Public defense: Runa Kalleson

Background

Cerebral palsy (CP) refers to a group of childhood motor disorders caused by abnormal development or damage to the brain. Children with CP and their families often face some extra challenges in their daily lives, which usually require involvement of extended services. The extent to which parents perceive having control over daily situations with their child and interactions with service providers and service systems is considered important, both for the parents’ own sake and by virtue of families constituting the most influential environment in their child’s life. Empowerment has thus emerged as an area of interest in the context of paediatric rehabilitation.

Another area that is receiving increasing attention is children's participation in play and family activities, which represent an important context for promoting skills and facilitating learning and development, as well as being considered a primary goal of rehabilitation services. To create opportunities for participation among children with CP from an early age, knowledge is needed regarding the activity settings in which young children participate and about how participation can be related to motor limitations. Furthermore, the complex and chronic nature of the CP diagnosis commonly implies long-term multidisciplinary follow-up, which highlights coordination and continuity as important aspects of the services provided to children with CP and their families. Knowledge of what services the families receive is necessary both to expand the understanding of the family’s situation and to gain knowledge about the current service provision.

Aims

The overall aim of this study was to gain knowledge about some key areas in the lives of children with CP and their families: Parental empowerment, children’s participation in real-life activities and services received by the families. The sub-aims of the study included gaining knowledge of the current situation, increasing understanding of relationships with characteristics of the child, the family and the services they receive, and outlining changes or developments that may occur over time.

Methods

The study was designed as a prospective cohort study using data from two Norwegian CP registers: (1) the Cerebral Palsy Follow-up Programme (CPOP), which is now part of the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), and (2) the associated research register Habilitation Trajectories, Intervention and Services for Preschool Children with CP (CPHAB). Fifty-eight families with a child diagnosed with CP aged four years or younger registered between 2012 and 2015 were included.

In the first sub-study, parental empowerment in the contexts of family, service situations and community was explored by analysing repeated measurements with the Family Empowerment Scale (FES). In the second sub-study, the children’s participation in real-life activities was described and analysed based on the Child Engagement in Daily Life questionnaire (CEDL). Services received by the families as mapped by the Habilitation Services questionnaire (HabServ) were explored in the third sub-study. The data were analysed using quantitative methods in all three sub-studies.

Results

Parental empowerment levels were high and stable in the contexts of family and service situations, but lower in the context of influencing the service system on a community level. The relationships between empowerment and characteristics of the child and the family and services received varied depending on the context. The children participated frequently in several activity settings, and they greatly appreciated the participation. Less frequent participation was found among children with moderate and severe motor limitations in some activity settings, such as active physical recreation and outdoor play with children. A statistically significant relationship was found between parental empowerment in family situations and the frequency of child participation.

Most families received services aimed at both the child and the parents, including health, educational, social and coordination services. The number of services received and the reception of a service coordinator varied with different gross motor levels. The longitudinal reports on some services, such as individual service plan and coordinator, indicated that service delivery interruptions were common.

Conclusion

The study’s results provided a generally positive impression of the families’ situations. However, some challenges were also indicated, such as limited parental involvement in the improvement of services, differences in participation based on motor limitations and interruptions and varying use of coordination services. 

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