Using the internet to cope with chronic fatigue syndrome/ myalgic encephalomyelitis in adolescence: a qualitative study, by Amberly Brigden, Julie Barnett, Roxanne Morin Parslow, Lucy Beasant, Esther Crawley in BMJ Paediatrics Open Vol. 2, #1 [Published: August 23, 2018]

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.

What is already known on this topic?

  • Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is relatively common and disabling, with significant impact on the individual, family and health services.
  • Adolescents are increasingly going online for health purposes. Online resources can be beneficial in  providing social support. However, disadvantages include  misleading or inaccurate medical information.
  • Previous studies suggest that online provision of information about CFS/ME is neither balanced nor consistent with evidence-based practice.

What this study hopes to add?

  • Participants initially focused on official resources (eg, National  Health  Service  sites) for fact-finding.  This  transitioned to patient/peer -led,  which were accessed regularly and over the long-term.
  • Patient-led/peer-led sites supported coping; they encouraged active behavioural management, provided social support, addressed stigmatised aspects of the condition and helped maintain normal adolescent life.
  • Feeling connected to other adolescents with the condition was important, and online forums addressed this need; accessing such forums complemented treatment with specialist CFS/ME services.
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