Carer burden is high during First Episode Psychosis (FEP) and evidence suggests that this is a predictor of poor long-term outcome. However our understanding of factors associated with higher burden is poor. We propose that carers’ cultural backgrounds and health belief models will influence their perceived burden of care, over and above that explained by severity of illness.
Patients with FEP and their primary Carers were recruited from the Early Intervention Service. Patients and Carers completed a range of validated measures, self-report ethnicity and demographic information together with the Multidimensional Health Locus of Control and Caregiver Burden Inventory.
Significant correlations were found between carer burden and health beliefs, which differed by ethnicity and gender. High physical burden was experienced by Black carers with an external locus of control; time restrictions and emotional burden correlated with an external locus of control in Asian carers. For White carers, external locus of control correlated with time dependence burden. In all ethnic groups female carers experienced more time dependency, physical and developmental burden. No significant correlations were found between patient measures of severity or duration of illness and carer burden.
The type of burden experienced by carers differed between gender and ethnicity and was related to their health belief models. Thus the explanation and understanding of illness appears to be more salient than simply a patient’s severity of illness when considering the development of carer burden. Interventions to tackle high carer burden, and thus expressed emotion to improve outcome in patients, may need increasing focus here.