specialty focus
Sharing their story
Researchers collaborate to tell the story of chronic loneliness in aged care .
Barbara Barbosa Neves interviewed by Eleanor Campbell
Creative writing can deepen insights into how people living in aged care homes experience loneliness , according to a new study .
Dr Barbara Barbosa Neves , a senior lecturer in sociology at Monash University , spent six months interviewing residents living in residential aged care facilities around Victoria .
Her research noted a lack of meaningful social interactions and companionship experienced by the elderly was leading to severe illnesses , including dementia .
After reading Josephine Wilson ’ s acclaimed 2017 novel Extinctions , Dr Barbosa Neves enlisted the help of the Perth-based author who wrote a creative nonfiction narrative and a fantasy story based on the lives of two of the study ’ s participants .
She said the process inspired her in ways that she couldn ’ t have imagined before .
Dr Barbosa Neves spoke to Aged Care
Insite about her collaboration with Wilson , ageism in academic research , and the power of storytelling to heal the burden of loneliness in aged care facilities .
ACI : Tell us about the research and the ways that storytelling can help tackle chronic loneliness in later life . BBN : I ’ ve been looking at loneliness for a long time , first in Canada , and now here in
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Australia . One of the studies I conducted was in two aged care facilities in Victoria . I pretty much stayed there for six months , just observing how it is to live in an aged care facility . But I ’ ve also interviewed residents who experience prolonged loneliness .
Some of the things they told me actually matched some of the findings I had previously collected in Canada . The first one that is really important to mention is that for them , loneliness is actually worse than some of the health issues they are facing . So for example , they would say , ‘ I feel rejected . I feel abandoned . I cry myself to sleep . Loneliness is the worst bloody feeling in the world .’ Loneliness for them entails this immense personal and emotional suffering that also then connects to other issues that they are facing .
One of those is of course the stigma of being old and frail . So a lot of them would say , ‘ I am lonely because I am old and frail .’ And when we actually asked them , ‘ So what do you feel when you ’ re lonely ?’ They would say , ‘ Well , you feel like you ’ re at the end of your life and there ’ s nothing else . No one cares about you . You don ’ t matter anymore . It ’ s the end .’ These were the words that we saw coming up , and they emerged quite often .
They were associating loneliness with the social stigma of being old and frail . For them , it was all compounding , it was all interconnected . They were also internalising the social stigma of loneliness . They told us that they would not talk to their families about feeling lonely because they already thought they were a burden and a problem to be dealt with . They didn ’ t want to add more to that compromised sense of personhood .
The other thing they told us a lot was that every time they would try to talk to aged care staff members about their feelings of loneliness , they would be redirected to more positive conversations . The staff members would say , ‘ But look outside , it ’ s such a beautiful day ,’ or , ‘ You have so many friends in here .’ They felt dismissed , and they didn ’ t feel they had space or time to really process negative emotions such as loneliness .
After conducting her interviews with residents , Barbosa Neves encountered an issue as to how to best communicate their experiences in a way that would engage with readers . She then initiated a collaboration with author Josephine Wilson after reading her 2017 award-winning novel , Extinctions . My challenge as a social scientist is that every time I try to communicate my research at conferences , or a community event , I ’ m usually confronted by comments that really emphasise not only the ageism in our societies , but also how people don ’ t really understand what loneliness is in later life .
I often get comments such as ‘ Older people are lonely because they make themselves lonely . They are always grumpy .” Or , ‘ People in aged care , they cannot experience loneliness because they are living with other people .’
I feel like I am failing at communicating my research because I ’ m not able to create