Health Systemic Process (P2S), Unit Research UR4129, University Claude Bernard Lyon 1, University of Lyon, Lyon, France.
Univ. Grenoble Alpes, CNRS, UMR 5525, VetAgro Sup, Grenoble INP, TIMC, Grenoble, France.
BMC Infect Dis. 2024 Sep 19;24(1):1002. doi: 10.1186/s12879-024-09860-6.
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.
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.
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.
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.
Ethics Committee of University of Lyon, France (ref: 2022-06-23-002).
临床指南建议对生存的侵袭性脑膜炎球菌病 (IMD) 患者进行系统随访，以评估后遗症。然而，对于幸存者和家庭照顾者对随访护理的体验知之甚少。本研究旨在探讨 IMD 幸存者及其家庭照顾者在 IMD 住院后的体验，并确定未满足的需求。
通过医院数据库，对患者和家庭照顾者进行半结构化访谈。对访谈进行录音、转录，并进行主题分析。使用 NVivo 软件进行数据管理和分析。
共访谈了 8 名 IMD 幸存者和 14 名家庭照顾者。从数据中确定了三个主题：(1) IMD 后患者和家庭照顾者对随访的看法以及医疗保健专业人员的角色；(2) 获得护理和支持；(3) 与医疗保健专业人员的关系。尽管大多数人对 IMD 后随访护理感到满意，但仍提出了一些改进医疗保健途径的建议，涉及潜在后遗症和随访护理、协调以及获得心理支持的信息。
本研究证实了需要为 IMD 患者及其家属提供更结构化的随访护理，目前这种护理是有限的，并且侧重于身体恢复。最佳随访应旨在为患者和家庭照顾者提供充足的信息、情感支持和后勤支持。
法国里昂大学伦理委员会（编号：2022-06-23-002）。
