“Serious attention” must be paid to the wider psychological impact of stroke, including loneliness, which can lead to additional medical conditions or exacerbate existing symptoms, a new study has revealed.
The study, the first to focus solely on the impact of loneliness on stroke survivors, finds a desire for survivors to maintain their pre-stroke identity, dignity and independence – but a perceived undesirable self-image and the fear of negative labels being put on them is a significant barrier to that.
And the research team, from the University of Durham and University of Sunderland, also stress the importance of developing a new scale to accurately chart the experiences of stroke survivors specifically, which could result in increased detection of loneliness and other psychological effects and enable intervention.
The need to act is becoming ever greater, the study urged, with more than 100,000 strokes recorded annually in the UK and survivor numbers expected to rise by 123 per cent from 2018 to 2035. Currently, the cost of care is estimated at £25billion each year.
The study – The meaning of loneliness to stroke survivors: A qualitative study in Northeast England – focused on 29 stroke survivors across the region, and saw loneliness described as “probably the worst thing in the world”. It gives further insight into the loneliness experienced by so many people, following a study into the experiences of people with brain injury during the pandemic.
Major contributing factors were the loss of independence, which for some people meant they could no longer drive, forcing them into a “loneliness you can’t get out of”, and the perception of stigma and negative appearance, both from themselves and from others.
“The new but unfavourable self-image—the previously capable, free, and outgoing me is no more—compounded by reduced opportunities to interact with others socially, appears to be a key source of loneliness among stroke survivors,” the research finds.
“Stroke survivors were especially wary of the possible undesirable labels either they themselves or others put on them. This is why they cared and worried about losing their independence, or taking on a new identity of “the dependent,” or “the sick one.”
“To stroke survivors, any loss of independence means increased dependence on others, which they may interpret as being burdensome or a nuisance, even if that may not be what others believe. Understandably, they became much more sensitive to the way in which others treat them after stroke.
“Even if they could accept their “new you,” they found it a daunting task to make others understand this “new you” without putting a negative label to it.
“To be different from others is not necessarily an issue, but to be different from others with an undesirable label is, and such difference is an important source of loneliness.”
This perception of difference is a key factor in the feeling of “loneliness among others”, where stroke survivors find it difficult to fit into an existing social circle through fears of stigma and are loathe to disclose how they truly feel, the study finds.
“Stroke survivors are caught in a conundrum: they have a desire for others to understand their feelings, but at the same time, their desire to protect their self-image makes it more difficult to achieve such understanding,” it said.
“Rather than voluntarily telling others they need help, they would wait for others to ask. Even when others did, they may not tell the truth because it would also depend on how they asked.
“To stroke survivors, stigma means not only the embarrassment of acknowledging one’s vulnerability to others, but also the low probability of obtaining genuine sincerity from others.”
To properly understand the extent of the challenges facing stroke survivors, a new scale should be developed, building further on the existing three- and six-point scales to chart loneliness more generally.
“Future research will benefit from creating and employing a scale of loneliness customised for stroke survivors, which should incorporate items on self-identity and social relation perception,” the study concludes.
