《中国康复理论与实践》

《中国康复理论与实践》 ›› 2019, Vol. 25 ›› Issue (10): 1221-1227.doi: 10.3969/j.issn.1006-9771.2019.00.011

• 社区康复 • 上一篇    下一篇

上海脊髓损伤者“希望之家”的现状与发展研究

解海霞1, 杨玉慧2, 吴爱荣1, 沈沉1, 胡龙军2,3, 张佳1, 林佩佩1, 陈刚2, 吕军2, 苌凤水2   

  1. 1.上海市养志康复医院(上海市阳光康复中心)，上海市 201619;
    2.复旦大学中国残疾问题研究中心/复旦大学公共卫生学院，上海市 200032;
    3.同济大学附属第十人民医院，上海市 200072
  • 出版日期:2019-10-25 发布日期:2019-10-30
  • 通讯作者: 苌凤水，E-mail: changfsh@fudan.edu.cn E-mail:changfsh@fudan.edu.cn
  • 作者简介:解海霞(1978-)，女，汉族，河南扶沟县人，心理治疗师，主要研究方向：脊髓损伤患者的心理社会康复
  • 基金资助:
    1.国家自然科学基金项目(No. 71673052)；2.国家留学基金委项目(No. 201506105030)；3.浦江学者项目(No. 17PJC003)；4.上海市残联系统重点学科建设项目(No. [2015]139号)；5.国家社会科学基金重大项目(No. 17ZDA078)；6.国家“十二五”科技支撑子项目(No. 2014BAI08B01)

Status Quo and Development of Hope Houses for Individuals with Spinal Cord Injury in Shanghai from Perspective of Managers and Organizers

XIE Hai-xia1, YANG Yu-hui2, WU Ai-rong1, SHEN Chen1, HU Long-jun2,3, ZHANG Jia1, LIN Pei-pei1, CHEN Gang2, LÜ Jun2, CHANG Feng-shui2   

  1. 1.Shanghai Yangzhi Rehabilitation Hospital (Shanghai Sunshine Rehabilitation Center), Shanghai 201619, China;
    2.China Research Center on Disability/School of Public Health, Fudan University, Shanghai 200032, China;
    3.The Tenth People's Hospital of Tongji University, Shanghai 200072, China
  • Published:2019-10-25 Online:2019-10-30
  • Contact: CHANG Feng-shui, E-mail: changfsh@fudan.edu.cn E-mail:changfsh@fudan.edu.cn
  • Supported by:
    Supported by National Natural Science Foundation of China (No. 71673052), China Scholarship Council (No. 201506105030), Shanghai Municipal Human Resources and Social Security Bureau Pujiang Program (No.17PJC003), Shanghai Disabled Persons' Federation Key Disciplines Construction (No. 2015-139), National Social Science Foundation of China (Major) (No. 17ZDA078) and National Science & Technology Pillar Program during the Twelfth Five-year Plan Period (No. 2014BAI08B01)

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摘要： 目的 分析上海市脊髓损伤者“希望之家”的发展现状与机遇。 方法 2018年6月，针对上海16个区“希望之家”的组织方和管理方开展问卷调查，调查内容涉及基本情况、政策了解情况、活动开展情况、发展障碍和对康复的认知。采用描述性统计、相关性分析方法进行分析。 结果 11名组织方和16名管理方参与调查。组织方对“希望之家”相关政策了解不够。上海8个区(50%)的“希望之家”委托社会组织承办。“希望之家”活动平均开展率60.6%，最高是康复知识培训(96.3%)，法律服务、就业技能培训、康复护理指导、职业转介、医疗转介和教育转介等提供不足。经费、各方共识和专业人员不足是影响“希望之家”发展的关键因素。双方康复认知情况总体良好，但对康复原则和康复价值的认知仍需加强。 结论 上海市脊髓损伤者“希望之家”发展良好，组织方和管理方康复认知水平较高。建议进一步加大资源投入，坚持全面康复原则，在适时扩大服务对象范围基础上加强规范管理，促进重度残疾人康复事业的可持续健康发展。

关键词: 脊髓损伤, 希望之家, 社区康复, 认知评价, 上海

Abstract: Objective To analyze the status quo and development of the Hope Houses for individuals with spinal cord injury (SCI) in Shanghai. Methods In June, 2018, the organizers and managers of Hope Houses from 16 districts in Shanghai were investigated with the self-designed questionnaires, which covered the personal characteristics, knowledge of related policy, development of projects and obstacles, and rehabilitation recognition. The descriptive analysis and correlational analyses were conducted. Results Totally, eleven organizers and 16 managers were investigated. The knowledge of related policy for organizers was not good enough. Eight Hope Houses in 16 districts in Shanghai were operated by social organizations. The average implementation rate of projects in Hope Houses was 60.6%, and the highest was rehabilitation knowledge education (96.3%). There was insufficient provision in legal services, job skills training, rehabilitation nursing guidance, job referral, medical referral and education referral, etc. The main related factors limiting the development of the Hope Houses were lacks of budgets, social consensus and professionals. The rehabilitation cognition of organizers and managers was generally good, but the cognition of rehabilitation principles and rehabilitation value needed to be strengthened. Conclusion The Hope Houses for individuals with SCI in Shanghai work well, and the rehabilitation cognition of organizers and managers is satisfactory. It should be strenghened in resource input, comprehensive rehabilitation and standard of management, to expand the service timely.

Key words: spinal cord injury, Hope Houses, community-based rehabilitation, cognitive evaluation, Shanghai

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