Caregiving in first‐episode psychosis: social characteristics associated with perceived ‘burden’ and associations with compulsory treatment

Abstract

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.

Impaired family functioning in psychosis and its relevance to relapse: a two-year follow-up study

“…One apparent conclusion is that high levels of FB lead to relapse. However, given that recent findings suggest that high levels of burden and psychological distress among caregivers of FEP patients are present soon after the onset of the illness [59,60], FB could be another aspect of family reactions to the caregiving role, especially in the present sample where all information about FB has been derived from the caregiver's account, which is not independently verified by social role measures from patients. Conceptualising EE and FB as interactive rather than unidirectional processes, we suggest that high burden of caregiving is likely to generate negative emotions toward the patient, such as increased CC, confounding caregiving experience and possibly hindering the process of recovery.…”

The Experiences of Parents Providing Support to Adult Children with Schizophrenia

“…The participants referred to feelings of loss and grief, but did not report any experiences of depression, anxiety or substance use which have been reported as common amongst caregivers (Awad and Voruganti 2008;Boydell et al 2013). It could be that these had not been experienced, or the participants were unwilling to raise them.…”

Do Family Interventions Improve Outcomes in Early Psychosis? A Systematic Review and Meta-Analysis

“…It is known that carers of individuals with early psychosis experience high levels of distress and related health problems (Addington et al, 2003; Boydell et al, 2014; Jansen et al, 2015; Onwumere et al, 2015), which can persist (Lee et al, 2006). In their qualitative investigation of 80 early psychosis carers, Lavis et al (2015) noted that carers of people with early psychosis describe an ongoing level of distress and a continual adjustment process.…”