Course of behaviour problems of children with cerebral palsy: the role of parental stress and support.

BACKGROUND: Cerebral palsy (CP) is a well-recognized neurodevelopmental condition persisting through the lifespan. In many individuals with CP, motor disorders are accompanied by other disturbances, including emotional and behavioural problems. Little is known on the course of such problems, also in relation to possible exacerbating or mitigating factors. Aims of this study were to test whether parental stress and support, apart from the severity of CP of the child, played a significant role in the course of behaviour problems. METHOD: The participants aged 9, 11 and 13 were assessed (baseline) and followed up after 1, 2 and 3 years. Situational and relational sources of support and stress for the primary caregiver were rated with a questionnaire: (CBCL), behaviour problems with the Child Behaviour Checklist. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS: Behaviour problems of children with CP started significantly higher than in the general population, but diminished over the 3-year period. Older children showed less problems overall, and girls showed less externalizing problems than boys. Children with the most severe CP had more externalizing problems; effects on internalizing problems were not significant. Across time, an excess of stress vs. support related to parents' socio-economic and living situation and to parents' social relationships was positively related to total behaviour problems, internalizing and externalizing behaviours of children. CONCLUSIONS: Levels of behaviour problems are elevated but diminish during adolescence for children with CP. Severity of CP plays a role as well as the family context in terms of the stress and support that caregivers experience.

Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability.

BACKGROUND: For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. AIMS: of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution. METHOD: Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS: Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking. CONCLUSIONS: Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.