Background/Purpose:

Research shows that chronic illnesses such as lupus have a multi-level impact on the entire family; it can be challenging for both patients & caregivers to find support, cope & manage the illness. An evaluation was conducted of a monthly hospital-based psychoeducation program, ongoing since 1994, for teens & young adults with lupus & their loved ones. The program provides a platform for support strategies for coping with lupus. Each 2-hour program includes a professionally-led presentation, hands-on workshop or open discussion on a lupus-related topic.

Methods:

A 46-item survey with Likert scale & open-ended questions was mailed to 290 members. Items included demographics, topic choices, satisfaction, impact & areas for program improvement. Separate analyses on satisfaction & impact were conducted for teens/young adults (Ts/YAs) & parents (Ps).

Results:

53 surveys (18%) were returned. Over half (55%) of the respondents identified as Ts/YAs, 41% Ps & 4% support persons. 86% were female, 63% Latino(a), 26% African American, 7% Asian, and 7% White. 58% attended some college or some high school. 23% reported annual income < $5,000. 92% had health insurance; average # years since diagnosis was 6.

100% of respondents were satisfied with the group overall & the group staff. 98% strongly agree/agree they were satisfied with the topics overall; 96% of respondents strongly agree/agree that the topics presented contributed to their understanding of lupus-related issues. 88% of Ts/YAs strongly agree/agree that the topics helped them cope with lupus.

Satisfaction rated by topic was high overall, but Ps consistently reported higher satisfaction than Ts/YAs. 92% of respondents were satisfied with topic “Caring for the Caregiver” (100% Ps, 86% Ts/YAs); 90% satisfied with “Kidneys and Lupus” (94% Ps, 86% Ts/YAs); 85% satisfied with “Body Image and Lupus” (94% Ps, 77% Ts/YAs); 89% satisfied with “Lupus, Tattoos & Piercings” (100% Ps, 82% Ts/YAs).

We assessed impact for Ts/YAs group in 4 areas: coping, support, knowledge & management of lupus as a result of group participation. 79% strongly agree/agree they were better able to cope with their illness. 97% strongly agree/agree they had a better support system. 89% strongly agree/agree they know more about lupus & treatments. 93% strongly agree/agree they can better manage lupus. For parents, 88% agree they have a better support system & 83% agree they know more about lupus & treatments.

Results demonstrate the key role that the program plays in providing support & education not only to Ts/YAs but also their caregivers. The high levels of satisfaction & agreement reported by parents highlight the benefit of using a family model in support programs. Responses to open-ended questions underscored that parents value “information & sense of family,” “the interaction, support & fellowship,” & “knowledge to know how to treat lupus.”

Conclusion:

Despite limitations due to a small sample size, our results underscore the success of the program & next steps for program enhancement. The evaluation of this family model of support provides lessons to rheumatology health professionals who work with teens/young adults with lupus to help improve overall quality of life for the entire family.

« Back to ACR/ARHP Annual Meeting 2015

ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-charla-de-lupus-lupus-chat-program-an-evaluation-of-a-lupus-support-program-for-teens-young-adults-and-parents/