Abstract
OBJECTIVES: To capture the subjective experience of close family ascendants of acute bacterial meningitis survivors and to explore how they give meaning to this specific experience. DESIGN: A qualitative study of indepth interviews using interpretative phenomenological analysis. PRIMARY OUTCOME: Main meaning-making processes of participants' experience. SETTINGS: Participants were recruited through two associations of people affected by meningitis and their family ascendants. PARTICIPANTS: Convenience 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. RESULTS: Six 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. CONCLUSIONS: This 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.