The significance of assistive devices in the daily life of persons with stroke and their spouses

Sammanfattning: The overall aim of this research project was to explore and describe the significance of assistive devices in daily life. The project involves two qualitative and two quantitative studies. Three of these studies were from the perspective of persons with stroke and one from the perspective of spouses of persons with stroke.A hermeneutic phenomenological lifeworld approach was used in the qualitative studies and data was obtained through conversational interviews with the two study groups, 22 persons with stroke and 12 spouses of persons with stroke, after the devices had been used for about a year.The results indicated that the lived experiences of assistive devices in respect of the different lifeworld existentials (lived body, lived space, lived time, lived human relation) are closely interconnected in both study groups. The lived body existential included aspects of habits, feelings and the incorporation, figuratively speaking, of the devices into their own bodies. Lived space concerned the gradual development of a new view of the environment and the devices’ role as a prerequisite for being able to live at home. The devices brought about a changed relation to lived time with respect to the temporal perspectives of past, present and future. To be able to take control of one’s own time was an important experience that the devices facilitated. Assistive devices were an integral part of the lived human relation between the couples in the study groups, as well as between the disabled persons/spouses and other people, including the health-care professionals. The devices contributed either to the maintenance or the change of social roles, but they sometimes also gave rise to the experience of being stigmatised. The results in the case of both study groups showed that the use of different devices is complex and often contradictory, especially when it comes to persons with stroke. Overall the persons’ experiences of the advantages of the devices overshadowed their experiences of the disadvantages.The quantitative studies included a pre- and post-assessment design. Thirty-two persons with disabilities after stroke were included. The impact of an outdoor powered wheelchair on activity and participation (IPPA, WHODAS II) and quality of life (PIADS, EQ-5D) was measured. Statistical analysis with mainly non-parametric tests was used to determine significant within-group and between-group changes after intervention. The conceptual framework ICF was used in one of the quantitative studies when classifying the participants’ stated problems.The results showed that the outdoor powered wheelchair is an essential device for persons with disabilities after stroke with regard to overcoming activity limitation and participation restrictions in everyday life. Furthermore it mostly has a positive impact on such users’ quality of life. However, it is also important to highlight the negative experiences of a few with regard to the use of powered wheelchairs. In sum, these results will enable prescribers to better understand the individual experiences of using assistive devices and the individuals’ and the families’ need for support in connection with the prescription of assistive devices, the particular example being powered wheelchairs.