Supporting and sharing: young people’s engagement in an online support forum in the context of living with cystic fibrosis

Aims: Young people with long-term conditions learning how to care for their condition can benefit from social support from their peers. However, for young people with cystic fibrosis (CF) the opportunity to do this is limited due to segregation policies written to prevent cross-infection. Therefore, online support groups could play a significant role but this is an under-researched area. This paper explores how young people with CF used a condition specific online discussion group to support self-care.

Method: An online ethnographical approach was used to explore the social interaction of 97 young people with CF, posting to a Charity website over a period of four months. Virtual non-participation observation of 48 discussion threads was conducted. Analysis was conducted using a Grounded Theory approach. Both authors conducted the analysis.

Findings: Young people posted queries and engaged in discussion regarding the management of pharmacological and non-pharmacological therapies but in the main discussed concerns and strategies for living with CF. Young people found the group to be a safe space, somewhere they could openly share feelings of isolation, sadness, difference and frustration. Young people emphasised the need to normalise the way they felt and some focused on enhancing peers’ self-esteem, confidence and the development of their own identity particularly in the context of support received from health professionals.

Conclusions: Young people used the discussion groups to find a supportive peer community where they could share personal emotional and social experiences and obtain advice relating to living life with CF. This type of peer support is not replicable through self-care support and management advice delivered by health professionals; therefore online support groups have an important role in supplementing existing professional support.