People with spinal cord injury living in the community

Abstract

This Dissertation looks into the community lives of people with spinal cord injury, and addresses problems encountered by these people after leaving the spinal unit, when they start to live in the community once more. In order to understand the dimension of spinal cord injury, a literature review on the physical implications of this disability together with historical aspects of its rehabilitation and epidemiological factors are presented. A literature review and a research study on community re-integration and psychosocial adjustment as the long-term goal of rehabilitation is included. Social factors associated with these long-term goals are also addressed. My research study examines the current social functioning of the researched population and their long-term adjustment within the community, which is a continuous process undertaken throughout the life-cycle and involves a complex interplay of personal, family, social and material factors. The research study, which was carried out in October 1997, included fifteen interviewees whose ages ranged from seventy-one to twenty-one years. The years which have lapsed since their injury ranged from thirty-four years to one year. Most interviewees were injured during adulthood, and all of them had mobility problems. The main sample bias was that all interviewees were receiving assistance from the local spinal unit and most of them had participated in foreign specialised rehabilitation programmes. This bias would lead one to presume that because the sample had access to, and availability of, specialised care, this would result in fewer social and psychological problems and better community re-integration. However, the results did not indicate this. Interviewees reported that hospital services focus on medical and physical aspects of their condition, and that there is a critical gap in the provision of social and psychological support. The provision of community services was found to be distressing and not meeting the needs of its users. Furthermore, community life was found to be restricted due to mobility problems and a system which reinforces their disability rather than their ability. Of critical importance is the social support these people receive to aid their community re-integration. The most commonly received social support was that given through the family and friends. Alarmingly enough, however, most interviewees mainly relied on their inner strength to re-integrate into the community. The main conclusion of this research study is that the continuity of care by the spinal unit and community services that these people need to aid their community re integration and long-term adjustment is absent and, therefore, this desired end is not met. The implications of this are that spinal-injured people are not enabled to integrate in their community after the occurrence of spinal cord injury. From my research findings, three main recommendation clusters emerge, the implementation of which would enhance the long-term adjustment process and community re-integration for spinal-injured people. Social policy issues and the local social services system are dealt with first. The second cluster of recommendations addresses how rehabilitation services should be continuous rather than piecemeal. The third significant recommendation is that the social worker be a rehabilitation professional and an integral part of the multi-disciplinary team at the local spinal unit. This latter recommendation is specifically designed to provide for the psychological and social needs of spinal-injured people and their families thus achieving holistic rehabilitation care.