Needing a Safe Pair of Hands: Functioning and health-related quality of life in children with congenital hand differences

Abstract

Our hands are extensively used in everyday activities and are the primary means of interaction with our environment. We use our hands for eating, bathing, gesturing and in childhood they are one of our instruments to discover the world. Especially in the developing child, hands are of great importance. When hand function in children is compromised, it may cause problems in participating in activities at home, with friends or at school. A difference in hand function in the developing child may be caused by a hand trauma or a congenital malformation, also called a congenital difference. In this thesis, we will focus on congenital hand differences. Hand function is complex and needs a long developmental period to perfect the sophisticated interaction between the brain, the hands and sensory organs, thereby creating a hand skilled in performing daily activities. Therefore, parents of a new-born child with a diagnosed congenital hand difference have many questions. Their main concern is about the child’s future functioning and well-being. Physicians and therapists working with these children and their parents experience the necessity for sound information about aetiology, treatment options and psychosocial support. This thesis developed out of the recognition that there is a need for evidence-based information on the future functioning and well-being of these children and a need for knowledge on the most important factors that influence the functioning of these children.