in the intervention group at 15 months, the conditions were similar in regard to emotional distress at 24 months.
There are at least 3 reasons for this improvement. First, antiretroviral therapies were introduced about 2 years into the study. A profound change occurred when families expected the parent with AIDS to die in about a year and these expectations were not realized. As one participant stated, "I made it for the cure." Such perceptions are likely to decrease both parents' and adolescents' emotional distress. Second, adolescents and parents may have learned to adapt to the illness; over time, conversations about the parent's HIV status decreased.
Finally, participation in the study itself may have been a positive intervention for the families, even if they took part only in the standard care condition. An interviewer visited the family every 3 months and repeatedly asked about disclosure, custody, and risk behaviors. Every major HIV prevention trial has shown control group improvements that have been sustained over time. Repeated assessments may be responsible for these changes, even without intervention. Future studies involving families coping with HIV may help clarify whether improvements over time are typical or related to the medical breakthroughs in disease management.
The intervention was aimed at helping families with issues relating to disclosure and custody plans, yet families in the intervention and standard care conditions were similar in these areas. As noted earlier, completion of repeated interviews regarding disclosure and custody plans represents a significant intervention in itself, and families in both conditions experienced these assessments.
However, disclosing and making custody plans may be inevitable over time among parents with AIDS. Most parents had disclosed their HIV status to their adolescent children before the initiation of the study (75%); therefore, there was little opportunity for change. Even though the program did not either endorse or discourage disclosure, all but 8 of the parents in the study had disclosed their serostatus to their adolescents within 2 years. About two thirds of the parents in both conditions had taken steps to formalize custody plans within 2 years.
Given the positive results, it is important to consider the strengths and limitations of the study's design. The sample was one strength. About one third of parents with AIDS in the United States reside in New York City (New York City Human Resources Agency, Division of AIDS Services, unpublished data, 1993), the study's site. New York City is unique nationally in centralizing referrals to the Division of AIDS Services, which allowed us to recruit a sample reflecting a representative population of parents with AIDS (84% recruitment rate for traceable participants).
The sociodemographic characteristics of the sample were similar to those reported to the Centers for Disease Control and Prevention for women with AIDS, again suggesting a representative sample.
- Rotheram-Borus, Mary Jane, Martha Lee, Marya Gwadz, and Barbara Draimin; An Intervention for Parents With AIDS and Their Adolescent Children; American Journal of Public Health; August 2001; Vol. 91 Issue 8
Reflection Exercise #10
The preceding section contained information
about group interventions for parents with AIDS and their children. Write three case study examples
regarding how you might use the content of this section in your practice.
In the intervention strategy discussed by Rotheram-Borus, what three concepts does the first Module emphasize?
Record the letter of the correct answer the