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

Runa Kalleson,Sigrid Østensjø,Reidun Jahnsen

doi:10.1111/cch.12716

Abstract

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. 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 programs 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 semi-annual/annual assessments. A linear mixed model was used to explore associations. Parental empowerment scores on the FES in family and service situations were high and stable during early childhood, while 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. 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.

Highlights

Raising a child with a disability like cerebral palsy (CP) requires high levels of knowledge and access to resources, information, and services
There was a significant difference between participating and non‐participating children with respect to CP subtypes and Gross Motor Function Classification System (GMFCS) levels, with a greater proportion of children with spastic bilateral CP and children at GMFCS Levels III and IV participating in the study
Parental empowerment ratings on the Family Empowerment Scale (FES) in family and service situations were high and stable during early childhood, whereas considerably lower in the community context. These results indicate that most parents of young children with CP in Norway feel competent and empowered when it comes to issues related to their family and their child's services but less so when dealing with service systems

Summary

Introduction

Raising a child with a disability like cerebral palsy (CP) requires high levels of knowledge and access to resources, information, and services. Facilitating parental empowerment represents a major component of family‐centred interventions with the intent to promote child development and wellbeing (Dunst, Trivette, & Hamby, 2007). Empowerment is described both as a multidimensional process (gaining greater control and mastery over life) and an outcome (holding power; Staples, 1990), reflected on different levels: personal (personal power and self‐efficacy), interpersonal (influencing others), and political (social action or social change; Gutiérrez & Ortega, 1991). 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

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