Subjective experience of meningitis survivors: a transversal qualitative study using interpretative phenomenological analysis

Abstract

Objectives(1) To capture the subjective experience of meningitis survivors during adolescence and adulthood and (2) To explore how they give meaning to this specific experience.DesignA qualitative study of in-depth interviews using interpretative phenomenological analysis.SettingsParticipants recruited through an association of persons affected by meningitis and their relatives.ParticipantsConvenience sample of nine participants (seven women and two men) between the ages of 18 to 48 years (mean=28.3, SD=11.4), who personally experienced meningitis.ResultsEight major themes and three main meaning-making processes in relation to the participants’ experiences of meningitis were identified: (1) the ability to rely on the testimony of others, (2) the impossibility of meaning-making and (3) the possibility of post-traumatic growth. We detailed here five major themes, which appear critical to answering the objective of the study.ConclusionsThis study provides a unique insight into the first-hand experience of surviving meningitis. Findings highlighted factors characterising the disease experience, the psychological adjustment of meningitis survivors and their meaning-making processes. These findings are important for both research and clinical practice, demonstrating the importance of direct involvement of meningitis survivors in identifying key aspects of care, which include the critical role of relatives, and the importance of investigating the need for training among healthcare providers on how to diagnose meningitis.

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

“…These five themes were all chosen because they were directly in line with our research question (ie, the family experience of meningitis) and they were all spontaneously mentioned by the participants and did not correspond to the pre-established questions. A detailed analysis of the ‘meningitis disease’ (not selected theme), its physical sequelae (partial paralysis, functional disability, etc) and psychological impact (phobia, identity rearrangements, trauma, insecurity, risky behaviours, etc) 18 can be provided on request.…”

“…Interpretative phenomenological analysis (IPA) was chosen to explore the content. For analysis of key elements, see Scanferla et al 18 ES and LF led the analysis following the principles of IPA. 21 In brief, each interview was read by the first author multiple times to gain a holistic sense of participants' accounts, and discourse themes were identified by ES.…”

“…A press conference took place on 18 September 2020 to disseminate the results of this study on the experiences of meningitis survivors. 18 The present study exploring the subjective experience of close family members of children with meningitis corresponds to the second part of the study on the experiences of meningitis survivors. In addition, we plan to organise a second conference for the association where the participants were recruited to disseminate our findings and their clinical implications.…”

“…Not only did we do so in terms of the presence or absence of symptoms but also in terms of emotional reactions, feelings, memories and meaningmaking process in the mid and/or long term. 18 The objectives of the study are to capture the subjective experience of family ascendants confronted with acute bacterial meningitis, to highlight their meaning-making process in this adverse context, and to identify factors that could positively influence and develop the quality of care provided by healthcare professionals.…”

“…Not only did we do so in terms of the presence or absence of symptoms but also in terms of emotional reactions, feelings, memories and meaning-making process in the mid and/or long term. 18 …”