Experiences of using information and communication technology within the first year after stroke – a grounded theory study

To evaluate the chronic consequences of stroke in terms of activity limitations, restricted participation and dissatisfaction from life, and the relationship between these variables, in stroke survivors living in the community one-year post onset. A total of 56 stroke patients (mean age: 57.7) who completed an in-patient rehabilitation programme, were evaluated one-year post onset in their homes, using the following instruments: Functional Independence Measure (FIM), Instrumental Activities of Daily Living Questionnaire (IADLq), Activity Card Sort (ACS), a work questionnaire, Life-Satisfaction Questionnaire (Li-Sat 9) and the Geriatric Depression Scale (GDS). One year post stroke onset the mean FIM motor score was 75.88 (max score: 91), yet more than 50% of the sample still required assistance (usually mild to moderate) in dressing, bathing and use of stairs. The majority of the sample required full assistance in some IADL domains, notably meal preparation (77%), housekeeping (70%) and laundry (82%). Only one subject returned to paid employment and the mean activity level (ACS), representing the percentage of leisure and IADL activities retained from before stroke, was 42.8%. Satisfaction ratings were generally low but varied between domains. Only 39% were satisfied from 'life as a whole'. The lowest satisfaction rates were noted for 'vocational situation' (14%), 'leisure situation' (34%) and 'ability in self-care' (43%), whereas the satisfaction rate from family life was high (84%). Significant correlations were found between overall life satisfaction scores and the overall FIM motor, IADLq, and ACS scores (Pearson r values: 0.32, 0.48 and 0.57, respectively). Activity level was found to be a significant predictor of satisfaction (p = 0.007) beyond that accounted for by demographic variables and depression. Stroke survivors dwelling in the community demonstrate long-standing dissatisfaction one-year post onset, correlating with activity limitation and restricted participation. The findings present a compelling need for rehabilitation services with a focus on participation in IADL and leisure activities, in order to improve the satisfaction of this population.