期刊
CHILD CARE HEALTH AND DEVELOPMENT
卷 38, 期 4, 页码 505-512出版社
WILEY-BLACKWELL
DOI: 10.1111/j.1365-2214.2011.01298.x
关键词
CFS; ME; chronic fatigue syndrome; ME
资金
- Linbury Trust
- NIHR
- RNHRD
- National Institutes of Health Research (NIHR) [CS/08/08/06] Funding Source: National Institutes of Health Research (NIHR)
- National Institute for Health Research [CS/08/08/06] Funding Source: researchfish
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) pound and increase in monthly expenditure (mean =206) pound. 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.
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