The Burden of Care and Its Predictors in Severe Mental Illness: a Follow-up One Year after Hospital Discharge

Abstract

Individuals with severe mental illness usually require informal care, which is frequently underestimated. There is much data on medical costs and outcomes of psychiatric care but less research on informal caregiving and its role in measuring recovery. This paper presents the results of an observational, crosssectional study that follows up on individuals with schizophrenia and affective disorders and their caregivers in an outpatient setting one year after hospital discharge. The burden of informal care is evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure and hours spent in care and financial aspects of informal caregiving. One hundred and five individuals with mental illness (50 with schizophrenia and 55 with affective disorder) and 105 carers are followed up one year after hospital discharge. The time spent in informal care has decreased (p < .001) with 1.4 hours per day for both diagnostic groups and is 4.4 hours per day for schizophrenia and 2.5 hours per day for affective disorders (p = .005). The monthly financial support is 203 Euro and 192 Euro, respectively (p = .373). The mean BAS score has decreased by 8.1 points for schizophrenia and 8.6 points for affective disorders (p = .412). While showing a statistically significant decrease in outpatient setting compared to inpatient setting, the burden of care at follow-up is still substantial. Statistically significant predictors of a high burden of care (measured by total BAS score) are patient’s severity of illness (p = .019), history of threats (p = .004), time spent in informal care (p < .001), the stigma of mental illness (p < .001), and younger caregiver (p = .030)