Wellbeing of Caregivers of Individuals with Developmental and Epileptic Encephalopathy and Co-occurring Epilepsy and Intellectual Disability

Abstract

Little is known about modifiable factors that contribute to well-being outcomes among caregivers of individuals with developmental and epileptic encephalopathy or co-occurring epilepsy and intellectual disability. However, past research demonstrates that this population is at-risk for increased depression and anxiety as well as lower quality of life (QoL) and family QoL compared to the general population. Using the Double ABCX model to guide analysis, caregivers completed a survey (N = 127) and interview (N = 2) to examine the effects of the adaptive function of the individuals for whom caregivers provide care, self-efficacy, social support, adaptive coping and perceived burden on caregiver well-being outcomes. Four main effect and moderation analyses were performed, where self-efficacy, social support, adaptive coping, and perceived burden moderated the relationship between disability severity of the individual (i.e., adaptive function) and caregiver outcomes (i.e., depression, anxiety, QoL and family QoL). Qualitative data were transcribed and coded to add context to the quantitative analyses. Self-efficacy, adaptive coping skills, perceived burden, and social support did not moderate the relationship between disability severity and most outcomes. However, adaptive coping moderated the relationship between disability severity and family QoL in the unexpected direction, where this relationship became stronger as adaptive coping scores increased. Significant associations were demonstrated in the main effect models. Specifically, social support had a negative association with anxiety and a positive relationship with family QoL. Higher perceived burden was associated with higher anxiety and depression scores. Higher adaptive coping scores were associated with better QoL and family QoL scores. Self-efficacy was positively associated with QoL as well. Though significant associations were not found in the moderation analyses, findings from the main effect models highlight individual contributions of these modifiable predictors on this caregiver population’s wellbeing outcomes. Qualitative findings demonstrated the need for social support, acceptance, and the need for providers to connect caregivers with organizations. Future research would benefit from replication of this study with verified diagnoses and larger sample size as well as exploration of other theoretical models within this population. These findings support the need for brief interventions for this caregiver population to target an increase in social support, self-efficacy, adaptive coping and acceptance interventions to reduce perceived burden to support overall well-being among this caregiver population.