title: Parents' experiences of living through their child's suffering from and surviving severe meningococcal disease.
abstract: The aim of this study was to describe the lived experience of parents whose child had suffered from and survived severe meningococcal disease. A Heideggerian phenomenological approach was used within the study and data were collected from long focused interviews. In total, eight parents took part in the study; one was a woman recruited as a pilot interview and the other seven were recruited for the main study. The data were analysed using Colaizzi's (1978) method. Eleven themes emerged: (1) complications/side effects; (2) emotional turmoil; (3) child's physical appearance; (4) family disruption; (5) fear of death; (6) loss of parenting role; (7) need for support and understanding; (8) need and value of communication, information and publicity; (9) parental intuition; (10) technological interventions and (11) the impact of care delivery. A review of the literature arising out of the data was undertaken, and a final synthesis statement as perceived by the parents was achieved. Living through this experience is perceived as a major emotional stressor, and although health professionals have some insight into the experience, they are largely naive to the enormity of the situation.
authors.affiliation: Paediatric Intensive Care/High Dependency, Bristol Royal Hospital for Children, United Bristol Healthcare Trust, Upper Maudlin Street, Bristol. caroline.haines@ubht.swest.nhs.uk
authors.forename: Caroline
authors.initials: C
authors.lastname: Haines
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008016:Life Change Events; D008297:Male; D008589:Meningococcal Infections / Q000150:complications / Q000523:psychology* / Q000628:therapy; D010146:Pain / Q000150:complications / Q000523:psychology*; D059408:Pain Management; D010290:Parents / Q000523:psychology*