Parental adaptation in families of young children with cerebral palsy

Abstract

Background For most parents, the birth of their child is a unique and touching moment. However, in some families a child is born with a physical disability. Among the large variety of childhood developmental disabilities, cerebral palsy (CP) is considered to be the major physical disability affecting the functional development of children. CP describes a group of disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. A disability like CP may have serious consequences not only for a child’s functioning but also for the family. At present, the general perception of the family as the basic social unit within which to rear children has led to the development of family-centered approaches. Although professionals are gradually becoming aware of the important role of the family in a child’s life and initiatives to implement concepts of Family Centered Services (FCS) into rehabilitation practice have started, little is known about how parents adapt to the situation when their child is diagnosed with CP. Aim of the Thesis To gain knowledge about the process of adaptation of parents of young children with CP. Methods Parents of young (1.5 yrs) children with cerebral palsy were followed for some years. They were interviewed regarding the resolution of diagnosis of their child and regarding their perceptions of family participation. Conclusion The majority of parents of children with CP have come to terms with this diagnosis by the time their children is 18 months old. More severe forms of CP (i.e. limited motor abilities) appear to confront parents with more difficulty with resolution than milder forms. Parental resolution regarding their child’s diagnosis seem to be predominantly stable. However, most parents with a “resolved” main status show changing patterns of resolution strategies to their child’s diagnosis, suggesting that resolution is an ongoing process. More concrete, among parents of teenage children, resolution seem to be more often apparent from a focus on action to better the lives of their children, whereas parents of younger children are more often focused on constructive thoughts and information seeking. A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older. These results show that having a child with CP may have a considerable impact on the parents and that there are differences in reactions and perceptions among parents. These differences support the fundamental idea that every family is unique. It is essential that professionals who work with families recognize the uniqueness of each family and have a thorough understanding of the organization and operation of the family. Professionals are able to support parents in ways that enable them to fulfil their role as parents. Therefore, counselling skills and knowledge about grief reactions are necessary