Caring for a child with spina bifida: understanding the child and carer.

ABSTRACT

Spina bifida is a common congenital abnormality, which causes significant physical and psychological morbidity in affected children and which also affects their carers. This small-scale study looked at the health problems of a child with a myelomeningocoele. It also addresses the psychosocial problems that his mother, his main carer, faced and the social networks involved in his care. The evidence supporting various aspects of spina bifida prevention and management is explored. Furthermore, a literature review is included, with regards to physical and psychological issues for child and carer. This study aims to raise awareness of the problems faced by children with myelomeningocoele and their families. In particular, we aim to educate health care professionals on the importance of perceived stress by carers of such children, and suggest ways to reduce psychosocial morbidity.