UBC Faculty Research and Publications

The needs of persons with lupus and health care providers : A qualitative study aimed towards the development of the lupus interactive navigator™ Neville, Carolyn; Da Costa, Deborah; Mill, Christopher; Rochon, Murray; Aviña-Zubieta, Juan Antonio; Pineau, Christian A; Eng, Davy; Fortin, Paul R


Objective: Systemic lupus erythematosus is an inflammatory autoimmune disease associated with high morbidity and unacceptable mortality. A major challenge for persons with lupus is coping with their illness and complex care. Our objective was to identify the informationaland resource needs of persons with lupus, rheumatologists and allied health professionals treating lupus. Our findings will be applied towards the development of an innovative webbased technology, the Lupus Interactive Navigator (LINTM), to facilitate and support engagement and self-management for persons with lupus. Methods: Eight focus groups were conducted: 4 groups of persons with lupus (n=29), 3 groups of rheumatologists (n=20), and 1 group of allied health professionals (n=8). The groups were held in British Columbia, Ontario, and Quebec. All sessions were audiorecorded and transcribed verbatim. Qualitative analysis was performed using grounded theory. The transcripts were reviewed independently and coded by the moderator and comoderator using 1) qualitative data analysis software, developed by Provalis Research, Montreal, Canada and 2) manual coding. Results: Four main themes emerged: 1) specific information and resource needs; 2) barriers to engagement in health care; 3) facilitators of engagement in health care; and 4) tools identified as helpful for the self-management of lupus. Conclusion: These findings will help guide the scope of LINTM with relevant information topics and specific tools that will be most helpful to the diverse needs of persons with lupus and their health care providers.

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