The needs, concerns and coping of mothers of children with cystic fibrosis.

The questionnaire CICI:PQ for measuring needs, concerns and coping of parents of chronically ill children was mailed to 85 families with children with cystic fibrosis (CF). Some questions about the parents' experiences of the health care system were also included. Fifty-four per cent responded--in all cases but two the mothers. More than half of the mothers wanted help with or opportunities to discuss the state of health and the emotional development of the child and dietary issues. Many of them were concerned about the child's future. Shortage of time was another problem. The coping strategies used when having problems with the child were partly different from those used when problems arose with the partly different from those used when problems arose with the spouse. Most mothers were satisfied with the hospital care and the CF paediatrician. They wanted further support from the physiotherapist and many of them missed a CF nurse. The project illuminated many areas for further investigation.