Life after meningitis: a qualitative study exploring survivors' experience of living with sequelae

Around twenty percent of meningitis survivors experience after-effects. However, very little research on their psychological impact has been conducted. This report details a small explorative investigation into these psychological impacts.

To explore the impact sequelae have on the meningitis survivors affected.

Thematic analysis of one-hundred individual user's blog posts, self-reporting one or more sequelae after a diagnosis of meningitis.

Blog posters' experiences varied greatly. Common trends in experience were mapped onto three themes. 'Struggling to Adjust to the New Normal' captures blog posters' struggles in returning to their lives post-hospitalization. 'Navigating Possibilities for Positivity' explores how blog posters either reported positive change due to their illness experience or felt a pressure, or inability, to do so. 'The Impact of Knowledge and Support' overarching two sub-themes; 'Lack of Awareness Causing Further Suffering' and 'Validation Leads to Narrative Shift'. These sub-themes contrast differences in experience blog posters reported, with and without knowledge, of the cause of their symptoms and support in dealing with the resulting difficulties.

Consistent and structured after-care would benefit patients experiencing sequelae. Suggestions of a possible format this could take are put forward. In addition, self-regulatory models of illness perception help explain some variations in blog posters experiences, with possible intervention plans based on these models also suggested. However, limitations, including the comparatively small and highly selected sample, mean that further research is necessary to validate the findings and assess their validity, widespread applicability, and financial feasibility.