Causation in cerebral palsy: Parental beliefs and associated emotions

Aim: To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs.Method: We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these.Results: Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events.Interpretation: Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP.

Automated summary

The aim of this study was to understand parents' beliefs about the causes of cerebral palsy (CP) and the emotions related to those beliefs. A survey was conducted on 226 parents of children with CP aged 1 to 18 years. The majority of participants expressed the importance of understanding the causes of CP, but there was also uncertainty about the causes. The most commonly endorsed causal factors were intrapartum hypoxia, brain damage, and preterm birth, and parents often experienced feelings of anger, sadness, guilt, and confusion.