@article{oai:kumadai.repo.nii.ac.jp:00031195,
 author = {Okada, Junya and Yahara, Takayuki and 岡田, 純也 and 矢原, 隆行},
 journal = {熊本大学社会文化研究},
 month = {Mar},
 note = {application/pdf, 論文(Article), A review of the literature was conducted on research into patient associations for patients with intractable diseases in Japan to analyze the present situation. The online version of Igaku Chuo Zasshi was used to examine subjects of research and to collect data. Original papers retrieved using the key words "intractable disease" and "patient association" and published in or before 2000 and up to 2018 were subject to analysis. A total of 44 papers were ultimately analyzed. Ten papers (22.7%) were published in or before 2000 and between 2015 and 2018, 21 papers (47.7%) were on research in the nursing field, 28 papers (63.6%) were on research with a quantitative study design, and 26 papers (59.1%) were on clinical studies. The content of research into patient associations for intractable diseases in Japan was categorized into "research into activities of patient associations", "research into the care by medical professionals,", "research into improving the quality of medicine", and "research into the needs of patients and family". The trends suggested that most of these studies are in patients, the content of research is often "research into the needs of patients and family" and "research into the activities of patient associations", and that patient associations are an outlet for solving problems.},
 pages = {205--214},
 title = {難病患者の患者会研究に関する文献検討},
 volume = {17},
 year = {2019}
}