title: Stress and its covariates in carers of children newly diagnosed with epilepsy
Creators: name: Bethell, Louisa
Publisher: name: University of Liverpool Repository
Year: 2013

description: Introduction: Stress is a complex concept involving a wide range of interplaying factors implicated. Chronic paediatric disease has been strongly associated with increased stress levels in parents and carers. Previous studies of carers of children with established epilepsy have also exhibited this trend when compared to healthy matched controls. The number of carers and the degree of stress experienced has a wide breadth in the existing literature, with a paucity of information relating to the period of initial presentation of seizures and diagnosis. Methods: This is a prospective cohort study examining stress and other covariates associated with a new diagnosis of paediatric epilepsy. Recruitment occurred at first presentation to Alder Hey Children’s Hospital subject to satisfying the selection criteria- primarily a child aged between 0-16 years with a suspected seizure disorder. Cohorts were retrospectively allocated following a diagnosis being made or not. The outcome measure was an 11 item questionnaire battery of which 9 were completed by the primary carer and 2 completed by the child, depending on their age. Each questionnaire was focused specifically on stress or another associated covariate. Data collection occurred at time of presentation and recruitment and a follow up approximately 6 months later, following a diagnosis having been made. Non-parametric analyses ensued to allow for skew in the data and investigate the differences between the 2 cohorts. Statistical tests such as Mann-Whitney U tests and Spearmans rank correlations were used to analyse whether any differences observed were significant or not and to determine the strength of the correlations between stress and the other measured covariates. Results: Of the 196 carers approached 88 were consented into the study. Although follow-up appointments are still occurring at time of writing, to date 39 complete matched data-sets have been collected with a mean time to follow-up of 6.4 months. At time of presentation no significant differences in stress and its covariates between the epilepsy and non-epilepsy cohorts based upon Mann-Whitney U analysis. However, despite this 59% of the carers regardless of their child’s following diagnosis were exhibiting greater than normal levels of stress. At the second data collection point, following diagnosis, significantly higher stress levels were found in the epilepsy cohort p=0.040. This group of carers also demonstrated significantly higher levels of mental health concerns, difficult child behaviour and dysfunctional coping strategies. The degree of association found between stress and the covariates was highly variable with correlation coefficients ranging from r= -0.50 and 0.50 for child perceived quality of life and carer mental health respectively, to r=0.08 and 0.13 for carer’s locus of control and carer needs. Discussion: As with the existing literature, these results suggest that a new diagnosis of paediatric epilepsy is a significant cause of stress to carers. However stress also appears to be associated with the uncertainty and experience of the pathway from first seizure event to attendance at outpatient neurology clinics. Child centred variables such as frequency of seizure events, child quality of life and child behaviour were found to be among the covariates most strongly correlated with carer stress. Future work hopes to further delineate the relationship with stress and its associated factors within the context of a new diagnosis of paediatric epilepsy. This may be achieved by larger sample sizes allowing a valid change over time analysis to be conducted.