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

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 caregiver-reported health-related quality of life (HRQoL)
of children with RDs 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 diseases and their families-network) between March and August 2020 were examined. The study sample
included 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographic
and disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents;
scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of the
children with RDs (DISABKIDS Chronic Generic Measure, short-form; 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:
The distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4).
Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were
frequent. Caregivers reported a wide range of psychosocial information needs. 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 parent-reported
norm data of children with severe clinical conditions. Distress correlated positively with psychosocial information
needs (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).

Conclusions:
This study indicates a high psychosocial burden on family caregivers of children with RDs during the
early COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial
information needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight the
ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.