Australians with chronic illnesses, especially those who are isolated because of their health, are using digital media to share emotional experiences and become online activists, new research from Monash University has found.
Feeling less alone online: patients’ ambivalent engagements with digital media (attached), found these communities are using digital media in different ways to which it may have been initially designed.
They are telling stories of suffering, injustice or outrage for being afflicted with a severe life-limiting illness, or of finding little to no research on their condition, and even talking about being denied access to what are seen as life-saving therapies.
The paper, by sociologist Professor Alan Petersen and his Monash colleague Dr Allegra Schermuly and University of Plymouth partner investigator Professor Alison Anderson, was published in the journal Sociology of Health and Illness today.
Professor Petersen’s research explored patients’ use of digital media via a study combining more than 300 online surveys and more than 50 qualitative, semi-structured interviews.
It involved patients, carers and patient activists / advocates in Australia who represent communities including those suffering from breast cancer, HIV/AIDS, and those living with neurodegenerative conditions.
With many of these patients grappling with often-debilitating symptoms, the side effects of treatment and an inability to maintain ongoing paid work and relationships outside the home, Professor Petersen found many felt isolated or lonely as a consequence of their condition.
“This sharing and connecting online went beyond a straightforward exchange of information regarding their condition or treatments and actually validated people’s feelings,” he said.
Key themes that emerged from participants’ responses included connection, equality of access and opportunity, isolation / loneliness and online activism.
Professor Petersen said many participants spoke about using digital media to influence or attempt to influence research agendas and the development and availability of treatments.
“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,” he said.
Professor Petersen and his research team found chronically ill people both distrust digital media and embrace it as an invaluable tool for social connection with a number of respondents concerned with the potential for surveillance, harmful conduct and ‘misinformation’ on digital media platforms.
Many mentioned trolling, lack of regulation, inaccurate information sharing about conditions and comparisons between severity of illnesses as negatives of digital media.
Despite this, they continued to use digital media, stating some of its benefits included:
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Being able to regularly contact other affected patients and have feelings validated
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Feeling like their symptoms are normal
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Empathy and supporting others
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Keeping abreast of issues related to their illness
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Spreading awareness
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Sharing experiences of chronic pain which is an invisible symptom
“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 Petersen 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 of pain and stigma.”
The study revealed the most common platform for patient activism, and indeed most patients’ overall usage, was Facebook.
Facebook’s functionality and features made it a popular choice with its ability to manage the extent, manner and timing of interactions, as well as controls over privacy including private groups for like-minded people.
One survey respondent stated it was “essentially a digital drop-in centre that’s open 24 hours, seven days a week”.
Professor Petersen is co-convening a virtual symposium into loneliness and digital media with the Academy of Social Sciences on June 24, 2020.
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