Paediatric chronic fatigue syndrome patients' and parents' perceptions of recovery

Matthew Robert Harland, Roxanne Morin Parslow, Nina Anderson, Danielle Byrne, Esther Crawley*

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

3 Citations (Scopus)
54 Downloads (Pure)

Abstract

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 CFS/ME patients and their parents.

Methods
Children with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data was collected through semi structured 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 focussed towards rebuilding lives.
Original languageEnglish
Article numbere000525
Number of pages6
JournalBMJ Paediatrics Open
Volume3
DOIs
Publication statusPublished - 2 Dec 2019

Keywords

  • chronic fatigue syndrome
  • patient perspective
  • qualitative research

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