Development and validation of a self-reported questionnaire on users' opinions about schizophrenia: a participatory research.

Background: Although users' involvement in mental health research has repeatedly been acknowledged as having a positive influence on research quality, this rarely happens.

Aims: To develop and validate a Questionnaire on Users' Opinions (QOU) about schizophrenia, in close collaboration with 279 persons affected by this disorder.

Methods: A preliminary list of items concerning the opinions of users with schizophrenia regarding causes, treatments and psychosocial consequences of the disorder was developed by 38 users with schizophrenia and 40 professionals who attended a workshop.

A new self-report questionnaire called "ABC" to evaluate in a clinical practice the aid perceived from services by relatives, needs and family burden of severe mental illness.

Objective: To describe: a) a self-report questionnaire of 34 item, developed by a Family Association of Psychiatric Patients in collaboration with two psychiatrists to evaluate by key-relative in a clinical practice the perceived quality of mental health services, the needs and family burden; b) the methodology of validation.

Methods: It has been studied (a) the Face Validity by two focus groups of 10 relatives for each group, (b) the concurrent validity of family burden items comparing the ABC with QPF, a widely used questionnaire, in 6 Italian mental health centres on a sample of key-relatives, (c) the discriminant validity comparing three different samples of key-relatives of patients with psychiatric illness, Alzheimer or cancer. The internal consistency of items for assessing relatives' opinions on the quality of care has been evaluated by Chronbach' s alpha.