Table 2

Major themes and subthemes

Major themesSubthemes
Meningitis diseaseSymptoms (description, etc). Perception of symptoms and their evolution.
Diagnoses (relevance, accuracy, time, etc).
Description of the disease (technical words, prevalence, etc).
Healthcare services and professionalsExperience of healthcare services and relationships with healthcare providers (eg, communication).
Need for psychological support at the time of diagnosis, during hospital care and in the long term (eg, rehabilitation).
Knowledge/ignoranceAbout the disease (scientific background, technical vocabulary, etc). Need for the patients and their caregivers to explain the disease. Internet and association role (information).
Unpreparedness of health professionals/expertise.
Helplessness of familial caregivers (eg, incomprehension of symptoms and/or lack of good reflexes, feeling of being overwhelmed by an exceptional situation).
Repercussions of the meningitis experience: ‘life afterwards’Physical sequelae (partial paralysis, functional disability, etc). Relating and compensating.
Psychological impact and familial adjustment in the short term (coping with the possibility of death) and long term (physical sequelae, medical care, daily life, school).
Parents coping with the illness (eg, impact on the marital couple, etc).
Impact of meningitis on the life course (financial and professional impact, change of life and professional trajectories, ‘giving up’, etc).
Sick child attitudes/behaviourAt the onset of the illness.
During hospitalisation.
Long-term attitudes (personality): flexibility, adaptation, courage.
Sibling attitudes/behaviourCoping with the illness and its long-term effects (psychological sequelae and adjustments).