The Impact of Fragile X Syndrome on Caregivers: A Systematic Review.
Katerina Poprelka, Konstantina Stavrogianni, Panagiota-Eleni Tsalouchidou and 5 others
A review of 20 studies finds that caregivers of people with Fragile X—mostly mothers—carry heavy emotional, financial and practical loads, driven largely by the person's behavioural challenges.
If you work with a person with FXS, their caregiver is likely under significant stress.
Key findings
1The person's challenging behaviours—irritability, inflexibility, aggression—are the most consistent driver of caregiver psychological strain across the included studies, though one longitudinal study found the opposite direction (higher challenging behaviours linked to lower maternal depression over time).
2Financial impact is substantial: nearly half of families reported increased financial burden, almost 60% experienced reduced or lost employment, and only 21–27% of families in two US studies said FXS did not create a financial burden.
3Caregivers frequently report that healthcare providers lack knowledge about FXS, that access to services is restricted (especially in regional areas), and that the transition from paediatric to adult care is poorly supported, leaving families to navigate it alone.
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What it does not show
No standardised or validated tool exists for measuring caregiver burden specifically in FXS, so the 20 studies used a wide variety of instruments, making direct comparison difficult. Most included studies were cross-sectional, so the review cannot say whether caregiver burden worsens, improves, or stays stable over time. The overwhelming majority of caregivers in the included studies were mothers; fathers and other male caregivers are barely represented, so the findings may not reflect their experiences. Several studies had small samples (as few as 5 participants), limiting the reliability of their findings. Only English-language, peer-reviewed studies from the US, Canada, Europe and Australia were included; caregivers in other regions and cultural contexts are not represented. No meta-analysis was possible because of the heterogeneity in designs, instruments and populations, so the synthesis is narrative and cannot quantify the size of effects.
Declared interests
The authors declare no conflicts of interest and report no funding.
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