Caregiver Stress and Comorbid Autism Spectrum Disorder and Epilepsy

Background: Nearly one third of children with Autism Spectrum Disorder (ASD) have comorbid epilepsy (EP), with these individuals displaying more severe symptoms in areas of social impairment, challenging behaviours, motor difficulties, and other medical complications. Significant levels of stress have been well documented among caregivers of children with ASD, as well as among families of children with EP. However, to date there is little research investigating the stress that caregivers of children with comorbid ASD and EP experience. Caregivers of children with ASD have reported familial, financial, and mental health issues. Given that children with comorbid ASD and EP present with more severe symptoms across a wide range of functions, it is important to develop a better understanding of the experiences of caregivers of children with ASD and EP. Determining caregiver’s experiences will address a significant gap in research literature and will assist health practitioners in meeting the needs of these families.

Objectives: The project has two primary aims: 1) to examine the quality of life, stress and parenting experiences of caregivers of children with ASD and EP; and 2) to investigate the relationship between caregivers’ quality of life and the clinical profiles of their children/youth with ASD and EP. It is hypothesized that caregivers of children and youth with ASD and EP who have severe developmental delays, behavioural problems, and additional medical complications will report higher levels of stress and poorer quality of life.

Methods: Participants are recruited from the Autism and Epilepsy Clinic, a specialized clinic at the Alberta Children’s Hospital (ACH; Alberta, Canada) that provides seizure management to children and youth with ASD and EP. Since its establishment in 2013, this clinic has served approximately 200 children. Participants must have a diagnosis of ASD and EP. To determine the clinical profiles of the children, chart reviews will be completed through the electronic clinical note used by health practitioners in the Autism and Epilepsy Clinic. This innovative note includes detailed information on the age of seizure onset, seizure type and frequency, medications/treatments, medical diagnoses, cognitive functioning, and other presenting problems. Children will also participate in a comprehensive neuropsychological assessment, with measures of cognitive functioning (WPPSI-IV; WISC-V), executive functioning (NEPSY-II), and behaviour (BASC-3; CARS-2). The Kidscreeen-52, and PSI-4 will be used to assess the children’s and caregivers’ current quality of life and stress. Data will be analyzed using basic descriptive statistics, and will be examined in relation to caregiver measures.

Results: We anticipate over 50 completed assessments by Spring 2018.

Conclusions: The present study will examine the association between the clinical profiles of children and youth with ASD and EP, and their caregivers’ quality of life and stress. It is important that families have a clinical support network that understands their unique situation and can provide the necessary services for these children. Findings from the present study will help to inform the development of caregiver resources and aid health practitioners in improving the outcomes for these children and their caregivers.