Caregiving in first-episode psychosis: social characteristics associated with perceived 'burden' and associations with compulsory treatment

Abstract

Aims: High incidence of psychosis and compulsory treatment within black and minority ethnic (BME) groups in the UK remain a concern. Psychosis has an impact on families and family involvement is important in predicting compulsory treatment. We therefore aimed to report the levels and predictors of caregiver burden in first-episode psychosis, in white British, and BME groups of carers, and investigate their relevance to compulsory treatment.

Methods: A total of 124 caregivers were interviewed soon after the onset of psychosis using the General Health Questionnaire, GHQ-28, the Experience of Caregiving Inventory, the Personal and Psychiatric History Schedule, and the MRC Sociodemographic Schedule.

Results: The overall level of distress as measured by GHQ-28 was high (mean 50, SD 11.4). Feelings of carer burden were also high (mean total negative score 72.5, SD 34.8), increased in men, and with carer age. Neither ethnicity nor social class nor social support was associated with distress or burden. Compulsory treatment was predicted by carer burden (as indicated by carer reports of 'problems with services' (OR 1.08; 95% CI 1.01, 1.15; P = 0.023)); this was particularly evident in the black Caribbean group of carers (OR 1.28; 95% CI 1.04, 1.57; P = 0.02) CONCLUSION: Carers of adults with first-episode psychosis experience considerable psychological distress and feelings of burden. There was a specific association between carer burden, specifically in terms of experience of services, and compulsory admission of service users, particularly in the black Caribbean group. Better ways of liaising with carers and targeted efforts to reduce carer burden at illness onset are needed.

Keywords: caregiving; compulsion; first-episode psychosis.