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Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies

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By R. M. Parslow et al.

Abstract
 
OBJECTIVE: To synthesis the qualitative studies of children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

DESIGN: Systematic review and meta-ethnography.


BACKGROUND: CFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children.

METHODS: Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography.

RESULTS: Ten studies involving 82 children with CFS/ME aged 8-18 were included. Our synthesis describes four third-order constructs within children’s experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children’s ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness.

CONCLUSIONS: Physical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition and diagnosis of childhood CFS/ME, specialist advice on activity management and improved communication between health and education providers to help children cope with their condition.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Source: Parslow RM, Harris S, Broughton J, Alattas A, Crawley E, Haywood K, Shaw A. Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies. BMJ Open. 2017 Jan 13;7(1):e012633. doi: 10.1136/bmjopen-2016-012633.

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2 thoughts on “Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies”

  1. garylynnM says:

    I’ve had chronic fatigue since basal ganglia stroke at age 3. I’m 57 now and just started taking Symmetrel. Need’s to be adjusted to but works great. Did you know that over a lifetime someone like me will biofeedback their hypertension to unmanageable proportions to compensate CF? I need the label “poorly tolerated” to be amended so that when health professionals look up Symmetrel they may condescend to proscribe it.

  2. dfwmom says:

    One of the greatest sources of ongoing stress to a child with CFS, as well as children with other diseases, is our inflexible method of schooling in this country. I had to take my child with CFS out of school, and go into virtual school. I rushed her through as quickly as possible, so that I could get her to a college, where she could easily take a part time curriculum and had to spend less time in class, and could structure her work at times when she felt good.

    As a nation, we should take a hard look at our schools, particularly high schools, and start modelling them more like jr. colleges, with less time in class, and more time working and studying independently, with options for a “part time” class load that is not stigmatized. All those “electives” are nice if you aren’t severely ill, but families need part time options for grade school, so that they have a way to adjust, when something like CFS hits.

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