The Financial and Psychological Impacts on Mothers of Children With Chronic Fatigue Syndrome (CFS/ME)

Child Care Health Dev. 2012 Jul;38(4):505-12. doi: 10.1111/j.1365-2214.2011.01298.x. Epub 2011 Sep 1.

Abstract

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Attitude to Health
  • Child
  • Child, Preschool
  • Cost of Illness*
  • England
  • Family Health
  • Fatigue Syndrome, Chronic / economics*
  • Fatigue Syndrome, Chronic / psychology
  • Female
  • Health Expenditures / statistics & numerical data
  • Humans
  • Income / statistics & numerical data
  • Male
  • Mental Disorders / etiology
  • Mothers / psychology*
  • Prospective Studies
  • Psychiatric Status Rating Scales
  • Social Support
  • Stress, Psychological / etiology
  • Young Adult