Objectives: 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.
Methods: 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.
Results: 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.
Conclusions: 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.