African Americans, particularly those that are socioeconomically disadvantaged, experience disproportionately high rates of chronic illness and mortality. Racially and/or socioeconomically disadvantaged populations also experience more health risk factors, lower healthcare access, and poorer health-related quality of life than others in higher socioeconomic classes.
Living in an area where a large proportion of residents are socioeconomically disadvantaged appears to exert negative effects on individual health status and may also lead to informational challenges that can affect health. People in disadvantaged neighborhoods often have reduced exposure to positive health promotion messages. Given the rise of chronic illnesses, this project addressed the pressing need to better understand health information behavior in communities where illnesses are widespread and where information access may be inconsistent.
This project examined the life experiences of chronically-ill patients in Flint, Michigan and found people actively doing information work to manage their health in the face of poverty, potentially violent conditions, high stress, and a distrust of institutionalized medicine. Through interviews with people who had diabetes, high blood pressure and kidney disease, researchers found that individuals often had access to a fair amount of health information, but it was not necessarily personalized by attentive healthcare providers. This problem could have been the result of challenges in accessing healthcare, but it was not due to a scarcity of information. Researchers observed the chronically ill in this community translating the information into the context of their lives, often requiring them to combine, transform and recast the information before it could be turned into localized health practices.
The study’s findings highlighted the importance of health information bound to local contexts and the significance of the translation work that takes place in “localizing” health information into relevant forms of practice given a community’s values and resources. The research suggested that professional information practice may benefit from an increasing focus on supporting or facilitating local information translations. Given that local information translations occur routinely in people’s everyday lives, future work on this topic needs to consider how translations can be supported in order to maximize a person’s well-being. It is also important to consider how local people with expertise in both the community and in medical practice can serve as translators to provide contextualized health information and how digital information might be leveraged to facilitate this translation work on a community level.
Currently, the researchers on this project are constructing a generalized application, named FIT, to help people understand their chronic conditions. FIT is video-based and personalized to individuals in their local contexts. According to Ackerman, the videos have been well-received and have the potential to better communicate health information when literacy issues are present, and can more effectively engage teenagers and young audiences that are trending away from text-based forms of communication.
This knowledge gained from this study is also being used to examine ways to understand the challenges facing school nurses in communities with healthcare disparities and develop ways to help improve communication and interaction between nurses and parents. In many healthcare disparate communities, the school nurse can be the first, and sometimes only, clinician available. UMSI PhD student Jasmine Jones has worked with Ackerman on this topic, which has looked into the development of an application called Health Blocks.
This application would use videos to allow school nurses to record information about illnesses and symptoms that a student may endure and share it with the parents in order to help them better understand their child’s condition. Ackerman noted that this could be helpful for chronic illnesses like asthma where parents may not understand what to look for or how asthma specifically affects their child, especially in these school settings where the symptoms of the asthma attack may have dissipated by the time the parent would get to the school.