title: An exploration of how young people and parents use online support in the context of living with cystic fibrosis.
abstract: BACKGROUND
  There is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched.
  
  
  OBJECTIVE
  To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF).
  
  
  METHODS
  Online forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study.
  
  
  METHODS
  An online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads).
  
  
  RESULTS
  The online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to 'fit' CF into their everyday lives.
  
  
  CONCLUSIONS
  Online support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with health-care professionals.
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Kirk
authors.affiliation: School of Healthcare, University of Leeds, Leeds, UK.
authors.forename: Linda
authors.initials: L
authors.lastname: Milnes
mesh_terms: D000293:Adolescent; D000884:Anthropology, Cultural; D002908:Chronic Disease / Q000523:psychology*; D003550:Cystic Fibrosis / Q000523:psychology*; D019468:Disease Management; D004644:Emotions; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D009042:Motivation; D010290:Parents / Q000523:psychology*; D010379:Peer Group; D012648:Self Care; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: adolescent; children; chronic illness; parent; qualitative; support