These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
Physical and mental health of mothers caring for a child with Rett syndrome
Laurvick CL, Msall ME, Silburn S, Bower C, de Klerk N, Leonard H. Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics. 2006;118(4):e1152-64. Download snapshot, see article abstract.
There is some evidence to suggest that caring for a child with a disability can affect mental and physical health of mothers. The reasons that some mothers cope better with stress than others is not clear.
What we did
In this study, we wanted to find out whether mothers with a child with Rett syndrome who were more physically and mentally healthy had particular characteristics. We also wanted to examine how characteristics of the child (e.g. severity of symptoms) impacted on the mother's wellbeing.
This study used information that was provided by mothers who had completed the 2002 Australian Rett Syndrome follow-up questionnaire. Information from 135 mothers, aged between 21-60 years, was available.
What did we find
Just over three quarters of mothers were married or in a de facto relationship. Nearly two thirds had two or more children, including their daughter with Rett syndrome. Less than half the mothers held post-secondary qualifications and almost a half (47%) were working full time or part time. About 40% of families reported having a gross family income of less than AUD$40,000 and nearly half reported financial difficulties.
Overall, mothers in this study reported poorer physical and mental health compared to the average Australian mother. Mothers who had better physical health had the following characteristics - they were working full-time or part-time, they had a higher level of education and had private health insurance. Similarly those who were working full or part-time also had better mental health as did those in a well adjusted marriage. We found that physical health scores were higher among mothers who had not reported that their child had a breathing problem, one of the common symptoms of Rett syndrome. We also found that mental health was better among mothers whose child had not had a recent fracture.
What does it mean
Generally, social and economic supports were important for the mental and physical health of mothers. Some events such as the occurrence of fractures are very stressful for the family and it was not surprising to find that this event impacted on mother's mental health. Having support systems in place so that mothers can have time for self, family and friends is important for the health of mothers caring for a child with a severe disability like Rett syndrome.
Our results show that it is important to provide ongoing support for maternal caregivers, in addition to support systems in place for the child.
For further reports and findings, see our publications list.