| dc.description.abstract | Stroke is the principal cause of long-term disability. Hemiplegia affects up to 80% of people with stroke and a significant number will not recover use of the affected arm. People with profoundly-affected arm may experience pain, stiffness and difficulty with care activities. We cannot currently predict who is most at risk of these difficulties, and historically interventions have been designed without understanding the temporal evolution of impairment or disability.
The International Classification of Functioning, Disability and Health (WHO, 2001) was used to develop a model of the consequences of the profoundly-affected arm on impairment, disability, and participation. A systematic review of thirty observational studies was undertaken and identified potential predictors of increased impairment in general populations of people with stroke. However, there was a paucity of evidence directed at people with profoundly-affected arm or regarding impact on passive care.
The aim of this study was to test the feasibility of using an observational study design to develop a longitudinal profile of the profoundly-affected arm. Specific objectives of the feasibility study were to assess the processes of recruitment and follow-up, to review the sample characteristics, and to establish the acceptability and responsiveness of the predictor variables and outcome measures. Key tenets of the project were to involve people with cognitive and communication disability, and to use assessments that could be adopted by therapists working in a patient’s own home.
Forty people with stroke and nine carers were recruited and followed up at three and six months post-stroke. Using enhanced communication techniques and personal consultees, it was possible to include people with severe cognitive and communication disability. The baseline demographic characteristics and the rate of loss to follow-up of participants reflect that expected in people more severely affected by stroke.
Qualitative data suggest that participants affirmed the model of impairments and disabilities that had been developed. The predictor variables and outcome measures were considered acceptable to participants, and collected a range of data, generally performing in the manner expected. However, there were a number of exceptions. Cognitive and communication disability impacted on completion of the self-reported assessments, and may have affected performance on measures of mood and sensation/perception. In addition to this, measures of range of movement varied at each time point, in a manner not in accordance with expected change over time.
The evidence from this thesis suggests the research design has potential to be used to develop a longitudinal profile of the profoundly-affected arm. Further work is required to improve carer recruitment, establish the best assessments for those with severest cognitive and communication disability, and review the method of measuring range of movement. | en_GB |
