Brain injury as a result of a bleed, clot or accident can lead to the sufferer experiencing physical and behavioural changes which manifest in the way they move, speak, think, remember and behave. The University’s three-year YARNS Transitions (Young Adults Rehabilitation experiences and Needs following brain injury/Stroke) project aims to help those experiencing this condition by developing psychosocial rehabilitation approaches based on the expertise of those with brain injury. These approaches will provide nurses with ways to support and enable young adults (aged 18-45) who have experienced a brain injury to progress through their rehabilitation journey and move on with their lives.
“The needs of young adults are slightly different as strokes tend to be associated with the elderly population who have slightly different needs,” says Dr Lissette Aviles, a lecturer in nursing at the University, who is part of the research team.
This YARNS Transitions project follows an original YARNS project undertaken by the team, which focused on reviewing published research on rehabilitation needs and experiences of young adults with a stroke, as well as analysing stories in blogs, books, videos and social media.
Lissette says: “Our conclusion was that we need to increase awareness about stroke experiences of young adults because it’s not only a gap in terms of the public knowing that young adults may also suffer a stroke but, perhaps more importantly, in the healthcare professionals. Many of the stories from young adults who have had a stroke highlight the role of the nurse in helping with the diagnosis but more importantly to support the rehabilitation process afterwards.”
A nurse-led approach
Given the importance of nurses in the recovery of these young adults, the University’s Nursing Studies department created the first online certificate to train more nurses in the UK around the needs of young adults who acquire a brain injury. The first cohort of 23 students have graduated and provided the YARNS Transitions team with some valuable feedback.
“The feedback from the cohort was that the knowledge they gained emboldens them to undertake mentorship with their colleagues around aspects such as psychosocial needs, as well as increasing awareness within their own teams,” says Lissette.
UK-wide research
The YARNS Transitions team are currently moving into the second stage of the project, which will include an evaluation of the different psychosocial rehabilitation programmes for 18-45 year olds, post-stroke or brain injury, using a case study approach across the four countries of the UK. Sites of best practice will be identified to collect data on relevant services provided currently to young adults.
Dr Catherine Clarissa, a lecturer in nursing and a research fellow for YARNS Transitions, says this part of the project will focus on the invisible aspects of having a stroke or brain injury.
She explains: “After a stroke or brain injury a young adult will have fatigue which is a hidden symptom. Our focus is more about the community setting than the hospital setting. We want to hear from the people who are running services; those suffering from a stroke or brain injury; their carers; and the third sector and voluntary sector because they work together. Those running services will be the experts and we will refine the theory based on the data they give us.”
Clarissa says a challenging aspect of examining post-ABI care in four different countries is that each country’s health service has its own characteristics: “The challenge is how to make sense of data from those four settings and how to translate it,” she says.
“It is difficult, but it will capture different nuances which will make the intervention more effective and give benefits to support young adults. There is no one size fits all, so hopefully we can catch all the elements to make the best possible intervention.”
Psychosocial interventions
The third stage of the project involves developing psychosocial interventions, delivered by nurses, which support the rehabilitation of young adults following a stroke or brain injury.
Lissette says these changes can affect all parts of a young adult’s life, from their work and family life to their social and economic prospects.
“We need everybody to be part of this because it is so complex,” she says. “Many young adults say there are challenges in their social life – they change the way they think as well as the invisible cognitive consequences of the injury such as memory and managing their own emotions.
“The economic consequences for the country to have people who are not fully recovered or fully supported to reach their full potential will affect all of us due to the use of services, and mental health impact. It’s important to have the big-picture aspect of this topic in mind.
“At the end of this study in 2026, we are hoping to undertake a follow-up study that measures the effect of the new psychosocial intervention. At this moment in time, and based on the review of the literature conducted by the YARNS team, we haven’t published any nurse-led intervention that targets young adults’ psychosocial needs. From that point of view, it will be very novel.”
Get involved
The main core research team of YARNS Transitions is based in Edinburgh but there is an advisory committee made up of researchers and young adults who have experienced ABI from across the UK.
Anyone who has experienced or cared for someone with a brain injury, lives in the UK and would like to help guide the research project, should email yarnspro@ed.ac.uk or @YARNSproject on X (formerly Twitter).