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.