0913 EXPLORING SLEEP DISTURBANCE AMONG FAMILY CAREGIVERS OF CHILDREN WITH MEDICAL COMPLEXITY

Abstract

Introduction: Family caregivers of children with complex care needs that depend on medical technology (e.g. home ventilation) are relied upon to provide skillful, vigilant homecare 24-hours/day. This responsibility has been linked to chronic sleep disturbance, placing family caregivers at risk of poor health outcomes. To inform testing of a sleep promoting intervention, the following questions have guided this research: What factors influence sleep among family caregivers? How do family caregivers appraise the utility of sleep-promoting interventions? To what degree do family caregivers perceive sleep and related health outcomes as problematic? Methods: A multi-site cross-sectional observational design using mixed data sources is underway. Participants include family caregivers with a child dependent on medical technology at night, > 3 months homecare experience and no diagnosed sleep disorders. Interviews have been completed for qualitative content analysis. Quantitative measures administered include: Q- sort using images/text depicting sleep-promoting interventions; Scale of the Problem to measure participant's appraisal of their sleep/health on a unipolar Likert scale ranging from 0 to 4. Results: Nine participants have completed study procedures with further sample diversification planned. Emerging qualitative themes include: 1) caregiver (vigilance/worries, mood/emotions, sleep habits, parenting preferences), 2) child (age/development, equipment use, sleep quality, care needs), 3) family (financial/household stressors, other child-care, employment demands), 4) environment (lights/ noises, personal technologies, housing, sleep location); and, 5) homecare (presence of night nursing, provider competence, family-centred service, resource constraints). To date, participants rank mindfulness/ yoga (7/9), brief daily-exercise (6/9) and enhanced use of respite (6/9) their 'top choices' among evidence-based interventions. Moreover, family caregivers appraise their sleep quality (3.2/4), daily stress (3.2/4), sleep quantity (3.0/4) and fatigue (3.0/4) to be problematic. Conclusion: Findings suggest multiple factors contribute to poor quality and inadequate quantity of sleep among family caregivers when a child is medically complex. Family caregivers assign value to addressing sleep problems and support testing of evidence-based sleep promoting interventions with demonstrated effectiveness in other caregiver (older-adult) populations.