Qualitative analysis of online information sharing by people and carers of people with a terminal, life-threatening or chronic condition

What is the research about?

Researchers have started to explore how people use web forums and social media for their health.  However, we know very little about the processes of sharing of information and experiences that take place in online communities set up for people with specific illnesses. In particular, there has been relatively little research on the role of trust and empathy in mediating this sharing. Therefore, this project will investigate how people who have been diagnosed with a terminal, life-threatening or chronic illness, and their carers, share information and experiences in online discussion forums and personal blogs.

We hope that the findings will provide insights into how trust and empathy can be facilitated in online environments, whilst they will also tell us what might contribute to under-sharing and loss of trust between individuals interacting in these spaces. What we learn from the project will be of interest to charities and health organisations that want to explore ways of using digital environments to deliver and/or enhance their support services.

How is the research being carried out?

We will be using two methods to collect information about online sharing:

  1. An extensive in-depth, qualitative analysis of information posted online by people diagnosed with (or caring for someone with):
    • A life-threatening condition, e.g., breast cancer, HIV/AIDS
    • A terminal illness e.g. terminal cancer, advanced Motor Neurone Disease (MND)
    • A chronic condition, e.g., diabetes, myalgic encephalomyelitis (ME)

The research will focus on sharing that takes place in two online contexts – forums and blogs.  We will work with charitable organisations to access forum data and to undertake our analyses of this information sensitively.

  1. Approximately 30 in-depth interviews with individuals in the following groups:
  • People with an illness condition who use online forums to share information about their experiences
  • Carers of someone with an illness condition who use online forums
  • People who keep a personal blog to share their illness/ caring experiences
  • Forum moderators who oversee the day-to-day running of online support forums

We will use qualitative data analysis methods which aim to generate themes that reflect findings that are common across a dataset, whilst also paying attention to the individual (case-based) experiences present in the data.

 

Contact us:

 

Prof. Peter Bath
Dr. Julie Ellis