Participation in everyday life after stroke : development and evaluation of F@ce – a team-based, person-centred rehabilitation intervention supported by information and communication technology

AIM: The general aim of this thesis was to generate knowledge about how Information and Communication technology (ICT) could be used in the rehabilitation process after stroke in order to develop and evaluate the feasibility of F@cea person-centred, team-based intervention, supported by ICT, to enable performance of daily activities and participation in everyday life for people after stroke. METHODS: Studies I and II were qualitative grounded theory studies that were performed to generate knowledge on people after stroke and health care professionals working with rehabilitation after stroke, regarding the experiences of using ICT. The third study was a secondary analysis of a previously performed randomised controlled trial, evaluating a client-centred activities of daily living (CADL) intervention, to analyse factors of importance for a positive outcome in participation after stroke. The knowledge generated in studies I-III combined with previous research was used to develop F@ce, a team-based, person-centred intervention for rehabilitation after stroke, that was supported by ICT. Study IV was an evaluation of the feasibility of using F@ce, and the study design, in terms of the recruitment process, outcome measures used, fidelity, adherence, acceptability and potential harms. RESULTS: People after stroke in study I described their drive to integrate ICT in their everyday lives after stroke. They used their mobile phones to feel safe, to stay connected to friends and family, and to improve physical and cognitive functions. They also used their computer for social networks, to manage daily occupations such as paying bills, online shopping and searching for information. The healthcare professionals in study II did not use ICT to any greater extent outside their office, however, they had a vision that ICT could be used as a platform for sharing information and collaboration within the rehabilitation process. The results from study III showed that within the control group (receiving usual ADL interventions) those with mild stroke and home-based rehabilitation had a better outcome in perceived participation compared to the intervention group, however, in the intervention group the difference between stroke severity and context of rehabilitation were not significant. This would indicate that the CADL intervention were specifically useful for those with moderate to severe stroke and those receiving rehabilitation at an in-patient unit. The feasibility testing of the newly developed F@ce intervention in study IV showed that it was feasible to use, and that the fidelity, adherence and acceptability of the intervention were good. The participants had positive outcomes in performance (n=4) and satisfaction with the performance (n=6) of daily activities according to Canadian Occupational Performance measure (COPM) and several participants had clinically significant improvements in different domains in the Stroke Impact Scale (SIS). CONCLUSION: The studies within this thesis enabled the development and evaluation of a new rehabilitation intervention, F@ce, using ICT which is relevant in this time, with the rapid digitalization in the society, healthcare and rehabilitation. The knowledge from the previously developed CADL study, along with the experiences of people after stroke and healthcare professionals’ use of ICT, and the modelling of F@ce together with stakeholders created a strong foundation for the new intervention. Using a team-based, person-centred intervention with the support of ICT seemed to enable people to perform daily activities and thus increase their participation in everyday life. LIST OF SCIENTIFIC PAPERS I. Martha Gustavsson, Charlotte Ytterberg, Mille Nabsen Marwaa, Kerstin Tham & Susanne Guidetti. Experiences of using information and communication technology within the first year after stroke – a grounded theory study. Disability and Rehabilitation, 2016 (40) 561-568 II. Martha Gustavsson; Charlotte Ytterberg; Susanne Guidetti. Exploring future possibilities of using Information and Communication Technology in multidisciplinary rehabilitation after stroke – a grounded theory study. (Submitted) III. Martha Gustavsson; Susanne Guidetti; Gunilla Eriksson; Lena von Koch; Charlotte Ytterberg. Factors affecting outcome in participation one year after stroke: a secondary analysis of a randomised controlled trial. Journal of Rehabilitation Medicine, 2019 (51) 160-166. IV. Martha Gustavsson; Charlotte Ytterberg; Kerstin Tham; Magnus Andersson; Uno Fors; Susanne Guidetti. A single group feasibility study of F@ceTM, a team based, person-centred intervention for rehabilitation after stroke supported by Information and Communication Technology. (In manuscript).