title: Being in an alien world: Danish parents' lived experiences when a newborn or small child is critically ill.
abstract: Parents of critically ill small children have received quite a lot of attention in nursing and allied health literature. However, no documented studies were found from Danish paediatric or neonatal contexts. The aim of the study therefore was to identify Danish parents' lived experiences during a newborn or small child's critical illness. The study was undertaken in a human caring perspective assuming that caring is primary and relational, and that persons are concerned when things matter to them. Thirteen parents were interviewed twice, and data were analysed following Van Manen's phenomenological methodology. The findings revealed that being a parent when a newborn or small child is critically ill resembled being in another world, alien from what they knew and had earlier experienced. The parents wanted to be close to the child, they were seeking for an understanding of what happened, and they felt inexperienced and insecure but at the same time they were attentive and vigilant. The sub-themes that were more prominent were 'a need to be there', 'What is going on?', 'being vigilant', 'being a spectator to your own life', and 'oscillating between hope and hopelessness'. The study implies that the staff needs to help the parents perceive some kind of meaning of what is going on, to instill hope despite not knowing the outcome, and to accept and respect the parents' style of coping with stress and concern for their sick child.
authors.affiliation: Department of Nursing Science, Institute of Public Health, Aarhus University, Aarhus, Denmark. eh@nursingscience.au.dk
authors.forename: Elisabeth O C
authors.initials: EO
authors.lastname: Hall
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D002673:Child, Hospitalized; D002675:Child, Preschool; D016638:Critical Illness / Q000451:nursing / Q000523:psychology*; D003718:Denmark; D004645:Empathy; D005260:Female; D006301:Health Services Needs and Demand; D006379:Helping Behavior; D006785:Hospitals, University; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008960:Models, Psychological; D009013:Morale; D015404:Nursing Methodology Research; D010290:Parents / Q000523:psychology*; D011369:Professional-Patient Relations; D013315:Stress, Psychological / Q000517:prevention & control / Q000523:psychology; D011795:Surveys and Questionnaires