Lupus education, support systems necessary to meet needs of African American youth
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There is an unmet need among African American youth for more plentiful education and resources regarding lupus, according to data published in BMC Rheumatology.
“Lupus is a significant chronic disease in African American women,” Edith M. Williams, PhD, MS, of the department of public health sciences at the University of Rochester Medical Center, in New York, and co-authors wrote. “It affects primarily young women in their childbearing years (between the ages of 15 and 40 years). Progression to renal failure in young Black women with lupus is increasing and remains 5-10xthat of white women.
“Though there are clear genetic reasons for the increased prevalence of lupus in African Americans compared to whites as well as for progression of renal disease (ie, apolipoprotein A1), socioeconomic factors are tightly entwined with race, making it difficult to determine causation of the increased morbidity and mortality in African Americans with lupus,” they added. “Differential access to health care and therapies almost certainly plays a role.”
To investigate the racial disparity in lupus outcomes and awareness, Williams and colleagues conducted two focus groups consisting of African American students from six historically Black colleges and universities (HBCUs) in South Carolina. These included Allen University, Benedict College, Claflin University, Morris College, South Carolina State University and Voorhees College. The focus groups included 14 individuals aged 18 to 24 years. Participants were required to have a diagnosis of lupus or a family history of autoimmune disease.
The focus groups were designed using the health belief model, which includes “perceived susceptibility of the disease, knowledge, awareness and other beliefs and lived experiences that can shape health behavior action,” the researchers wrote. Both groups aimed to examine participants’ knowledge, awareness and experiences with lupus. Meetings were held in person, with three participants in the first group joining virtually. Both groups used a semi-structured guide developed specifically for this study.
According to the researchers, five important themes emerged from the discussions. These included the importance of knowledge and awareness regarding lupus, an acknowledgement of the barriers people face when seeking care, attitudes surrounding disease burden among patients with lupus, quality of life concerns, and the importance of elevating advocacy efforts for lupus.
These themes were then used to inform the development of five recommendations that could help improve awareness and support for patients with lupus. These included maintaining positive attitudes, developing a support network, continuing to stress the importance of awareness and advocacy efforts, reevaluating messaging around lupus and making educational resources more accessible.
“We found that participants wanted health education and communication messages that delivered pertinent information about lupus,” Williams and colleagues wrote. “Such messages could be utilized to increase knowledge about lupus, address lupus-related stigma and fatalistic beliefs and counter misinformation about what remedies work for people with lupus.”
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