Patient and carer perceptions of need and associations with care-giving burden in an integrated adult mental health service

Objective To identify patients’ and carers’ perceptions of need in inpatient and community settings and investigate the relationship between need and caregiver burden. Method The study was conducted across a metropolitan mental health service in Sydney, Australia. Patients (n=407) and carers (n=50) completed the Camberwell Assessment of Need Short Appraisal Schedule. Carers also completed a shortened version of the Involvement Evaluation Questionnaire to assess caregiver burden. Results When completing the assessment tools, patients and carers in hospital settings were asked to consider the 4 weeks preceding hospitalisation; in the community, patients and carers were asked to consider the previous 4 weeks. These data show a high percentage of patients in hospital and community settings have unmet needs for company, daytime activities and intimate relationships. Inpatients had more unmet needs than community based patients. Agreement between patients’ and carers ratings’ of need ranged from ‘poor’ to ‘moderate’. There was a strong relationship between unmet need and burden from the carer’s perspective. Patients with and without carers had similar numbers of needs. Carers of patients recently admitted to hospital reported a significantly higher burden. Conclusions Carers of inpatients experienced significantly more burden than carers of outpatients. Opportunities to access support, information and education should be readily available and not contingent upon demonstrating a close familial relationship to the patient. We found that unmet need was significantly related to burden, suggesting that meeting patient needs could reduce carer burden