Research participation requests are sent to the Stroke Association from external research institutions (e.g. universities and hospitals).
We conduct checks on these before promoting but are not involved in their running. This means we cannot comment on trials and have no affiliation with them.
Lewis Jefferson, Northumbria University
Loneliness is one of the main experiences that affect quality of life in stroke survivors. Research points to a few different areas that might cause this loneliness, like losing touch with friends and not being able to go out.
But a more recent idea has come about that a loss or change of identity might lead to loneliness in survivors. This has been called identity aloneness by one research team.
This could be because a loss of who one is might make it hard to be oneself around even close friends and family, but there is not yet enough research on the matter.
This research aims to understand what identity aloneness is and what it means to stroke survivors by having 1hr interviews with stroke survivors and their spouses / carer.
Who are we looking for?
We are looking for stroke survivors who are able to speak fluently and have experienced loneliness and identity change/loss, accompanied by their spouse/carer.
What will happen if I take part in the study?
Those who take part will be asked to fill in an online form (tinyurl.com/identitystroke) with sections for:
- You and your spouse/carer to give consent to take part.
- Giving details about your stroke.
- Giving us contact details to arrange an interview.
After this has been done, you and your spouse/carer will attend an online interview through Microsoft Teams (or another conferencing software should you prefer) lasting around one hour. You will be able to ask for a break or end the interview at any time if you feel tired or uncomfortable.
Interviews will involve discussing your experiences with stroke, your support network, and experiences with loneliness and identity change/loss.
After completing the interview, you will be sent a debrief sheet which will give you details of how to access the final written report for the study, as well as provide you with links to emotional support and stroke support organisations in the event any aspect of participating in the study has caused you any distress.
How will the research benefit people affected by stroke?
Getting to understand how stroke survivors themselves define and experience identity aloneness is one step towards increasing help for survivors.
We expect the findings of our study to aid in the creation of programmes that target identity aloneness based on our findings. This will hopefully lead to stroke survivors feeling less lonely and more able to cope with their new selves.
How do I take part or find out more?
Please visit tinyurl.com/identitystroke for information and to sign up to the study or contact lewis.j.jefferson@northumbria.ac.uk if you are still unsure about the study and would like more information.
