The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: Results of a cross-sectional online survey

Abstract

Abstract Background The COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highly vulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregivers deserves more attention, both in research and practice. The current study explores the distress level of caregivers of children with RDs, their psychosocial information needs, and their children’s health-related quality of life (HRQoL) in times of the COVID-19 pandemic. Methods Data from a cross-sectional online survey conducted within the German CARE-FAM-NET project (children affected by rare disease and their families - network) between March and August 2020 were examined. The study sample included 149 family caregivers, mostly mothers (83.2%) of collectively 167 children with predominantly secured (89.8%) RDs. The survey assessed demographic and disease-related characteristics, caregiver distress and everyday problems (Distress Thermometer for Parents; scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and children’s HRQoL (DISABKIDS-12-p; scale 0–100). Using descriptive statistics, we analyzed the psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysis to investigate interrelations. Results Caregivers reported a wide range of psychosocial information needs. Distress levels were high (M = 6.84, SD = 2.43) and 89.6% of caregivers reported clinical distress (≥ 4). Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were frequent. In about half of the children (49.5%), caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to norm data of children with severe clinical conditions. Caregiver distress correlated positively with psychosocial information needs (r = .40) and negatively with the children’s HRQoL (r = − .46). Conclusions This study indicates a high psychosocial burden on familial caregivers of children with RD during the early Covid-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial information needs, and reduced HRQoL in their diseased children. The findings highlight the ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.