An exploration of how young people and parents use online support in the context of living with cystic fibrosis

Health Expect. 2016 Apr;19(2):309-21. doi: 10.1111/hex.12352. Epub 2015 Feb 17.


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).

Setting and participants: 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.

Design: 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.

Discussion and 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.

Keywords: adolescent; children; chronic illness; parent; qualitative; support.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Anthropology, Cultural
  • Chronic Disease / psychology*
  • Cystic Fibrosis / psychology*
  • Disease Management
  • Emotions
  • Female
  • Humans
  • Internet*
  • Male
  • Motivation
  • Parents / psychology*
  • Peer Group
  • Self Care
  • Social Support*
  • Surveys and Questionnaires