365 DAYS OF INFANT MORTALITY USING PHOTOVOICE TO UNDERSTAND INFANT MORTALITY AS AN ISSUE FOR SOCIAL CHANGE

Purpose (a): African Americans have an infant mortality rate more than twice the rate of Whites; yet there is limited information about parents' experience of an infant death and their perceptions about the causes of racial disparity in infant mortality. Photovoice, a documentary photography technique, was used to give a voice to parents who experienced an infant loss, and to better understand the causes and effects of racial disparity in infant mortality. To date, no known Photovoice projects have focused solely on the perceptions of parents who suffered an infant death. Methods (b): North Texas parents who experienced an infant loss were recruited using convenience sampling techniques. Participants were provided digital cameras, and asked to photograph and journal about community resources which were helpful to them as they grieved, and community resources, or lack thereof, they felt may have contributed to the death of their baby. Participants were divided into two groups based on current residency (Fort Worth or Dallas, Texas). These groups met monthly, giving participants an opportunity to discuss their photos, journal entries, and experiences during the project. Photographs and journal entries will be on display at a local art gallery as an exhibit, "Eight Warrior Mamas: Survivors of Infant Mortality - Empty Arms, Broken Hearts, and Grieving Wombs." Results (c): African American women (n=6) and White women (n=2) participated in the project. From their photographs and group discussions three themes emerged. The first theme was poor post-partum care. Many of the mothers reported feeling that the health provider they visited after delivery was insensitive, and the post-partum examinations were uncomfortable. The second theme was loneliness and isolation. The mothers described finding it difficult to locate support groups and other resources to help them during the grieving process. The third theme was the poor/inappropriate response from health insurers and regulatory agencies such as Child Protective Services. The mothers expressed that they were treated in a cold and distant manner when communicating with different systems about their deceased child. Conclusions (d): This project is an innovative approach to identifying systemic issues that contribute to racial disparity in infant mortality. Through the exhibit parents who suffered an infant death have a platform to voice their loss and their concerns about needed social change. Additionally, the exhibit increases community awareness of the issue of infant mortality. These findings suggest the importance of continuing to raise awareness about infant mortality and the need to further assess institutional polices' effect on racial disparities in infant mortality.