ArticlePatient preference and adherence2022
Perceived Burdens and Educational Needs of Caregivers of People with Schizophrenia: Results of a National Survey Study.
Article in Patient preference and adherence, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed, 14 citations in OpenAlex.
- The impact of caregivers' illness perception and emotional expression on medication adherence in patients with schizophrenia.BMC psychology · 2026Article
- How Can We Better Assist Caregivers With Understanding and Addressing the Cognitive Health Needs of People With Psychotic Disorders?Schizophrenia bulletin · 2026Review
- Understanding long-acting injectables in the context of treatment planning for schizophrenia: crafting a strategy.CNS spectrums · 2025Review
- Knowledge of Mental Illness and Its Associations Among Caregivers of Patients With Schizophrenia.Cureus · 2024Article
- Introducing S.C.O.P.E.™ (Schizophrenia Clinical Outcome Scenarios and Patient-Provider Engagement), an Interactive Digital Platform to Educate Healthcare Professionals on Schizophrenia Care.Neuropsychiatric disease and treatment · 2024Review
- The preferences for the telemedicine and standard health care services from the perspective of the patients with schizophrenia.BMC psychiatry · 2023Article
- A Patient-Clinician Discussion of Current Challenges in Schizophrenia Part 2: Negative Symptoms in Schizophrenia [Podcast].Neuropsychiatric disease and treatment · 2023Article
- The Effect of Longer Dosing Intervals for Long-Acting Injectable Antipsychotics on Outcomes in Schizophrenia.Neuropsychiatric disease and treatment · 2023Review
- Coping strategies and their associated factors among caregivers of patients with schizophrenia in Kuantan, Malaysia.Frontiers in psychiatry · 2022Article
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeSchizophrenia 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.
methodsA 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.
resultsCaregivers 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.
conclusionCaregivers 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.
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