使用核心讨论组研究残疾人照顾质量的构成领域和方面

Domains and facets of quality of care scale for disabled people using focus groups

目的：目前，国内外还没有深入研究人们对残疾人照顾的质量，也没有出现对残疾人照顾质量的评价量表。本试验使用核心讨论组探讨中国残疾人照顾质量的构成领域和方面。方法：试验于2006-12／2007-01在本单位完成。选择包括残疾人、残疾人的照顾者或家属以及医护专业人员共39人组成7个核心讨论组，分别是智力残疾组（n=6）、肢体残疾组（n=6）、帕金森病组（n=3）、听力残疾组（n=6）、视力残疾组（n=6）、家属或照顾者组（n=5）、专业人员组（包括医生护士等）（n=7）。残疾人的纳入标准：①年龄18～80岁。②经指定的医疗机构诊断为残疾人。③广州户口。排除标准：有严重的认知障碍、交流问题、抑郁、痴呆者以及不愿意参加讨论的残疾人。使用半结构化的形式开展核心讨论，进行书面记录和录音，并使用定性和定量分析方法对材料进行分析。结果：纳入受试者39人，均进入结果分析。残疾人的照顾质量主要包含17个方面，组成6个领域。6个领域分别为：生理领域，包含能力、残疾程度等方面；心理领域，包含精神状况等方面；社会关系领域，包含人际关系、社会支持等方面；环境领域，包含居住环境、无障碍设施／辅助器械、卫生和社会服务的可及性及其质量、经济状况、娱乐休闲、交通6个方面；社会参与领域，包含就业、教育、尊重与接纳、歧视和嘲笑等方面；政策与社会机构领域。结论：①残疾人照顾质量的17个构成方面跟普通人生存质量的构成大致相同，区别在于残疾人还重视卫生和社会服务的可及性及其质量、无障碍设施／辅助器具、国家政策等方面。②核心讨论组可以作为一种有效的工具研究残疾人的照顾质量，有助于构建评估残疾人照顾质量量表的领域和方面。

AIM： People have not deeply studied the quality of care for the disabled at home and abroad now. There is not quality of care （QOC） scale for them. This study explored the QOC for disabled in China by focus group. METHODS： The experiment was conducted from December 2006 to January 2007. Thirty-nine subjects including disabled people, watchers or family members and professional caretakers were selected and divided into seven focus groups： intellectual disabled （n =6）, physical disabled （n =6）, Parkinson disease （n =3）, hearing disability （n =6）, vision disability （n =6）, relatives or watchers （n =5）, and professional （n =7, including doctors and nurses）. The disabled who （1）aged 18 to 80 years, （2）were diagnosed as disability by medical institutions, and （3）were of Guangzhou domicile population were selected. And the disabled people with serious cognitive impairment, communication problems, depression, dementia, and unwilling to participate in the discussion were excluded. Each group was interviewed following a semi-structured procedure. Videotape and written records were used and the data were analyzed by qualitative and quantitative analysis methods. RESULTS： Thirty-nine subjects were all involved in the result analysis. The QOC scale involved 17 aspects and 6 domains such as physical health domain including ability, severity of disability and so on; psychological health domain including mental status, etc; social function domain including interpersonal relationship, social support, etc; environment domain including living environment, barrier-free facilities/assistive devices, the availability and quality of health and social services, financial state, entertainment and recreation and transportation; social participation domain including employment, education/social security, respect, and discrimination and transportation; policy and social institutions domain. CONCLUSION： （1）The 17 facets in QOC scale for disabled are similar to the QOL scale for normal people. The difference is that disabled people pay more attention to the availability and quality of health and social services, barrier-free facilities/assistive devices, and policy. （2）The focus group can be a practical method of studying the quality of care for disabled people, and the results are very helpful to establish the domains and facets of QOC scale for the disabled.