ALEX COHEN

R E S P O N S E TO THE I N V I T E D C O M M E N T A R I E S

I would like to thank Byron Good and this journal for the extraordinary opportunity to express my views on this topic in such a forum. I would also like to thank the invited commentators for the obvious seriousness with which they considered my views. The fact that their comments contain strong criticisms points to the importance of this topic. I would have been disappointed by simple dismissals or easy agreements. The comments are thoughtful and serve to highlight the important aspects of the debate. In this response I will concentrate

on two specific points raised by the commentators and, more generally, make a case for incorporating ethnographic methods into the study of the course and

outcome of schizophrenia. Hopper, Sartorius, and Warner dismiss my doubts about informant reliability.

Although Hopper has questioned the sufficiency of the Bemard et al. (1984) review which cautioned against the use of information gathered through retrospective interviewing, a recent, empirical work on this matter supports my views. In a study which compared concurrent and retrospective interviews on stressful life events, Raphael, Cloitre, and Dohrenwend (1991) found that only one-quarter of the events mentioned by informants during ten monthly inter- views were reported retrospectively at the end of the study period. In addition, the strongest predictor of whether or not a life event was remembered and reported in the retrospective interview was how long ago it occurred: as length of time increased the chances for recall decreased. The researchers went on to claim that "the vagueness of the checklist categories and their inconsistent use

by respondents" (72) further compromised reliability. Although Sartorius and Hopper believe that "serious events" (e.g. hospitalizations and psychotic episodes) are more likely to be remembered than less stressful incidents, that

does not seem to be the case. And even if there was a strong, positive correlation between the "seriousness" of a given event and its recollection at a retrospective

interview, the problem of informant accuracy would not be resolved. First, what constitutes a "serious event" and how do informants categorize it as being important to the course of schizophrenia? In view of the great range of cultural and individual beliefs about mental illness, these questions become especially troublesome. Second, it is not at all apparent that hospitalization, or for that matter, length of time in any treatment modality, would serve as an accurate proximate measure of either duration or severity of a given psychotic episode.

My contention that the patient samples might be biased also met with sharp

Culture. Medicine and P.rychiatry 16: 101-106, 1992. © 1992 Kluwer Academic Publishers. Printed in the Netherlands.

102 ALEX COHEN

criticism. In particular, Hopper, Sartorius, and Warner cited the "leakage" studies in WHO Collaborative Study on Determinants of Outcome of Severe Mental Disorders (DOSMD) that were conducted to determine whether sig- nificant numbers of persons with schizophrenia were missed by the case-finding methods utilized in each of the catchment areas. The results of these studies, according to Sartorius et al. (1986: 913), demonstrated that "the extent of known leakage in most centres was small to moderate." Yet if one looks at the data presented in Table 4 (914) it is difficult to understand how that conclusion was

reached. The number of cases possibly missed was undetermined for three sites: Ibadan, Moscow, and Rochester. Two sites had moderate rates of missed cases 1" Cali (9.9% estimated) and Aarhus (17.5%). Two other sites had extremely high rates: Prague (70.6%), and Agra (55.2%, estimated). That leaves only six sites out of thirteen in which the rate of "leakage" was truly minimal and another two in which it was moderate. 2

In addition, DOSMD recognized some of the problems with the case-finding methods in several of the sites and took them into account when calculating incidence rates. Such procedures are reasonable for rate estimation, but DOSMD

went on to claim, "such numerical considerations ... are of little consequence for the study of the clinical and social characteristics of the patients" (914, emphasis added). This latter assumption is not reasonable. The reasons for

missing large or unknown proportions of the total number of persons with schizophrenia in a given area can profoundly influence the nature of the samples selected for investigation. For example, why was violence a reason for first contact with a "helping" agency in about one quarter of the cases in the develop-

ing countries while it was a factor in only about one-tenth of the cases in the developed countries (917)? Furthermore, high attrition among the DOSMD

samples (24% and 29% in developed and developing countries, respectively) could introduce systematic biases. Left et al. (1990: 59-60) report that IPSS compared - on the factors of age, sex, marital status, and diagnosis - the original cohort with those patients who were successfully followed up and found no systematic differences. But this only avoids the issue: if one is investigating the course and outcome, that is, the process of schizophrenia, comparison of measures from one point in time in order to determine what might have hap- pened to part of the original cohort over a period of five years is troublesome. The assumption of no significant differences between included cases and the large proportion of those lost to the study (due to being missed in the case- finding process or through attrition) seems unwarranted.

Belief in the representativeness of the samples investigated by Waxier- Morrison, the International Pilot Study of Schizophrenia (IPSS), and DOSMD entails another assumption: pathways to treatment involve neutral processes.

However, there are too many powerful sociocultural and socioeconomic forces determining access to various types of treatment and shaping illness behavior to

RESPONSE 103

accept this notion without question. Edgerton (1969) writes that the "recognition" and treatment of mental illness is a negotiated process which takes jural and moral considerations into account. Cultural beliefs about disease, plural medical systems, access to care, and symptomatology, among other factors, also involve choice and negotiation and play important roles in determin- ing how often and the manner in which persons receive care. This being the case, we should be wary of drawing conclusions from cross-cultural studies which have not been explicitly sensitive to cultural issues and the contexts in

which behavior takes place. It is for that reason I would urge those who are conducting research on

schizophrenia to include an ethnographic component in their work. It is gratifying that Hopper, Sartorius, and Waxler-Morrison recognize the need for such pursuits. Warner, on the other hand, believes that longitudinal, multi-site ethnographic research into the lives of persons with schizophrenia is "so difficult logistically and so inordinately expensive as to be next to impossible." This is untrue on both counts. First, anthropologists have been involved in several multi-site studies. For example, Goldschmidt's Culture and Ecology Project in East Africa included eight sites in four separate cultures (Edgerton 1971), and the Whitings' Six Cultures Project began with six sites and even- tually included a total of fourteen (Whiting and Whiting 1975 and Whiting and Edwards 1988). Second, the issue of expense is a red herring. The cost of funding five to ten anthropologists at each DOSMD site to conduct ethnographic research into the day-to-day lives of persons suffering from psychosis would

certainly be insignificant to the costs, both monetary and human, which are exacted from individuals and societies by severe mental disorders. What is really at issue here are the criteria to be used to prioritize the allocation of financial resources. That is, does the value of ethnographic data about the day-to-day lives of persons with schizophrenia justify the comparatively small cost of the

research? I believe it does. Wamer reads my critique of method to mean I do not believe that there are

important cross-cultural differences in the course and outcome of schizophrenia. To the contrary, it was Wamer's (1985) work, along with H.B.M. Murphy's

(1982), that first prompted me to become interested in this topic. I was already

predisposed by my background in anthropology to believe that some cultures

have a relatively benign influence on persons with severe mental disorders while other cultures are relatively pernicious in their effects on persons so afflicted. However, questions raised by Kennedy (1973) and Edgerton (1980) about problems with the cross-cultural research compelled me to reevaluate the available evidence. The intention of this critique was not to disabuse anyone of the notion of the cross-cultural variability in the course and outcome of schizophrenia, but to demonstrate certain inadequacies in the data, stimulate debate over these questions, and propose new research strategies that will help

104 ALEX COHEN

us more fully understand schizophrenia. If, as Spiro (1986: 271-272) writes, anthropological generalizations about

regularities in group differences are only possible because of "the wide range of diversity in the social, cultural, and psychological characteristics [among] human groups," then the purported cross-cultural variation in the prognosis for schizophrenia is of extraordinary importance because it offers a natural laboratory in which to reveal specific sociocultural factors associated with better prognosis for schizophrenia. 3 With such knowledge, we may be able to improve the care and treatment of persons with schizophrenia and other severe mental disorders. In view of the international crisis in mental health and the inadequacy, especially in the Third World, of the treatment systems (Kleinman and Sugar 1991), any advancement in this area would be a contribution of inestimable value.

It is my opinion that anthropological research has an essential contribution to make in the effort to understand schizophrenia and in the development of efficacious, humane care and treatment for this disorder. First, anthropologists are ideally suited to investigate fundamental questions of cultural ecology: How are the subsistence needs of persons with schizophrenia met in a variety of cultural settings? Presuming diverse subsistence requirements and strategies to meet them, how will the demands of various cultures impact differentially on the course and prognosis of schizophrenia? Questions such as these were inves- tigated by the Adaptation of the Homeless Mentally Ill Project (Koegel, in this volume) through ethnography with a group of mentally disabled individuals in the Skid Row section of downtown Los Angeles. As the findings of this research are published I am confident they will demonstrate the importance of anthropological research in this field. Ideally, similar projects should be established world-wide at a number of sites. Ethnographic information of this nature would go a long way toward settling questions about the extent to which cultures exert benign or deleterious effects on those persons with severe mental disorders. It would also help us to evaluate empirically the supposition that "traditional" societies are more tolerant and supportive than the industrialized nations of the West.

Second, specific aspects of social life, especially family life and work, are often invoked as possible mechanisms by which cultures convey positive or negative influences on the course and outcome of schizophrenia. As Hopper points out, however, "quasi-mythic" notions about the nature of families and work lead to sociocultural hypothesizing "in a virtual ethnographic vaccuum." It is clear that long-term, on-going participant-observation is the best methodology for illuminating these questions. I believe, along with Wamer, that the conse- quences of being reintegrated into society through work may be beneficial; I have little doubt, along with those working in the area of expressed emotion (EE), that the families of persons with schizophrenia have an impact on

RESPONSE 105

prognosis. Where I differ is my skepticism about the available evidence. Structured interviews about these matters with patients and their families at two or more points in time are not adequate; nor are idealized notions about work

and inexact proximate measures o f societal demands on individuals. Without

detailed, cross-cultural knowledge about the day- to-day lives of persons with

schizophrenia, these theoretical issues will not be resolved.

In conclusion, I hope my remarks will not be taken as implying an anti-

psychiatry or ant i -Westem medicine bias on my part, or that cross-cultural

studies o f the course and outcome of schizophrenia should be l imited to

anthropological pursuits. Research in this area demands a mult idiscipl inary

approach (Edgerton 1980). Furthermore, anthropologists need to acknowledge the contributions of Western medicine (Konner 1991) and psychiatrists need to

reconceptualize the fundamental research problems in the study o f schizophrenia

(Jablensky 1990). Hopefully, debate over these questions will stimulate a greater

cooperation across disciplines which will result in an enhanced understanding of

severe mental disorders.

ACKNOWLEDGEMENTS

Once again, I would like to thank Robert Edgerton and Thomas Weisner for their suggestions during the preparation o f this response.

NOTES

I Percentage of missed cases was calculated as number of missed cases divided by total number of cases (found plus missed). 2 The actual number of sites that should have been considered by DOSMD poses another question. One of the basic assumptions of statistical analysis is the independence of cases. It would appear this assumption is violated by the inclusion in the research of three sites from North India: Agra, Chandigarh/rural, and Chandigarh/urban (and some might argue that Dublin and Nottingham are not sufficiently independent to be considered separately, either). Furthermore, if Ibadan, Moscow, Rochester, Agra, and Prague are excluded from analysis because of an excessive or indeterminate number of missed cases, and the data from Chandigarh/rural and urban are pooled, then the number of sites becomes seven (possibly six) rather than thirteen. The remaining sites are Cali and Chandigarh representing the developing countries, and Aarhus, Dublin, Nottingham, Honolulu, and Nagasaki representing the developed countries. 3 Too often, anthropologists neglect intra-cultural diversity (Pelto and Pelto 1975). This is unfortunate because while there may be cross-cultural variation in prognosis for schizophrenia, there are obvious intra-cultural differences. Investigation of these latter contrasts should prove as valuable as the cross-cultural research.

106 ALEX COHEN

REFERENCES

Bernard, H.R., P. Killworth, D. Kronefeld, L. Sailer 1984 The Problem of Informant Accuracy: The Validity of Retrospective Data.

Annual Review of Anthropology 13:495-517. Edgerton, R.B.

1969 On the "Recognition" of Mental Illness. In Changing Perspectives in Mental Illness. S.C. Plog and R.B. Edgerton, eds. Pp. 49-72. New York: Holt, Rinehart, and Winston.

1971 The Individual in Cultural Adaptation: A Study of Four East African Peoples. Berkeley: University of California Press.

1980 Traditional Treatment for Mental Illness in Africa: A Review. Culture, Medicine and Psychiatry 4:167-189.

Jablensky, A. 1990 Closing Remarks: In Search for Causes of Schizophrenia, Vol. II. H. Hafner

and W.F. Gattaz, eds. Pp. 436--440. Berlin: Springer-Verlag. Kennedy, J.G.

1973 Cultural Psychiatry. In Handbook of Social and Cultural Anthropology. J.J. Honigmann, ed. Pp. 1119-1198. Chicago: Rand McNally.

Kleinman, A. and J. Sugar 1991 Whither Culture in a Biological Era in Psychiatry? Anthropology UCLA,

Special Issue, Spring. Pp. 20---42. Koegel, P.

1992 Through a Different Lens: An Anthropological Perspective on the Homeless Mentally Ili. Culture, Medicine, and Psychiatry 16: 1-22.

Konner, M. 1991 The Promise of Medical Anthropology: An Invited Commentary. Medical

Anthropology Quarterly 5: 78-82. Left, J., N. Sartorius, A. Jablensky, M. Anker, A. Korten, W. Gulbinat, and G. Ernberg

1990 The International Pilot Study of Schizophrenia: Five-year Follow-up Findings. In Search for the Causes of Schizophrenia, Vol. II. H. Hafner and W.F. Gattaz, eds. Pp. 57-66. Berlin: Springer-Verlag.

Pelto, P.I., and G.H. Pelto 1975 Intra-Cultural Diversity: Some Theoretical Issues. American Ethnologist

2: 1-18. Raphael, K.G., M. Cloitre, and B.P. Dohrenwend

1991 Problems of Recall and Misclassification with Checklist Methods if Measuring Stressful Life Events. Health Psychology 10: 62-74.

Sartorius, N., A. Jablensky, A. Korten, G. Ernberg, M. Naker, J.E. Cooper, and R. Day 1986 Early Manifestations and First-Contact Incidence of Schizophrenia in Different

Cultures: A Preliminary Report on the Initial Evaluation Phase of the WHO Collaborative Study on Determinants of Outcome of Severe Mental Disorders. Psychological Medicine 16: 909-928.

Spiro, M. 1986 Cultural Relativism and the Future of Anthropology. Cultural Anthropology

1 : 259-286. Whiting, B.B. and C.P. Edwards

1988 Children of Different Worlds: The Formation of Social Behavior. Cambridge: Harvard University Press.

Whiting, B.B., and J.W.M. Whiting 1975 Children of Six Cultures: A Psycho-Cultural Analysis. Cambridge: Harvard

University Press.