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Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients: A mixed-methods study.

Authors
  • Velleman, Sophie1
  • Collin, Simon M2
  • Beasant, Lucy2
  • Crawley, Esther2
  • 1 Paediatric CFS/ME Service, Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, UK [email protected]
  • 2 Centre for Child and Adolescent Health, University of Bristol, UK.
Type
Published Article
Journal
Clinical child psychology and psychiatry
Publication Date
October 2016
Volume
21
Issue
4
Pages
618–633
Identifiers
PMID: 26395764
Source
Medline
Keywords
License
Unknown

Abstract

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a disabling condition known to have a negative impact on all aspects of a child's life. However, little is understood about the impact of CFS/ME on siblings. A total of 34 siblings completed questionnaires measuring depression (Hospital Anxiety and Depression Scale (HADS)), anxiety (HADS and Spence Children's Anxiety Scale (SCAS)) and European Quality-of-life-Youth (EQ-5D-Y). These scores were compared with scores from normative samples. Siblings had higher levels of anxiety on the SCAS than adolescents of the same age recruited from a normative sample; however, depression and quality-of-life were similar. Interviews were undertaken with nine siblings of children with CFS/ME who returned questionnaires. Interview data were analysed using a framework approach to thematic analysis. Siblings identified restrictions on family life, 'not knowing' and lack of communication as negative impacts on their family, and change of role/focus, emotional reactions and social stigma as negative impacts on themselves. They also described positive communication, social support and extra activities as protective factors. Paediatric services should be aware of the impact of CFS/ME on the siblings of children with CFS/ME, understand the importance of assessing paediatric CFS/ME patients within the context of their family and consider providing information for siblings about CFS/ME.

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