Family burden and mental illness: Methods of evaluation
KOUKIA E., MADIANOS M.G.

Over the past four decades researchers’ interest has focused on measuring and evaluating the caregivers’ burden. During this period a variety of instruments have been developed in order to evaluate the different parameters, which are engaged and characterize family burden. The present article seeks to review the family burden instruments that have been developed from 1960 up to now; Information about theoretical framework, psychometrics and limitations of use are cited.

The first instruments have been developed in the 1960s. Grad and Sainsbury were the first to develop an instrument, personal interview, which assessed mainly the objective burden. In the late 60’s Hoening and Hamilton were the first to make a distinction between objective and subjective aspect of family burden and constructed a semi-structured interview.

In the 1970’s two new instruments have been developed, the Family Evaluation Form by Spitzer et al (1971) and the Questionnaire on Resources and Stress by Holroyd (1974) which both evaluated objective burden. For both instruments there is no available information pertaining to reliability and variety.

In the 1980’s the caregivers’ burden has attracted a great interest by the researchers and as result a total of 15 instruments have been developed. Some instruments have been designed to measure objective burden: The Objective burden scale of Test and Stein, the Burden on the Family Scale by Scheme and Noh and Avison’s questionnaire based on a previous scale by Pasamanick (1967).

Other instruments are specialized in measuring subjective burden like those of Potasznik and Nelson(Subjective Burden Scale), which is used in combination with that of Test and Stein and Jacob et al’s instrument, which have been designed only for relatives of patients with depression. Birchwood and Smith’s instrument also measures objective burden and the Scale for Assessment of Family Distress by Gopinath and Chatuverdi in 1986, is a self-administered questionnaire for which is not required a special training.

There are a number of researches who has developed instruments to evaluate the total burden (the objective and subjective aspect) like those of Creer et al (1982), Tessler et al (1989) and Cook et al (1987). For the Social Behavior Assessment Schedule by P;att et al, the interviewers require special training and a training guide is available. Pai and Kapur have been influenced by the work of earlier researchers and have developed the Burden on Family Interview Schedule. Family Burden Scale by Madianos et al (1987) designed an instrument for use with first-degree relatives of patients with depression like those of Fadden (1984) and Coyne et al (1987).

In the 1990’s they tried to develop more sophisticated instruments. Miller et al have constructed the Texas Inventory of Grief-Mental Illness for subjective burden. Clark and Drake (1994), the Family Economic Burden Interview and Magliano et al, the Family Options Questionnaire which evaluates the objective burden.

They have also developed a number of instruments to measure the total burden:

The Significant Other Scale by Herz et al (1991), the Questionnaire for family problems-FPQ by Morosini et al (1991), the Involvement Evaluation Questionnaire by Schene and Van Wangaarden (1992), which is self-administered, the Perceived Family Burden Scale by Levene et al (1996), the Experience f Caregiving Inventory by Szmukler et al (1996) and the Family Caregiving of Persons with Mental Illness Survey by Biegel et el (1994).

The structured interview Family Burden Interview Schedule by Tessler et al (1992), for which a special training is not required and a training guide is available and also the Burden Assessment Scale by Reinhard et al (1992), which can be used either as a personal interview or as a self-administered questionnaire. Greenberg et al (1993), have developed theFamily Burden and Services Questionnaire, which can only be used as a telephone interview.

We have also found three other instruments with no available information. the Family Members Perceptions of Enforced Phyciatric Institutionalization by Axellson-Ostman (1989), the Norwegian Family Impact Questionnaire by Sorensen (1993/94) and theImpact of Mental Illness on Family/Household Members by Vine et al (1993/94).

The current review identified 22 instruments. The choise of an instrument for use in the routine clinical practice has to meet certain criteria based on the purpose of the study.

Key words: Instruments, family burden, mental health problems, schizophrenia.