Examining the daily experiences of parents caring for children with rare neurogenetic conditions using over 18,000 ecological momentary assessments

Abstract

Parent caregivers of children with rare neurogenetic conditions experience daily challenges in meeting the needs of their child and family, though studies examining the daily experiences of caregivers are extremely limited. Here, we present pre-intervention ecological momentary assessment data from 495 parent caregivers of children with rare neurogenetic conditions who were enrolled in a clinical trial focused on caregiver well-being. We aimed to both describe typical daily routines across the sample, and to examine how daily experiences, context, and well-being interrelated over time. Across the two-week period, caregivers spent substantial time attending to family needs, often with limited social support and without also engaging in leisure and social activities that could ease burden and support well-being. Autoregressive cross-lagged models indicated a number of dynamic relationships among daily activities, social support, and indicators of well-being. Findings highlight potential targets for intervention to bolster caregiver support and promote healthy family dynamics.