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Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies
  1. Roxanne M Parslow1,
  2. Sarah Harris2,
  3. Jessica Broughton2,
  4. Adla Alattas1,
  5. Esther Crawley1,
  6. Kirstie Haywood3,
  7. Alison Shaw4
  1. 1Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK
  2. 2Department of Psychology, University of Bath, Bath, UK
  3. 3Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick, Health Sciences, Coventry, UK
  4. 4Centre for Primary Care Research, School of Social & Community Medicine, University of Bristol, Bristol, UK
  1. Correspondence to Roxanne M Parslow; roxanne.parslow{at}bristol.ac.uk

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Methods Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible.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.

  • Chronic Fatigue Syndrome
  • Myalgic Encephalomyelitis
  • Children
  • Adolescents
  • Qualitative synthesis

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors RP developed the search strategy with guidance from EC, KH and AS. RP, SH and JB screened abstracts and full texts. RP and AA extracted the data. RP, EC, KH and AS contributed to the synthesis. All authors contributed to the interpretation of results and to drafting this paper. All authors have read and approved the final version of the manuscript.

  • Funding This work was supported by a University of Bristol PhD Scholarship.

  • Competing interests EC is a medical advisor for the Association for Young people with ME (AYME) and the Sussex and Kent ME/CFS society.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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