Kudos to PhD student Dominique Bulgin and her mentor Paula Tanabe for the submission of their Heilbrunn Nurse Scholar application entitled “Understanding Stigma and Self-Management of Sickle Cell Disease.” This proposal is for a two-year period with a start date of April 1, 2018.
Sickle cell disease (SCD) is the most common genetic blood disorder in the United States (US) and Jamaica and primarily affects individuals of African descent. SCD requires complex self-management and is associated with significantly shortened lifespans in both countries; however the average lifespan in Jamaica is 11 years longer. Many personal and background factors including perceived stigma, demographics and clinical characteristics may influence self-management strategies and quality of life (QoL) in SCD. These characteristics have not been explored in either country.
This cross sectional study utilizes a convergent parallel mixed methods design. Participants will be interviewed about disease self-management strategies and how sources of stigma influence these strategies. Demographic and clinical characteristics will be assessed using questionnaires. Quantitative measures will be used to assess perceived stigma (SCD Health-Related Stigma Scale) and QoL (Adult Sickle Cell Quality of Life Measures). The specific aims of this study are to:
Aim 1: Determine the influence of perceived stigma and demographic and clinical characteristics on SCD self-management and QoL in adults with SCD in the US and Jamaica.
Question 1: What are the influences of perceived stigma and demographic and clinical characteristics on SCD self-management?
Question 2: What are the influences of perceived stigma and demographic and clinical characteristics on QoL?
Aim 2: Describe the relationship between SCD self-management strategies and QoL.
Studying these relationships in Jamaica and the US will illuminate useful comparisons that could lead to new strategies to improve SCD self-management despite stigma.