Ethnic Differences in Perceived Family Burden and Service Use Patterns in Schizophrenia
A Cross-Cultural, Cohort Study
Helen Lloyd, Tom Burns and Elizabeth Hsu
Advances in psychosocial and medical treatments have positively influenced the outlook for those who suffer from schizophrenia. Antipsychotic drugs are now widely used to help alleviate some of the more distressing symptoms of schizophrenia and reduce relapse rates, whilst psychosocial, occupational and cognitive therapies help provide sufferers with coping mechanisms and practical skills to aid rehabilitation. However, despite such advances the outcome in schizophrenia remains mixed, with international studies reporting controversial findings (Jablensky et al , 1992) .
For example, The International Pilot Study of Schizophrenia (IPSS) reported a higher proportion of patients with better outcomes in India and Nigeria , compared with more developed nations such as the UK , USA and Japan . A study examining the IPSS results found that potential sources of bias e.g., differences in follow up, arbitrary grouping of centres and diagnostic ambiguities failed to explain the reported differences (Harrison et al , 2001) . Subsequently, the WHO (1979) suggested that future research should focus on elements inherent in different cultural contexts to explain the differences in course and outcome, e.g., family size and interaction, functioning and emotional atmosphere.
The primary aim of this research is to measure levels of perceived burden in primary parental carers of Indian and White ethnicity, who reside in the UK and care for a son or daughter with schizophrenia. We also aim t o test the association of level of perceived burden with a series of patient variables (e.g. symptoms, disability), and family variables (e.g. size, structure, expressed emotion - EE) and service use patterns. The final aim of the main study is to test whether the levels of perceived parental burden predicts patient outcome equally in each ethnic group.
The study sample comprises two groups of forty patients diagnosed with schizophrenia, with one primary parental carer (the relative with the most contact i.e. mother or father). The two groups are: Indian participant/carer dyads (patient born in the UK or moved before age 11 and both parents born in India ), and White British participant/carer dyads. Both groups will be recruited from West London Mental Health Trust which is home to a large homogenous North Indian population.
Patients will be approached for participation if they are 18-50 years of age, White British or North Indian Ethnicity, ICD-10 (World Health Organisation, 1992) diagnosed with schizophrenia or schizoaffective disorder of 2-15 years duration, and currently living with, or in weekly contact with a primary parental carer. Semi-structured patient interviews will be conducted by Helen Lloyd to elicit information on the following:
Symptoms - Positive & Negative Syndrome Scale (PANSS) (Kay et al , 1987)
Service use - Client Service Receipt Inventory (CSRI) (Beecham and Knapp, 1992;Knapp and Beecham, 1990)
Disability - Disability Assessment Schedule (DAS) (Sartorius and Janca, 1996)
Social networks - Social Network Schedule (SNS) (Leff et al , 1990)
Explanatory models of illness - Short Explanatory Model Interview (SEMI) (Lloyd et al , 1998)
The WHO Symptom Checklist (ICD-10) will used to confirm the clinical diagnosis of each participant (World Health Organisation, 1992) .
A Hindi speaking research psychiatrist blind to the status of each patient will interview nominated parental carers using the following adapted self-report measures:
Perceived Burden - Perceived Family Burden Scale (PFBS) (Levene et al , 1996)
General Health - General Health Questionnaire (GHQ-12) (Goldberg and Hillier, 1979)
Experience Of Caregiving - (ECI) (Szmukler et al , 1996)
Social Networks - Social Network Questionnaire (SNQ) (Magliano et al , 1998)
Explanatory models of illness - Short Explanatory Model Interview (SEMI) (Lloyd et al 1988)
Five-minute sample of speech - (FMSS) will be audiotape recorded to measure expressed emotion (Malla et al , 1991)
Patients' will be followed-up during the period of one year to identify any relapse in their illness. A composite measure of relapse will be used since re-hospitalisation (the most widely used measure of outcome in schizophrenia), may not adequately reflect the differences in relapse rates given known ethnic differences in service usage (Minas, 2001) . Relapse will be identified by the presence of any of the following: re-hospitalisation, significant deterioration in mental state requiring a major change in treatment and/or, a decrease in level of functioning as rated by the Global Assessment of Functioning GAF (overall reduction of 20 points or a score <50).
The aim of this sub-study is to provide an understanding of the underlying socio-cultural and personal processes which influence Indian and White parental carers' responses to illness behaviours. Goffman's (1963) conceptualisation of symptoms as social transgressions and resultant social obligations will be used to guide the investigation. Efforts will also focus on examining care giving narratives elicited from both Indian and White parents for cultural comparison.
From the main sample, five purposively selected high and five low burden carers (as rated on the PFBS) from each ethnic group will be subject to in-depth study by open-ended interviews. From this sub-sample, two purposively selected 'typical' high and two 'typical' low burden of care participant/carer dyads, if agreeable, will be further investigated as case studies.
Data collection commenced in January 2005 and is expected to continue until September 2006.
This study is being supervised by Professor Tom Burns and Dr Elisabeth Hsu and is partly supported by an educational grant from Janssen-Cilag Europe.
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