Unmet Psychosocial Needs of Caregivers Impacted HRQOL for Children With Rare Diseases During the Pandemic

At the start of the COVID-19 pandemic, high levels of distress, overwhelm with daily problems, and unmet psychosocial information needs decreased caregiver-reported health-related quality of life in children with rare diseases.

Early in the COVID-19 pandemic, caregivers of children with rare diseases (RDs) experienced high levels of distress and had unmet psychosocial information needs, a survey conducted in Germany found. The results, published in the Orphanet Journal of Rare Diseases, also showed diminished health-related quality of life (HRQOL) for children with RDs.

Researchers evaluated demographic and disease-related characteristics, distress and daily problems of caregivers, psychosocial information needs, and the reported HRQOL of children with RDs to characterize the overall psychosocial experience of caregivers.

The cross-sectional online survey was conducted within the German CARE-FAM-NET project (children affected by rare diseases and their families-network), and the analysis included a total of 149 family caregivers—most of whom were mothers (83.2%)—of 167 children with RDs. Data collected between March and August 2020 were included in the analysis.

The results showed that caregiver distress levels were elevated, with 89.6% of caregivers reporting clinical distress, defined as a score of 4 or higher out of 10 on the Distress Thermometer for Parents scale. The mean clinical distress score among respondents was 6.84. Sleep problems, fatigue, worry, and other daily stressors were common among caregivers, who also expressed a need for more psychosocial information.

Almost half of the children had low caregiver-reported HRQOL, but the mean HRQOL (58.7 out of 100 on the DISABKIDS Chronic Generic Measure) was comparable to what parents of children with serious clinical conditions typically report, the authors noted. Distress was positively correlated with needs for psychosocial information (r = .40), and caregiver-reported HRQOL of children was negatively correlated with caregiver distress (r = –.46).

The researchers noted that none of these findings came as a shock, considering caregivers of children with RDs were already strained prior to the COVID-19 pandemic, which seemed to exacerbate those strains.

To decrease suffering and improve quality of life for children with RDs and their caregivers, the authors emphasized a need for more psychosocial support resources, intervention options, and pre-intervention options are needed. Websites on psychosocial needs may be particularly useful, given that 97.1% of participants indicated that they did not know of any helpful web pages dedicated to psychosocial topics.

No previous study has investigated a direct relationship between levels of distress and psychosocial information needs in family caregivers of children with RDs, the authors noted. The findings highlighting this relationship within the study are points to be addressed in further research and policies, they added.

Some limitations were noted, such as a small sample size, mothers as the predominant caregivers, and survey respondents predominantly including people with higher education.

“Health care professionals need to be alert to the high distress among caregivers of children with RDs throughout and after the COVID-19 pandemic,” the authors concluded. “For family-centered psychosocial support services to be integrated into standard care, future studies are warranted to investigate the possible effect of providing psychosocial support and information on distress levels in caregivers of children with RDs.”


Rihm L, Dreier M, Rezvani F, Wiegand-Grefe S, Dirmaier J. The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey. Orphanet J Rare Dis. Published online December 26, 2022. doi:10.1186/s13023-022-02595-0

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