Parental satisfaction with follow‐up services for children with major anatomical congenital anomalies

<jats:title>Abstract</jats:title><jats:p><jats:bold>Background </jats:bold> 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.</jats:p><jats:p><jats:bold>Methods </jats:bold> 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.</jats:p><jats:p><jats:bold>Results </jats:bold> 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 (<jats:italic>P</jats:italic>= 0.038) and parents who never responded to invitations for follow‐up examinations (<jats:italic>P</jats:italic> &lt; 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 (<jats:italic>P</jats:italic>= 0.02), were older at the time of the questionnaire (<jats:italic>P</jats:italic>= 0.04), of higher socio‐economic status (<jats:italic>P</jats:italic>= 0.001) and less likely to be of non‐Dutch origin (<jats:italic>P</jats:italic>= 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.</jats:p><jats:p><jats:bold>Conclusion </jats:bold> 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.</jats:p>