Munchausen syndrome by proxy is and has been a barrier for parents
with children with ME and CFS. This is a controversial psychiatric
diagnosis of the parent where they are believed to be exaggerating the
illness of someone in their care for their own emotional
gratification. When misdiagnosed, this can lead to the child not
receiving medical services in addition to inappropriate sanctions
regarding the parent. Stigma not only limits appropriate care, but can
naturally lead to anxiety and depression in both care giver and
patient - a burden which then adds to the original burden of disease.
Although the children were assessed for mood disorders there is no
indication regarding whether they were present prior to contracting ME
and CFS, if that is what they have.
According to the study, "Parents described problems with judgemental
blaming attitudes by GPs, paediatricians and child psychiatrists.
They described these attitudes as making them feel abandoned and
disrespected. They specifically described doctors =91closing ranks=92,
blaming their parenting, dismissing symptoms as fabrication and
warning them of the stigma related to the diagnosis of CFS/ME.
Parents felt these beliefs prevented the medical profession
understanding the impact of the condition on the child and family."
Although the study cites other British studies showing that ME and CFS
are relatively common in children, the epidemiology will vary
depending on the inclusiveness of the definition used. (These studies
can be found in the reference section). Fatigue was defined by the
Chalder Scale which has been shown to have a ceiling meaning it does
not accurately measure pathological post exertional malaise for
example. There is no indication regarding the definition used although
pediatric definitions were available during the time span studied.
BMC Health Services Research, 11:308 doi:10.1186/1472-6963-11-308
(open access journal), 11 November 2011.
What stops children with a chronic illness accessing health care: a
mixed methods study in children with Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (CFS/ME)
Carly M Webb(1), Simon M Collin(2), Toity Deave(3), Andrew
Haig-Ferguson(2), Amy Spatz(1) and Esther Crawley(2#)
(1) St George=92s University of London, Cranmer Terrace, London, UK
(2)Centre for Child and Adolescent Health, School of Social &
Community Medicine, University of Bristol, Bristol, UK
(3)Centre for Child and Adolescent Health, University of the West of
England, Bristol, UK.
Abstract (provisional)
Background
Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
is relatively common and disabling with a mean time out of school of
more than one academic year. National Institute for Health and
Clinical Excellence (NICE) guidelines recommend referral to specialist
services immediately if severely affected, within 3 months if
moderately affected and within 6 months if mildly affected. However,
the median time-to-assessment by a specialist service in the UK is 18
months. This study used a mixed-methods approach to examine factors
associated with time taken to access specialist services.
Methods
Time-to-assessment was analysed as a continuous =93survival-time=94
variable in Cox regression models using data from self-completed
assessment forms for children attending a regional specialist CFS/ME
service between January 2006 and December 2009. Semi-structured
interviews about barriers experienced in accessing healthcare for
their child were conducted with nine parents of children aged <17
years (8 individual and one parent couple). Interviews were digitally
recorded and analysed using "thematic analysis".
Results
405 children were assessed between 2006 and 2009 and information on
school attendance was available on 388. Only 1/125 with severe CFS/ME
and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE
recommended timeframe. Increased fatigue was associated with shorter
time to assessment (HR =3D 1.15; 95% CI 1.03, 1.29 per unit increase in
Chalder fatigue score; P=3D0.01). Time-to-assessment was not associated
with disability, mood, age or gender. Parents described difficulties
accessing specialist services because of their own as well as their
GP=92s and Paediatrician=92s lack of knowledge. They experienced negative
attitudes and beliefs towards the child=92s condition when they
consulted GPs, Paediatricians and Child Psychiatrists. Parents
struggled to communicate an invisible illness that their child and not
themselves were experiencing.
Conclusions
GPs, Child Psychiatrists and Paediatricians need more knowledge about
CFS/ME and the appropriate referral pathways to ensure timeliness in
referral to specialist services.
The full study can be found here:
http://www.biomedcentral.com/content/pdf/1472-6963-11-308.pdf
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