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.

Mental Wellbeing among Children with Cancer during COVID-19 Pandemic in Indonesia: A Cross-sectional Study

“…In comparison to another study in highly vulnerable group of children with rare diseases, a study by Rihm et al also reported a high psychosocial burden in caregivers and reduced quality of life in children with rare diseases. 51 A similar trend was also observed in both caregivers and children with type 1 diabetes. 52…”

“…In comparison to another study in highly vulnerable group of children with rare diseases, a study by Rihm et al also reported a high psychosocial burden in caregivers and reduced quality of life in children with rare diseases. 51 A similar trend was also observed in both caregivers and children with type 1 diabetes. 52 A study by Kim et al 53 also reported an increased risk of children sleep and behavioral problems related to parents' stress and depression during the pandemic.…”

Impact of COVID‐19 on paediatric chronic intestinal failure: A tertiary care children's hospital experience

“…As children with IF face many challenges at baseline and are shown to have a lower HRQoL than healthy children, the pandemic may add to that burden 4 . However, only a few studies were focusing on chronically ill children and so far, none had addressed the caregivers perceived impact in patients with IF during the pandemic 17–19 . In our study, a high rate of caregivers stated a negative impact on their child's QoL and HRQoL without a significant difference between children with IF, IBD or otherwise HC.…”

Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

“…The geographical distribution of data in the studied material showed a prevalence of research in continental Europe, with 61.1% of the total yield of studies coming from this region. Of these ten documents, five were from England [9,10,14,23,24], three were from Italy [5,7,11], two were from Germany [8,25], and one was from Norway [13]. After Europe, two articles were from North America [12,18], one was from Asia (Hong Kong) [26], one was from the Asia-Pacific region [17] (based on data from Australia, Hong Kong, India, Japan, China, Malaysia, New Zealand, the Philippines, Singapore, and Taiwan), one was from South America (Brazil) [6], and, finally, there was one that took a broad global perspective [19].…”

“…We searched the Google Scholar, PubMed, and Scopus databases using 'COVID-19', 'rare diseases', and 'psychology' as keywords, which yielded 217 articles in Google Scholar, 11 in Scopus, and 7 in PubMed. Many of the selected articles examined the impact of COVID-19 on loneliness [5][6][7][8], social isolation [7,9,10], depressive moods [6][7][8]10], distress [7,8,11,12], and anxiety [7][8][9][10]13] in patients with RDs, the people involved with them, and the psychological burden the disease imposed [8,14]. Loneliness and social isolation, although different, are often connected and are already an important social problem, which the pandemic exacerbated [15], especially for the most fragile people in society.…”