National Survey of Stroke Survivors: Documenting the Experiences and Levels of Self-Reported Long-Term Need in Stroke Survivors in the First 5 years.Systematic Review:Factors Associated with Community Re-integration in the First 12 months Post Stroke: A Qualitative Synthesis.

Abstract

Introduction In Ireland it is estimated that there are 30,000 persons living with residual effects of stroke.1 The Irish National Audit of Stroke Care, carried out in 2007, identified substantial deficits in a number of areas including discharge planning, rehabilitation, on-going secondary prevention, and communication with patients and families.2 The present study builds on the findings of the audit. It explores in detail the current needs of people post stroke in Ireland who are living in the community. It also provides a profile of many possible problems that stroke can cause. In addition it provides a comprehensive review of the literature. Aim This report contains two distinct pieces of research: Firstly, a systematic review and qualitative synthesis (metasynthesis) of the literature was conducted. The aim of the systematic review was to identify perceived barriers and facilitators to community re-integration in the first 12 months after stroke, from the perspective of persons with stroke Secondly, a national survey of stroke survivors who experienced their stroke up to 5 years previously was carried out. The aim of the survey was to document the experiences and levels of self-reported long-term need among community-dwelling stroke survivors in Ireland Methods of the National Survey Stroke survivors were recruited to take part in the survey primarily though the Irish Heart Foundation National Stroke Support Group Network and non-statutory organisations that provide support after acquired brain injury. The survey was also advertised online to a broader stroke population. A questionnaire was developed to assess respondents’ own perceptions of their recovery, community re-integration and on-going needs from existing validated questionnaires with the permission of the original authors.3 Data collection took place between June and October 2013. Main findings: Systematic Review Eighteen articles, using qualitative methodology, were included in the final review. Four primary themes that were perceived to act as barriers or facilitators to community re-integration for individuals in the first year after stroke were identified from the included studies: Primary effects of stroke Personal factors Social factors Relationships with professionals National Survey A total of 196 stroke survivors, aged between 24 and 89 years, responded to the surve Mobility difficulties were reported by eighty-three per cent of respondents. Emotional problems, fatigue, concentration and arm dysfunction were reported almost as commonly Of the 150 individuals with emotional difficulties only eleven per cent received psychological services Sixty per cent of respondents felt that their household finances were affected by their stroke. Thirty-six per cent of respondents reported paying privately for rehabilitation. Thirty-four per cent of respondents had to pay privately to adapt their home Over half of respondents needed help with personal care and two thirds needed help with household tasks since their stroke. Family provided most of this help Forty-two per cent of respondents who were in a relationship at the time of the survey felt that it has been significantly affected by their stroke Less than a quarter of respondents under the age of 66 have worked in a full or part-time capacity since their stroke, while sixty per cent of drivers have returned to driving Conclusions Stroke had a personal, social and economical impact on the lives of many respondents. Successful return to work levels after stroke, as reported, were particularly low. Emotional distress and fatigue were common and were barriers to many activities. Satisfaction with the level of help available for these problems was poor