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

Autor: Alexiane Baloche, Pierrick Bedouch, Florence Carrouel, Laurent Argaud, Karine Kolev, Guillaume Mortamet, Carole Schwebel, Gérard Mick, Claude Dussart
Jazyk: angličtina
Rok vydání: 2024
Předmět:
Zdroj: BMC Infectious Diseases, Vol 24, Iss 1, Pp 1-9 (2024)
Druh dokumentu: article
ISSN: 1471-2334
DOI: 10.1186/s12879-024-09860-6
Popis: 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).
Databáze: Directory of Open Access Journals
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