In the epilepsy study, 14 people were interviewed:
- 9 people said they used online media to “silently” learn from others with epilepsy by reading user posts on social networking sites and epilepsy-related forums.
- 7 people described feeling cautious about disclosing their epilepsy to others online. This could be because of health-related stigma.
- 6 people said they presented themselves in the same manner irrespective of whether they were posting on open social media sites or private or epilepsy-related fora. They described their identity as being presented in the same way both online and offline.
(see Views of People With Epilepsy About Web-Based Self-Presentation: A Qualitative Study, Alison Ruth McKinlay, PhD; Leone Lorna Ridsdale, MD for more information)
In the migraine study, 20 people were interviewed:
- 19 people said they had used Facebook for information to help manage their migraines and for reassurance.
- 10 people described using closed (more private) Facebook groups as a kind of virtual support group for their migraine.
- 8 people said they adopted different personas depending on the web platform they were using.
(see Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine for more information)
The findings highlighted benefits from using online media, where social networking sites were seen as sources of social support and information sharing. Though most described benefits, people also had concerns about confidentiality and privacy that influenced the content they shared online.
Accurate and up-to-date information - Our findings reinforce the importance of accurate and up-to-date healthcare information being available online. Many user-group websites and charities are monitored so that misinformation is removed.
Online information used to supplement information received after a diagnosis - Information gathered online was particularly reassuring for those who experienced less "typical" symptoms.
Advice read online discussed with the doctor - Some people used the information they read online to aid discussions with the doctor, usually around new types of medications or treatments.
Connecting to other people with similar lived experience was invaluable
Venting - People with invisible illnesses may feel as though they have to prove their condition exists, and so being able to talk to others who have the same challenges can be very validating and reassuring.
" I use it as a tool to cope as it’s quite useful for venting." (excerpt from Pearson et al. 2019)
Continuous support - For people with episodic conditions, being able to travel or attend meetings in person is not always possible. Social support provided online means that people with migraine and epilepsy can access support at all times when they want or need it.
"...you can do it anytime, it’s not like a traditional support group where you’d have to go, you’d have to wait a week or a month..." (excerpt from Pearson et al. 2019)
Accessing online support networks helped to increase empowerment and self-management
Increased self-confidence - People in the interviews described feeling validated, empowered and "normal" as a result of speaking with others online.
Asking different questions - Finding information online meant that people changed their approach to neurological consultations with their doctors.
"...it’s enabled me to make better use of the short time that I had with [the consultant] by cutting out all the non-existent questions…the questions that I had but that I could find answers to online." (excerpt from McKinlay et al. 2018)
Expert patient - Knowledge gained from online sources was helpful not only in their own healthcare and self-management, but being able to help others is something that felt good.
"...I’ve had epilepsy for so long, and so many different types and so many different medications. I often go on just to... help other people.” (excerpt from McKinlay et al. 2018)
Though most described benefits, people also had concerns about confidentiality and privacy that influenced the content they shared online.
Misinformation is a risk when seeking healthcare information online from unreliable sources. Fortunately, the people in our research used the knowledge of other expert patients to guide their own information seeking.
False Information - Online sources such as user-group charities are likely to have accurate and up-to-date information. Social media pages are also likely to be monitored for false information and abuse.
Misrepresentation - People with epilepsy and migraine both spoke about how their conditions are misunderstood by others. Epilepsy can be misrepresented in the media, with images and clips focusing on photosensitive epilepsy, which is less common.
Concerns about privacy - Some people with epilepsy may be concerned about disclosing their condition online.
The way people with epilepsy and migraine present themselves online can vary across platforms and within the same platform
Learning but not sharing - We observed a continuum in the way people engaged with new media. Some preferred to share content and engage with others, while some merely chose to read. These people still reported benefits despite not sharing themselves.
Presentation of the self and the imagined audience - As might be expected, the way people presented themselves seemed to depend on who the person believe was likely to see the content. Some chose to keep their condition separate from their personal pages and rather, did so in epilepsy or migraine-specific spaces (i.e., forums or social media pages). For some, this was framed in terms of not wanting to burden others or weariness of being misunderstood by those who did not have a similar experience.
"I think nobody would want to be my friend if I showed my worst." (excerpt from McKinlay et al. 2018)