Chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) in children aged 5 to 11 Years: A qualitative study

Research output: Contribution to journalArticle (Academic Journal)

Abstract

Background: Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5-11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families.

Methods: Children with CFS/ME (5-11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically.

Results: Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5-11-years). Theme1: CFS/ME in younger children is complex and disabling. Theme2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage. Theme3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child. Parents felt unsupported in their caring role.

Conclusions:
Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.
Original languageEnglish
JournalClinical Child Psychology and Psychiatry
Publication statusAccepted/In press - 11 Sep 2020

Keywords

  • CFS/ME
  • myalgic encephalomyelitis
  • chronic fatigue syndrome
  • paediatrics
  • qualitative research methods
  • intervention development

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