中国-荷兰麻风病防治合作卫生系统研究课题
农村社区麻风家庭和社会歧视及其影响因素研究总结报告
浙江省麻风歧视科研协作组
Sino-Netherland leprosy control cooperative HSR project summary report on leprosy discrimination and its affecting facotors in family and rural community
Leprosy discrimination coordinative research group in Zhejiang,China
麻风歧视系指社会对麻风病人及其家庭和相关人员采取贬低、疏远、敌视的态度和行为。麻风歧视是一个全球现象，发生在麻风流行区和非流行区。麻风歧视是麻风导致的主要公共卫生问题之一，其严重性往往比麻风疾病本身更令患者痛苦。麻风歧视可以表现在个体，家庭，社区以及制度和政治法律层面。在医疗，教育，就业，社交，婚姻等许多领域麻风歧视都可以一定程度存在，目前，尽管麻风治疗已经取得了重大的进展，但是麻风的歧视问题依然存在，现有的健康教育以及麻风控制策略对麻风歧视问题的解决效果还实在不够令人满意。研究麻风的歧视问题及其解决方法对于进一步减轻麻风病的负担，系统处理麻风病所导致的所有公共卫生问题均具有极其重大的意义。在荷兰麻风救济会的支持下，我们在浙江绍兴、萧山、余杭、桐乡、上虞和海宁等既往麻风流行地区开展了农村社区麻风歧视的专题研究工作，现将研究结果报告如下。
Leprosy discrimination is referred to the depreciated ,estranged and hostile attitudes or behaviors against leprosy affected people,their families and related persons conducted by society members. It is a worldwide phenomenon, occurring in the leprosy popular and the non-popular area. Discrimination is one of the main public health questions caused by leprosy, Its severity often makes the patient more pain than the disease itself. Leprosy discriminates may manifest in the individual, the family, the community as well as the political ,law or system levels. leprosy discrimination can present in the medical service, the education, the employment, the public relations, the marriage and so on to some extent.At present, although leprosy control have already made the significant progress, but leprosy discrimination still exists, and the health education as well as leprosy control policy play a little effect in solving the question , getting a really not good satisfaction.So we must conduct the leprosy discrimination research to alleviate the leprosy disease burden ,and systemically tackle with all public health problems due to leprosy. Under the support of Dutch Leprosy Relief , we have made a special study of leprosy discrimination in Shaoxing, Xiaoshan, Yuhang, Tongxiang, Shangyu , Haining and other leprosy endemic areas in Zhejiang ,China .Now the summary report is as follows.
（一）课题研究的目的和内容
1本课题的研究目的如下：
（1） 了解浙江省农村社区麻风歧视的流行现状及其具体情形，为今后开展的歧视干预活动提供基础性的资料；
（2） 掌握麻风歧视形成的具体机制及其相应的影响因素，为今后开展的麻风歧视干预活动提供策略和措施的指导。
（3） 开发出测定麻风歧视的有关量表及评估工具，为今后麻风歧视高危对象的筛选提供方法的准备；
（4） 通过课题实践培养出一支高水平的麻风防治与学术研究队伍，并促进浙江省麻风防治工作方向和重点的转变。
(一)Objective and contents of the research:
1The aims of the study is as follows:
(1) Understand the present situation and its concrete conditions of leprosy discrimination in Zhejiang Province, China,to provide the foundational materials for the future discrimination intervention activity development;
(2) Grasp the pathological mechanism and its affecting factors of leprosy discrimination to form the counter strategies and measures .
(3) Develops leprosy discrimination scale and evaluation tools,to provide the screening method of intervention objects in high risk .
(4) Cultivate a leprosy control and academic research contingent with high levels, through the project activities,and promote the changes of leprosy control directions and focus point in Zhejiang Province ,China.
2本课题研究的具体内容有：
(1)浙江省麻风病防治工作及健康教育的现状研究；
(2)浙江省农村社区麻风歧视的定性研究；
(3)农村社区干部，群众及麻风病人家属的知识-态度-行为研究；
(4)医疗，家庭，社区领域麻风歧视流行现状及其影响因素研究；
(5)麻风受累者自我歧视与外在歧视的关系及麻风歧视形成的机制研究；
(6)麻风受累者社会参与状况及参与量表在中国使用适应性研究；
(7)麻风病人家庭职能，社会支持及麻风防治一体化与麻风歧视的关系研究；
2Concrete contents of the research are belows:
(1) Study on the present situations of leprosy control and health education in Zhejiang Province ,China.
(2) Qualitative research of leprosy discriminates in rural community in Zhejiang Province;
(3) Knowledge - attitude - behavior research of community cadre, masses and leper family member;
(4)Leprosy discrimination prevalent situations and its affecting factors in medical service, family, community ;
(5)Research on relations of self-discrimination and the external discrimination ,as well as the mechanism of leprosy stigma.
(6)Status of social participation of leprosy affected people and the suitability of The Participation Scale ,suggested by the international paticipation scale development group,in China.
(7)Research on the relations of family function, social support and integrated leprosy control service as well as the leprosy discriminations.
（二）课题研究的进程
1.2008年10月
进行麻风健康教育与歧视的文献综述与查新工作；
开展麻风歧视的有关表格初步设计；
开展住院麻风病人家庭职能小样本调查；
开展住院麻风病人社会交往中歧视感知小样本调查；
(二)Research process:
1. October, 2008
carried out the paper review and novelty search on leprosy health education and the leprosy discrimination;
carried out the preliminary design of the related forms of leprosy discriminates;
conducted a small sample family function investigation in hospitalized leprosy patients lived in Wukang sanatorium.
Had a small sample survey on leprosy stigma perceived by the leprosy patients lived in colony . 2.2008年11月
召开麻风歧视课题组成立会议，明确各自分工，并聘请中国CDC麻风病控制中心严良斌和张国成教授为技术顾问；
召开麻风歧视课题技术研讨会，确定课题调查表格及技术标准；
对麻风歧视课题组全体人员进行业务培训.
2. November, 2008
Convene a research group foundation meeting,determining the staff responsibility and engaged Professor Yan Liangbin and Zhang Guocheng ,who work in National Leprosy Control Center,as the technical advisors;
Hold a symposium on leprosy discrimination ,determining the final research forms and technical criteria.
Had a techinical training on the whole personnels of the research group.
3. 2008年12月
召开全省有关单位中国荷兰卫生系统研究麻风歧视项目会议暨人员培训会议。
开展麻风防治机构医务人员对于防治质量的自我评估调查；
开展2008年麻风健康教育现状调查工作；
开展麻风防治专业人员麻风知识-态度-行为调查；
开展麻风防治机构医务人员麻风医源性歧视调查；
3Dec. 2009
Had a project implementation conference and the grass-root level workers training course.
Underwent an self-evaluation investigation on the leprosy control quality by the medical staffs worked in leprosy control agencies.
launched a survey of leprosy health education of leprosy control agencies in 2008 . launched a KAP survey among 42 full-time leprosy control workers.
Made an investigation of iatrogenic discrimination in leprosy control agencies.
4. .2009年1月---3月
在浙江桐乡开展农村社区麻风歧视的定性研究
开展社区麻风病人家庭职能调查
开展麻风病人社会支持状况的专题调查
在200名乡村医务人员中开展麻风防治一体化对于麻风歧视的影响评估工作
4From Jan.2009 to March 2009
Made a qualitative investigation of leprosy discrimination in Tongxiang , Zhejiang,China.
Conducted a family function survey among community leprosy affected people.
Undertook a social support status study of leprosy suffered persons.
Had an evaluation on the effect of reducing leprosy stigma due to integrated leprosy control services among 200 rural medical staffs.
5. 2009年4月-8月
开展麻风病人，病人家属，乡村干部，社区群众，乡村医务人员麻风知识-态度-行为调查.
开展麻风歧视的重点领域：家庭，农村社区，基层医疗服务中歧视状况及其危险因素的专题调查.
开展国际参与量表开发小组开发的参与量表在麻风受累者中使用的适应性专题调查.
5From April 2009 to August 2009
Leprosy KAP survey was performed among leprosy patients,patient’s family members,rural cardres,community masses,and the rural medical staffs.
An investigation on leprosy discrimination status and their influencing factors in the key regions such as family,rural community and medical services was done..
A special study on the suitablity of the Participation Scale ,suggested by the international Participation development group,was made in leprosy affected persons.
6. 2009年9月
对于各地收集上报的资料进行分析汇总，并撰写相应技术报告。
召开麻风歧视课题总结会议；
向有关单位分发课题技术汇编及总结报告。
6Sep 2009
Collected and analysized the data reported by the project units ,and wrote the technical thesis.
Held a summary conference of the project.
Distributed the project materials compilement and the summary report to the concered stakeholders.
（三）课题研究结果
1 基础研究的结果：
（1）分层随机选取浙江省承担麻风病防治工作的省市县有关机构40所为调查对象，现场问卷调查各单位有关技术负责人员，同时收集上述机构2008年麻风病防治有关统计报表，结合日常对上述机构麻风防治工作督导检查情况，全面分析其2008年麻风病健康教育开展情况。结果：2008年40所单位中24所（60%）开展了46次麻风病健康教育活动。有麻风健康教育工作计划的单位占52.5 %（21/40），有麻风健康教育检查考核制度者占45 %（18/40），全年有麻风健康教育经费支出者占57.5 %（23/40 ）。麻风健康教育的目标人群以医院就诊病人(23.91%)以及城镇居民(17.39 %)和医务人员(15.22%)为主，文字形式的传播形式占43.48 %，采取综合传播形式的健康教育活动者占23.91%，进行了健康教育需求与效果评估者计5次，占10.87%（5/46）。健康教育经费缺乏和宣教材料的缺乏以及相关领导重视不够、业务指导少是浙江省麻风健康教育存在的主要问题。 结论：浙江省麻风健康教育工作应予以加强，在麻风健康教育的组织管理、经费保障、传播方式、目标人群等方面要进行相应调整改进。
40 control agencies ,chosen by stratified sampling,were investigated through questionnaire of head technician of leprosy control, collecting the statistical forms ,as well as the supervision reports of leprosy control work,to get the exact situation of leprosy health education of these organs in 2008. Results: 24 out of 40 agencies carried out 46 pieces of leprosy health education in 2008,accounted for 60%. 52.5 %（21/40）agencies have made a leprosy health education plan, 45 %（18/40）agencies have the examination and check-up regulations of leprosy health education. 57.5 %（23/40 ）agencies have the expenditures on leprosy health education in 2008.The targeted population of health education mainly were the out-patients(23.91%),town residents(17.39 %),and the medical staffs(15.22%). Written propaganda were the main communication forms of health education ,representing 43.48 %. The health education adopted complex communication forms accounted for 23.91%.5 pieces of health education requirement and effect evaluation(10.87%) were made by 4 agencies in 2008. The main problems of leprosy health education in Zhejiang Province were firstly the shortage of funds and the propaganda materials, secondly the less attention of the leaders as well as the less supervisiou of the higher organs. Conclusion: We feel that the leprosy health education in Zhejiang Province should be strengthened.Adjustment and improvement in administration,funds supply,communication forms,targeted objects ,et al ,are necessary.
（2）了解我省农村社区麻风受累者对麻风防治服务的满意度及具体需求情况，为改进目前的麻风防治服务策略与措施提供基础性资料。 方法：自行设计有关调查问卷，由当地麻风防治医务人员对216名麻风受累者进行面对面调查，采用Excel 2003统计软件对收集的问卷数据进行分析。 结果：被调查的216名麻风受累者中，155例（71.76%）对现行的麻风防治服务表示满意的态度，一般者58例（26.85%），不满意者3例（1.39%）。麻风受累者优先的麻风防治服务形式以“价廉，免费或报销的麻风防治服务”居首位（37.06%），其次为“ 保密的防治服务”（23.15%）和“登门的防治服务”（21.30%）；麻风受累者对麻风防治服务最优先的内容是麻风眼手足残疾的预防与治疗（32.87%），其次为麻风歧视的社区干预（24.54%）。 结论：我省麻风病防治服务基本得到病人的认可，但在服务的有关形式和具体内容方面还需作相应的改变。
To understand the satisfaction and requirements of prevention and cure services among leprosy patients lived in rural community of Zhejiang Province, in order to provide the basic information for improving the current prevention and cure strategy. Methods Using the self-designed questionnaire to investigate the multi-stage sampling selected 216 leprosy patients lived in the rural communities face to face, and the data collected were analyzed with the Statistics Software Excel 2003 and SPSS11.5 for Windows. Results 155 cases (71.76%) were satisfied with the current Leprosy prevention and cure services, generally in 58 cases (26.85%) and unsatisfactory in 3 cases (1.39%). The first preferred form of leprosy prevention and cure services was "cheap, free or reimbursement of leprosy prevention and cure services"(37.06%), followed by” confidential services" (23.15%) and "door service" (21.30%). The highest priority content was the prevention and treatment of hands, feet and eyes disability (32.87%), followed by the community intervention against leprosy discrimination. Conclusion The Leprosy prevention and cure services in our province has basically been the patient's recognition, but we should change the form and specific content of services.
（3）通过对麻风防治机构医务人员对麻风防治工作质量认可程度的调查，为后续研究提供基础数据，为防治政策的制定提供参考。 方法：采用定量与定性研究相结合的方法从卫生人力资源的使用、具体防治业务工作的效果以及目前最急需改进麻风防治工作的选择等方面对近5年浙江省麻风防治工作质量进行评价。 结果：77例防治机构医务人员对麻风防治工作总体评价认可度：认为较好者54例（70.13%），一般者14例（18.18%），较差者9例（11.69%）。从卫生人力的投入来看，医务人员参与最多的为残老麻风病人疗养（42.86%）以及麻风病人的诊断治疗工作（24.68%），参与较少的为麻风残疾预防（11.69%）以及麻风社会经济康复工作（12.99%）。医务人员对麻风防治具体业务工作认可度最高者为治愈残疾病人的随访监测（2.78士0.53）和现症病人的诊治工作（2.73士0.60），对于麻风病健康教育（2.05士0.69）以及麻风病人医疗与康复服务的利用（1.99士0.77）认可度最差。目前浙江麻风防治最急需改进的工作为社会大众的麻风健康教育、流动人口的麻风发现工作、基层麻风检验人员的配备与能力建设。15例关键人物深入访谈显示基层麻风防治与综合卫生服务的结合在人员能力建设以及疾病预防控制系统与临床医疗系统整合分工上有待改进。 结论：总体而言医务人员对浙江省麻风防治工作质量认可度较高，但加强新形势下麻风防治工作模式的探索与实践仍十分必要。
To evaluate the recognitions of leprosy control service among medical staffs in leprosy control agencies, to provide baseline data for sequence studies and formulating policies. Methods:Qualitative and quantitative methods were conducted in 77 health staffs in Zhejiang leprosy control agencies, to assess the quality of leprosy control work in later 5 years in Zhejiang,from the aspects of the use of health human power,effect of each control method and the leprosy service priority card choose. Results:High good general recognition (70.13%) of leprosy control service in Zhejiang was received in the investigated persons. From the view of human power put,control staff participated mostly in disabled elder patients medical care (42.86%) and the diagnosis and treatment of leprosy patients (24.68%).POD(11.69%) and social and economical rehabilitation (12.99%)are seldom participated in later 5 years. Cured and disabled patients follow-up and surveillance(2.78士0.53) and active patients diagnosis and treatment work (2.73士0.60)were highly recognized by medical staffs,while leprosy health education (2.05士0.69) and the utilization of medical and rehabilitation facilities of patients (1.99士0.77) were less recognized .When medical staffs were asked to list their priority of leprosy control work,they considered mass health education,floating popuation case-finding work and leprosy laboratory technician equipment and capacity construction ,as their top three items.Semi-structured interviews in 15 persons showed that the leprosy control staff’s abilities construction and cooperation of CDC with medical agencies be improved due to the reform of integration of leprosy service with general health service system. Conclusion:The leprosy control service in Zhejiang received high recognition in medical staffs generally.But it is necessary that new models of leprosy control service in the new situation be explored and practiced.
2 定性研究的结果：了解浙江桐乡市农村社区麻风歧视的相关情况，为今后开展的麻风歧视干预活动提供科学依据。方法：采用定性研究方法中的半结构式个别深入访谈对我市3个农村社区的52例居民进行调查。 结果：我市农村社区仍存在一定程度的麻风歧视，其程度与有无麻风新发病人及当地社区文化有着密切的关系。麻风歧视以社区居民对麻风病人的隐性态度歧视和对近距离的吃饭、喝酒、握手及与小孩接触排斥行为为常见。麻风歧视对病人心理有着巨大影响，病人自我歧视相当普遍，更加重了社区对麻风的歧视。解决麻风歧视必须采取综合性措施，注意加强麻风健康教育活动和病人的能力建设，并充分发挥村干部和医生的重要作用。 结论：农村社区麻风歧视的干预十分必要，应作为麻风社区康复的主要内容和今后麻风防治工作的重点方向。
To understand the current situation of leprosy discrimination among rural community members in Tongxiang City , Zhejiang Province, China ,so as to provide scientific evidence for the coming leprosy discrimination intervention activities. Methods: Qualitaitive study method such as semi-structured in-depth interview was used in the selected samples of 52 cases in 3 rural communities. Results:Leprosy discrimination is prevalent to some extent in our rural communities,which is closely related to whether or not occurring new leprosy cases and local community traditional cultures.The common discrimination manifestation were the concealed rejection attitude towards leperosy affected persons and some intimate social-interpersonal activities such as dining together ,shaking hands,and playing with children.Leprosy dicrimination brings great harms to leprosy mentality and self-loathing in lepers is popular ,which leads to more deteriorated leprosy discrimination in communities.Comprehensive mearsures must be carried out in solving community discrimination towards leprosy,which included intensifying health education and the empowerment of leprosy patients,bringing the community leaders and medical staffs into full play,et al. Conclusion:It is necessary to develop discrimination intervention in rural communities.We must take it as the main contents of leprosy community rehabilitation and the focused direction of future leprosy control works.
3 各种人群麻风知识-态度-行为的调查结果：
（1）了解农村社区干部对于麻风的知识-态度-行为现状，为农村社区麻风防治的政策倡导与策略改革提供科学的依据和参考。方法：经过多阶段抽样的方法选择浙江省三个麻风流行县（市）的有关镇（乡）村干部进行问卷调查，调查由当地麻风防治医生进行，问卷本人自填，当场回收。 结果：121例农村社区干部中接触过麻风知识者89 例（73.55 %），知晓麻风病属于丙类传染病者占14.88%，麻风病会发生残疾者占66.12%，知道麻风病可以在家庭治疗者占22.31%，知道每年有个“麻风节”者为25.62%，知道国家实行麻风病的免费救助政策者为52.07%；认为得了麻风病可以正常工作者为25.62%，麻风病人及子女可以在校读书者占59.50%，认为麻风病人可以结婚者占22.31%，认为麻风病人可以参加社区会议者占27.27%；对社区群众得了麻风应在麻风病院隔离治疗或送走者占 76.03% ，而认为本人得了麻风应在麻风病院隔离治疗或送走者仅占10.74%；认为应开展社区麻风防治知识宣教者占85.95%，认为应大力开展社区麻风防治工作者占90.91%。 结论：加强对农村社区干部麻风防治知识更新和政策倡导，提高社区领导对麻风受累者权利保护意识和防治参与力度，是当前麻风病防治工作的优先内容之一。
To identify the current status of knowledge-attitude-behavior towards leprosy among rural community leaders ,to provide basic data foe policy advocacy and strategy-making towards leprosy in rural community. Methods:All the studied officials were chosen by multi-phase sampling from 3 leprosy epidemic counties.The questionnaire was self invented and the survey was conducted by the local toenship leprosy control workers. Results:89 out of 121 rural community leaders have acquired leprosy knowledge from many routes.Of the survey subjects 14.88% knows leprosy is the type C lawful infectious disease.66.12% knows leprosy can produce disabilities.22.31% knows leprosy can treat at home.25.62% knows there is a “Leprosy Day”. 52.07% knows the policy of free treatment of leprosy carried by country.25.62% agrees to “leprosy patients can have a normal work rights”. 59.50% agrees to “leprosy patients and their generations can study in the schools”.22.31% consent to the rights of marriage of leprosy patients.27.27% regards that leprosy patients can attend the community meetings normally.Supposing the community members suffred from leprsoy,76.30 chose “segregate the patients from the community population ”,whereas if himself did it,only 10.74% leaders chose the same .85.95% township or village level cardres thinks it is necessary to carry out leprosy
health education in the community and 90.91% feels that we must strongly develop community leprosy control activities in rural communities. Conclusion:It is one of the urgent priorities of current leprosy control work to reinforce leprosy knowledge renewal and policy advocacy and highten up the protection sense of leperosy patients’ human rights and thedegrees of control work participation among rural community leaders.
（2）研究麻风受累者家属的疾病相关知识-态度-行为，为开展针对性健康教育提供指导。 方法：使用多阶段抽样方法对从浙江省既往四个麻风流行区绍兴、上虞、桐乡、萧山选择的278例患者家属进行疾病相关知识-态度-行为调查，调查问卷自行设计，由当地麻风防治人员登门调查，表格当场填写完成。 结果：278例麻风受累者家属麻风相关知识总体知晓率为66.91% ，知晓麻风会出现皮肤损害，可以在家庭治疗，治疗多长时间者分别占47.12%，42.45%和43.88%，但对于不规则服药的害处，本地麻风防治机构，治愈后注意事项的知晓率均在80%以上；在态度方面，愿意与病人一起生活者为82.01%，愿意与病人一起吃饭者为57.91%，但是不害怕麻风者仅为28.06%。在行为方面，督促病人规则治疗与残疾预防者占87.41%，在病人苦闷时予以劝解疏导者占57.91%，曾经接受麻风体检者占51.44%，寻求过服用药物预防麻风者占17.99%。 结论：麻风受累者家属相关知识有待提高，促进麻风病人家属对病人的心理疏导以及提高麻风病人家属的麻风预防保健意识十分必要。
To study the knowledge-attitude-behavior status towards leprosy among the families of leprosy affected persons,to give guidance for the directive health education of leprosy. Methods:The studied objects were chosen by the multi-phase sampling from four leprosy prevelent regions in Zhejiang,China. The questionnaires were self-designed and the survey was conducted by the local leprosy control staffs. Results:The awareness rate of leprosy knowledge in a total of 278 families of leprosy affected persons was 66.91%,in which the rates of knowing leprosy skin lesions,home-treated styles and the treatment duration were accounted for 47.12%，42.45%和43.88% respectively.And the rates of knowing the consequences of irregular treatment ,local leprosy control agency,the notice items after cure were all represented over 80%.In the attitude towards leprosy,the rate of willing to live with patients together accounted for 82.01% and the rate of willing to have dinner with patients for 57.91%,but unfortunately the persons who were scarced of leprosy represented 71.94%.In view of behaviors towards leprosy,87.41% families have urged lepers to follow medical advice and carry out POD,57.91% have persuaded the patients when they were depressed,51.44% have accepted leprosy physical examination and 17.99% have seeked for sef-prevention from leprosy by taking anti-leprosy medicines. Conclusions:The level of knowledge towards leprosy among the families need to be rasied .It is necessary to promote the mental health counselling to lepers borne by the families and improve the self health-keeping sense towards leprosy among the families.
（3）了解浙江省农村地区居民麻风病知识水平及其健康教育需求状况，为开展针对性麻风健康教育提供科学依据。 方法：采用问卷调查的方法由当地麻风防治人员在浙江4个麻风流行县 （市，区）的农村对居民进行登门调查。 结果：259例农村居民中190例农村居民接受过麻风防治知识宣传，占73.36%。72.59%知晓麻风病的病因，61%知晓麻风会出现皮肤麻木。45.56%知晓麻风会发生皮肤损害，52.90%知晓麻风会出现手足残疾，74.13%认为麻风可以治愈。61.78%知晓国家实行麻风免费治疗的政策，但知道麻风可以家庭治疗者仅为27.80%。在农村居民最知晓的传染病方面，艾滋病，病毒性肝炎分别以27.80%，20.85%的构成比远高于麻风的13.51%。82.63%农村居民愿意接受麻风健康教育，对于麻风健康教育的形式，电视最受群众欢迎(56.37%)，其次为传单(35.91%)，再次为书报杂志(21.24%)，宣传画(15.83%)，广播(20.08%)，与医务人员交谈(15.83%).62.93%群众最喜欢了解关于麻风传染发病方面的内容。 结论：浙江省农村地区居民部分麻风知识知晓程度较低，应根据群众对于麻风知识传播形式与内容的喜好情况开展针对性健康教育，提高麻风健康教育的效果。
To understand the knowledge level and health education demands of leprosy among population in the rural community of Zhejiang,China,and so as to provide scientific evidence for the aimed health education work of leprosy. Methods:Quantitative study method of questionnaire was used in the samples selected by the multi-phase sampling method among the inhabitants of 4 counties in Zhejiang,China.The survey was carried out by the local leprosy control staffs . Results:190 out of 259 residents have accepted the leprosy education,accounted for 73.36%.The inhabitants knowing the causes of leprosy,the symptom of numb skin , having skin lesions,having hand and foot disabilitiesm ,a curable common disease represent by 72.59%,61%,45.56%,52.90%74.13% ,respectively.61.78% residents knows the police of free-treatmemt of leprosy,but only 27.80% inhabitants are aware of the fact that leprosy can treat at home.Comparing the awarest infectious disease of rural residents,the ones of AIDS (27.80%)and Viral Hepatitis (20.85%)are more higher than that of leprosy(13.51%).82.63% residents are willing to accept the leprosy health education.The popular ways of leprosy health education are lined as TV(56.37%),propaganda paper (35.91%),magazines and newspaper(21.24%), broadcast (20.08%),propaganda picture(15.83%), and inter-communication with medical staffs (15.83%) in turn.62.93% inhabitants like to obtain the knowledge related to the infection of
leprosy first. Conclusions:The rural community members of Zhejiang have a poor awareness of some leprosy knowledges.We must carry out the aimed leprosy health educationg according to the tastes of the inhabitants in the communication methods and contents,to improve the effectiveness of leprosy health education.
4 医疗，家庭，社区麻风歧视及其影响因素研究结果：
（1）调查麻风防治机构医务人员对麻风的认知现状与各种医源性歧视的形式、水平，探讨减少和消除医务人员对麻风医源性歧视的方法。 方法：采用不记名问卷的方法对浙江省麻风病防治机构的77名医务人员进行调查。 结果：麻防机构医务人员麻风基本知识水平范围0-10分，平均得分5.82士2.32 分，处于中等水平。近5年内77名医务人员中有61例接受过麻风培训，占79.22%。医务人员在麻风病的诊断标准以及麻风病和反应的治疗方面知识比较欠缺。在医疗活动中接触麻风病人时觉得害怕恐惧者占5.19 %（4/77），有些害怕者占23.38 %（18/77），不害怕者占71.43 %（55/77）。麻防机构较常见的医源性歧视形式分别为：最后给病人辅助检查（79.22%），隔离或特别对待病人（70.13%），麻风服务后特别消毒处理（68.83%），最后治疗处理病人（67.53%），透露病情给家人同事（53.25%），而接待病人不主动（23.38%）或推诿病人（18.18%）的情况较少。40.26%的医务人员认为解决麻风医源性歧视的首要方法为加强对医务人员的教育培训。 结论：在麻风防治机构医务人员中对麻风患者的歧视一定程度存在并被忽略，加强对医务人员的教育培训是解决麻风医源性歧视的有效方法。
To study the knowledge level of medical staff in leprosy control agency and their discrimination form and extent towards leprosy ,as well as the methods of eliminating iatrogenic stigma. Methods: The anonymous questionnaire survey was carried out among 77 medical personnels worked in leprosy control agencies in Zhejiang. Results:The knowledge score of medical personnels ranged from 0 to 10,with an average score of 5.82士2.32.During the later 5 years,61 out of 77 persons accepted leprosy training,accounted for 79.22%.The staff are deficient in the knowledge including leprosy diagnosis criteriam,treatment drugs of leprosy and reaction,et al.Among 77 staff,4 cases (5.19 %)feel scared ,18 cases (23.38 %) a little scared and 55 cases(71.43 %) without any scare when encountering lepers. The common discrimination forms in leprosy control agency were as follows:giving the last subsidiary examination to lepers(79.22%), treating patients with isolation or similar manner(70.13%),special disinfection after service for lepers(68.83%), giving the last treatment (67.53%),letting out the patients’ condition to family memebers or colleagues(53.25%).The situations of admitting patients inactively （23.38%）or irresonable transfering patients to others （18.18%）are very rare. 40.26% medical personnels feel that strengthening the training of medical staff is the most effective method to eliminate iatrogenic stigma towards leprosy. Conclusion:The discrimination towards leprosy in leprosy control agency is popular to some extent and negelected.Strengthening the training of medical staff is very necessary in leprosy discrimination intervention.
（2）了解我省县级以上麻风病防治专业人员对麻风病的知识、态度和行为情况，为相关麻风防治政策的制定以及麻风医源性歧视的干预提供依据。 方法：应用自行设计的有关麻风病的知识-态度-行为问卷对部分省市县专业麻风防治人员进行不记名调查，资料输入计算机进行描述性统计分析。 结果：42名麻风防治专业人员对大多数麻风病的基本知识知晓率较高，且对于麻风病的正面的态度和行为均在80%以上。但在麻风病的诊断标准，治疗药物，并发症处理等知识点上知晓率较低，个别专业防治人员害怕和歧视麻风病人现象严重。 结论：在新的防治形势下，加强专业人员的麻风能力建设仍然有其必要，促进防治人员与麻风病人的更多接触与交往是最大限度消除麻风歧视的重要措施。
To investigate the knowledge - attitude –practice about leprosy among the full-time leprosy control workers of Zhejiang Province, and provide scientific basis for making leprosy control policies and the interference of iatrogenic discrimination. Methods: Some of the full-time leprosy control workers in the level of county or above in Zhejiang Province,China, were investigated by using the self-designed questionnaires about the knowledge - attitude –practice of leprosy. The information entered into the computer and carried out a descriptive statistical analysis. Results: The 42 full-time leprosy control workers knows most of basic knowledge about leprosy well, and the positive attitudes and behaviors towards leprosy were more than 80%,except for the special disinfection after treating lepers. But the awareness of diagnostic criteria, treatment drugs, and treatment of the complications was low. The phenomenon of fear and discrimination against lepers in a few of full-time leprosy control workers was present. Conclusion: Facing the new prevention and control situation, it is still necessary to strengthen the capacity-building of full-time leprosy control workers. Promoting the full-time leprosy control workers to contact with the lepers more often is the important measure of eliminating leprosy discrimination .
（3）了解农村社区医务人员麻风病的认知状况及其医源性歧视的水平，为开展针对性医源性麻风歧视干预提供基础资料。 方法：采用自行设计的调查问卷，由当地麻风防治人员在浙江6个麻风流行地区的乡村卫生机构医务人员中开展调查。 结果：共调查200名乡村医务人员，其麻风病的知识掌握情况平均得分为5.27士2.03 分（得分范围0-10分），整体处于中等水平。在接触麻风病人时觉得害怕恐惧者占11 %（22/200），有些害怕者占21.5 %（43/200），不害怕者占67.5 %（135/200）；最常见的麻风医源性歧视形式分别为：处理时给予特别对待或隔离处理（84.5%），服务后特别消毒处理（84%）以及最后给病人进行治疗（48.5%）。 结论：麻风医源性歧视在基层医务人员中一定程度存在，加强对基层医生的麻风知识培训，提高乡村医生麻风知识水平，对于消除麻风的医源性歧视十分必要。
To understand the cognitive status and its iatrogenic discrimination level of the medical staff in rural communities, in order to provide the basic information for the future targeted iatrogenic interventions. Methods: The local leprosy control staff in six leprosy endemic areas of Zhejiang, conducted investigation among medical staff in rural health facilities, with the self-designed questionnaire. Results: A total of 200 rural medical staff was studied, their leprosy knowledge level averaged with a score of 5.27 ± 2.03 points (score ranged 0-10 points), ranking as the medium level. When contacting with the lepers, 11% (22/200) felt afraid , 21.5% (43/200)scared to some extent, 67.5% (135/200)without any fear.The most common iatrogenic leprosy forms of discrimination are as follows: giving special treatment or isolation treatment (84.5%), particularly disinfection in service(84%), and finally treated the leprosy affected persons (48.5%). Conclusion: Iatrogenic discrimination against leprosy patients at the grassroots level is present to some degree .It is necessary to train the town and village doctors to eliminate leprosy iatrogenic discrimination.
（4）研究麻风家庭内歧视的形式，水平与影响因素。 方法：使用自行设计的问卷，对385例麻风病人家属家庭内歧视情况及其可能的因素进行调查，并使用SPSS11.5软件进行统计学分析。 结果：麻风家庭内歧视平均为3.72士2.47分（总分10分）。歧视最重要的形式为不愿意病人接触小孩与家务事不征询病人意见。影响家庭内歧视的因素经多元线性回归分析发现有6项，分别为：有受歧视经历，感到害怕麻风，麻风传染致病的知晓情况，担心传染家人，麻风家庭治疗方式的知晓情况，总体麻风知识水平。 结论：麻风家庭内歧视处于低等水平，与家属遭受社会歧视的经历有密切的关系，加强对家庭成员的健康教育与咨询服务十分必要。
To study the forms,level and affecting factors of family leprosy discrimination. Methods:385 leprosy family members were investigated with self-designed questionnaire and the data were analysized with SPSS11.5 software. Results:The mean score of family leprosy discrimination was 3.72士2.47 (with a total of 10 score).The important forms of family discrimination were reluctant of patients touching the baby and not inquirying lepers the advice of family affairs.The affecting factors of family discrimination included the experience of being discriminated in society,feeling scaring leprosy,the awareness of leprosy infection ability,worrying family members infected,the awareness of family-treatment style of leprosy,general leprosy knowledge level. Conclusion;Leprosy family discrimination is in a low level.It is related to the relatives discriminated experiences in the society. We feel that strengthening the health education and counselling of leprosy relatives is necessary.
（5）了解浙江省农村社区内部围绕麻风病而产生的歧视的具体情形和影响因素。 方法: 自设调查问卷，由当地兼职麻风防治医生对普通村民针对麻风病的社会歧视及其可能的相关因素进行调查。 结果: 共调查普通村民314人，其针对麻风病的歧视平均得分为10.57士4.18分（总分20分），10项歧视形式中前5项依次为不愿小孩到病人家玩（1.44士0.68分），不愿与麻风病人打牌娱乐（1.38士0.68分），不愿与麻风病人一起就餐（1.35士0.62分），不愿用麻风病人家的粮食蔬菜（1.33士0.68分），不愿使用麻风病人的工具（1.31士0.61分），在承载一定人情伦理意味的活动中歧视程度较轻。在20项可能与农村居民麻风歧视相关的因素中经多元线性回归分析发现性别、职业、麻风疫情程度、与病人接触频度以及对于麻风家庭治疗和可以治愈的认识6个变量是影响农村社区居民麻风歧视的危险因素。 结论: 浙江省农村社区居民的麻风歧视呈现中等水平，加强对麻风疫情严重地区农村女性和农民的歧视干预工作十分迫切，在歧视干预中应注意采用接触联谊的策略并重点开展麻风可以家庭治疗和可以治愈的知识宣传活动。
To investigate the current status of leprosy-related discrimination and its affecting factors in rural communities in Zhejiang,China. Methods:The questionnaire was self-designed,including 10 kinds of discrimnation situations and 20 pieces of possible affecting factors.The survey was made by the local part-time leprosy control workers. Results:314 rural residents were investigated and the mean score of leprosy discrimination was 10.57士4.18 out of total 20 scores.The severe discrimination forms were more closely related to those direct or indirect body –contact and diet-related social activities,rather than those in morality or ethics driven social interactions,such as weddings,funeral,greetings and assistance with hospital visits,et al.The risk factors of leprosy discrimination among rural residents include sex,occupation,leprosy epidemic severity,the contact frequences with lepers and the cognition towards hometreatment and leprosy curable. Conclusions:The leprosy discrimination in rural community members in Zhejiang ,China ,ranged in median level.Leprosy discrimination intervention is necessary in the leprosy epidemic areas.
5 麻风受累者的社会参与状况及参与量表的适应性研究结果：
评估浙江存活麻风受累者的社会参与状况及其危险因素，为高危对象的筛选及麻风社会康复工作的开展提供基础性资料。 方法：使用参与量表对浙江麻风流行社区216例存活受累者进行调查，使用多因素分析的方法筛选麻风受累者社会参与的影响因素。 结果：216例麻风受累者得分范围为 0 --- 90分，平均得分为：39.12士30.88 分（总分90分）。216例麻风受累者中124例有参与异常（中等及严重参与受限），占57.40%，其中参与严重受限者占30.09%。在18个条目中得分最高的前6个条目依次为工作机会（Q1），社区事务中活跃程度（Q7），参与文化娱乐活动（Q6），社区中受到尊重情况（Q8），学习的自信程度（Q18），对家庭经济贡献（Q3），反映麻风受累者在这些方面参与受限比较严重。经多因素分析发现“生活自理能力”、“社会地位”、“可见畸残”、“婚姻状况”和“经济水平状况”为麻风受累者社会参与受限的危险因素。 结论：浙江存活麻风受累者存在社会参与的受限，对于严重受限的患者应该开展相应的康复干预和咨询服务。
To evaluate the social particiaption status and its risk factors among leprosy affected people in Zhejiang Province,China,to provide a screening tool for high risk disability cases and basic data for leprosy social rehabilitation work. Methods:216 leprosy affected persons lived in prevalent communities in Zhejiang,were investigated with the Participation Scale,and the data were analysized with the SPSS 11.5. Results:The social participation scores ranged from 0 to 90 ,with an average score of 39.12士30.88 (with a total score of 90).124 out of 216 cases have abnorminal social participation restriction (medial to severe restriction),accounted for 57.40%,with a severe social participation restriction rate of 30.09%.The 6 participation restriction conditions out of 18 arranged in orders as follows:finding job opportunity, socially active in community affairs,taking part in recreational activities,having same respect in the community,feeling confident to try to learn new things,contributing to household economically.The risk factors of social participation restriction were life self-care abilities,social status,disabilities,marriage status,economical level. Conclusions:Social participation restriction were easily seen in the leprosy affected persons in Zhejiang Province,P R of China.The aimed rehabilitation intervention and counselling service are necessary in the cases with severe participation restriction or more participation restriction risk factors.
6 麻风受累者对歧视感知及自我歧视与外在歧视关系的研究结果：
（1）初步了解浙江省农村社区麻风受累者对外在歧视的感知水平及其影响因素，为今后开展消除麻风歧视工作提供科学依据。方法：使用自设调查问卷对多级抽样选取的216名麻风受累者进行面对面调查，采用Excel 2003及SPSS11.5统计软件对收集的数据进行分析。结果: 农村社区的麻风受累者对于外在歧视感受处于低位偏高的水平，平均得分为3.82士3.23分（总分为10分）；麻风受累者感知的相关歧视影响因素主要有7个：麻风病的可治愈性认识、自理能力、社会地位、有无可见畸残、经济水平状况、婚姻状况和年龄。结论：浙江省农村社区麻风受累者感知到一定程度的外在歧视，应针对受累者感知的相关歧视影响因素进行干预，促进患者身心健康，实现社会康复的目标。
To understand the perceived external discrimination and its influencing factors among leprosy patients lived in rural community of Zhejiang Province,China. Methods: Using the self-designed questionnaire to investigate the multi-stage sampling selected 216 leprosy patients lived in the rural communities face to face, and the data collected were analyzed with the Statistics Software Excel 2003 and SPSS11.5 for Windows. Results: The perceived external discrimination among leprosy patients lived in rural community were at the low level ,with a slight high direction, the average score was 3.82±3.23(ranged from 0 to 10) ; The main influencing factors of external perception of discrimination were as follows : the awareness of leprosy curable nature, daily activity living ability, social status, visible disability, level of economic status, marital status and age. Conclusion: Leprosy patients lived in rural community of Zhejiang Province perceived a certain degree of external discrimination, we should take measures on those influencing factors related to discrimination of leprosy patients , in order to promote their physical and mental health , and help them rehabilitate in the society better.
（2）了解浙江省农村社区麻风受累者的自我歧视及其外在歧视的状况及其二者之间的关系。 方法：自行设计有关调查问卷，由当地麻风防治医务人员对216名农村麻风受累者进行登门调查，结果进行描述性统计与Spearman相关性分析。 结果：麻风受累者自我歧视平均为2.79士1.25分（总分5分）；麻风受累者自我歧视最主要的表现是介意别人提及患病的事（80.09%），其次为因得这个病而感到羞愧（75.46%），再次为因得这个病而对自己价值评价降低（72.22%）。麻风受累者所感受到的外在歧视平均为3.82士3.23分（总分10分）；外在歧视严重的表现为在邻居串门（82.87%），社区娱乐（79.63%）及工作机会（73.15%）方面受限。麻风受累者的自我歧视与外在歧视间存在正相关关系，相关系数为0.174，P<0.05。 结论：农村社区麻风受累者的自我歧视与外在歧视之间存在循环交互作用的关系，加强麻风受累者的咨询与社会人群的歧视干预十分必要。
To understand the self-imposed and perceived external discriminations of leprosy sufferers as well as the relations between them. Methods:The questionnaire was self –designed and the leprosy sufferers were investigated by the local leprosy control workers.The datum were analysized with descriptive and Spearman correlative statistics. Results:The score of self-imposed discrimination among leprosy suffers was 2.79士1.25 on the average with a total of 5 scores.The main manifestations of self-imposed discriminations were reluctantlly mentioned the past diseased history（80.09%）,becoming ashamed due to leprosy(75.46%),difficult to value themselves（72.22%）.The perceived external discrimination score averaged 3.82士3.23 with a total of 10 scores.External discrimination mainly manifested with reduced neighbours dropping in (82.87%),community recreations（79.63%）as well as working chance（73.15%）.There is a positive correlations between self-imposed and perceived external discrimination,with Spearman coffeciant 0.174, P<0.05. Conclusions:The self-imposed and external discriminations of leprosy sufferers have a recycled and interrelated relation .It is necessary to strengthen the counselling of leprosy suffers and the discrimination intervention among social populations .
7 家庭职能，社会支持，麻风防治一体化及其与麻风歧视的关系：
（1）了解我省农村社区麻风病人家庭职能状况。 方法：使用家庭关怀度指数问卷（APGAR）对随机抽取的216名农村社区麻风病人进行登门调查，了解其对家庭功能的主观满意程度。采用Excel 2003及SPSS11.5统计软件对收集的问卷数据进行分析。 结果：整体家庭功能评分平均5.20±3.25分（得分范围0~10分），高职能家庭90例（41.67%），职能中度失调61例（28.24%），职能重度障碍65例（30.09%）；各项家庭职能得分分别是：适应度1.30±0.76分，情感度1.21±0.77分， 成长度1.05±0.79分， 合作度1.02±0.79分， 亲密度0.62±0.75分；麻风患者的残疾状况、生活自理和劳动能力与家庭功能状况障碍程度具有正相关关系（P均小于0.01）。 结论：麻风病与患者家庭职能状况有密切的关系，麻风病人家庭职能存在一定程度障碍，加强对麻风病人家庭的保健指导和咨询对于麻风病人的家庭康复十分必要。
To understand the functions of the family situation of the lepers in the rural communities of Zhejiang Province,China. Methods:We Used the Family APGAR index questionnaire to investigate the 216 lepers in the rural communities, and obtained their subjective satisfaction to the family functions.Date collected were analyzed with the Statistics Software Excel 2003 and SPSS11.5 for Windows. Results:The average score of Overall family functions was 5.20±3.25(ranged from 0 to 10), 90 cases of high-functioning families(41.67%), 61 cases of moderate disorder (28.24%), 65 cases of severe obstacles (30.09%); The scores of the family functions---- adaptation, partnership, growth, affection and resolve were 1.30±0.76, 1.21±0.77,1.05±0.79,1.02±0.79 and 0.62±0.75 respectivelly；Leprosy disability,activities of daily living,and labor abilities of patients had a positive correlation with the degree of family dysfunction (all p<0.01). Conclusion:Leprosy was closely related to the patients’ family functions; Impairment existed in the lepers’ family to some extent;It is necessary to strengthen the lepers’ family health guidance and counseling due to the rehabilitation of patients.
（2）由当地麻风防治工作者对被试者进行问卷调查，测量工具采用肖水源编制的社会支持评定量表。评价指标包括主观支持、客观支持和支持的利用度3个维度，共10个项目。调查216例麻风受累者，结果高支持 5.56 %，中等支持 38.89 %，低支持 55.56 %，三个维度中客观支持和支持利用度较低，“社会地位”、“可见畸残”和“文化程度”3个自变量与麻风病人社会支持水平有线性关系。
A study in social support of leprosy affected people was made with the social support questinnaire designed by Professor Xiao Shuiyuan.We found that 5.56% lepers had a high suppport ,38.89% a medium support and 55.56% low support.Social status ,leprosy disability and education level were the risk factors of social support of leprosy affected persons.
（3）了解我省农村社区麻风病防治一体化服务运行质量，为制定我省麻风病防治工作的有关策略和措施提供依据。 方法：自行设计问卷，对200名基层社区卫生人员进行调查，了解其麻风防治服务的参与情况以及对我省近5年来麻风防治服务质量的评价结果和对我省目前最急需改进麻风防治工作的意见。 结果：200例农村社区医务人员对麻风防治服务一体化工作总体评价认可度：认为较好者110例（55%），一般者85例（42.5%），较差者5例（2.5%）。200例医务人员中未具体参与过麻风防治工作者占39.5%，社区卫生服务人员参与最多的麻风防治工作为麻风病健康教育（31%），其次为麻风防治管理与疫情监测工作（26.5%），再次为麻风残疾预防及后遗症处理工作（15%）.医务人员对当地麻风防治具体业务工作认可度最高者为现症病人的诊治(2.60士0.56)和治愈残疾病人的随访监测工作(2.52士0.56)，对于麻风病人普通医疗服务情况(1.90士0.66)和消除麻风歧视(2.36士0.77)认可度最差。目前浙江农村社区麻风防治最急需改进的工作麻风防治纳入统一考核内容, 麻风防治人员的配备与能力建设, 麻风防治经费的保障。 结论：浙江麻风防治服务一体化后基层对麻风防治的参与力度加强了，但是在一些业务工作质量上有很大提高空间，开展麻风防治相关的政策倡导十分必要。
To understand the running quality of integrate leprosy control service in rural communities in Zhejiang province,China, 200 grass-roots community health workers were investigated with self-designed questionnaire, we found that 110 cases (55%)gave a good apprasial of the integrated leprosy control services, only 39.5% medical staff hadnot participated the control services since the integrated year. The community health service personnel involved in leprosy control work for the largest number of leprosy health education (31%), followed by management and monitoring of the epidemic prevention and control of leprosy work (26.5%) , again for the sequelae of leprosy disability prevention and treatment work (15%).The medical personnel on the local grass level gave the highest recognition for the current diagnosis and treatment of patients (2.60 ± 0.56) and the disabled patient's follow-up (2.52 ± 0.56),They gave a worst apprasial of the general medical service for leprosy patients (1.90 ± 0.66) and the elimination of leprosy discrimination (2.36 ± 0.77).Conclusion:, Through the integration of leprosy control services in Zhejiang, the participation extent of grass-roots workers have strengthened, butthere are still much space to improve in leprosy control work .
（四）课题的主要研究结论与建议
1因应今后处理麻风歧视问题的挑战，现行麻风健康教育工作应予以加强，在麻风健康教育的组织管理、经费保障、传播方式、目标人群等方面要进行相应调整改进。
2麻风医源性歧视还是一定程度存在，专业防治人员歧视程度较轻，但是在临床医务人员，乡村医务人员包括在麻风防治机构的临床医务人员中均不同程度存在，加强在医疗机构麻风医源性歧视干预对于解决麻风歧视问题有特别的意义。
3麻风家庭内歧视处于低等的水平，病人在家庭中接纳的情况较其它领域还是比较理想，导致家庭内歧视主要因素还是麻风相关的科学知识缺乏与社会上对麻风歧视的存在，加强对病人家庭成员的健康教育与咨询服务对于解决麻风家庭内歧视十分必要。
4农村社区对麻风的歧视处于中等的水平，当地麻风疫情，麻风知晓程度及与病人的互动接触程度是主要的影响因素。加强对麻风流行地区麻风歧视的干预十分必要，麻风健康教育和接触联谊是重要策略。
5麻风病人的社会参与存在比较普遍的受限情况，在浙江这样社会经济比较发达城市化进程加速的地区这种倾向越发明显，其程度较印度，巴西，尼泊尔等国家报告为高，尤其在工作就业，参与社区事务及文化娱乐活动参加方面十分明显。患者的麻风残疾和社会经济地位是两个主要的影响社会参与的因素。开展麻风受累者的社会经济康复和保护性或福利性就业政策对于麻风残疾病人是必须的。
6麻风受累者的自我歧视是麻风歧视的重要表现，在患者歧视感知形成中发挥着一定程度的作用。这种自我歧视的存在导致了患者与社区群众对于麻风歧视感知的一定程度的差异。加强对麻风受累者的心理咨询和能力建设在解决麻风歧视问题中处于比较核心和关键的地位。
7农村社区约30.09%的麻风患者的家庭职能处于重度障碍水平，加强对麻风病人家庭的保健指导和咨询对于麻风病人的家庭康复十分必要。
8农村社区麻风病人获得的社会支持较少，获得高分支持者仅占5.56%，在获得的客观支持及对支持的利用方面存在缺陷，促进农村社区麻风病人获得更多社会支持应成为今后工作内容之一。
9浙江在实现麻风防治与综合医疗服务体系密切结合即一体化过程中社区对麻风防治参与程度得到了提高，但是麻风防治服务的平等性受到挤压，基层人员防治能力建设不足。麻风防治服务一体化对于减轻麻风歧视及提供麻风受累者医疗服务可及性方面的作用不明显。必须予以改进和提高。
10由国际参与量表开发小组推荐的参与量表可以作为中国麻风受累者受歧视水平及社会康复状况的评估工具，但是对于参与受限对象的评分标准方面中国应该重新制定调整，尤其在社会经济发展比较迅速的地区更应该如此。
(四)Main conclusions and suggestions:
1Due to the challenge of leprosy stigma,the leprosy health education must be strengthened,and the strategy in adminstration ,funds raising,propaganda style ,targated population,et al, must be adjusted.
2Leprosy iatrogenic discrimination is present to some extent,especially in the clinical medical staff,rural medical personnels,as well as ones in the leprosy control agencies.We feel that intervention towards medical agencies is necessary and it has special meaning in eliminating leprosy discrimination.
3The leprosy discrimination in leper’s family ranked in a low level.The main risk factors were the lack of leprosy knowledge and the social discrimination towards leprosy affected family.Health education and counselling service towards family members are suggested.
4The community discrimination ranked in medium level in Zhejiang,The influencing factors included the leprosy endemic situation,leprosy awareness level and the contact frequency with leprosy affected people.Health education and social friendly gathering were suggested .
5The social participation restriction in leprosy affected people is common,especially in the advanced region similar to Zhejiang,China.It manifested obviously in job finding,attending community affairs,recreation activities.The social status and the leprosy disability were the main influencing factors.Social and economic rehabilitation as well as protective employment obtainment are necessary in solving the problems.
6Self-discrimination of leprosy affected people is one of the discriminations of leprosy.It plays role in the forming of the perceived external discrimination to some extent.It caused the difference between the discrimination perceived by lepers and that by common masses.We consider that it is very important to strengthen the psychological counselling of lepers and empowerment building of tackling with leprosy stigma of people affected by leprosy.
7The family function of leprosy affected persons lived in rural community have heavy impairment,with a percentage of 30.09%.We recommend that family health care guidance and counselling are necessary for leprosy affected persons.
8The leprosy affected persons in rural community acquire little social support,with a 5.56% ofhigh score of social support .There are defects in objective support and utility of support among leprosy affected persons.It is one of the future control work to prompt the accquirement of more social support.
9The leprosy control participation extent of community increased after the integrated leprosy control service in Zhejiang Province,China.But the equalty of leprosy control service in all health work was declined,and the new leprosy control staff in the grass root level have low ability in leprosy control.We were astonishedcontrol to find that the integrated leprosy service did not have good effect in reducing leprosy stigma and prompting medical service utility in leprosy affected persons in Zhejiang.We consider improvement in it is urgent in Zhejiang,China.
10The Paticipation Scale recommened by The internation participation scale development group can be used in China as a tool for screening the high risk objectives of leprosy social and economical rehabilitation as well as the indicator of stigma evaluation.But the evaluation criteria must be lay down.We feel that leprosy patients have more participation restriction in Zhejiang,China ,than that in Brazil,India and Nepal,due to the reason of the developed economy and the lack of ability among leprosy patients.
（五）课题研究项目的产出
卫生系统研究的根本目的在于推广研究的成果，指导推进今后的实践。通过本项目的研究，我们的具体产出如下：
1本课题初步建立了我国麻风歧视的理论体系，为今后我国麻风歧视干预工作的开展及麻风防治实现工作重点向麻风社会经济康复方向的转变提供了理论的指导。同时，本课题推荐和使用的一些麻风歧视的评估工具将在今后麻风康复与健康教育实践中得到使用，促进基层相应工作的开展与防治实践水平的提高。
2本课题产出的21篇研究论文正陆续在国内有关学术刊物发表，有关麻风歧视干预的知识将传播给更多的防治工作者及医务人员.
3本课题研究的有关论文曾经在北京召开的首届中国热带医学论坛，吉林召开的全国麻风性病皮肤病学术会议及中国麻风协会网站进行交流，且今后将在其它一些全国性的麻风学术会议上进行交流，让更多麻风防治界同道受益。
4本项目的有关技术报告将予以汇编，并分发给卫生主管部门，中国CDC麻风病控制中心，中国麻风防治协会，各有关麻风防治机构等，以进一步扩大本卫生系统研究的学术影响力和政策倡导能力.
5本课题研究过程中在浙江有关项目实施地区已经产生了一定的影响力，麻风歧视干预的理念及部分实践已经在一些现场发挥着作用，促进着当地麻风歧视问题的解决及麻风防治工作和麻风受累者的康复环境的改善。
6本卫生系统研究培养出了一批开展麻风学术研究的业务技术骨干，为浙江麻风学术力量的增强和麻风学术的持久繁荣作出了贡献。
(五)Output of the research project:
The aim of HSR is to spread the research results and guide the future practice.By the research,our output are as follows:
1The research preliminary established the theory system of leprosy discrimination,to provide the theoriotical guidance for the future stigma intervention and social and economical rehabilitation.Meanwhile,the evaluation tools related to stigma assessment will use in the health education and leprosy rehabilitation.It will accelarate the development of related work in grass root level.
2The study will develop 21 pieces of technical reports ,which will publishe in the related academical magazines,and the leprosy stigma elimination knowledge will spread more to more medical staffs and administrators.
3 Some research papers of leprosystigma have presented in the first tropical medicine forum of China and the national leprosy,veneral disease ,and dermatoses symposium in Jilin,as well as the web site of China Leprosy Association.The more paper will present in the future academic conferences to spread the leprosy control workers more .
4 The technical report of the research will distribute to the government departments,Leprosy control center of China CDC,China Leprosy Association,all related leprosy control agencies in China ,to expand the influences of the research.
5 The study has brought about effect in the reseach fields of Zhejiang ,China.The stakeholders have accepted leprosy stigma elimination theory .Some leprosy control agencies have taken into actions in stigma elimination to improve the rehabilitation circumastances of leprosy suffered persons .
6The HSR project will train a series of successors in leprosy control,to strengthen the academic power of leprosy and bring about a prosperous leprosy control activities in Zhejiang,China.
（六）致谢：
本课题研究得到了荷兰麻风救济会的经费的支持，中国CDC麻风病控制中心张国成教授，严良斌教授及江澄教授对于课题中的许多技术问题提出了宝贵的建议，我所尤卫平所长，许亚平助理协助解决了课题实施过程中许多现场问题，我所吴李梅，谭又吉，潘美儿，汪萌萌，妙建芬同志在资料输入统计处理中付出了许多辛劳，浙江桐乡，绍兴，海宁，上虞，余杭，萧山等地的麻风病防治机构工作人员在课题现场调查过程中给予了许多协助，在此一并表示感谢！
(六)Acknowledgement
We greately acknowledged the funds support of Netherland Leprosy Relief Association.We are also grateful to the technical guidance and encouragement of Professor Zhang Guocheng and Yan Liangbin,who work in Leprosy Control Center Of national CDC.Mr You Weiping,Head of Institute of Dermatology in Zhejiang Province ,and Mr. Xu Yaping,assistant director of institute ,helped to solve many administrative difficulties mey in the study
Ms Wu Limei,Mr Tan Youji,Ms Pan Meier,Ms Wang Mengmeng,Miss Miao Jianfeni,contribute much in data type and statistics,The medical staffs in research cooperating units gave us much help in the investigation.We express our deepest thanks to them!
执笔：王景权 许亚平 吴李梅
日期：2009年9月25日
Written by :Wang Jingquan, Xu Yaping, Wu Limei Date: Sep 25th, 2009
附：麻风歧视课题研究的理论体系框架构图
Enclosure:Configuration picture of the system of leprosy stigma research