Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study

Abstract

Background: Clinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers’ experiences of the follow-up care. Study sought to explore IMD survivors’ and their family caregivers’ experiences after hospitalization for IMD and to identify unmet needs. Methods: Semi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis. Results: Eight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support. Conclusions: This study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers. Trial registration: Ethics Committee of University of Lyon, France (ref: 2022-06-23-002).