Background/Purpose: Systemic lupus erythematosus is the most common and most severe form of lupus involving multiple body systems including the blood, muscles, joints, organs and the nervous system. The Lupus Foundation of America (2012) estimates around 5 million people worldwide have a form of lupus. There is no cure for lupus, so treatment consists of minimizing and managing symptoms. The 5-A model has been shown to be an effective model to facilitate behavior change in those living with chronic disease (Caroll et al., 2012, Glasgow, Emont, Miller, 2006). The purpose of the study was to capture participants voice regarding the value of community based self-management programing based on the 5-A model.

Methods: This retrospective qualitative study was designed to analyze the statements of 48 participants in self-management programming designed based on the 5-A Behavior Change Model. Thirty-eight masters of occupational therapy students (2011-2015) used the 5-A model to design and implement six-week self-management programs as part of their master’s project coursework. The students reviewed the literature, designed, and implemented five programs covering the topics of fatigue management, physical activity, stress and pain management. The programs were designed in collaboration with the Lupus Foundation of Minnesota. They were offered free of charge in face to face and online formats. Participants response was assessed through post program assessment of objectives and thematic analysis of participants statements during and following the program.

Results: Forty eight members of the Lupus Foundation of Minnesota participated in the study and were included in the analysis. The majority of participants had SLE ( n=42), were female (n=43) and white (n=38). All participants used a four-point scale to indicate if unit objectives were met (1=strongly disagree, 2=disagree, 3=agree and 4=strongly Agree). The average scores per unit ranged from an average of 3.4 to 4 indicating the objectives were met for all programs. Qualitative thematic analysis (Braun & Clark, 2006) of recorded participant statements showed the participants valued the programming and felt it was effective. Thematic analysis uncovered four themes: Learning through understanding, changing routines, adapting life, and gratitude and appreciation.

Conclusion: Qualitative evidence supports use of the 5-A Behavior Change Model as an effective model for self-management education in online and face to face format for those with lupus. Post-program quantitative measures showed those who participated the programming felt the objectives were met. Qualitative analysis revealed evidence-based education increased patients understanding of the rationale for recommendations and promoted behavior change in routines and adaptations that improved quality of life. Those that participated in the program were grateful and appreciative of programming designed specifically for them stating “finally something for us.”

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/something-for-us-client-perspectives-on-lupus-self-management-programming-using-the-5-a-behavior-change-model/