The Arthriting study, the larger study this paper is from, was done to improve our understanding of the daily experiences of young people (aged 11-19) with juvenile idiopathic arthritis (JIA), the commonest type of arthritis in young people. For the study a website (see figure 1) designed by young people with JIA was developed for young people to blog about their experiences of living with JIA. One of the research team members kept track of the blogs, nicknames were used for privacy and the blogs were ‘closed’ so that bloggers could not view what others wrote. Twenty-one young people and 6 parents blogged over a 2-month period, resulting in a total of 187 blogs, with an average number of 8 blog entries per person.

Fig. 1. Arthriting website logged-in dashboard (dummy demo testing user).

A blog is like an online diary in which bloggers can freely record their opinions and describe experiences. Blogs are under-utilised in social science and health service research, although blogs have been used in other types of research. The paper ‘Blogging as a viable research methodology for young people with arthritis: a qualitative study’ discusses how the young people engaged and used the blogs. The paper specifically considers the usefulness and practicality of blogging as a research methodology for health service research.

Overall, the blogs covered a variety of issues including identity, arthritis, medication and health services (see Fig. 2. for the themes of the blogs). Participation in the study was variable in terms of frequency of blogs and length of the blogs. The young people were in control of what, how much and how often they wrote. However, for some young people knowing what to blog about was difficult. Some responded only to the list of categories the research team had developed in order to act as prompts, whereas others used it as a diary to record their experiences and thoughts.

Despite the website being a closed space, many blogs were giving advice to others, which may be a desire of young people to share their experiences with others:

The advice I would give to any young person that has arthritis would be don’t give up the things you love just because you’ve been diagnosed. if you give up on the active things you love then you will start to give up on other things and start using it as an excuse why not to do things.[Spacecadet, female, age 16]

Some also commented on the therapeutic experience of blogging:

Well today is the last day of my blog and I think that this has been a great opportunity to talk about my feelings about my arthritis and just general things really thank you to everyone who set this up as a really good website.[flower123, female, age 14]

Fig. 2. Themes and topics of young people’s blogs.

Despite seeing these benefits of the method, drawbacks were also observed. Computer literacy is always a potential problem when using the Internet for research: researchers must always consider if the method is suitable for the people they want to reach. Although young people are often familiar with how to use computers, it was clear that some of the young people were not confident or experienced in blogging, and some refused to take part for this reason. Overall, as a method, we believe that blogging allowed young people a space and empowerment to express their own ideas and concerns. However, it may not be the best method to engage a large group of different young people and perhaps needs to be combined with other methods. Nevertheless the Arthriting research team found it useful, and worthy of further investigation.

Publication

Blogging as a viable research methodology for young people with arthritis: a qualitative study.
Prescott J, Gray NJ, Smith FJ, McDonagh JE.
J Med Internet Res. 2015 Mar 5

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