Qualitative study to explore self-management strategies in severe systemic lupus erythematosus.

OBJECTIVES

Self-management in systemic lupus erythematosus (SLE) is an emerging concept aimed at empowering individuals in their disease journey. However, qualitative exploration of self-management strategies in severe SLE is limited. This study aimed to describe self-management strategies used by individuals with severe SLE to inform educational initiatives.

METHODS

This is a descriptive qualitative study involving focus groups of participants with severe SLE (high disease activity status) recruited from the Australian Lupus Registry and Biobank. Data were thematically analysed using inductive and deductive techniques.

RESULTS

Three focus groups were conducted involving 14 participants, with a median age of 39.5 years. Six key themes were identified: emotional and psychological coping, physical activity management, dietary modifications, support systems, personalisation of treatment, and barriers to health care. Emotional and psychological coping strategies were critical for managing SLE uncertainties, including maintaining a positive outlook, accepting the diagnosis, and leveraging social support. Physical activity, although challenging, was essential, with participants advocating for gentle, consistent exercise balanced with rest. Dietary adjustments, such as reducing processed foods and increasing whole foods, were widely adopted for symptom control. Support systems, particularly advocacy groups, reduced isolation and provided practical advice. Notably, engagement with health management tools (eg, symptom trackers and digital applications) was absent, indicating a gap in awareness or accessibility. Limited discussion of other health events, such as infections, surgeries, or vaccinations, highlighted additional areas requiring attention.

CONCLUSIONS

This study provides insights into the self-management strategies of individuals with severe SLE and underscores the need for tailored education and tools to enhance disease management across the lifespan.