Background/Purpose: Research shows that chronic illnesses such as SLE have multi-level impact on the family; it can be challenging for both patients & caregivers to cope with & manage the illness. An analysis of session evaluations was conducted for a monthly psychoeducation group, ongoing since 2001, for teens & young adults with SLE & their loved ones with a focus on Hispanic/Latino communities. The bilingual groups provide support & education strategies to manage & cope with SLE. Each 2-hour evening program occurs at a hospital site where many patients receive care & includes a professionally-led presentation, workshop or open discussion on a SLE-related topic.

Methods: A 16-item evaluation with Likert scale, multiple choice & open-ended questions was distributed after each of the 7 groups (2015-2016) focused on a SLE-related topic, such as Medications, Nutrition, Research & Doctor-Patient Communication. Items included demographics, overall satisfaction, knowledge, coping & disease management. There were 148 surveys distributed. Separate analyses were conducted for teens/young adults (T/YAs) < age 30 & parents/caregivers (Ps). Responses were also stratified by Hispanic (H) ethnicity. Fisher’s exact tests were used to examine differences.

Results: There were 141 surveys (95%) submitted. Respondents were 50% T/YAs & 73% female. Over half (68%) were Hispanic, 29% African American, 28% some other race, 23% White & 13% Asian. Hispanic ethnicities included 32% Puerto Rican & 13% Dominican. Most (99%) respondents were satisfied overall with the program; 94% agreed that the program increased their understanding of SLE-related issues; 88% agreed that the program helped them cope with SLE; 90% agreed that they could apply what they learned to manage lupus; 95% agreed that the program met their expectations; 98% agreed that the presenter was clear & informative; 96% agreed that they would recommend this program. Ps reported ↑ agreement than T/YAs across 6 relevant Likert questions, with a significant difference in applying what they have learned to manage SLE (95% vs. 84% respectively, p=0.044). Differences in agreement for Hispanics (Hs) vs. Non-Hispanics (NHs) were significant across 6 Likert questions using Fisher’s exact tests. Hs reported ↑ agreement (99%) than NH (82%) that the program increased knowledge of SLE, p=.001. This was similarly found in coping (95% vs. 73%, p=.005), disease management (94% vs. 79%, p=.024), meeting expectations (99% vs. 85%, p=.004), presenter clarity (100% vs. 93%, p=.032) & recommending the program (99% vs. 90%, p=.042). Responses to open-ended questions, such as learning “how to manage my portions,” “how to explain lupus to others” & “how to communicate with doctors,” underscored substantial increases in knowledge and coping strategies.

Conclusion: Despite a limited sample size, our results demonstrate the value of the groups & our success in engaging patients. The significant differences found when stratified by Hispanic ethnicity speak to the positive impact the program has on the target community & indicate a need to further monitor this trend. This evaluation underscores the relevance of the family model of support when serving chronically ill diverse T/YAs with SLE & their caregivers.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/evaluating-the-charla-de-lupus-lupus-chat-programs-teen-young-adult-and-parent-support-group-reaching-the-hispaniclatino-community-through-a-family-model-of-support/