Carer subjective burden after first-episode psychosis: Types and predictors. A multilevel statistical approach

Abstract

Background: Carer burden at first-episode psychosis is common and adds to the multiple other psychiatric and psychological problems that beset new carers; yet, knowledge of the factors that predict carer burden is limited. Aim: This study sought to investigate the types and predictors of carer burden at first-episode psychosis in the largest, most ethnically diverse and comprehensively characterised sample to date. Method: This study involved a cross-sectional survey of carers of people with first-episode psychosis presenting to Harrow and Hillingdon Early Intervention in Psychosis service between 2011 and 2017. Carers completed self-report measures assessing their illness beliefs, coping styles and caregiving experiences (i.e. burden). Thirty carer and patient sociodemographic and clinical factors were also collected. Mixed effects linear regression modelling was conducted to account for clustering of carers by patient, with carer burden (and its 8 subtypes) investigated as dependent variables. Results: The sample included data on 254 carers (aged 18–74 years) and 198 patients (aged 14–36 years). Regression modelling identified 35 significant predictors of carer burden and its subtypes at first-episode psychosis. Higher total burden was independently predicted by perceiving greater negative consequences of the illness for the patient (B = .014, p < .001, 95% CI: [.010–.018]) and the carer (B = .008, p = .002, 95% CI: [.003–.013]), and engaging in avoidant-focussed coping (B = .010, p = .006, 95% CI: [.003–.016]). Lower burden was independently predicted by patients being in a relationship (B = −.075, p = .047, 95% CI: [−.149 to −.001]). Predictors of the eight burden subtypes (difficult behaviours, negative symptoms, stigma, problems with services, effects on family, dependency, loss and need to backup) are also included in the article. Conclusion: Findings can be used to inform the identification of carers ‘at-risk’ of experiencing burden and highlight potential targets for theraputic intervention to lower carer buden.