Australians with chronic illnesses often isolated because of their health are using digital media to share their emotional experiences and become online activists, research from Monash University has found.
The research paper, Feeling less alone online: patients’ ambivalent engagements with digital media, revealed the communities are telling stories of suffering, injustice or outrage for being afflicted with a severe life-limiting illness, or finding little to no research on their condition, and being denied access to life-saving therapies.
Led by sociologist Professor Alan Peterson and his Monash colleague Dr Allegra Schermuly, along with University of Plymouth partner investigator Professor Alison Anderson, the research explored patients’ use of digital media via a study combining more than 300 online surveys and 50 qualitative, semi-structured interviews.
It involved patients, carers and patient activists/advocates in Australia who represent communities including people with breast cancer, HIV/AIDS and those living with neurodegenerative conditions.
With many of these patients battling debilitating symptoms, the side-effects of treatment and an inability to maintain ongoing paid work and relationships, Professor Peterson found the conditions also triggered significant isolation and loneliness.
“This sharing and connecting online went beyond a straightforward exchange of information regarding their condition of treatments and actually validated people’s feelings,” he said.
Published in the journal Sociology of Health and Illness, key themes that emerged from participants’ responses included connection, equality of access and opportunity, isolation/loneliness and online activism.
Professor Peterson said many participants reported using digital media to influence or attempt to influence research agendas and the development and availability of treatments.
The most common platform for patient activism and overall usage was Facebook because of its ability to manage the extent, manner and timing of interactions, as well as control privacy.
“Digital media allows patients an opportunity to raise community awareness, support or share fundraising initiatives along with the creation of information sources, databases and forums to further their fight in controlling their illness,” Professor Peterson said.
Interestingly, researchers found chronically ill people both distrust digital media and embrace it as an invaluable tool for social connection, with numerous respondents concerned with the potential for surveillance, harmful conduct and ‘misinformation’ on digital media platforms.
Many reported trolling, lack of regulation, inaccurate information sharing about conditions and comparisons between severity of illnesses as negatives of digital media.
Nevertheless, they continued to use digital media, listing benefits including being able to regularly contact other affected patients for support, feeling like their symptoms are normal, keeping informed about issues related to their illness and spreading awareness.
“It is clear the internet helps those affected by chronic illness overcome the limitations of their condition and potentially allows them to feel part of a community of others with similar experiences,” Professor Peterson said.
“Digital media enables people the opportunity to share and ‘validate’ their experiences and know that there are others available who will listen and offer support, while allowing them to control the extent and timing of their interactions.
“This sharing and validation enabled them to achieve a ‘sense of belonging’ and feel that they are part of a community defined by a common interest – which was especially valued by those suffering the isolation and pain and stigma.”