Needs of people with schizophrenia/psychosis and their caregivers: A large scale survey

Abstract

For the first time in Spain, a large scale survey (5205 people) was carried out to establish the real needs of those directly affected by the illness. Patients and caregivers responded to a 9-question survey concerning dimensions: personal, social, medical treatment, psychotherapy and rehabilitation. For patients, the most important need (an average score of 3.5 on a scale of importance from 1 to 4) was to feel their emotional needs covered. The following average scores were also obtained: feel well physically (3.42), improve autonomy (3.41), have leisure activities (3.21) and work/study (3.1). A total of 42% of patients indicated having little or no freedom over their lives. Thirty-six percent indicated that medical treatment did not start soon enough, 35% that psychotherapy started too late and 13% saying they had received no psychotherapy at all. The help from professionals most valued was provide information about the illness (3.4), dedicating more time (3.4) investigating new treatments (3.3) paying attention to secondary effects (3.3) and incorporating the patient in decision making (3.3). Most patients reported a state of health “regular to good” but 10% indicated not being understood at all in their social environment since onset of illness and 25% being little understood. The anti-stigma initiative most valued was to increase investment in schizophrenia in health planning. Integral health planning should incorporate patient insights concerning basic needs and treatment preferences.Disclosure of interestThe authors have not supplied their declaration of competing interest.