BACKGROUND: Treatment-resistant schizophrenia (TRS) is among the most disabling psychiatric disorders with the greatest burden, impairment in community functioning, and poor psychosocial adjustment. TRS, clinically defined as failure to respond to two trials of antipsychotics (APs) of adequate dose and duration, affects about one-third of persons with schizophrenia. The objective of this qualitative study was to investigate the impact of TRS on caregivers of people with TRS and their perception of available treatments.
METHOD: Eight focus groups, with caregivers of persons with TRS currently treated with APs were conducted in five US locations. Non-professional, adult caregivers providing care at least 20 hours/week were recruited through 5 qualitative research facilities. TRS was operationalized as caregiver report of failure of >2 APs (adequate dose and duration and at least one being an atypical) of at least 6 weeks duration and moderate or severe residual positive symptoms of schizophrenia despite medication adherence.
RESULTS: Twenty-seven caregivers reported an average of nearly 40 hours/week providing direct care, such as coordinating physician/therapist appointments (93%); managing medications (85%); and providing emotional and social support (74%). In addition, caregivers reported being “on-call” an average of nearly 100 hours/week, and more than 40% being available “24/7”. Being “on-call” and providing continuous emotional support (e.g., constant reassurance especially in relation to positive symptoms) was more challenging to caregivers than providing direct care, and significantly impacted their work status, social life and mental health. The most commonly reported residual symptoms included auditory hallucinations (89%); agitation, irritability, and hostility (81%); suspiciousness (78%); incoherent thinking/speech (74%) and cognitive impairment (74%). Seventy percent of caregivers ranked suspiciousness/persecution as the most challenging symptom, as it significantly restricted the caregiver’s social interactions, ability to live “normally,” and their ability to reason with/calm down the person with TRS. More than half (56%) of the caregivers provided financial assistance and/or managed the finances for the individual with TRS; and 17 caregivers reported that caregiving negatively impacted their own physical health. Residual psychotic symptoms caused significant perceived burden, feelings of being overwhelmed and having no relief, and substantial negative impacts on the caregivers’ emotional and physical health.
CONCLUSION: This study demonstrates the significant clinical, humanistic, economic, and societal impacts of TRS on caregivers. The results underscore the great burden of TRS for caregivers and the importance of developing new treatments for persons not responding to available APs.
