Trusting in the online ‘community’: an interview study exploring internet use in young people with chronic pain

Abstract

Background: chronic pain in young people is prevalent in the UK. Young people are digital natives, yet there has not been any online intervention developed in a UK context to help them manage chronic pain. Key to understanding the context in which young people engage with online interventions is better understanding their internet use for chronic pain management. The overarching aim of this study was to explore young peoples’ experiences of searching for information about chronic pain using the internet. This included experiences of using search engines (e.g., Google), health information websites (e.g., the NHS website), and social media (e.g., Facebook, Instagram).

Methods: semi-structured interviews were conducted with young people aged 16 to-24-years-old (n = 24), online, via Microsoft Teams. The study was advertised online and via patient partner charities. Interview data was analysed using reflexive thematic analysis.

Results: participants presented with a variety of chronic pain conditions, including joint hypermobility syndrome (n = 6), chronic headache and/or migraine (n = 4), and fibromyalgia (n = 3). Four themes were generated: ‘Trustworthy information, or experiences?’, ‘Diagnostic labels in a digital world’, ‘The online chronic pain community’, and ‘A mind and body approach to self-management’. Young people trust advice from others in their online community, and having a diagnostic label helps them find relevant pain management strategies and support networks online.

Conclusions: this study is the first qualitative exploration of internet use in UK-based young people with chronic pain. Findings highlight the importance of considering internet use when developing new online interventions for young people with pain and that internet use, particularly social media use, is an important psychosocial consideration in pain management. Young people should be encouraged to verify practical pain management techniques found online with their doctor and be empowered in the safe use of appropriate psychology-based self-management resources.

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Identifiers

ORCID for Anna Hurley-Wallace: orcid.org/0000-0001-8790-1247

ORCID for Sarah Kirby: orcid.org/0000-0003-1759-1356

ORCID for Felicity Bishop: orcid.org/0000-0002-8737-6662

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