Perceptions of interpersonal relationships held by patients with obstinate disease

Eubios Journal of Asian and International Bioethics 15 (1):32-34 (2005)
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Abstract

The objective of this study was to reveal the problems related to interpersonal relationships which patients with obstinate diseases face, and consider the behavior, attitude and medical intervention that healthcare and healthcare-related professions should take in regards to these problems. Semi-structured individual interviews were conducted with patients with obstinate neurological diseases and observation of outpatient care was also conducted. Data were analyzed by qualitative content analysis. Patient diseases included Parkinson Disease , Amyotrophic Lateral Sclerosis , myasthenia gravis, spinocerebellar ataxia , and progressive supranuclear palsy . Findings highlighted that patients’ disease and suffering was not understood fully by patients’ families, that patients feel a lack of family support and cooperation, and that society’s level of understanding of their disease was also insufficient. Again, findings revealed that patients recognized their inability to perform personal activities and to behave competently within the contexts of family and society. This lowered their self evaluation. These findings highlight three needs: “the need for empathy,” “the need for self the “the need for empathy” and “the need for self esteem.”This study was supported by a great-in-aid by Ministry of Health, Labor and Welfare in Japan, “Outcomes Research of Specific Diseases”(PI:S.Fukuhara)(Grand no: H14-44)

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