Parents of children with Leukodystrophy, Parenting stress is an important issue to family functioning and wellbeing.
It is especially important to this community where parenting stress is found to impact significantly on symptom severity, disability and quality of life.
Research shows that targeting parenting stress in this population can have wide-ranging benefits. However, the research has some significant gaps and we don’t yet know exactly what works and why. For understanding and treatment of parenting stress, it is essential to first establish effective measures to capture it. The most popular measures currently do not have enough evidence to support them.
By filling out this quick 15-20 minute survey you can help us better understand parenting stress in this community, to improve measurement and treatment.
If you can spare the time it would be greatly appreciated.