Child Care Health Dev. 2011 Sep 1. doi: 10.1111/j.1365-2214.2011.01298.x. [Epub ahead of print]
The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME).
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.
Background Paediatric 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. Results Most parents of children with CFS/ME experience loss of monthly income (mean =£247) and increase in monthly expenditure (mean =£206). 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. © 2011 Blackwell Publishing Ltd. PMID: 21880054 [PubMed - as supplied by publisher]