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,

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.

PMID: 21880054

http://www.ncbi.nlm.nih.gov/pubmed/21880054