Assessing Experiences, Attitudes, and Perceptions Associated With Treatment-Resistant Schizophrenia: Caregiver Focus Groups

Background: Treatment-resistant schizophrenia (TRS), defined as schizophrenia not responding to two trials of antipsychotics (APs) of adequate dose and duration, affects about one-third of individuals with schizophrenia. The objective of this qualitative study was to investigate the impact of TRS on caregivers of people with TRS.

Method: Eight focus groups (27 participants) were conducted in 5 US locations with non-professional, adult caregivers providing care ≥20 hours/week to individuals with TRS currently treated with APs. TRS was operationalized as caregiver report of non-response to >2 APs of adequate dose and duration ≥6 weeks (≥1 atypical) and moderate or severe persistent positive symptoms despite medication adherence.

Results: Caregivers reported that providing direct care nearly constituted a full-time job and included coordinating physician/therapist appointments (93%), managing medications (85%), and providing emotional/social support (74%). Over three-quarters of caregivers reported being “on-call” “24/7.” Being “on-call” and providing continuous emotional support significantly impacted their work status, social life, and mental health. The most common persistent symptoms reported included auditory hallucinations (89%); agitation, irritability, and hostility (81%); suspiciousness (78%); incoherent thinking/speech (74%); and cognitive impairment (74%). Almost three-quarters of caregivers ranked suspiciousness/persecution as the most challenging symptom; over one-half provided financial support for the individual with TRS. Seventeen of 27 caregivers reported that caregiving negatively impacted their physical health.

Conclusion: This study demonstrates the significant clinical, humanistic, economic, and societal impacts of TRS on caregivers, underscoring its burden on caregivers and their need for support, in addition to new treatments and services for individuals with TRS.