Hostname: page-component-76fb5796d-wq484 Total loading time: 0 Render date: 2024-04-27T02:14:12.399Z Has data issue: false hasContentIssue false
  • English
  • Français

A longitudinal population-based study of carers of people with psychosis

Published online by Cambridge University Press:  05 February 2016

A. W. C. Poon ,
C. Harvey ,
A. Mackinnon  and
L. Joubert
A. W. C. Poon*
Affiliation:
University of New South Wales, School of Social Sciences, Sydney, New South Wales 2052, Australia
C. Harvey
Affiliation:
Psychosocial Research Centre, Department of Psychiatry, University of Melbourne & NorthWestern Mental Health, 130 Bell Street, Coburg, VIC 3058, Australia
A. Mackinnon
Affiliation:
Orygen, The National Centre of Excellence in Youth Mental Health, 35 Poplar Rd, Parkville, VIC 3052, Australia
L. Joubert
Affiliation:
Department of Social Work, Melbourne School of Health Sciences, University of Melbourne, Parkville, VIC 3010, Australia
*
*Address for correspondence: Dr Abner Weng Cheong Poon, University of New South Wales, School of Social Sciences, Sydney, New South Wales 2052, Australia. (Email: w.poon@unsw.edu.au)
Get access Rights & Permissions [Opens in a new window]

Abstract

Aims.

Few studies have examined the experiences of carers of people with psychosis using a representative sample. Aiming to obtain generalisable results concerning carers in the context of increased emphasis on involving carers in Australian mental health service delivery and policy frameworks, this study recruited carers within the second Australian national survey of psychotic disorders (Survey of High Impact Psychosis, SHIP). Given that most SHIP participants had long-term illness and extended relationships with carers, the health and wellbeing of carers as a group were expected to be relatively stable. However, since it is unknown whether carers’ health and wellbeing would change, our main aim was to explore change and stability in carers’ health and wellbeing and the relationship between any changes experienced by individual carers and corresponding SHIP participants’ functioning over time.

Methods.

Ninety-eight caregivers of SHIP participants were recruited at baseline and completed validated instruments assessing their health and wellbeing. Seventy-eight carers were re-interviewed at 1-year follow-up. Clinical factors were extracted from the SHIP database. Wilcoxon matched-pairs signed-rank test and t-test were used to analyse changes in variables over time. Cross-lagged analyses were conducted to identify possible causative relationships in changes in SHIP participant and carer variables.

Results.

A substantial percentage of carers experienced social isolation (28.6%), psychological distress (37.7%) and poorer quality of life than population norms. There were no statistically significant changes between baseline and follow-up scores for almost all carers’ health and wellbeing variables, other than a poorer perception of their quality of life in relation to their physical health after 1 year. Cross-lagged analyses suggested that poorer functioning of people with psychosis influenced carers’ social isolation, grief and psychological distress.

Conclusions.

Findings show that carers’ perception of their health and wellbeing did not improve within current mental health service delivery frameworks over time. Carer's persistently poor health and wellbeing suggests a pressing need to enhance services that improve carers’ health and wellbeing especially their physical health and the functioning of people with psychosis whom they support.

Keywords

Caregiverslongitudinal studyphysical healthpsychotic disorders
Type
Original Articles
Information
Epidemiology and Psychiatric Sciences , Volume 26 , Issue 3 , June 2017 , pp. 265 - 275
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Australian Bureau of Statistics (2012). Australian Health Survey: First Results. Government of Australia. http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4338.0main+features42011-13 Google Scholar
Awad, AG, Voruganti, LNP (2008). The burden of schizophrenia on caregivers: a review. Pharmacoeconomics 26, 149–162.CrossRefGoogle ScholarPubMed
Bland, R, Darlington, Y (2002). The nature and sources of hope: perspectives of family caregivers of people with serious mental illness. Perspectives in Psychiatric Care 38, 61–68.CrossRefGoogle ScholarPubMed
Caqueo-Urízar, A, Miranda-Castillo, C, Lemos Giráldez, S, Lee Maturana, S-L, Ramírez Pérez, M, Mascayano Tapia, F (2014). An updated review on burden on caregivers of schizophrenia patients. Psicothema 26, 235–243.Google Scholar
Caqueo-Urízar, A, Boyer, L, Baumstarck, K, Gilman, S (2015). Subjective perceptions of cognitive deficits and their influences on quality of life among patients with schizophrenia. Quality of Life Research 24, 2753–2760.Google Scholar
Castle, DJ, Jablensky, A, McGrath, JJ, Carr, V, Morgan, V, Waterreus, A, Stain, H, McGuffin, P, Farmer, A (2006). The diagnostic interview for psychoses (DIP): development, reliability and applications. Psychological Medicine 36, 69–80.Google Scholar
Department of Human Services (2006). Caring Together: An Action Plan for Carer Involvement in Victorian Public Mental Health Services. Mental Health Branch, Victorian Government Department of Human Services, Melbourne Victoria: Melbourne.Google Scholar
Finkel, SE (1995). Causal Analysis with Panel Data. SAGE: Thousand Oaks, CA.Google Scholar
Froggat, D, Fadden, G, Johnson, DL, Leggatt, M, Shankar, R (2007). Families as Partners in Mental Health Care: A Guidebook for Implementing Family Work. World Fellowship for Schizophrenia and Allied Disorders: Toronto.Google Scholar
Godress, J, Ozgul, S, Owen, C, Foley Evans, L (2005). Grief experiences of parents whose children suffer from mental illness. Australian and New Zealand Journal of Psychiatry 39, 88–94.Google Scholar
Gómez-de-Regil, L, Kwapil, TR, Barrantes-Vidal, N (2014). Predictors of expressed emotion, burden and quality of life in relatives of Mexican patients with psychosis. Journal of Psychiatric and Mental Health Nursing 21, 170–179.CrossRefGoogle ScholarPubMed
Green, SB (1991). How many subjects does it take to do a regression analysis. Multivariate Behavioral Research 26, 499–510.Google Scholar
Gupta, S, Isherwood, G, Jones, K, Van Impe, K (2015). Assessing health status in informal schizophrenia caregivers compared with health status in non-caregivers and caregivers of other conditions. BMC Psychiatry 15, 1–11.CrossRefGoogle ScholarPubMed
Hawthorne, G (2006). Measuring social isolation in older adults: development and initial validation of the friendship scale. Social Indicators Research 77, 521–548.Google Scholar
Hawthorne, G (2008). Perceived social isolation in a community sample: its prevalence and correlates with aspects of peoples' lives. Social Psychiatry and Psychiatric Epidemiology 43, 140–150.CrossRefGoogle Scholar
Hawthorne, G, Herrman, H, Murphy, B (2006). Interpreting the WHOQOL-Bref: preliminary population norms and effect sizes. Social Indicators Research 77, 37–59.CrossRefGoogle Scholar
Hayes, L, Hawthorne, G, Farhall, J, O'Hanlon, B, Harvey, C (2015). Quality of life and social isolation among caregivers of adults with schizophrenia: policy and outcomes. Community and Mental Health Journal 51, 591–597.CrossRefGoogle ScholarPubMed
IBM Corp (2012). IBM SPSS Statistics for Windows. IBM Corp: Armonk, NK.Google Scholar
Jansen, JE, Gleeson, J, Cotton, S (2015). Towards a better understanding of caregiver distress in early psychosis: a systematic review of the psychological factors involved. Clinical Psychology Review 35, 56–66.Google Scholar
Kessler, RC, Andrews, G, Colpe, LJ, Hiripi, E, Mroczek, DK, Normand, SLT, Walters, EE, Zaslavsky, AM (2002). Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological Medicine 32, 959–976.CrossRefGoogle ScholarPubMed
Miller, FE, Dworkin, J, Ward, M, Barone, D (1990). A preliminary study of unresolved grief in families of seriously mentally ill patients. Hospital & Community Psychiatry 41, 1321–1325.Google ScholarPubMed
Möller-Leimkühler, A, Wiesheu, A (2012). Caregiver burden in chronic mental illness: the role of patient and caregiver characteristics. European Archives of Psychiatry and Clinical Neuroscience 262, 157–166.Google Scholar
Morgan, VA, Waterreus, A, Jablensky, A, Mackinnon, A, McGrath, JJ, Carr, V, Bush, R, Castle, D, Cohen, M, Harvey, C, Galletly, C, Stain, HJ, Neil, AL, McGorry, P, Hocking, B, Shah, S, Saw, S (2012). People living with psychotic illness in 2010: the second Australian national survey of psychosis. Australian and New Zealand Journal of Psychiatry 46, 735–752.Google Scholar
Morosini, PL, Magliano, L, Brambilla, L, Ugolini, S, Pioli, R (2000). Development, reliability and acceptability of a new version of the DSM-IV Social and Occupational Functioning Assessment Scale (SOFAS) to assess routine social functioning. Acta Psychiatrica Scandinavica 101, 323–329.Google Scholar
Mulligan, J, Sellwood, W, Reid, GS, Riddell, S, Andy, N (2013). Informal caregivers in early psychosis: evaluation of need for psychosocial intervention and unresolved grief. Early Intervention in Psychiatry 7, 291–299.Google Scholar
Ohaeri, JU (2003). The burden of caregiving in families with a mental illness: a review of 2002. Current Opinion in Psychiatry 16, 457–465.Google Scholar
Parker, G, Rosen, A, Emdur, N, Hadzi-Pavlov, D (1991). The Life Skills Profile: psychometric properties of a measure assessing function and disability in schizophrenia. Acta Psychiatrica Scandinavica 83, 145–152.CrossRefGoogle ScholarPubMed
Pirkis, J, Burgess, P, Hardy, J, Harris, M, Slade, T, Johnston, A (2010). Who cares? A profile of people who care for relatives with a mental disorder. Australian and New Zealand Journal of Psychiatry 44, 929–937.Google Scholar
Poon, WC, Joubert, L, Harvey, C (2015). A longitudinal study of the health and wellbeing of culturally and linguistically diverse carers of people with psychosis. International Journal of Social Psychiatry 61, 743–753.Google Scholar
Randolph, C, Tierney, MC, Mohr, E, Chase, TN (1998). The repeatable battery for the assessment of neuropsychological status (RBANS): preliminary clinical validity. Journal of Clinical Experimental and Neuropsychology 20, 310–319.CrossRefGoogle ScholarPubMed
Rosen, A, Trauer, T, Hadzi-Pavlovic, D, Parker, G (2001). Development of a brief form of the Life Skills Profile: the LSP-20. Australian and New Zealand Journal of Psychiatry 35, 677–683.Google Scholar
Shibre, T, Medhin, G, Teferra, S, Wakwoya, A, Berhanu, E, Abdulahi, A, Alem, A, Fekadu, A (2012). Predictors of carer-burden in schizophrenia: a five year follow-up study in Butajira, Ethiopia. Ethiopian Medical Journal 50, 125–133.Google Scholar
Szmukler, GI, Wykes, T, Parkman, S (1998). Caregiving and the impact on carers of a community mental health service. The British Journal of Psychiatry 173, 399–403.Google Scholar
Thunyadee, C, Sitthimongkol, Y, Sangon, S, Chai-Aroon, T, Hegadoren, KM (2015). Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia. Nursing & Health Sciences 17, 412–419.Google Scholar
Train, GH, Livingston, G, Manela, M (2001). Addressing the needs of carers of older people: the Islington study. International Journal of Geriatric Psychiatry 17, 85–86.Google Scholar
Trauer, T, Duckmanton, RA, Chiu, E (1995). The Life Skills Profile: a study of its psychometric properties. Australian and New Zealand Journal of Psychiatry 29, 492–499.CrossRefGoogle ScholarPubMed
van Wijngaarden, B, Schene, A, Koeter, M, Becker, T, Knapp, M, Knudsen, HC, Tansella, M, Thornicroft, G, Vázquez-Barquero, J-L, Lasalvia, A, Leese, M, Epsilon study group (2003). People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophrenia Bulletin 29, 573–586.Google Scholar
Weimand, BM, Hall-Lord, ML, Sällström, C, Hedelin, B (2013). Life-sharing experiences of relatives of persons with severe mental illness - a phenomenographic study. Scandinavian Journal of Caring Sciences 27, 99–107.Google Scholar
WHOQOL Group (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine 28, 551–558.Google Scholar
Yesufu-Udechuku, A, Harrison, B, Mayo-Wilson, E, Young, N, Woodhams, P, Shiers, D, Kuipers, E, Kendall, T (2015). Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. The British Journal of Psychiatry 206, 268–274.Google Scholar