title: Parental satisfaction with follow-up services for children with major anatomical congenital anomalies.
abstract: BACKGROUND
  Since 1999 a multidisciplinary follow-up programme for parents and children with major anatomical congenital anomalies is in place in our hospital, run by a dedicated team. The aim of the present study was to evaluate the services of this team from a parental perspective.
  
  
  METHODS
  Parents completed a questionnaire including open and closed questions about satisfaction with the various professional disciplines involved in the follow-up, statements on usefulness of the follow-up services and suggestions for improvement.
  
  
  RESULTS
  Four hundred and sixty-nine surveys were sent out, of which 71% were returned. Non-responding parents included significantly more parents of non-Dutch origin (P= 0.038) and parents who never responded to invitations for follow-up examinations (P < 0.001). Parental satisfaction differed for the various disciplines. Eighty per cent of the parents were (very) satisfied with the social worker, compared with 92% with nurses. More than half of the parents agreed that the follow-up services give peace of mind. Almost a quarter of parents, however, considered the follow-up services as redundant. The children of these parents had significantly shorter intensive care unit stay (P= 0.02), were older at the time of the questionnaire (P= 0.04), of higher socio-economic status (P= 0.001) and less likely to be of non-Dutch origin (P= 0.008). Sixty-one per cent of the parents had contacted the 24-h helpline. Ninety per cent of the parents were satisfied with the intensive care unit, almost 80% with the general ward.
  
  
  CONCLUSIONS
  Overall, parents were satisfied with the services of the follow-up team. Some parents, however, saw room for improvement related to better communication, recognizability of the team and better planning and organization.
authors.affiliation: Department of Pediatric Surgery, Erasmus MC-Sophia Children's Hospital, PO Box 2060, 3000 CB Rotterdam, The Netherlands. m.vandijk.3@erasmusmc.nl
authors.forename: M
authors.initials: M
authors.lastname: van Dijk
authors.forename: M J
authors.initials: MJ
authors.lastname: Poley
authors.forename: S J
authors.initials: SJ
authors.lastname: Gischler
authors.forename: P
authors.initials: P
authors.lastname: Mazer
authors.forename: H
authors.initials: H
authors.lastname: Ijsselstijn
authors.forename: D
authors.initials: D
authors.lastname: Tibboel
authors.forename: J M
authors.initials: JM
authors.lastname: Latour
mesh_terms: D000359:Aftercare / Q000592:standards*; D002648:Child; D002662:Child Health Services / Q000592:standards*; D000013:Congenital Abnormalities / Q000534:rehabilitation*; D003258:Consumer Behavior; D019538:Health Care Surveys; D006801:Humans; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D011795:Surveys and Questionnaires