Mothers' Perceptions of Maternal HIV Disclosure to Adolescent Children

Background and Purpose:  A major source of stress for mothers living with HIV/AIDS is disclosing their HIV status to their uninfected children.  Mothers express concern about how the disclosure will affect the child’s functioning and behavior, as well as the impact of the disclosure on the parent/child relationship.   Research has examined maternal HIV disclosure and related outcomes for children as a single, binary event (non-disclosure to disclosure).  A small body of research suggests that maternal HIV disclosure which includes frequent and in-depth discussions about mothers’ illness offer better psychosocial outcomes for uninfected children.   

The current qualitative study examined mothers’ perceptions of adolescent outcomes following the initial disclosure of maternal HIV and over time as the adolescent became older.  Specifically, how do mothers describe their rationale for the initial disclosure; process of disclosure and perception of adolescent outcomes?  And how do mothers describe the content of ongoing communication about their illness and adolescent outcomes over time?

Methods:  Semi-structured interviews to explore participants’ perceptions of the initial disclosure event and adolescent outcomes were conducted with twenty-seven African American mothers who disclosed their HIV diagnosis to one of their uninfected adolescent children.  The mean age for mothers was 41.19 years.  Study participants were recruited via flyers that were distributed to three HIV programs that provide services to families affected by HIV/AIDS in an urban city in the Midwest.  Content analysis and counting code frequencies was used to quantify participant responses and identify themes regarding mothers’ perceptions of the initial disclosure event and adolescent outcomes. 

Follow up semi-structured interviews were conducted with forty percent of the twenty-seven mothers who agreed and consented to participate in an additional interview to reflect upon their perceptions of maternal HIV disclosure and adolescent outcomes over time.  Thematic analysis was utilized to identify recurring patterns in participants’ perceptions of various aspects of the initial disclosure (i.e. secrecy); the nature of HIV related communication following the initial disclosure; adolescent outcomes overtime and what would have been helpful during the process of disclosure.  The time span between the primary study and the follow up interviews was six years. Maxqda qualitative software was used to code all semi-structured interviews after the interviews were transcribed. 

Findings:   Mothers described adolescents as experiencing emotional distress following the initial disclosure that decreased over time as a result of ongoing communication and/or professional support.  HIV disclosure was perceived as an ongoing process that evolved over time in accordance with the adolescent’s maturation characterized by increased communication about mothers’ health, the role of the young adult as caregiver, concerns about secrecy associated with anticipated HIV stigma, safe sex practices and the need for social support for mothers and uninfected children. 

Conclusion and Implications: The results underscore the ongoing need for social work interventions and support to assist mothers and children with the process of maternal HIV disclosure. Findings from the current study indicate the need for research to examine outcomes associated with care giving roles adolescents and young adults assume as parents grow older with HIV/AIDS.