Psychiatric research in Europe has always been hindered by the multitude of countries, each with their own language, their own mental health care system and their own cultural traditions. For instance, the European Union (EU) consists of 15 countries, in which 11 official languages are spoken. In the course of 2004, 10 new countries, most from Eastern Europe, will join the EU, adding another seven languages. It is not only this diversity in languages, but also the differences in mental health care systems, standards of living and locally developed research instruments that are often used that make it difficult to compare data between EU countries.
In order to improve scientific quality, the European Network for Mental Health Service Evaluation (ENMESH) was established in 1991 to promote the development and dissemination of study designs, research instruments, mental health outcome indicators and relevant forms of statistical indicators. At the first ENMESH conference in Amsterdam, the Netherlands, in 1994, it was decided to initially focus on five topics that were considered to be important in evaluating psychiatric care for patients suffering from severe mental illness: quality of life, need for care, client satisfaction, costs of services and consequences for patient's caregivers.
In 1996, this initiative led to the EPSILON project (European Psychiatric Services: Inputs Linked to Outcomes and Needs) in England, Denmark, the Netherlands, Italy and Spain, in which research instruments for these five topics were translated and tested in a population of mostly outpatients (Becker et al., 2000). The Involvement Evaluation Questionnaire (IEQ) (Schene and van Wijngaarden, 1992) was chosen as the instrument to assess caregiver consequences. The IEQ was translated according to World Health Organization regulations and tested in focus groups, and it proved to be sufficiently valid and reliable in all sites (van Wijngaarden et al., 2000). In this report, special attention will be given to the applicability of the IEQ in cross-national research.
The IEQ is an 81-item questionnaire to be completed by the caregiver, covering events from the prior four weeks. The IEQ consists of seven sections, which take about 20 to 30 minutes to complete. The core section contains 31 items on caregiver consequences. They can be summarized into four scales (Table 1). In addition, a 27-item total score can be computed. The other six sections of the IEQ are: sociodemographic data of patient and caregiver (15 items), a cost section (eight items), the 12-item General Health Questionnaire (GHQ) (Goldberg and Williams, 1988), caregiver's use of professional help (three items), consequences for patient's children (11 items), and one open question for comments and additions.
Possibility of Cultural Bias
The cross-cultural applicability of the IEQ translation was checked and adapted in local focus groups meetings (Knudsen et al., 2000), and its conceptual validity was checked with Simultaneous Component Analysis (Kiers, 1990). These analyses proved that the IEQ assesses caregiver consequences in all countries in the same way (van Wijngaarden et al., 2003). The introduction, which explains the scoring system, was checked on cultural validity in each translation and focus group process. Despite this good validity, nothing was known of a possible cultural bias. Caregiver consequences might be affected by cultural factors. Cross-ethnic research on families of people with psychiatric disabilities in the United States found racial and ethnic differences on perceived family burden (Lefley, 1998), indicating the existence of culturally induced response tendencies. In order to study possible cultural bias, the EPSILON data were re-analyzed.
Method and Results
The five EPSILON samples consisted of 288 caregivers of patients with a diagnosis meeting ICD-10 schizophrenia criteria (F20-F25). The samples were compared on patient characteristics (e.g., age, sex, education, psychiatric symptoms and disabilities), caregiver characteristics (e.g., age, sex and net income), characteristics of patient-caregiver contact (e.g., number of days lived together) and site differences. These sample characteristics were used as covariates to calculate adjusted IEQ means scores.
In Table 2, the mean sub-scale scores are presented (unadjusted scores). Analysis of variance showed that the five sites differed significantly on all scales. In all, the London, Santander, Spain, and especially the Verona, Italy, respondents reported higher levels of caregiver consequences, and respondents in Amsterdam and Copenhagen, Denmark, reported the lowest.
Becker T, Hülsmann S, Knudsen HC et al. (2002), Provision of services for people with schizophrenia in five European regions. Soc Psychiatry Psychiatr Epidemiol 37(10):465-474.
Becker T, Knapp M, Knudsen HC et al. (2000), Aims, outcome measures, study sites and patient sample. EPSILON Study 1. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. Br J Psychiatry 177(suppl 39):s1-s7.
Goldberg D, Williams P (1988), A User's Guide to the General Health Questionnaire. Windsor, U.K.: NFER-Nelson.
Kiers HAL (1990), SCA: A Program for Simultaneous Components Analysis. Groningen, the Netherlands: iec ProGAMMA.
Knudsen HC, Vzquez-Barquero JL, Welcher B et al. (2000), Translation and cross-cultural adaptation of outcome measurements for schizophrenia. EPSILON Study 2. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. Br J Psychiatry 177(suppl 39):s8-s14.
Lefley HP (1998), The family experience in cultural context: implications for further research and practice. In: Families Coping With Mental Illness: The Cultural Context, Lefley HP, ed., New Directions for Mental Health Services, No. 77. San Francisco: Jossey-Bass Publishers, pp97-106.
Magliano L, Fadden G, Madianos M et al. (1998), Burden on the families of patients with schizophrenia: results of the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol 33(9):405-412.
Mat'as-Carrelo LE, Chvez LM, Negrón G et al. (2003), The Spanish translation and cultural adaptation of five mental health outcome measures. Cult Med Psychiatry 27(3):291-313.
Schene AH, Tessler RC, Gamache GM et al. (2001), Measuring family or caregiver burden in severe mental illness. In: Mental Health Outcome Measures, 2nd ed., Tansella M, Thornicroft GM, eds. London: Gaskell, pp97-106.
Schene AH, van Wijngaarden B (1992), The Involvement Evaluation Questionnaire. Amsterdam, the Netherlands: Department of Psychiatry, University of Amsterdam.
Schene AH, van Wijngaarden B, Koeter MW (1998), Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24(4):609-618.
Tsang H (2001), The Chinese version of the Perceived Family Burden Scale for individuals suffering from schizophrenia. Transcultural Psychiatry 38(4):533-536.
van Wijngaarden B, Schene AH, Koeter M et al. (2000), Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire-European version. EPSILON Study 4. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. Br J Psychiatry 177(suppl 39):s21-s27.
van Wijngaarden B, Schene A, Koeter M et al. (2003), People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophr Bull 29:573-585.