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

Abstract

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.

Effectiveness of family interventions for patients with schizophrenia: A systematic review and meta‐analysis

“…Clear communication and interaction between families and health professionals at an early stage of a patient's illness decrease family distress (Caqueo-Urízar et al, 2017); however, families are easily neglected in the treatment process. Most families of patients with schizophrenia reported that they received inadequate information regarding the illness, medication, symptoms, and coping strategies (Lippi, 2016) despite their interests and needs (Citrome et al, 2022). Thus, to increase the feasibility and application of FISs, continuing education or training programmes for health professionals to care for families of patients with schizophrenia will be essential.…”

“…As the tendency of institutional-based care has switched to community-and family-based care for those with disabilities in many countries, families are likely to undertake the responsibility of family members with the illness (Ko & Park, 2021;Koç et al, 2021). Globally, the primary caregivers of patients with schizophrenia are mostly family members, including parents, spouses, or siblings (Citrome et al, 2022;Lasebikan & Ayinde, 2013).However, caregiver roles in families are challenging. The family's roles are not limited to fulfilling the patients' basic needs (e.g., cooking, clothing, and cleaning).…”

The Effect of Longer Dosing Intervals for Long-Acting Injectable Antipsychotics on Outcomes in Schizophrenia

“…In a national survey, caregivers of patients with schizophrenia in the United States, who considered themselves responsible for the patient's adherence and treatment, identified fewer barriers with LAI use and viewed the patients as more capable of being treatment adherent when on LAIs. 88 As seen from data pooled from two large clinical trials, caregiver burden can be substantially reduced by switching from an oral antipsychotic to either PP1M or PP3M. 89 In the pragmatic REMISSIO study, patients stabilized on PP1M prior to the start of the study had mild-to-moderate caregiver burden, which reduced significantly (p<0.0001) when the patients were switched from PP1M to reduced dosing frequency with the longer acting PP3M.…”

Coping strategies and their associated factors among caregivers of patients with schizophrenia in Kuantan, Malaysia

“…It also results in substantial personal distress. In addition to the fact that hospitals no longer have to shoulder the burden of care, caregivers and society also suffer significant immediate and long-term consequences, such as long-term psychosocial and economic support, frequent hospitalization, and work productivity loss throughout the patients' lifetime ( 1 ). In most cases, schizophrenia patients show signs of social impairment, which is a major cause of distress to caregivers and patients ( 2 ).…”

“…In most cases, schizophrenia patients show signs of social impairment, which is a major cause of distress to caregivers and patients ( 2 ). The emotional well-being of caregivers and the ability to lead a fulfilling personal and family life have all been reportedly affected by the illness ( 1 ). Besides, family caregivers experience stress and exhaustion due to the demanding task of providing care for schizophrenia patients over an extended period of time ( 3 ).…”