Background: 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 can result in severe and debilitating complications, including vaso-occlusive crises and organ damage. To prevent these complications SCD requires complex self-management. SCD is associated with significantly shortened lifespans in both countries; however the average lifespan in Jamaica is 10.5-11 years longer when compared to the US. Many personal and background factors including, perceived stigma, demographics (country, age, race, sex, socioeconomic status) and clinical (disease severity, hydroxyurea use, genotype) characteristics may influence self- management strategies and QoL in SCD. These characteristics have not been explored in either country and there are many differences between countries in how SCD is managed and stigma is perceived. Methods: This cross sectional study will utilize a convergent parallel mixed methods design (individual interviews and self-report surveys). 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 (SCD-HRSS)] and QoL [Adult Sickle Cell Quality of Life Measures (ASCQ-Me) emotional impact, pain episodes, pain impact, sleep impact, social functioning impact, and stiffness impact; disease severity].
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. Significance: Understanding the relationships between perceived stigma, demographic and clinical characteristics, SCD self-management strategies and QoL in Jamaica and the US will illuminate useful comparisons that could lead to new strategies to improve SCD self-management despite stigma.

Public Health Relevance

Sickle cell disease (SCD) is debilitating condition that requires complex disease self-management to maintain optimal health and quality of life. Patients with SCD often experience high levels of stigma which can be a barrier to adequate self-management and impede quality of life. This research will advance the understanding of the relationships between stigma, self-management, and quality of life in SCD in the United States and Jamaica.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Predoctoral Individual National Research Service Award (F31)
Project #
5F31NR017344-02
Application #
9587421
Study Section
National Institute of Nursing Research Initial Review Group (NRRC)
Program Officer
Banks, David
Project Start
2017-09-01
Project End
2020-06-30
Budget Start
2018-09-01
Budget End
2019-08-31
Support Year
2
Fiscal Year
2018
Total Cost
Indirect Cost
Name
Duke University
Department
Type
Schools of Nursing
DUNS #
044387793
City
Durham
State
NC
Country
United States
Zip Code
27705
Bulgin, Dominique; Tanabe, Paula; Asnani, Monika et al. (2018) Twelve tips for teaching a comprehensive disease-focused course with a global perspective: A sickle cell disease example. Med Teach :1-7
Bulgin, Dominique; Tanabe, Paula; Jenerette, Coretta (2018) Stigma of Sickle Cell Disease: A Systematic Review. Issues Ment Health Nurs :1-11