NYMC Faculty Publications

Perceived Burdens and Educational Needs of Caregivers of People With Schizophrenia: Results of a National Survey Study

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Patient Preference and Adherence

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Psychiatry and Behavioral Sciences


PURPOSE: Schizophrenia is a chronic, serious, and disabling mental disorder that affects how an individual thinks, feels, and behaves. With the availability of effective antipsychotic medications, the care of people with schizophrenia has shifted from psychiatric hospitals to outpatient treatment and caregivers, including family members. Caregivers are an often-overlooked target for education but may be a key resource to enhance patient education and foster greater adherence to treatment. This study sought to examine the burdens faced by caregivers and determine their specific educational needs. METHODS: A survey instrument was developed and fielded to 96 caregivers of patients with schizophrenia in the United States (September-October 2019) via online communities and caregiver newsletters. Survey responses were organized into specific topics: symptoms exhibited when diagnosed, current treatment options and use of long-acting injectable (LAI) antipsychotic medications, treatment adherence attitudes, barriers for caregivers and patients, informational resources utilized, and caregiver information and educational topics. RESULTS: Caregivers identified hallucinations, delusions, disorganized behavior, thought disorder, and aggression as the most worrisome symptoms of schizophrenia. Most caregivers felt that they act as a mediator between the medical team and the patient and that they are responsible for the patient's adherence to treatment. Caregivers report that a schizophrenia diagnosis has strained their own emotional health, reduced their ability to have a satisfying personal life, and disrupted their family life. Caregivers generally had fewer barriers caring for patients receiving LAI antipsychotic treatments than caring for patients not receiving such treatments. Caregivers were interested in learning more about new treatments, coping strategies, and understanding specific symptoms. CONCLUSION: Caregivers need help recognizing, understanding, and managing specific and common symptoms of schizophrenia. Information about strategies to handle these symptoms would be beneficial. Caregivers also want information on new and emerging therapies, which may help facilitate discussions with clinicians about different treatment options.