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.