Perceptions of family participation among parents of children with cerebral palsy followed from infancy to toddler hood

Background. Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'. Purpose. To investigate the perception of family participation among parents of preschool children with CP. Method. Semi-structured interviews were used to describe how parents (n = 53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n = 36) perceived family participation over time (followed from 18 months onwards until 42 months of age). Results. At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test). Conclusions. 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.