In the type of research we do, which typically falls within the psychology and neurology field, qualitative methodology can offer a lot in the analysis of research data. This means we are interested in collecting information directly from research participants or informants, and analysing the word choices people use to describe an experience or perspective on a phenomenon.
There are many types of data collected by qualitative researchers in this field. Some use diaries, others use online surveys. For the two studies on migraine and epilepsy, our team conducted research interviews with study volunteers. Face-to-face interviews took place with the volunteer either in their homes or a public place. Interviews were audio-recorded and later transcribed so that the research team could analyse what volunteers said in greater depth.
During the migraine study, two bachelor's students conducted the research interviews, which were then analysed by a research assistant, supervised by Professor Leone Ridsdale. The findings were then presented to the Ego-Media group, in order to receive feedback and strengthen the findings during this analysis stage.
During the epilepsy study, one post-doctoral researcher (Dr Rebecca Roach) conducted the interviews, which were then analysed by Dr Alison McKinlay. Initial impressions of the themes were also presented to the Ego-Media group for feedback, as well as a group of neurology researchers. The intention of this practice was to incorporate interdisciplinary feedback to help strengthen the analysis.
Qualitative methods: Professor Leone Ridsdale and Dr Alison McKinlay discuss project methodology
We intended to learn about how the online practices of people with migraine or epilepsy transformed their self-presentation. To do this, research questions were developed to learn how people present themselves online, make connections with others with shared experiences, and perhaps change their sense of self as a result.
For both studies, our primary research question was:
How do changes in online self-presentation practices affect participants’ notions of themselves as people with migraine or epilepsy?
Our overall research objectives were to:
- Describe the online practices of people with migraine or epilepsy
- Describe their view of the risks and benefits of using new media
- Describe how their self-presentation impacts their sense of self
- Describe the views of those who manage and monitor forums for self-help groups on this process.
Professor Leone Ridsdale outlines her research questions
Interview topics & probes for people with migraine
|When did you first start to experience migraine?||How did you feel when you first started to experience migraine?|
|Could you tell me what personal research have you done around migraine? (e.g. family/friends, self-help books)||Do you know anyone else in real life who experiences migraine?|
|Could you talk about any social media platforms you have used specifically relating to migraine?||Could you talk about any social media platforms you have used specifically relating to migraine?|
|(E.g. Twitter, Facebook, blogging)||(E.g. Twitter, Facebook, blogging)|
|What were your motivations for you to visit this website/ use this app?|
|Have you ever found information or support for your migraines on social media that you didn’t find elsewhere?||Has being part of the online migraine community impacted on your migraine management?|
|Could you describe how you use social media in the context of your migraine to find out new information and advice?||Do you use the official NHS choices website to gather information about migraine?|
|Could you describe how you use social media in the context of your migraine to share information and advice?||Would you say you primarily seek to find out information or to share it?|
|Have you found communicating online with others who have migraine a supportive experience?||Is the social support online different to offline?|
|Could you describe any benefits of having an online presence?||What can social media offer that other sources of information cannot?|
|Could you describe any drawbacks of having an online presence?||Do you find the information to be accurate and reliable?|
|Do you see social media platforms as a way of gaining expertise in migraine knowledge?||How does this compare to traditional methods of speaking one-to-one in person with a healthcare professional?|
Topics & probes for people with migraine Pearson et al
Interview topics and probes for people with epilepsy
|Diagnosis||• What kind of epilepsy do you have?|
|• When were you diagnosed?|
|General experience of epilepsy offline||• Do you keep a symptoms or medication diary? Reminders? Family member?|
|• Do you talk to people about your epilepsy? Who?|
|• Do you know anyone else with epilepsy? Fictional characters?|
|• Have you ever been to a support group? What was it like? Charity work? Advocacy? Why did you go?|
|General use of the internet and social media||• What sites do you use? Twitter, Facebook, Email, Tumblr, Blogs, Instagram, LinkedIn, Forums, or chat rooms?|
|• How often?|
|• When did you start? Why? Have you stopped using any? Why?|
|• What devices do you use to access these sites or apps?|
|• Do you change the way you present yourself on different sites or apps? Why? Do you try to? Why?|
|Broad experience of epilepsy online||• Do you talk about your epilepsy on these sites? In private messages? Why? Is privacy an issue?|
|• How do you think epilepsy is portrayed in general online? For example, trolling, surgery games, “seizure” on Twitter, Photosensitive-provoking gifs.|
|• Do you think your epilepsy affects the way you use these sites?|
|Epilepsy-specific websites||• How often do you use the Epilepsy Action forum? Why? Is it different from talking offline?|
|• Do you use any other epilepsy forums or websites? Blogs? Why?—Information, friendship, advocacy?|
|• Do you think these experiences have changed the way you think about your epilepsy? Yourself? The online world?|
|• Has it changed the way you interact with doctors? Friends? Other people with epilepsy?|
|• How could these websites be improved?||• How could these websites be improved?|
Topics and questions for semi-structured interviews conducted with people with epilepsy McKinlay et al