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

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 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.

Keywords: COVID-19 pandemic; Distress; Family caregiver; Health-related quality of life; Mental health; Psychosocial care situation; Rare disease; Support offerings.

Fig. 1

Everyday problems experienced by family caregivers of children with RDs. Note N = 136. Items are from the problem list of the Distress Thermometer for Parents (DT-P). Percentages represent the proportion of caregivers that experienced the respective problem in the last week including today (i.e., yes-answers per item)

Fig. 2

Overall and domain-specific psychosocial information needs of family caregivers of children with RDs. Note RD: rare disease. N = 149. Psychosocial information needs were measured by 43 five-point Likert scaled items distributed over the four displayed domains (17;11;7;8 items respectively from top to bottom) with answer options ranging from 1 (no information needed) to 5 (in-depth information needed). Scores were combined to transformed sum scores each ranging from 0 to 100, with higher scores indicating higher information need. Error bars indicate 95% confidence intervals. *SD = 26.1