Schene A H, van Wijngaarden B
Department of Psychiatry, Academic Medical Center of the University of Amsterdam, The Netherlands.
Psychiatr Serv. 1995 Aug;46(8):807-13. doi: 10.1176/ps.46.8.807.
Members of Ypsilon, a Dutch family organization for relatives of patients with schizophrenia or chronic psychosis, were surveyed to determine whether patients whose families were involved in the organization were representative of all patients with schizophrenia in the Netherlands and whether Ypsilon was similar to family organizations in other countries, to learn about members' experience of the course of their relatives' illness, to determine the kinds of mental health care received by the patients, and to discern members' opinions of that care.
An extended version of the Involvement Evaluation Questionnaire, which measures consequences of psychiatric disorders for patients' relatives, was sent to a random sample of 1,000 Ypsilon members. The response rate was 70 percent.
Members of Ypsilon are mainly older mothers of young male patients with a long history of schizophrenia. The patients as a group appeared to be more severely ill than the overall population of patients with schizophrenia in the Netherlands. Many respondents reported dissatisfaction with the quality of mental health care for their relative, particularly with their lack of access to treatment professionals, lack of information about their relative's illness, and lack of family involvement in treatment planning.
Members of Ypsilon represent patients with severe mental illness who do not benefit sufficiently from treatment. Members want a greater role in treatment planning and more information and support from mental health care professionals. Members of Ypsilon and of family organizations in other countries have much in common, even though the extent of deinstitutionalization varies between countries.
对荷兰一家为精神分裂症或慢性精神病患者亲属设立的家庭组织Ypsilon的成员进行调查，以确定其家庭参与该组织的患者是否能代表荷兰所有精神分裂症患者，以及Ypsilon是否与其他国家的家庭组织类似，了解成员对其亲属病程的体验，确定患者接受的各类精神卫生保健，并了解成员对该保健的看法。
一份用于衡量精神疾病对患者亲属影响的《参与度评估问卷》扩展版被发送给1000名Ypsilon成员的随机样本。回复率为70%。
Ypsilon的成员主要是患有精神分裂症且病史较长的年轻男性患者的年长母亲。作为一个群体，这些患者似乎比荷兰精神分裂症患者的总体病情更严重。许多受访者对其亲属的精神卫生保健质量表示不满，尤其是他们无法接触到治疗专业人员、缺乏关于亲属病情的信息以及家庭在治疗规划中缺乏参与。
Ypsilon的成员代表了那些未从治疗中充分受益的严重精神疾病患者。成员们希望在治疗规划中发挥更大作用，并从精神卫生保健专业人员那里获得更多信息和支持。Ypsilon的成员与其他国家的家庭组织成员有很多共同之处，尽管不同国家的非机构化程度有所不同。
