Parentsí Disclosure of HIV to Their Children
November 11, 2002
Increasing numbers of families are living with a parent with HIV, creating challenges for parents to decide whether, how, and when to disclose their HIV status to their children. Clinicians often encourage serostatus disclosure, yet there are few empirical data on which to base these recommendations. Studies of disclosure of parents serostatus have been based primarily on qualitative observations and case examples. Therefore, the first goal of this study is to describe trends in the patterns of parents disclosures of HIV status to their children over time.
Based on previous research, the authors examined the relationship of disclosure to self-esteem, emotional distress, coping styles, health status, ethnicity, perceptions of stigma, and their childs age and sex. Finally, in order to provide clinical recommendations on the benefits or costs of disclosure, the impact of disclosure on childrens behavioral and emotional adjustment is examined over 5 years.
The New York City Division of AIDS Services has a log of 95 percent of persons with AIDS qualified for social welfare benefits. From August 1993 to March 1995, 619 persons were logged by DAS. The eligibility criteria were: being HIV-infected; having at least one adolescent child age 11-18 years; and permission of the case managers to enroll. During this period, only one parent living with HIV (PLH) was referred to DAS per family. Of the 619 potential participants, 155 died prior to being approached and 35 case managers evaluated that the research project could be potentially harmful to a family. Of the 619 PLH logged, 429 (69.3 percent) were eligible; of these 429, 65 (15 percent) were untraceable, 46 (10.7 percent) refused participation, and 11 (3 percent) were ineligible because of severe illness or incarceration. Thus, 71.5 percent (n=307/429) of eligible PLH were recruited, reflecting 84 percent (n=307/364) of the traceable PLH. Five years after recruitment, 149 (48.5 percent) of the PLH had died.
While the DAS was mandated to serve only persons with AIDS, not all parents had AIDS diagnosis: at recruitment, only 40 percent self-reported an AIDS diagnosis (n=119), 42 percent were HIV symptomatic (n=126), and 19 percent were without HIV symptoms (asymptomatic; n=56).
These data were collected as part of a randomized controlled intervention study with 153 families in intervention and 154 in the control condition. Delivered in two modules (23 sessions), module 1 addressed parents ability to cope with negative affect related to their health status, to make disclosure decisions, and to reduce problem behaviors. Module 2 included both parents and adolescents. Parents learned to parent while ill and make custody plans; for adolescents it focused on reducing problem behaviors, improving parent-child relationships and reducing emotional distress. The authors monitored additional counseling services received regarding disclosure issues; 36 parents received these services at some point over 5 years.
Parents were more likely to disclose to older (75 percent) than to younger children (40 percent). Mothers were more likely to disclose earlier than fathers and they disclosed more often to their daughters than to their sons. Parents were more likely to disclose over time to children of all ages; disclosure did not vary according to parents ethnicity, socio-economic status, self-esteem, or mental health symptoms. Disclosure was significantly more common among parents with poor health, more stressful life events, larger social networks, and those who perceived their children experiencing more HIV-related stigma. Over time, poor health status and a self-destructive coping style were associated with higher rates of disclosure. Parental disclosure was significantly associated with more problem behaviors and negative family life events among their adolescent children.
Overall, parental disclosure of HIV status is similar to disclosures by parents with other illnesses, the researchers concluded. Clinicians must assist patients to make individual decisions regarding disclosure.
11.08.02; Vol. 16; No. 16: P. 2201-2207; (11.08.2002) Martha B. Lee; Mary Jane Rotheram-Borus
This article was provided by U.S. Centers for Disease Control and Prevention. It is a part of the publication CDC HIV/Hepatitis/STD/TB Prevention News Update. Visit the CDC's website to find out more about their activities, publications and services.