YARNS 2020-21 - Young Adults Rehabilitation experiences and Needs following Stroke – a Scoping study

The first YARNS project looked to understand the range of experiences of young adults (18 – 45) who had experienced a stroke through their own stories, and compare this to the published scientific and clinical literature on the subject.

Stroke represents a major disruption to life in all ways (biological, psychological and social) and in particular for the young adult will impact on the individual, their family, work, activities, participation in society and lifestyle. Rehabilitation and recovery or partial recovery may take years. Such a life event forces a close look at and resetting of life goals. 

Young Peoples stories  

What did we do? 

The experiences of young stroke survivors aged 18 to 45 at the time of the stroke were collected. Accounts were gathered from publicly available digital sources, including social media. We identified 103 accounts from films, autobiographical books, blogs, websites, videos, Twitter and Instagram.  

What did we find? 

Younger stroke survivors make sense of their experience by reflecting on how stroke has impacted on their lives. We found that they had experienced an emotional journey between themselves in the past, the present and the future or evolving self. There were also challenges such as the impact on relationships families and careers. Most stories identified that the different parts of the journey had been challenging, from diagnosis or initial misdiagnosis, to returning home and longer-term meeting their personal and rehabilitation goals. Their journeys told us how they made the best of their lives as they are now.  

What does this mean? 

The journey following any brain injury in young people is complex. We need to better understand the challenges faced by them in their journey on in life. We were able to highlight that there are specific challenges for these young adults that require attention for better age-appropriate care and support.  

Published Literature 

This scoping review aimed to map the existing literature on the rehabilitation care experiences and outcomes of young adults post-stroke aged between 18 and 45 years within acute and social care settings. 

What did we do? 

The scoping review was used to identify existing practice by searching widely the published academic and evidence-based literature. To answer the following questions:  

  • What is the impact of stroke on young adults?  
  • What are the focus and the expected outcomes of stroke rehabilitation in young adults? What are young adults’ experiences of stroke rehabilitation care in acute and health and social care settings? 

What did we find? 

Most of the literature was focused on older people following stroke but we found 85 articles relevant to younger people. Stroke was reported to impact on young adults both positively and negatively. The focus and the outcomes of stroke rehabilitation were mainly physical. Young adults experienced a lack of age-appropriate stroke rehabilitation in hospital and community settings. 

What does this mean? 

Our results highlight the unmet needs of young adults in their stroke recovery journeys. Effective rehabilitation programmes and interventions should be developed to support young adults following stroke and meet their age-specific needs. 

 

Read the study in full through our Edinburgh Research Explorer

What's happening next? 

This work is being shared with health care professionals, educators, government and those who provide services to help them understand how they can better meet the needs of young adults who have survived a brain injury from stroke. Care and services which focus on all aspects of the wellbeing of this age group are needed. We must now raise awareness amongst health and social care professionals of the needs of brain injury survivors in this age group as well as their family members/carers. 

A Postgraduate Certificate in Neurological Rehabilitation and Care was developed to support Nurses in learning about and developing their practice.

YARNS Transitions is looking at the feasibility of designing a nurse-led, holistic, neurological rehabilitation intervention which supports the psychosocial rehabilitation and survivorship of young adults following an Acquired Brain Injury (ABI).