Bilingual groups providing support and education to systemic lupus erythematosus (SLE) patients and their family members — people who live in minority U.S. neighborhoods — considerably help them to manage and cope with the disease, a survey shows.
The findings were recently presented at the recent American College of Rheumatology/Association of Rheumatology Health Professionals (ACR/ARHP) annual meeting, in the presentation, “Evaluating the Charla de Lupus (Lupus Chat)® Program’s Teen, Young Adult and Parent Support Group: Reaching the Hispanic/Latino Community through a Family Model of Support,” a study conducted at Hospital for Special Surgery (HSS).
“Lupus disproportionately affects women of color,” Melissa Flores, Charla program coordinator in the Department of Social Work Programs at HSS, said in a news release. “Our program strives to address health disparities by serving African American and Hispanic/Latino communities through our family model of support and our bilingual/bicultural programming.”
Charla, a free monthly program at HSS, offers monthly two-hour psychoeducation group sessions for teens and young adults (under age 30) with SLE and for their family members, with a focus on Hispanic/Latino communities. Sessions are conducted in English and Spanish.
Each session consists of a presentation by a specialist on a topic of interest, a workshop, or an open discussion, with themes ranging from such issues as doctor-patient communication, medication, nutrition, and ongoing research.
“Lupus is a chronic autoimmune illness that not only affects a person medically, but also mentally and emotionally,” Flores said. “People with lupus may experience debilitating symptoms such as extreme fatigue, joint pain, and skin rashes. Additionally, there are often psychosocial challenges, such as feelings of isolation, adjusting to medications with difficult side effects, and coping with the invisible, unpredictable nature of the illness.”
SLE is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue.
To assess how much the sessions were helping SLE patients and their loved ones, the research team distributed 148, 16-item evaluation surveys with questions on overall satisfaction, coping, knowledge and disease management. The surveys, done 2015 and 2016, were offered in English and Spanish.
A total of 141 surveys were completed and returned (of 148 distributed). Over half of the respondents (68 percent) were Hispanic/Latino, 29 percent were African-American, 28 percent were of other racial minorities, 23 percent were white, and 13 percent were Asian.
Results showed that:
- Almost all respondents (99 percent) said they were overall satisfied with the program
- A great majority (94 percent) agreed the program improved their understanding of SLE-related issues
- 88 percent agreed the program helped them to better cope with the disease
- 90 percent said they could apply what they learned to manage the disease
- 95 percent said the program met their expectations
- 98 percent said the presenter was clear and informative
- 96 percent said they would recommend the program to others
The researchers found that the sessions were especially useful for Hispanic/Latino SLE patients.
“Our results demonstrate the value of the group and our success in engaging patients with lupus. The evaluation also underscores the relevance of the family model of support when serving a diverse group of chronically ill teens and young adults and their caregivers,” Flores said.