Community re-integration and long-term need in the first five years after stroke: results from a national survey

Abstract

Purpose: Acute stroke care continues to improve but the later stroke recovery phase remains less well understood. The aim of this study was to document self-reported need in relation to stroke recovery and community re-integration among community-dwelling persons up to five years post-stroke. Methods: A national survey was carried out in Ireland. Participants were recruited through stroke advocacy organisations and health professionals. Existing validated questionnaires were adapted with permission. The final questionnaire assessed respondents’ perceptions of their community re-integration and on-going needs. Results: A total of 196 stroke survivors, aged 24–89 years responded. Over 75% of respondents reported experiencing mobility, emotional, fatigue and concentration difficulties post-stroke. Emotional problems and fatigue demonstrated the highest levels of unmet need. Families provided much support with 52% of people needing help with personal care post-stroke. Forty-two per cent of respondents in a relationship felt that it was significantly affected by their stroke. In addition, 60% of respondents reported negative financial change. Only 23% of those <66 years had worked since their stroke, while 60% of drivers returned to driving. Conclusions: Stroke had a personal, social and economic impact. Emotional distress and fatigue were common and satisfaction with the help available for these problems was poor.

Implications for Rehabilitation

• Professionals should recognise that family members provide high levels of support post-stroke while dealing with changes to personal relationships.

• Emotional, concentration and fatigue problems post-stroke require recognition by health professionals.

• A greater focus on return-to-work as part of stroke rehabilitation may be of value for patients of working age.

• Community
• needs
• neurological
• stroke

Acknowledgements

The authors would like to acknowledge the support and assistance of the Irish Heart Foundation, National Stroke Support Group coordinators, Headway Ireland, and Brí Ireland. We would also like to thank the Clinical Nurse Specialists, physiotherapists and speech and language therapists who distributed and advertised the survey. We acknowledge the assistance of Dr Christopher McKevitt of King’s College London for allowing us to adapt the UK Stroke Survivor Needs Survey and the Stroke Association UK for provision of recent UK stroke surveys. We acknowledge statistical advice received from Professor Cathal Walsh, Department of Statistics, Trinity College, Dublin. We also thank the Project Steering Group members, Professor David Williams (RCSI), Professor Anne Hickey (RCSI), Professor Hannah McGee (RCSI) and Ms Aisling Creed for advice provided throughout the study. We particularly thank the study participants and their families who provided assistance in completing the survey.

Declaration of interest

This work was supported by an unrestricted grant from the National Disability Authority Ireland (Research Promotion Scheme 2013). The authors report no conflicts of interest.

Supplementary material available online