Experiences of standing in standing devices : voices from adults, children and their parents

Abstract: Studies concerning standing in standing devices have mainly focused on the biological effects of standing on the body, such as preventing bone loss, increasing or maintaining ankle dorsiflexion, improving bone density and reducing spasticity. Little is known about the psychosocial dimensions of standing. The overall aim of this thesis was to determine the characteristics of individuals who use standing devices, to describe their reasons for standing and their experiences of using these devices as viewed from the perspectives of adults, children and their parents. This thesis includes four studies, two with a qualitative approach (Studies I and IV) and two with a quantitative approach (Studies II and III). In Study I, fifteen adults with different disabilities who were users of standing devices were interviewed about the meaning associated with standing. The data were analysed using a phenomenological hermeneutic approach. The results showed that the upright body position had an influence on the individual’s lifeworld, including the lived body, lived time, lived space and lived relationships. Studies II and III originated from a comprehensive survey of users of standing devices in five counties in Sweden. The data were analysed with descriptive statistics. The results of Study II revealed that the individuals who used standing devices ranged in age from 2 to 86 years and had different types of standing devices. Almost 50% of the respondents were totally dependent on other individuals to complete the questionnaire, and only one in four was independent in movement. The participants’ self-rated health, according to the EuroQoL visual analogue scale (EQ-VAS), was rather high. Thirty nine per cent (39%) of the respondents’ used their device one or more times per day. The youngest individuals used the devices most frequently and had the longest standing times, which was in contrast to teenagers, who used the devices least frequently. The respondents’ perceptions of how the standing position influenced how they were met by other persons differed depending on whether the individual him/herself provided the rating or someone else rated the item on the individual’s behalf. The most common reasons given for standing were to improve circulation and well-being and to reduce tension and stiffness (Study II).In Study III, the psychosocial impact of the standing device was measured using the Psychosocial Impact of Assistive Devices Scale (PIADS) questionnaire. Standing devices were shown to have a positive impact on the users according to the total score and three sub scores: adaptability, competence and self-esteem. The teenagers had the lowest scores on the scale, whereas the respondents who were 65 years of age or older had the highest scores. A high degree of independence in movement, the ability to walk and the possibility of using the device during activities also yielded high values on the scale. Study IV was an interview-based study with children who used standing devices and their parents. The children and their parents were interviewed individually. A qualitative content analysis was performed to gain insight into the participants’ experiences of using standing devices. The standing position influenced both physical and social dimensions. There was also ambivalence about using the device. In the parents' eyes, standing was a way to be like others and to enhance participation in different activities. However, some children stated that standing could be painful and interfere with participation. In conclusion, this thesis illustrates the use of standing devices from the points of view of both autonomous and non-autonomous users as well as of users’ parents. The use of these devices was widespread and frequent. The upright body position was experienced as mainly positive, with positive impacts on well-being and participation, but there was also a degree of ambivalence. Because there is a great lack of studies concerning the impacts of using standing devices, professionals should pay attention to promoting standing as a means of improving well-being and participation in this vulnerable group.