OBJECTIVES: To explore the relationship between the period preceding diagnosis and the way parents of children with cystic fibrosis (CF) experience and handle their child's disease. DESIGN: A retrospective study. SETTING: CF Center "Noordwest Nederland," the Netherlands. PARTICIPANTS: Participants were the parents of children <13 years old with CF who were treated at the CF Center "Noordwest Nederland." The participants were divided into 2 groups according to the duration of prediagnostic period: <3 months (defined as early diagnosis) and >or=3 months (defined as late diagnosis). MAIN OUTCOME MEASURES: Experience of the prediagnostic period, contact with the medical profession, coping, future perspective, and attitudes toward neonatal screening for CF. RESULTS: Parents of 55 children were eligible for study participation; 45 were enrolled. Retrospectively, the period preceding an early diagnosis was less negatively experienced by parents than the period preceding a late diagnosis. Parents of children with an early diagnosis had retrospectively more confidence in the medical profession before confirmation of diagnosis. In general, parents in this study used adaptive coping styles. Duration of prediagnostic period was not significantly related to future perspective. Hopelessness seemed to be mainly determined by a severe course of disease as experienced by the parents. Ninety-eight percent of all parents were in favor of neonatal screening for CF. CONCLUSIONS: A short prediagnostic period is associated with less negative feelings and increased confidence in the medical profession among parents of children with CF. Neonatal screening for CF may be of benefit to parents by removing the stress of a delayed diagnosis.
OBJECTIVES: To explore the relationship between the period preceding diagnosis and the way parents of children with cystic fibrosis (CF) experience and handle their child's disease. DESIGN: A retrospective study. SETTING: CF Center "Noordwest Nederland," the Netherlands. PARTICIPANTS: Participants were the parents of children <13 years old with CF who were treated at the CF Center "Noordwest Nederland." The participants were divided into 2 groups according to the duration of prediagnostic period: <3 months (defined as early diagnosis) and >or=3 months (defined as late diagnosis). MAIN OUTCOME MEASURES: Experience of the prediagnostic period, contact with the medical profession, coping, future perspective, and attitudes toward neonatal screening for CF. RESULTS: Parents of 55 children were eligible for study participation; 45 were enrolled. Retrospectively, the period preceding an early diagnosis was less negatively experienced by parents than the period preceding a late diagnosis. Parents of children with an early diagnosis had retrospectively more confidence in the medical profession before confirmation of diagnosis. In general, parents in this study used adaptive coping styles. Duration of prediagnostic period was not significantly related to future perspective. Hopelessness seemed to be mainly determined by a severe course of disease as experienced by the parents. Ninety-eight percent of all parents were in favor of neonatal screening for CF. CONCLUSIONS: A short prediagnostic period is associated with less negative feelings and increased confidence in the medical profession among parents of children with CF. Neonatal screening for CF may be of benefit to parents by removing the stress of a delayed diagnosis.
Authors: Brenda M Button; Christine Wilson; Ruth Dentice; Narelle S Cox; Anna Middleton; Esta Tannenbaum; Jennifer Bishop; Robyn Cobb; Kate Burton; Michelle Wood; Fiona Moran; Ryan Black; Summar Bowen; Rosemary Day; Julie Depiazzi; Katherine Doiron; Michael Doumit; Tiffany Dwyer; Alison Elliot; Louise Fuller; Kathleen Hall; Matthew Hutchins; Melinda Kerr; Annemarie L Lee; Christina Mans; Lauren O'Connor; Ranjana Steward; Angela Potter; Tshepo Rasekaba; Rebecca Scoones; Ben Tarrant; Nathan Ward; Samantha West; Dianne White; Lisa Wilson; Jamie Wood; Anne E Holland Journal: Respirology Date: 2016-04-18 Impact factor: 6.424