Abstracts

Rationale: Delivery of Family Centered Care (FCC) has been shown to improve outcomes in various populations of children with chronic illnesses and their families, but has not been reported on for childhood epilepsy. The onset of epilepsy presents families with worries and responsibilities related to this child’s health, in addition to their usual daily family activities. The onset of childhood epilepsy has the potential to affect Family Functioning (FF). This study aims to describe the relationship between FCC and FF and to assess FF over the year post-diagnosis.Methods: Data from the Canada-wide prospective cohort study, Health Related Quality of Life in Children with Epilepsy (HERQULES) were used to examine the relationship between FCC and FF. All children between age 4 and 12 newly diagnosed by one of 52 neurologists, were recruited. Parents were surveyed following diagnosis, at 6, 12 and 24 months later. Perceptions of FCC and FF were obtained using the 20-item Measure of Processes of Care (MPOC) and the Family APGAR, respectively. Linear regressions describe the relationship between MPOC domains and FF, adjusting for family and child characteristics. Repeated measures ANOVA examined FF over time.Results: The sample is 197 mothers of children diagnosed with epilepsy one year earlier: 78% were married; about 60% had a gross annual family income of less than $80k; and 55% of families had at least one parent who completed university. Of the children, 51% were male and had a mean age of 7.5 (sd=2.4) at diagnosis. 56% has partial seizures, and 55% were prescribed one AED. APGAR scores did not significantly differ over time (p=0.76). Mothers’ scores were highest on the MPOC Respectful and Supportive care domain (mean=5.38;sd=1.43) and lowest on Providing General Information (mean=4.06;sd=1.96). The other domain scores: Coordinated and Comprehensive care (mean= 5.23;sd=1.52); Enabling and Partnership (mean=5.13;sd=1.61); and Providing Specific Information (mean=4.30;sd=1.80). While simple bivariate correlations showed no significant relation between FF and MPOC domains, preliminary regression model construction revealed several variables that may be modifying the relationship. Comprehensive regression model building will describe the true relationship and will be presented separately for each MPOC domain.Conclusions: Overall mothers report their children’s care as fairly family centered, perceiving that they are treated with respect as equals and experts in their child’s care, but that their general informational needs are not being met fully. FF did not change over time, suggesting it may be a stable family trait over the first year; this is limited in that the effect of diagnosis cannot be quantified because FF was not measured prior to diagnosis. Interestingly, there may be certain groups in this sample for which the effect FCC has on FF may be different, these will be explored and presented in detail. (Sources of funding: Social Sciences and Humanities Research Council student scholarship to Sandra Magalhaes and Canadian Institutes of Health Research Grant MOP-117493 to Speechey et al)