The opportunity to connect information behavior and parental HIV disclosure.
The 37th World AIDS Day is approaching, on December 1st, as I approach completing my first term of doctoral coursework. As I move forward in my journey, I will be sharing the evolution and progress of my research. This term I focused on parental HIV disclosure, curious to learn more about what research has been done, what it says, if there are existing connections to information behavior and what opportunities may remain.
The theme for 2024, the 37th World AIDS Day, “Collective Action: Sustain and Accelerate HIV Progress.” Admiral Rachel L. Levine, MD, Assistant Secretary for Health at the U.S. Department of Health and Human Services noted, “We must all come together to remember the millions of people we have lost to HIV/AIDS. In their memory, we know we must take collective action to continually improve, resource, and further the reach of programs to the communities most and disproportionately impacted by HIV.”
As of 2023, roughly 14.1 million children under the age of 18 had lost one or both parents to AIDS-related causes. While there remains no cure or vaccine, there have been great strides in treatment, improving the prognosis and prolonging the lives of parents living with HIV and increasing the number of and longevity of people living with HIV becoming parents. While the number of children impacted by their parents HIV status continues to increase, more research is needed about how to best support them. One such way is through encouraging parental HIV disclosure.
Benefits and barriers
Research has shown that disclosure of parental positive HIV/AIDS status to their children has multiple benefits, including the ability to better support these children. However, disclosure rates worldwide are low and research about interventions to encourage disclosure is also low. Some benefits of parental disclosure of HIV status to children include access to greater support, reduction in parenting stress, improved communication, enhanced relationship quality and stability and improvements in family functioning.
Based on research by Lightfoot et al., Mugo et al. and Sun et al., the most common barrier to parental disclosure of HIV status to children is the fear of negative reactions from either the children, the community or both and participants in research surveys have described fear of stigma, discrimination and/or disrespect. Mugo et al. summarizes, "Parents who felt shame, embarrassment, or fear of judgement related to their own HIV status expressed unwillingness to disclose their status to their children.” Research by Lightfoot et al., Madiba and Sun et al. also identify fear about the child’s age and related ability to understand information about HIV/AIDS and its significance as a barrier to parental HIV disclosure.
Despite the identification of these barriers, little has been done to explore interventions to mitigate them. Research by Corona et al., Da et al., and Muga et al. explores interventions to mitigate barriers to disclosure such as providing supportive services to parents about and through the disclosure. However, scarce research exists about interventions to address the most identified barriers of the fear of stigma and other negative feelings. The deficiency in addressing these barriers may even be extending the negative impact on HIV-impacted children. Nöstlinger says, "While discrimination has been identified as the major obstacle to prevention and care, the silence in many HIV-affected families may now extend the stigma into the next generation, emotionally burdening both HIV-infected caregivers and HIV-affected child.”
Disclosure as information behavior
The act of disclosure is encompassed by current definitions of information behavior. Disclosure is “the act of making something known or the fact that is made known.” Information behavior is defined by scholar T.D. Wilson as “the totality of human behavior in relation to the sources and channels of information, including both active and passive information-seeking and its use.” Case & Given offer the most encompassing definition of information behavior to include information seeking “as well as the totality of other unintentional or serendipitous behaviors (such as glimpsing or encountering information), as well as purposive behaviors that do not involve seeking, such as actively avoiding information”. Parental HIV disclosure should be understood as an information sharing behavior as it is an act that entails purposeful and intentional sharing or not sharing of information.
Connecting my research to increase disclosure
As both a health information practitioner and researcher, I do see an opportunity to apply our discipline’s expertise to this health problem with continued, worldwide, direct and indirect impact. Information behavior theory may provide useful theoretical frameworks to the study of parental HIV disclosure. Though they may be slow to realize, changes to human behavior can help to stop pandemics and information behavior theory is a way we may gain new understanding about the nuances of such disclosure. This is a focus I will be pursuing as part of my doctoral research.
HIV/AIDS is a reminder that pandemics do not readily disappear. It serves as a reminder that scientific breakthroughs can take time and that while treatment may improve, direct and indirect impact can last for decades. As we approach the 37th World AIDS Day, we must continue to pursue diverse and new academic curiosity in ways that can be applied in the real world, to all that are affected.
