Tragic Experience of Parents with Children Suffering from Spina Bifida

Abstract

This article deals with the tragic experience of parents with young patients suffering from spina bifida. Spina bifida is a congenital malformation of the nervous system causing neurological, urological and orthopaedic defects, as well as possible mental retardation. Since only limited prognoses of the child's mental and physical development can be given at birth, parents are continually confronted with their child's limitations as they manifest themselves in both the first and each successive phase of life. These confrontations usually give rise to feelings of anxiety, helplessness and insecurity, because people come up against their own limits. The experience can be regarded as tragic. With the aid of a measuring instrument for tragic experience devised by SchererRath (2001) we distinguish between three dimensions: a physical, a personal and a religious dimension. We examine to what extent parents of children with spina bifida have tragic experiences and in how far these vary with different neurological and neuropsychological symptoms, and with demographic, worldview-related and ecclesiastic characteristics. Our findings show that among mothers physical tragic experience varies with the severity of their child's spina bifida inasmuch as it concerns the functional lesion level. It also appears that both mothers' and fathers' religious tragic experience varies with worldview-related saliency, church membership and church attendance.