若年性関節リウマチ児の家庭生活と学校生活の実態—生活指導パンフレット作成のための予備調査

Investigation about problems of JRA children's activities at home ＆ school : A preliminary survey for compiling a daily life guidebook

要旨：若年性関節リウマチ(以下，JRA)児の生活指導パンフレット作成の予備調査として，生活実態を把握するために，家庭生活・学校生活・リウマチ症状への対応等についてアンケート調査を行った．対象はJRA親の会「あすなろ会」会員の両親である．その結果，家庭生活よりも学校生活で困難な項目が多く，さらに学校生活では学年が上がるのに伴い困難な項目が増え，困難を感じる項目も多様化していることがわかった．またリウマチ症状にも親は様々な対応をしているが，不安などを抱えながら対処している現状があった．これらの結果を取り入れながら，予防的視点からも利用できるJRA生活指導パンフレットを作成していきたい．

　Purpose : The purpose of this study was to examine the difficulties that juvenile rheumatoid arthritis (JRA) students' have in activities at home and school, and to generate a daily-life guidebook for them in the future.

　Method : A questionnaire was mailed to parents of 75 JRA students (aged between 6 and 18 years), and they were asked about their children's conditions.

　Results : 1) Forty five percent of parents responded that there were some difficulties in bathing and toileting in their home activities. 2) Eighty percent of parents answered there were some difficulties in their school activities that increased as they progressed to each grade. 3) It was most difficult for elementary school students to attend outside classes (i.e., school excursions), and to help with meals and cleaning duties. By contrast, it was most difficult for junior and senior high school students to carry baggage, write, and sit for several hours. 4) Some junior and senior high school students had psychological problems.

　Conclusions : JRA students have more problems with their school activities than in their home activities. It is important for us to guide their home activities as well as their school activities, which become more complicated with each grade. Therefore, we should consider the differences between grades and be cognizant of potential psychological problems. Based on the present findings, we will publish a daily life guidebook for JRA students in the near future.