The Art of Living with a Traumatic Spinal Cord Injury in its relation to Resources and Norms in Swedish Society

University dissertation from Division of Rehabilitation Engineering Research

Abstract: The overall aim of this thesis is to elaborate on the art of living with a traumatic spinal cord injury (SCI) in its relation to resources and norms in Swedish society. The thesis originates in part from a prevalence group of SCI individuals and is based on four studies. One is longitudinal and register based, and one is interview based. A paper on “ethics in the making” elaborates how general versus situated ethics might influence design. A norm perspective is applied in another study highlighting the double sets of social norms via narratives in the context of a severe disability. Through these approaches, I hope to open up an area in which little or no research has previously been carried out. A traumatic spinal cord injury is today not curable and commonly leads to a significant, permanent disability with a risk for severe complications. Living with a traumatic spinal cord injury poses, beside all the medical implications, a wide range of obstacles and circumstances in daily life that must be dealt with. The need for accessible environments and societal resources is thus obvious; an extensive and lifelong reliance upon such services will typically be established. The complexity of the injury and its effects on physical functions mean that the needs are great. Society provides various supportive services in order to restore social integration, re-establish autonomy, compensate for financial and functional losses and facilitate activities of daily living. Acute care, rehabilitation and readmissions both as inpatient and outpatient services are, of course, of great importance and are cost-consuming. Other services, though, will also be comprehensive due to their repetitive use in a life-perspective. The comprehensive aim of the thesis is formulated in the following sub-purposes: • Identify the spectrum of potentially relevant societal resources after traumatic SCI. • Investigate an incidence population’s use of societal resources including self-rated levels of satisfaction with the application process and resource allocation. • Discuss how general ethical guidelines are challenged by situated ethics in a design context. • Validate an existing inpatient register. • Analyze and discuss how a norm perspective can be utilized to understand why legislation is not sufficient to achieve Swedish disability policy goals. Results show that about 25 separate services are available and that each service has to be applied for separately by the individual. Information about the services was provided by a social worker but still individuals reported ignorance about the existence of various services. Applications were partially or totally rejected. The National Patient Register proved to be lacking information and was thereby validated by raising three questions: Is an inpatient stay registered in association with the injury date? Is the reported first length of stay plausible given the level and extent of injury? Are all the anticipated care and/or rehabilitation providers represented in the register? For 62%, the first registered hospitalization date correlated with the injury date, leaving 38% with a hospitalization that started later. Considering the level and extent of injury, individuals were reported to have unrealistically short initial hospital stays. The prevalence group visited 42 different hospitals and 47 clinics. Five rehabilitation clinics, though, were not reported. The study on double sets of social norms found that the individual’s experience in everyday situations runs contrary to the prevailing, expected norms. This results in the individual not being able to identify with everyone else or to rely on the current set of norms. The discussion elaborates on the time frame needed to perform and interpret longitudinal studies, as well as the impact different disability definitions have on the results. The use of the term “being in need of” in this area and how utilization can be estimated are also considered. The consequences of access to services being dependent on the individual’s initiative are examined. This section also highlights that the perspective of the authorities versus that of the individual (i.e. the lived perspective) are not only separate but different, and that the individual may be seen as a burden.