Background: Pediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and children can be severely affected, attending little or no school for extended periods.
There are no studies quantifying the financial impact of having a child with CFS/ME and there is little information of the impact on parental mood.
Methods: Forty mothers of children with CFS/ME from a regional specialist CFS/ME service completed inventories to assess their psychological well-being (Hospital Anxiety and Depression Scale, General Health Questionnaire-12), loss of earnings, and increased expenditure. In addition, eight mothers took part in a semi-structured qualitative interview.
Most parents of children with CFS/ME experience loss of monthly income (mean =£247)and increase in monthly expenditure (mean =£206). [In dollars this is $400 + $334 a month, for an average annual cost of $8,400.]
Twenty-eight (72%) mothers were above the cut-off for the General Health Questionnaire-12 compared with 20% in the healthy population (95% CI 55, 85, P < 0.001) suggesting they probably have a mental health problem.
This may be explained by the qualitative interviews where mothers described five areas contributing to poor parental health:
• Lack of understanding from others;
• Marital tension;
• Concern about their child’s distress;
• Concern about the impact on siblings
• And emotional distress causing physical symptoms.
Conclusions: The majority of families of children with CFS/ME experience decreased income and increased expenditure with a marked impact on maternal psychological health. Clinicians need to be aware of this to provide appropriate support to families who care for children with CFS/ME.
Source: Child Care Health and Development, Sep 1, 2011. PMID: 21880054, by Missen A, Hollingworth W, Eaton N, Crawley E.School of Social and Community Medicine, University of Bristol School of Health and Social Care, University of West of England, Bristol, UK.