Illness experience of adults with cervical spinal cord injury in Japan: a qualitative investigation

BMC Public Health

Research Article

Ayako Ide-Okochi¹  Toshie Kusunaga²  Kazumi Fujimura³  Etsuko Tadaka⁴  Yoshihiko Yamazaki⁵ 

[1] Department of Nursing, School of Medicine, University of Ehime, Ehime, Japan;Department of Social Welfare, Faculty of Humanity, Seitoku University, Tokyo, Japan;Graduate School of Nursing, Osaka City University, Osaka, Japan;Graduate School of Nursing, School of Medicine, Yokohama City University, Kanagawa, Japan;School of Social Welfare, Nihon Fukushi University, Aichi, Japan;

关键词: Illness experience;    Biographical reinforcement;    Loss of self;    Social participation;    Social relationship;    Spinal cord injury;   

DOI  :  10.1186/1471-2458-13-69

 received in 2012-07-04, accepted in 2013-01-23,  发布年份 2013

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© Ide-Okochi et al.; licensee BioMed Central Ltd. 2013