Objectives Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.
Methods Children with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.
Results Twenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.
Conclusion Some parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.
- chronic fatigue syndrome
- qualitative research
- patient perspective
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Contributors EC had the idea for this paper and contributed to writing the paper. MRH and RMP conducted the analyses and wrote the first draft. RMP, NA and DB collected the data, and contributed to the writing of the paper. All authors contributed to the analyses and writing of this paper.
Funding This work was supported by a University of Bristol PhD Scholarship. EC was funded by the National Institute for Health Research (Senior Research Fellowship, SRF-2013-06-013).
Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
Competing interests EC was the medical advisor for the Association for Young People with ME (AYME) until 2017.
Patient consent for publication Not required.
Ethics approval Full ethical approval was obtained from the NRES Committee North West (08/04/2014, ref 14/NW/0170). R&D approval was obtained from the RNHRD (20/06/2014, ref-RBB 427).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article or uploaded as online supplementary information.