Table 1

Research considerations when undertaking virtual observation5

Background and aimThe internet has a potential role in providing peer support to young people with a long-term condition, an essential element of self-care support. Discussion forums are known to provide emotional and social support, and information. Yet there are concerns about ‘inappropriate’ self-management and challenges to the health professionals' role as the ‘expert’. For young people with cystic fibrosis unable to access face-to-face peer support, the internet offers a safe place for them to share experiences and support each other. Aim: To explore how young people and parents use online support in the context of living with cystic fibrosis. Key message: Ensure the rationale for using social media platforms is clear and congruent with the study aim/s.
Research designVirtual observation or netnography is a design informed by the principles of ethnography to explore online social interactions such as a discussion forum. Key message: Ensure the chosen method will gather the appropriate data to answer the research question.
Study setting: participant recruitmentA charity that hosts discussion groups for young people, parents, adults and partners of those with cystic fibrosis was involved from the inception of the study, and facilitated accessing the online groups. The only information about group participants was the name they provide when registering with the group, which could be a pseudonym. Participants were those who posted comments during a 4-month period, chosen at random. Key message: Understand the online organisation/social media network/forum that is being accessed, who are the users and why do they use it, because this will inform the recruitment process and type of data generated.
Ethical considerationsThe discussion forums were accessible by the public; however, permission to observe the discussion activity was gained from the charity. In addition, discussion forum participants were informed of the research through posting study information on the charity web pages.Key message: Become familiar with ethical principles for ‘user-generated’ research. Liaise with the host of the site and obtain their permission to use the data. Inform participants of your presence and provide detailed information about the study, maintain anonymity and confidentiality when analysing data and presenting findings.
Data collection103 discussion threads from the parents’ group and 48 in the young people's group were collected. Key message: Decide on a timeline for data collection. Observe the data in real time and record field notes in addition to downloading the discussion into a text usable format.
Data analysisAn inductive grounded theory approach was used; both researchers analysed all data and agreed on the emergent themes. Descriptive statistics were used to describe the number of discussion threads by topic area. Key message: Data generated are likely to be voluminous, and text based; a qualitative data analysis software package and a structured approach are recommended to help manage the data.
FindingsFive themes emerged and were presented using extracts from the discussion threads to add meaning to the themes. There was some cross-posting between the parent and young people groups; for example, parents asked young people about living with the condition. Parents’ post mainly focused on treatment options and daily management strategies; in contrast, young people’s posts related to how to live a normal life with the condition. The findings demonstrated that online groups provided information and support on managing treatments, emotions, relationships and identity. Key message: Draw on the principles of ensuring rigour in qualitative research, for example, demonstrate trustworthiness by having a clear audit trail and including anonymised extracts from the discussion threads when presenting the findings.
DiscussionThe advice and support offered by participants enabled parents and young people to share experiences, feelings and strategies to help them live with a long-term condition. There was some evidence of the fostering of empowerment with participants becoming more informed about treatment decisions and their impact, and therefore more able to participate in decisions made with health professionals. Key message: Synthesise the findings, put into context by referring to other research and/or theory and practice.