Exploring how online information affects adolescents with CFS/ME

• Research type

  Research Study

• Full title

  Exploring the ways in which adolescents with CFS/ME engage with the internet for information and support about their condition, and how these sites effect them: A qualitative study.

• IRAS ID

  170360

• Contact name

  Esther Crawley

• Contact email

  Esther.Crawley@bristol.ac.uk

• Sponsor organisation

  University of Bristol

• Duration of Study in the UK

  1 years, 2 months, 24 days

• Research summary

  Background
  Paediatric CFS/ME is common (Crawley, Emond & Sterne, 2011) and can lead to profound, prolonged illness and disability (Kennedy, Underwood & Belch, 2010).

  “Illness representations are a central concern for health psychologists because patients' lay models direct attitudes, health behaviours and recovery processes” (Wright, Williams, & Partridge, 1999). The health beliefs that young people with CFS/ME hold about their condition are associated with both their physical functioning and quality of life (Gray & Rutter, 2007).

  On-line sites and forums shape illness beliefs (Rainie &Fox, 2000), and there are numerous sites and on-line support groups for CFS/ME (Yu, Gantz & Coldsmith, 2001).

  Little is known about the ways in which adolescents with CFS/ME use the internet for information and support. Nor do we know the impact of these sites on health beliefs, and emotional and behavioural responses to CFS/ME.

  Aims
  We aim to gain the perspective of adolescents with CFS/ME regarding:
  a) what types of sites they are accessing for information and support
  b) how they are engaging with these sites
  c) the impact these sites have on their health beliefs and emotional and behavioural responses to the condition
  d) helpful/ unhelpful aspects of on-line support

  Design
  We will conduct semi-structured interviews with adolescents (aged between 12-17) diagnosed with CFS/ME. Participants will be adolescents with diagnoses of CFS/ME, recruited from the Bath/Bristol CFS/ME specialist service.
  We will recruit participants until we reach saturation, we predict that this will be around 15 participants. The data will be analysed using inductive thematic analysis (Braun & Clarke, 2006).

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  15/NW/0502

• Date of REC Opinion

  11 Jun 2015

• REC opinion

  Favourable Opinion