Saturday, 15 January 2005 - 12:00 PM

This presentation is part of: Poster Session II

Conversations and Reactions to the Disclosure of Parental HIV: The Voices of Parents Concerning Their School-Aged Children

Purpose: Parents with HIV are living longer, but HIV continues impact family functioning. The nature of this chronic condition has been understudied. Reasons for parental disclosure/concealment are related to stigma and social support and continue to be a challenge for HIV affected families. The overall aim of this study was to go beyond these identified key psychosocial variables and to better understand the disclosure process of parents living with HIV.

The purpose of this mixed method study was to 1) document HIV positive mothers and father's decision-making regarding disclosure of HIV to their children; and 2) obtain information about why each child was disclosed/not disclosed to, specific language used, and reactions of children to the disclosure of their parent's HIV status.

Methods: This poster will report findings from a pilot study using qualitative and quantitative methods. The sample of convenience was 101 HIV positive parents of school aged children (ages 5-18), enrolled in an urban AIDS-designated treatment center. Parents completed a self-administered Parental HIV Disclosure Inventory, designed by one of the authors. Parents were asked to rate themselves as (0) non-disclosers, (1) in the process of disclosing, or (2) disclosers of HIV status to their children. In addition, parents completed several open-ended questions in which they were asked to provide their reasons for disclosing/concealing HIV status to each school-age child, what was said during disclosure, and the reaction of the child.

Participants were HIV positive parents (59% female and 41% male), unemployed, with a mean age of 42 years. Racial self-identification was similar to the population currently infected with HIV in New York City (51% Hispanic, 31% Black, 18% White).

Results: Sixty percent of the study population disclosed their HIV to at least one child, 15 % were in process of disclosure, 25% did not disclose to any of their children at the time of the study.

Two independent reviewers identified important themes from the parent's narrative. Parent's primary reasons for disclosure were: HIV education/protection; children's right/need to know; and progression of HIV disease. Primary reasons for secrecy reported were: Children's age/inability to cope; children's disclosure to others; fear. Children's reactions to HIV disclosure varied across a wide spectrum of mood states, including disbelief, fear, sadness, anger, and suicidal intent. Of particular interest was choice of language around disclosure. Parent's choice of language was more likely to be indirect than direct. Disclosures included information about transmission, reassurance for the child, or information about the parent's health status. Qualitative data/narrative will be further analyzed and presented using N-6 computer software.

Implications for Practice: These findings provide insight into parent's needs for assistance with disclosure and children's reactions to this information. Findings suggest that parents may need training and assistance with language skills for disclosure of HIV to children and children may need follow-up mental health counseling after disclosure. This study also suggests that parental HIV disclosure decisions continue to be an important consideration for parents living with HIV.

See more of Poster Session II
See more of Oral and Poster

See more of Celebrating a Decade of SSWR (January 13 - 16, 2005)