罕见病儿童家庭压力分析-中国残疾人联合会.pdf

/ 理论研讨/Theoretical Discussion 罕见病儿童家庭压力分析* ——基于生态系统历程整合视角 ■纪文晓 范斌 【摘要】 儿童罕见病对患儿和家庭带来了灾难性的冲击，也是致残的原因之一，应当引起 有关方面的充分关注并予以有效应对。通过罕见病患者生存状况问卷调查及对罕见病儿童家 庭进行的深度访谈可知，罕见病儿童家庭面临着诸多复杂且沉重的压力，包括来自疾病本身、 早期疗育、康复、照顾者身心负荷、家庭经济状况、医护关系、医疗保障、就学就业、社会 参与等多生态系统在内，涵盖疾病诊断、危机应对、慢性持续期及临终等各个方面，需要研 究制定针对性的专业化支持与服务措施。 【关键词】 儿童罕见病 ；致残家庭 ；压力 ；生态系统 Analysis on Family Pressure of Families with Rare Disease Children -- Based on Ecological System Process Integration Perspective JI Wen-xiao, FAN Bin 【 】Rare disease is a disastrous hit to the suffering children and their families as well Abstract as a cause of disability, which should be paid more attention to handle. Based on questionnaire of rare disease patients’ living conditions and interviews with families with rare disease children, this paper found out that many complicated and heavy burdens were faced by these families. Pressures were from multiple ecological systems including disease itself, early treatment, rehabilitation, physical and emotional burdens of cares, family economic conditions, relation between doctor and patient, medical security, attending school and employment and social participation, which covered disease diagnosing, crisis dealing, chronic persistent period, terminal stage. Therefore, more targeted professional support and service measures should be studied and implemented. 【 】Rare disease children; Families with the disabled; Pressure; Ecological system Key words [ 中图分类号 ]R172 [ 文献标识码 ]A [ 文章编号 ]2095-0810(2015)17-0024-07 引言 病，因此罕见病中的儿童也为数众多。而且这些病 罕见病又称“孤儿病”，是从患病率角度来归纳 并发症较多，死亡率和致残率也很高，是一个重要 出的一个彼此之间没有关联的疾病群，包括数千种不 的公共健康问题，给包括社会福