Carers of People Living with Psychosis
Carers of people living with a mental illness are often peripheral in the clinical setting, or considered only in relation to the person living with the mental illness. Our research group is investigating the health and wellbeing and needs of carers of people living with a mental illness and the effectiveness of services designed to meet these needs.
There is evidence for unmet need among carers, with a substantial percentage of carers experiencing social isolation (28.6%), psychological distress (37.7%) and poorer quality of life than population norms, in addition to experiencing prominent grief. Carers from culturally and linguistically diverse backgrounds have even poorer mental health and quality of life than Australian-born carers. In a follow-up study conducted by our group, there were few changes for carers over the course of one year other than a worsened perception of their quality of life related to their physical health. Analyses suggested that poorer functioning of people with psychosis influenced carers’ social isolation, grief and psychological distress. Findings suggested a pressing need to assess and improve carers’ health and wellbeing, especially their physical health, as well as to provide effective psychiatric rehabilitation to improve the functioning of their relatives with psychosis.
The Carer Peer Support Worker (CPSW) project aimed to increase carer access to educational and emotional support, to assess the impact of this support, and report on learnings and feasibility of the project. A carer peer support worker is someone who has had lived experience as a carer or family member of a person with a mental illness. A CPSW was employed to provide education, information and emotional support to other carers / family members of adults with mental health conditions accessing clinical services at the Broadmeadows team at North West Area Mental Health Service. Qualitative and quantitative data were collected from families and carers and mental health staff in order to evaluate the acceptability, uptake and impact of the CPSW project. Follow-up telephone interviews have been conducted with carers as part of a minor research thesis which have provided a rich understanding of the experiences of carers who have received CPSW support.
Further collaborations to extend this carer research are being explored with Beijing University Institute of Mental Health.
North West Area Mental Health Service
Centre for Youth Mental Health, University of Melbourne
School of Social Sciences, University of New South Wales
School of Social Work, University of Melbourne,
Morgan, V., Castle, D., Bush, R., Galletly, C., Harvey, C., McGorry, P., McGrath, J., MacKinnon, A., Stain, H., Hocking, B., Waterreus, A., Jablensky, A. & Neil, A. Survey of High Impact Psychosis (SHIP). 2 years. Commonwealth Department of Health and Aging.
Harvey, C., Joubert, L. & Poon, A. Non-English speaking caregivers of people with psychosis: What is the impact of caregiving, How does it relate to the relative’s psychotic illness and what are the implications for service delivery? 2 years. William Buckland Foundation.
Irving, K. Embedding a carer peer support worker in an adult community mental health service: feasibility, access and impact. 1 year. NorthWestern Mental Health research seed funding.
Poon WC, Harvey C, McKinnon A & Joubert L. A longitudinal population-based study of carers of people with psychosis. In revised submission to Epidemiology and Psychiatric Sciences.
Coker F, Williams A, Hayes L, Hamann J & Harvey C. Meeting the needs of diverse consumers experiencing mental illness and their families through family psychoeducation: Evidence to support practice. In press in Journal of Mental Health.
Hayes L, Hawthorne G, Farhall J, O’Hanlon B & Harvey C. Quality of Life and Social Isolation Among Caregivers of Adults with Schizophrenia: Policy and Outcomes. Community Mental Health Journal, 2015; 51, 591-597.
Poon W C, Joubert L & Harvey C. A longitudinal study of the health and wellbeing of culturally and linguistically diverse caregivers of people with psychosis in Australia. International Journal of Social Psychiatry, 2015; 61(8), 743-753.
Goodison T & Tracey J. Embedding carer peer support in an adult community mental health service. TheMHS Conference. 2015. Canberra.
Harvey C & O’Hanlon B. Family psycho-education for families of people with schizophrenia and other psychotic disorders. Australian and New Zealand Journal of Psychiatry, 2013; 47: 516 - 520.