Long Term Support
Participation after Stroke - 
what does it mean and how can it be achieved?


Department of Human Communication Sciences, University of Sheffield

Professor Shelagh BrumfittDr Sue Baxter SCHARR  and Kate Fryer

We have been looking at the experiences of people who have had a stroke and how they return to their social and everyday lives as they begin to recover. The World Health Organisation (2001) uses the term ‘participation’ in relation to how we might describe the way the individual regains a capacity for ordinary social life. We wondered how easy it was for someone to return to their ordinary life and participate in a relevant way? This PhD study was therefore concerned with the meaning and experience of stroke survivors in relation to their capacity for participation. 

The study has involved an interview investigation into the perceptions and experiences of stroke survivors. The key questions have been: What does ‘participation’ mean to stroke survivors?  And how do stroke survivors experience participation?  

These questions aimed to find the common elements in the experiences of all the people we interviewed. Sources from three groups of stroke survivors in South Yorkshire have included a diverse range of people including ethnic minority interviewees and people with aphasia. One group who were interviewed about their experiences were those who had lived with their stroke symptoms for several years and another group were interviewed at different stages in their first year of recovery. 

Everyone interviewed in the studies gave very good explanations of how they viewed their own recovery in relation to regaining their everyday lives. Some of the findings from the interviews were about ‘meaning’ and ‘experience’.  Our interviewees recognised that participation (in all aspects of their lives) had to be meaningful to them. ‘Meaning’ included ‘being actively involved’, ‘making meaningful choices’ and ‘being me’.  ‘Being me’ described the way the individual’s view of self-identity was associated with the experience of participation. Aspects of ‘experience’ were ‘acceptance’, ’coping’ and ‘new participation’.  Some of the interviewees had found new ways of participating. 

Our findings suggest that each stroke survivor has a unique experience of participation, therefore individualised approaches to social rehabilitation may be most effective.  This study has highlighted the process of adjustment involved in managing after a stroke and the struggle with accepting what has happened and developing new ways of coping. This work has created further questions for us around the way the individual’s identity is associated with opportunities for participation after a stroke.

This work has been completed as part of a PhD. 

Weight gain following a stroke in men and women under 70: challenges and opportunities for prevention and action

150,000 people have a stroke in the UK each year. Strokes are the third leading cause of death in developed countries and are the leading cause of long term disability. Approximately a quarter of strokes occur in people under 65 years.  The wider costs of a stroke are approximately £7 billion per year, with £2.8 billion of these costs picked up by the NHS. 

The numbers of strokes are higher in obese people with high blood pressure or diabetes. Guidelines advise weight reduction following a stroke. Poor lifestyle behaviours prior to a stroke may worsen long term outcomes and impact on rehabilitation. Therefore modification of health behaviour can be crucial in stroke rehabilitation and in preventing avoidable long term problems. Stroke rehabilitation is acknowledged as being crucial to maximising quality of life, independence, and good well-being for individuals and their carers following a stroke.

This exploratory study aims to explore the rehabilitation and weight management experiences of stroke survivors under 70 years of age in the South Yorkshire area. This will try and identify whether weight gain is a problem for some people following a stroke, and if so what factors contribute to weight gain. It will also explore what potential services could prevent weight gain and would be accessible to people after a stroke. 

The study will survey (n=212) and interview (n=20 max) participants recruited through the South Yorkshire Cohort who have reported to be overweight (BMI>25), be 70 years or younger and have had a stroke.  Staff working for or with, local stroke services will be interviewed (n=15), and, host two consultation event with (n=up to 50) people working in key roles and organisations to test out the findings.  Data will be analysed using the Framework Analysis method.  Findings will be used to inform the development of a larger study, raise awareness of the additional needs of patients and make recommendations for the appropriate ways of giving behaviour change advice to patients following a stroke. 

The study is being funded through CLAHRC SY. Development of the study is by researchers in the  Obesity Coproduction work stream in consultation with the stroke theme.

For further information please contact:

Catherine Homer,
 Centre for Health and Social Care Research, Sheffield Hallam University 
Tel: 0114 2255815
Email: c.homer@shu.ac.uk

Family Caregiving after Stroke

Professor Shelagh BrumfittDr Tony Ryan (School of Nursing and Midwifery, University of Sheffield) and Kate Fryer

A series of conversations have taken place with informal carers of stroke survivors to explore issues of importance to them. The carers have attended focus groups to talk about their experiences and how they regard their role as a carer.  The results from this study are being analysed at present.