A qualitative analysis of the information needs of parents of children with Cystic Fibrosis prior to first admission

Background: Hospitalisation can be stressful for patients and their families. Pre-hospitalisation information is crucial in establishing a good basis for patient satisfaction and cooperation. This qualitative study explored whether parents of children with Cystic Fibrosis, admitted to a UK Children’s Hospital, were adequately prepared for their child’s admission. Methods: Data were collected from twelve parents whose children had been admitted within the last two years for routine intravenous antibiotic treatment. Semi-structured interviews were analysed using thematic analysis. Results: Four themes emerged. Parents reported feeling unprepared for their child’s admission; the need to receive information addressing the medical, practical and psychosocial aspects of admission was emphasised. Findings highlighted the adverse effects of inadequate information on the hospital experience. Conclusions: Provision of adequate preparatory information is essential in reducing parental stress, influencing how future experiences are appraised and managed. Effective parent-professional communication and opportunities to participate in care will improve parental satisfaction.