Educational Needs of Caregivers of Patients With Schizophrenia: Results of a National Survey Study

BACKGROUND: Caregivers of patients with schizophrenia are an often-overlooked target for education, but may be a key resource to promote therapeutic adherence and patient education.

OBJECTIVE: To determine specific educational needs of caregivers of patients with schizophrenia.

DESIGN/METHODS: A survey instrument was developed and fielded to 96 caregivers in the United States via online communities and caregiver newsletters. A combination of qualitative and quantitative methodology was used to analyze the data.

RESULTS: When asked which schizophrenia symptoms are most worrisome, caregivers identified hallucinations, delusions, disorganized behavior, thought disorder, and aggression. Most caregivers feel that they act as a mediator between the medical team and the patient, and that they are responsible for the patient‚Äôs therapeutic adherence. Caregivers report that a schizophrenia diagnosis has strained their emotional health, reduced their ability to have a satisfying personal life, and disrupted their family life. Caregivers generally have fewer barriers caring for patients on long-acting injectable treatments (LAIs) than for patients not on LAIs. Caregivers are extremely interested in learning more about treating schizophrenia and providing care—specifically, new treatments, coping strategies, and understanding specific symptoms.

CONCLUSIONS: Caregivers need help recognizing, understanding, and managing specific common symptoms of schizophrenia, particularly delusions and aggression. Information about strategies to handle these symptoms when they arise would be extremely beneficial. Caregivers also want information on new and emerging therapies, which in turn may help them have discussions with clinicians about different treatment options.