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Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study
  1. Amberly Brigden1,
  2. Julie Barnett2,
  3. Roxanne Morin Parslow1,
  4. Lucy Beasant1,
  5. Esther Crawley1
  1. 1 Centre for Child and Adolescent Health, Bristol Medical School, University of Bristol, Bristol, UK
  2. 2 Department of Psychology, University of Bristol, Bristol, UK
  1. Correspondence to Miss Amberly Brigden; amberly.brigden{at}bristol.ac.uk

Abstract

Background Adolescents are increasingly using online resources for health purposes. Previous studies suggest that online provision of information about chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is neither balanced nor consistent with evidence-based practice. However, little is known about how adolescents with CFS/ME use the internet for their condition and whether this is helpful or harmful.

Methods Nine indepth, semistructured, qualitative interviews were conducted with young people (aged 12–17) recruited from a specialist paediatric CFS/ME service. Interviews explored the types of online resources accessed, motivations for doing so and how resource use related to patterns of coping.

Results Around the time of diagnosis, participants focused on gathering facts about CFS/ME and therefore used official resources (eg, National Health Service sites) that were considered reliable. This transitioned to exploring patient-led and peer-led spaces: health forums, Facebook and YouTube. Participants accessed these regularly, over the long term, and valued these sites for the personal stories, emotional content and interactive technology. Patient-led and peer-led sites supported coping, encouraging active behavioural management, providing social support and addressing stigmatised aspects of the condition. CFS/ME put a strain on normal adolescent life, such as identity and friendships. Online resources allowed participants to adapt and maintain a sense of normality.

Conclusions Adolescents who use the internet find online resources helpful in seeking information and social support for their condition. Healthcare services should improve their online resources to meet the needs of younger users, providing evidence-based content in ways that are relevant to adolescents and that can meet the needs for social support, as well as providing information.

  • chronic fatigue syndrome
  • adolescent health

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Footnotes

  • RMP and LB contributed equally.

  • Contributors AB conceptualised the study. AB, EC and JB designed the study. AB collected data and analysed all the data. LB and RMP contributed to data analysis. All authors contributed to the interpretation of the data. AB drafted the article, and all authors reviewed and critically revised it, made important intellectual input and approved the final version.

  • Funding EC is funded by the National Institute for Health Research (Senior Research Fellowship, SRF-2013-06- 013). RMP was funded by a University of Bristol Scholarship.

  • 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 of Young People with ME (AYME), until 2017. EC is an unpaid medical advisor for the Sussex & Kent ME/CFS Society.

  • Patient consent We obtained written consent/ assent from participants.

  • Ethics approval This study obtained ethical approval from the NHS Research Ethics Committee (15/06/2017, 15/NW/0502).

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

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