A Qualitative Analysis of the Information Needs of Parents of Children with Cystic Fibrosis prior to First Admission

• Published in: Journal of pediatric nursing Vol. 34; pp. e29 - e33
• Main Authors: Fixter, Vera, Butler, Catherine, Daniels, Jo, Phillips, Samantha
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.05.2017
• Subjects: Adult; Anti-Bacterial Agents - therapeutic use; Child; Child Welfare; Child, Preschool; Cystic fibrosis; Cystic Fibrosis - diagnosis; Cystic Fibrosis - drug therapy; Decision Making; Female; Hospitalization; Humans; Information Dissemination; Information needs; Infusions, Intravenous; Interviews as Topic; Intravenous antibiotics; Male; Needs Assessment; Nursing; Parent-Child Relations; Parents; Parents - education; Patient Admission; Professional-Family Relations; Qualitative Research; Stress, Psychological - psychology; United Kingdom; Information needs; Cystic fibrosis; Intravenous antibiotics; Parents
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2017.01.007

Hospitalization can be stressful for patients and their families. Pre-hospitalization information is crucial in establishing a good basis for patient satisfaction. In order to develop better preparatory material for parents, this qualitative study explored whether parents of children with cystic fibrosis, admitted to a UK Children's Hospital, felt adequately prepared for their child's admission. Data were collected from twelve parents whose children had been admitted within the last two years for routine intravenous antibiotics. Semi-structured interviews were analyzed using thematic analysis. Four themes emerged from the analysis: (1) preparing for admission, (2) the ward as a challenging environment, (3) changes in the parent-professional relationship and (4) the parental role in medical care. 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 are likely to improve parental satisfaction. Preparatory information prior to hospital admission greatly assists parents in making informed decisions and working as joint advocates in their child's inpatient care. •This study uniquely qualitatively explores the preparatory needs of parents of children with CFS prior to first admission.•The analysis provides an in-depth description of the parents’ ‘journey’ from the clinic to the hospital ward.•The impact of medical interventions, such as the need to isolate patients, are described in detail in the parents’ own words.•Clear preparatory information and open communication between health care professional and parents is stressed.