Sonia's mother was informed that she was HIV infected after a visit to the emergency room in 1992. At the time, Sonia, age 5, was her only child. In addition to his relationship with Sonia's mother, Sonia's father was secretly having sexual relationships with men and women who were injection drug users. When Sonia was 3 months old, her father abandoned the family. A year later, Sonia's mother married her new boyfriend and they eventually had two children together. Sonia believed that her stepfather was her biological father. After Sonia's mother was diagnosed HIV positive, all family members were screened for HIV infection. Sonia was the only other family member who was found to be HIV infected and was immediately diagnosed with AIDS. Sonia's mother never told her that she was infected with HIV.
Sonia began a ZDV regimen immediately after she was diagnosed with HIV; however, her health remained poor during childhood and she was hospitalized on numerous occasions. Her mother, feeling very guilty for Sonia's infection, focused so much attention on her that the extended family members stepped in to care for the two younger children. Sonia's mother closely guarded the fact that she and her daughter were HIV infected. This strained her marriage but counseling was refused. The relationship ended in divorce when Sonia was 8 years old. At the time of the divorce, when Sonia's mother was becoming symptomatic herself, she reluctantly disclosed to her older sister that both she and Sonia were HIV infected. When Sonia was 10, her mother died of AIDS-related complications, and her three children moved in with their maternal grandmother. At the funeral, Sonia overheard her grandmother telling a relative that her mother had died of AIDS and that she, too, was infected with HIV. When Sonia confronted her grandmother about what she overheard, her grandmother confirmed the information but told her not to tell her siblings and that they should all forget the past and concentrate on the present. Despite the grief, family upheaval, and some "learning challenges" and problems with "attention," Sonia did graduate from high school the year prior to this visit.
Sonia lives with her grandmother and siblings and works part-time as a cashier at a local grocery store. Sonia wants to be a psychologist, but she is struggling to make passing grades in two classes at the community college. No one in Sonia's family has attended college, and Sonia is having a hard time getting family support to pursue a college education. In addition, her grandmother speaks very little English and cannot help Sonia with her academic workload. Sonia has Medicaid coverage, has attended the same pediatric clinic since her diagnosis, and has access to all the HIV medications prescribed to her. Nevertheless, adherence has been a major struggle and a source of considerable conflict between Sonia and her grandmother.
Sonia has a few friends, none of whom knows that she is HIV infected. Over the past year, she has been involved in her first romantic relationship. At this visit she tells her new pediatrician, Dr. Klein, that she has not disclosed her HIV status to her boyfriend because she fears he would leave her if she did. When asked about condom use, Sonia reports using a condom every time she and her boyfriend have sex but she makes Dr. Klein promise not to tell her grandmother that she is sexually active. Sonia's grandmother has told her not to make the same mistake of getting pregnant too young as many of her friends have done. Sonia thinks that her grandmother would be very upset if she knew about her being sexually active. Sonia also tells Dr. Klein that she can't sleep because she is extremely worried that her boyfriend may be cheating on her. She also reports "drinking a little" and "not being very good at remembering to take all of her medications."
1. How is Sonia's history of family secrets affecting her health?
- Dr. Klein should assess Sonia for complicated grief reactions. Was it her mother's wish that she and her siblings live with her grandmother? Does Sonia experience guilt over her mother's death? Dr. Klein or other psychosocial staff members should work with Sonia's grandmother to ensure that she and her siblings are given the opportunity to remember their mother openly, grieve, and create rituals that allow them to remain emotionally connected to their mother. Dr. Klein should probe to determine how much her fear of losing her boyfriend is related to the fear of losing yet another person to whom she is attached. Additionally, he should explore how the pattern of family secrets may have caused Sonia's reluctance to disclose her HIV status to her friends and her boyfriend.
2. Is Sonia clinically depressed?
- Although the symptoms that Sonia presents with at this visit can be signs of disease progression, they are also signs of depression. Because perinatally infected adolescents are at high risk of comorbid psychiatric disorders, Dr. Klein should assess for unresolved guilt, grief, and mood disorders. He should find out how disclosure to friends and, in particular, sexual partners has been handled in the past. Suicidal ideation among HIV-infected youth is not uncommon, so Dr. Klein should probe for these feelings and refer to a youth-friendly psychiatrist or other mental health provider, if appropriate.
3. How has Sonia's HIV infection affected her neurocognitive abilities?
- HIV-infected children are at increased risk of developing central nervous system disease characterized by cognitive, language, motor, and behavioral impairments. The "difficulty remembering things" that Sonia described may be related to psychological distress, but it also can be a symptom of HIV-associated cognitive impairment. The learning issues presented, especially those related to attention, are clear indicators that Dr. Klein should order neurocognitive testing.
- Dr. Klein should discuss Sonia's professional aspirations with her to determine how realistic it is that she could complete the graduate work required to become a psychologist. Dr. Klein should explore the availability of educational support resources outside the family to help Sonia cope with her school workload. Sonia could be referred to a mentorship program to expose her to professional women who could mentor her.
4. What issues related to sexuality should Dr. Klein explore with Sonia?
- Sonia reluctantly and secretly admits that she is sexually active. Dr. Klein should listen to her concerns about disclosing her HIV status to her boyfriend and sensitively assess her level of knowledge and skill for communicating this information to him. Sonia's family members have chosen secrecy as their way of dealing with HIV--an approach she has adopted in her own relationships. If she does not fully understand how to prevent HIV transmission and feels that she cannot tell her boyfriend herself, Dr. Klein should ask whether she would be open to him or other staff members meeting with her and her boyfriend to disclose her status and help him understand the implications.
- Dr. Klein should probe to determine whether Sonia is truly using condoms every time she has sex and whether she is using them correctly. If she is not using condoms consistently and correctly, he should counsel her about the importance of preventing transmission of HIV and protecting herself from other sexually transmitted diseases. If needed, she should be referred for counseling to improve her condom negotiation skills.
- Although Sonia reports that her boyfriend is the only person she has had sex with, Dr. Klein should probe to determine whether Sonia has had other sexual partners and whether they may have been exposed to HIV.
- Finally, Dr. Klein should discuss the HIV transmission risks of different sexual activities so that Sonia understands how to have sex safely. In addition to this, Dr. Klein could talk about the grandmother's concerns about Sonia getting pregnant too young.