Familial experience of acute bacterial meningitis in children: a transversal qualitative study using interpretative phenomenological analysis

Abstract

ObjectivesTo capture the subjective experience of close family ascendants of acute bacterial meningitis survivors and to explore how they give meaning to this specific experience.DesignA qualitative study of indepth interviews using interpretative phenomenological analysis.Primary outcomeMain meaning-making processes of participants’ experience.SettingsParticipants were recruited through two associations of people affected by meningitis and their family ascendants.ParticipantsConvenience sampling of 11 women whose children or grandchildren were between 0.2 and 20 years old at the time of their meningitis diagnosis (M=4.06, SD=7.3). On average, 9.39 (SD=5.4) years had passed between the onset of illness and the interview.ResultsSix superordinate themes (meningitis disease; healthcare services and professionals; knowledge/ignorance; repercussions of the meningitis experience: ‘life afterwards’; sick child attitudes/behaviour; and sibling attitudes/behaviour) and two main meaning-making processes in relation to participants’ experience of meningitis were identified: (1) the sick child becoming a ‘hero’: comparison with other children; and (2) engaging action/attitude: finding the ‘positive’ of the traumatic experience and engaging action to improve the care system. These two processes underpin the psychological adjustment to meningitis and its consequences.ConclusionsThis study provides a unique insight into close family members’ first-hand experience with acute bacterial meningitis. Findings highlighted factors characterising the disease experience, the psychological adjustment of meningitis survivors’ families and their meaning-making processes. These findings are important for research and clinical practice, demonstrating the multidimensional impact of the disease on family ascendants, their need for professional psychological support and the importance of direct involvement of parents in identifying key aspects of care.

Epidemiology and Clinical Burden of Meningococcal Disease in France: Scoping Review

“…As scientific literature describes the family burden of IMD [7,10], no observational study describes this aspect of the burden in France. Only one qualitative study assessed the impact of bacterial meningitis on caregivers [70], showing that bacterial involved changes in their professional trajectories and led to serious financial impacts on the family. Such an IMD impact obliges finding a new type of everyday functioning (adjustments concerning material aspects, such as person's living and housing and the practical organization of childcare).…”