Ouders van kinderen met ME/CVS hebben volgens een studie van Crawley
maandelijks £ 206 hogere uitgaven en £ 247 minder inkomen.
Jaarlijks is dit financieel nadeel circa £ 5.400 (ca. 80% heeft een inkomen < £ 35.000).
Ook heeft ME/CVS van het kind grote psychische gevolgen voor de moeder.
The financial and psychological impacts
on mothers of children with chronic fatigue syndrome (CFS/ME).
Child Care Health Dev. 2011 Sep 1. doi: 10.1111/j.1365-2214.2011.01298.x.
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,
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.
Forty mothers of children with CFS/ME from a regional specialist CFS/ME service
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
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;
concern about their child's distress;
concern about the impact on siblings and
causing physical symptoms.
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.