Parents' phases and children's stages of HIV disclosure

Background: HIV-positive parents are challenged with disclosure to their children. Some do not disclose at all, others disclose to some children, and many take years to fully disclose to all their children.

Methods:  This qualitative phenomenological study was conducted in Kenya to describe the lived experiences of HIV-positive parents and their children during the disclosure process. Sixteen HIV-positive parents were engaged in in-depth, semi-structured interviews. Interview data were analyzed using the modified Van Kaam method.

Results: Parents had a total of 37 living children; 15 HIV-positive, 11 HIV-negative, and 11 of unknown HIV status. Parents went through four phases (secrecy, exploratory, readiness, full disclosure) of disclosure; most admitted needing healthcare professionals’ help to move their children through the three child stages (no, partial, full) of disclosure . Most parents were in between the exploratory and full disclosure phases but had taken years to navigate these phases. Twelve children (HIV-negative and unknown status) had full disclosure of their parents’ illnesses, nine HIV-positive children had full disclosure of their own and their parents’ illnesses, and 10 children (five HIV-positive, four unknown status, and one HIV-negative) had partial disclosure of their own and/or their parents’ illnesses. Parents had indefinite plans to disclose to the six children with no disclosure.

Conclusion:Despite being challenged with disclosure, parents progressively navigated the disclosure phases and fully disclosed to the majority of their children. However, the creation of HIV disclosure guidelines, services, and programs would help hasten the time it takes for them to fully disclose to all their children.

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Learning Areas:

Assessment of individual and community needs for health education
Conduct evaluation related to programs, research, and other areas of practice
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs
Public health or related laws, regulations, standards, or guidelines
Public health or related organizational policy, standards, or other guidelines

Learning Objectives:
Describe the phases of HIV disclosure for parents. Describe the stages of HIV disclosure for children. Describe the HIV disclosure process for parents and children.

Keyword(s): HIV/AIDS, Community Health Programs

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the primary researcher who planned, collected data, and performed data analysis for this study. I have conducted HIV research and published my findings from the research in international peer-reviewed journals. I have also presented my research at the annual American Public Health Association conferences. My research interest lies in HIV disclosure of a parent's and a child's illness to HIV-positive and negative children.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 4275.0: HIV: Perinatal , Children, & Adolescents