Abstract
BackgroundThere is growing recognition that healthcare policy should be guided by the illness experience from a layperson’s or insider’s perspective. One such area for exploration would include patient-centered research on traumatic Spinal Cord Injury (SCI), a condition associated with permanent physical disability requiring long-term and often complex health care. The chronicity of SCI can, in turn, affect individuals’ sense of self. Although previous research in Western countries suggests that people with SCI find a way to cope with their disability through social participation and family bonds, the process of adjustment among people with cervical SCI (CSCI) living in Japan may be different because of the restrained conditions of their social participation and the excessive burden on family caregivers. The purpose of this study was to examine the impact of injury and the process of accommodation in people with CSCI in Japan.MethodsSemi-structured home interviews were conducted with 29 participants who were recruited from a home-visit nursing care provider and three self-help groups. Interviews were recorded, transcribed and analyzed based on the grounded theory approach.ResultsFive core categories emerged from the interview data: being at a loss, discrediting self by self and others, taking time in performance, restoring competency, and transcending limitations of disability. Overall, the process by which participants adjusted to and found positive meaning in their lives involved a continuous search for comfortable relationships between self, disability and society.ConclusionsThe results of this study suggest that persons with CSCI do not merely have disrupted lives, but find positive meaning through meaningful interactions. Family members added to the discredit of self by making the injured person entirely dependent on them. Gaining independence from family members was the key to restoring competency in people with CSCI. At the same time, social participation was pursued for transcending the limitations of disability. The results also imply that social issues affect how people interpret their disability. These findings suggest that public health policy makers should recognize the need to enhance independence in people with disability as well as change the social assumptions about their care.
Highlights
There is growing recognition that healthcare policy should be guided by the illness experience from a layperson’s or insider’s perspective
Five main themes emerged from the data. These themes revealed the impact of cervical SCI (CSCI) on people’s lives and how they reconstruct their life after the onset of disability
This participant spoke of his disappointment when he could not find even a small improvement after surgery performed by physicians a year after the onset of disability
Summary
There is growing recognition that healthcare policy should be guided by the illness experience from a layperson’s or insider’s perspective. One such area for exploration would include patient-centered research on traumatic Spinal Cord Injury (SCI), a condition associated with permanent physical disability requiring long-term and often complex health care. In Japan, it is estimated that more than 100,000 persons suffer from spinal cord injury (SCI), and that 5000 persons incur a SCI each year [1] Of these persons, the proportion with cervical SCI (CSCI) is estimated at about 60% [2]. Bury [4] regarded chronic illness as constituting a major disruptive experience in the past, present, and future — what he termed a ‘biographical disruption.’ Charmaz [5] developed the idea of ‘loss of self’ [5], in which people with physical disabilities experience the interaction between self and significant others as having a negative impact on their social life and self-image
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