Living with an electric wheelchair – the user perspective

Abstract

PostprintThis is the accepted version of a paper published in Disability and Rehabilitation: Assistive Technology. This paper has been peer-reviewed but does not include the final publisher proof-corrections or journal pagination.Citation for the original published paper (version of record):Stenberg, G., Henje, C., Levi, R., Lindström, M. (2016) Living with an electric wheelchair: the user perspective. Disability and AbstractPurpose: To explore the experiences of using an electric wheelchair in daily living.Methods: Fifteen participants, eight women and seven men, living in different parts of a Nordic country were interviewed. The interviews were conducted in the home or workplace.Open-ended questions were used. The data were collected and analysed according to grounded theory.Results: Analysis resulted in one core category: "Integrating the electric wheelchair-a manifold process", describing a process commencing from initial resistance against use of an electric wheelchair, to acceptance with various extent of integration. Six categories emerged that represent this core process: incorporating the electric wheelchair into the self-identity process, calculating functional consequences, encountering the reactions of others, facing duality in movability, using proactive strategies, and being at the mercy of the system.Findings indicate that the integration process is complex and manifold. Practical, personal, and social dimensions were intertwined and significantly involved.Conclusions: Integrating an electric wheelchair is a process closely connected to symbolic value, usability, community mobility, and identity. These aspects should be considered in the production, prescription, and adaptation processes.

Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair: an interview study

“…According to Charmaz [13], people living with chronic diseases may limit their activity and autonomy rather than affirm further physical deterioration that would threaten their selfperception. The process of resistance and acceptance of using a wheelchair is thereby related to an on-going process of changing self-identity [12]. In this study, some of the young adults perceived that they were sometimes treated differently by people in society when they began to use a wheelchair, i.e., initially being viewed for "what" they are (a person with disability) rather than "who" they are (a unique person).…”

“…In this study, some of the young adults perceived that they were sometimes treated differently by people in society when they began to use a wheelchair, i.e., initially being viewed for "what" they are (a person with disability) rather than "who" they are (a unique person). Awareness of the varying reactions of others to the wheelchair and fear of not being regarded as the person they are has previously been described [12]. How a person is regarded by others involves both the self that a person intends to project through speech and actions, and also the self that others interpret from the person's speech and actions [25].…”

“…Previously, adult persons living with progressive physical deterioration have been found to experience better psychological adaptation over time [10] and employ adaptive strategies to cope with their disease [11]. Experiences of having incorporated the wheelchair as part of the body have also been shown [12]. Acceptance of a chronic disease, however, may be a difficult ongoing process.…”

“…Experiences of progressive functional decline that influenced identity, social status, and social relationships have also been shown in the transition from receiving a diagnosis and living with motor neurone disease [11]. Moreover, integrating a wheelchair has been described from the users' perspectives as a manifold process which involved practical, personal, and social dimensions [12]. Constantly coping with a progressive disease thus poses existential and organizational difficulties for the person, and the threat of permanent dependency may strip away earlier self-definitions based on independence and may also influence the way the person is viewed by others [13].…”

Wanting a Life in Decency!—A Qualitative Study from Experienced Electric Wheelchairs Users’ perspective

“…Their contribution was an enhanced understanding of the driving difficulties that powered wheelchair users' experienced during daily activities including ecologically validated measurements for power wheelchair users, and identifying and refining the content of training programs specific to the use of power wheelchairs [10]. A recently published Swedish study showed that electric wheelchair users embodied their experiences of being a wheelchair user, and the wheelchair became much more than a device that helped them to mobility [11].…”