Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family and service characteristics

Abstract

Background Insight into family empowerment is important in order to develop and offer services that support and strengthen parents caring for a child with disability. The aims of this study were to describe empowerment trajectories among parents caring for a young child with cerebral palsy (CP) and to explore associations between parental empowerment and characteristics of the child and family and the services they receive. Methods 58 children (median age at first assessment 28 months, range 12–57) and their parents were included in a longitudinal cohort study based on registry data from follow‐up programmes for children with CP in Norway. Parental empowerment trajectories were described by averaging scores in the three subscales of the Family Empowerment Scale (FES; family, service situations, and community) at enrollment and at semiannual/annual assessments. A linear mixed model was used to explore associations. Results Parental empowerment scores on the FES in family and service situations were high and stable during early childhood, although considerably lower in the community context. In service situations, perceived empowerment was significantly associated with both child, family, and service characteristics, whereas empowerment in family situations was only associated with family characteristics. The service factor having a multidisciplinary support team was positively associated with perceived empowerment in both service situations and in the community. Conclusion Knowledge about parental empowerment in different contexts and associations with characteristics of the child and family and the services they receive can contribute to further reinforcing family empowerment and identifying parents in need of additional support.