Background/Purpose:
Teens with chronic illnesses are faced with challenges to their identity, peer relationships, self-esteem, and developmental milestones, which can have a lasting impact on their psychosocial development; underscoring the need for a holistic approach when intervening with this population. Our lupus support and education group for teens/young adults and parents have been meeting monthly for 12 years at an urban medical center in collaboration with pediatric rheumatologists. Facilitated by social workers and bilingual/bicultural health educators, the group provides peer sharing, guest speakers, and recreational activities to improve and address the understanding and impact lupus has on families, medical adherence, self-image, and peer related concerns. We report on evaluations from our support group participants from 2011-2012, focused on the satisfaction and impact of our psychoeducational programs and special events.
Methods:
There were 26 activities for teens/parents (16 programs, 10 special events). Derived from participants’ expressed needs, programs focused on topics that directly affect teen health such as, “Lupus and Your Kidneys,” “Taking Control of your Lupus”, “ Preparing for Transition,” and “ Depression and Lupus.” Special events included plays, Thanksgiving Dinner, Holiday Party /Talent Show, Prom Night for Teens, and Spa Day for parents. After each program, a 9-item anonymous evaluation was self- administered( with mixed Likert scale and opened ended questions).
Results:
393 participants attended programs (254 teens, 139 parents); 247 completed evaluations. When asked overall satisfaction with the presentation 89% indicated they were “very much” satisfied; 82% both reported the presentations “very much” contributed to their understanding of lupus-related issues, and “ very much” met their expectations; 60% reported that the presentation “very much” helped them to cope with their lupus.
In our annual satisfaction survey, when asked about the impact and satisfaction of special events, themes emphasized the importance of community and sense of family, i.e “this helps bring people closer.” When asked for their favorite special event, respondents shared,“ Holiday Party because everyone meets and it’s like a big holiday dinner,” “Thanksgiving dinner because we were one big family.” When asked what do you find most valuable, respondents shared, “it gives lupus patients a forum in which they can share their unique experiences”; “support in dealing with their chronic illness.”
Conclusion:
These programs address the many psychosocial, educational, and recreational needs of a culturally diverse lupus population. This model allows patients to gain practical knowledge about how to manage their illness while developing trusting relationships with practitioners in less formal settings, helping us learn how lupus impacts the family and how best to intervene to optimize outcomes.
Disclosure:
E. Sandoval,
None;
L. Mendez,
None;
R. Horton,
None;
J. Isgro,
None;
S. Rose,
None.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/hospital-for-special-surgerys-charla-de-lupus-lupus-chat-teenyoung-adult-parent-group-holistic-support-for-lupus-patients-and-their-families/