Spina Bifida Cystica and Family Stress

Abstract

This paper describes a study of the stress imposed on families by the birth of a child with a major malformation of the central nervous system (spina bifida cystica, anencephaly, congenital hydrocephalus without spina bifida). One hundred and twenty families have been studied, the parents being interviewed by a social worker soon after the birth and again at one month, six months, and a year. Some findings and conclusions from the first two years' work are reported. The series contains 97 cases of spina bifida cystica. Of 45 families under observation for a year 22 of the children were known to be surviving. The problems studied were those of telling the parents about the child's malformation, the reactions of the parents and relatives to the event, its effect on marital harmony, the adequacy of medical advice, the numbers of hospital visits, and information on the risk of recurrence in further children. The findings suggest (a) the need for care, skill, and sympathy in telling both parents about the malformation, (b) the advantages of a parents' association, (c) the need for a worker with specialized experience to co-ordinate the provision of social and medical help to the families, (d) special centres to deal with the medical and surgical problems of all the affected infants in an area, and (e) the need for adequate genetic counselling and advice on contraception. © 1966, British Medical Journal Publishing Group. All rights reserved.