Objectives

4.1.1 To develop an EMIC, the UK EMIC for Depression, for white Britons suffering from clinical neurotic depression (ICD-9).

4.1.2 To interview subjects on this British EMIC in order to:

a) Systematically detail lived experience of depression along the following EMIC dimensions:

i) Socio-cultural characteristics ii) Patterns of distress

iii) Stigmatising notions iv) Perceived causes, and v) Help seeking behaviour

b) Examine the relationship between these emic dimensions (i.e. patterns of distress, stigmatising notions, perceived causes, and help seeking behaviour) with etic models of psychopathology measured through a clinical rating instrument, the Hamilton Depression Rating Scale (HDRS). 4.1.3 Translate results into hypotheses for local clinical and health planning

initiatives including compliance and public health education programmes 4.2 Rationale

Psychiatric illnesses differ from other medical categories in that the social context and the patients’ own beliefs shape the very pathology to a great extent, and this is particularly so for minor psychiatric disorders. However, Western psychiatric assessments have been

criticised as they disregard the cultural dimensions of illness, including the local and personal meanings that shape psychological distress in any patient group (Paul 1955, Korsch 1968, Hunt 1989, Kleinman 1978).

In recent years, clinical anthropology has developed models to explain the interplay of biological (‘disease’ related) and social (‘illness’ related) data (Kleinman 1980, Littlewood 1990). Medical anthropology, which emphasises the hermeneutic meanings of illness, has however focused either on the developing world or exclusively on ethnic minorities (Korsch 1968, Marsella and White 1982, Sartorius et al 1983). This assumes that the “white majority” culture is “culture-free”, experience illness, which are simple expressions of the underlying pathology. Medical anthropologists argue that patient constructions in any particular society are no less culturally constructed than in another (Gaines Hahn and Gaines 1985, Littlewood 1990). Indeed this proposition is a core feature of the ‘new cross cultural psychiatry’ framework articulated by Kleinman and Littlewood over two decades ago. There are yet no studies in Europe or the United States that have examined lay concepts and explanations of psychiatric disorders among the majority population nor which evaluate their clinical significance. While attempts have been made to study lay beliefs and popular ideas among patients sufrering from a range of medical diseases such as diabetes, hypertension and AIDS (Helman 1990, Fitzpatrick

1984, Blumhagen 1980, Hunt 1990), there are no studies on lay models of depression among white Britons excepting psychologically oriented attitudinal studies (such as Fumham’s, 1991) nor research that seeks to integrate both qualitative and quantitative data. Such studies suggest that attention to patients’ interpretations is clinically essential

and can be successfiilly integrated into the practice of health care. This approach is known as clinical anthropology (Littlewood 1990, Chrisman and Maretzki 1982).

Lay concepts include attitudes and notions that could be considered to ‘stigmatise’ the psychiatric patient. In addition, stigma is known to be directed towards certain chronic illnesses like leprosy and AIDS, is associated with low self-esteem and helplessness, thus complicating the management of such disorders (Fitzpatrick et al 1984, Weiss 1990). Mental health professionals have so far been unable to tackle the problem of stigma among psychiatric patients. We lack basic clinical data on stigmatising attitudes within Western culture, its influence on the outcome of psychiatric disorders or indeed the effects of psychiatric services in shaping stigmatising attitudes. The previous chapter discussed Kleinman’s framework, which devised an approach that now guides a large body of research in clinical anthropology: the “Explanatory Model” framework. To recapitulate, this suggests that people hold ideas and concepts (Explanatory Models or Cultural Models), which provide meaning for their distress, help them to express and, shape their illness’ experience and choose a particular form of treatment. These models are usually not volunteered, but they are analogous to explanatory (‘biomedical’) models of disease (aetiology/why, pathology/mechanism, signs/recognition, diagnosis/name, treatment/care, and prognosis/fears over future consequences, etc) held by physicians. Often, this creates a communication gap between health professionals and patients, leading to premature termination of treatment, poor compliance and resort to alternative medicine (Kleinman 1978, Helman 1990). Estimates of poor compliance and non­ adherence to treatment offered in psychiatric out-patient clinics range from 29% to 65% (Foulks et al 1986). Current attempts to develop powerful and effective treatments for

psychiatrie disorders would therefore be inappropriate if patients do not comply with these treatments and this is particularly the case for depressive disorders for which effective pharmacological treatments are now available.

This study will therefore seek to establish and develop an approach that is responsive both to patients’ perception of their illness and to professional theories of disease, and will set up for the first time a data base on indigenous concepts o f neurotic depression among the white British population. The elicitation of such beliefs will ideally enable clinicians to understand the language of their patients, recognise areas o f divergence and help to maximise adherence to treatment. It follows that if health professionals understand patients’ ideas and concepts, and communicate using a language and idiom that the patient is able to share, then considerable progress could be achieved in dealing with resistance to medications and other treatments. It is evident that we need to know much more about the ways in which these ideas are constructed and shaped, including their internal logic and the manner in which they are articulated. Considerable progress has already been achieved by earlier researchers who developed the EMIC, which identifies explanatory models and facilitates analysis of the relationship between the models and outcome measures of interest to the clinician (Weiss 1992, 1995, 1997). By using clinical outcome parameters (see ‘Method’ section below), the study will establish a relationship between beliefs on one hand with clinical psychopathological measures. The data from the present study will also be suitable for cross-cultural comparison with findings from ongoing EMIC based research on depression in India, other centres detailed in chapter three, and future studies in Britain.

4.3 Method

The study was carried out in three stages: 4.3.1 Stage I

This researcher adopted a qualitative ethnographic approach to formulate pilot questions, proceeding from the outline of previous EMICS detailed in chapter three, and utilised the existing structure of a specific EMIC (used to study depression in India). This stage took 24 months to complete and is detailed in the following chapter (Chapter Five).

4.3.2 Stage II

50 semi-randomly^ chosen depressed subjects o f white British origin and nationality (i.e. those born in the United Kingdom and were British citizens), of equal sex distribution, attending out-patient and in-patient NHS psychiatry clinics serving the Camden and Islington community with clinic diagnosis o f ICD-9 Neurotic Depression (see final section of this chapter for definition) were selected and administered the British EMIC, followed by a clinical assessment of their diagnosis based on the ICD- 9, and subsequently rated on the Hamilton Depression Rating Scale (HDRS, Appendix B). Patients with organic brain disorder and functional psychoses including manic depressive disorder were excluded. Similarly, those subjects bom outside United Kingdom were excluded.

4.3.3 Stage III

All interviews were tape recorded (following informed consent), transcribed and numerically coded based on the pre-coded British EMIC developed in Stage I. Quantitative data was entered into a database (DataEase) whilst qualitative prose data was ‘reformatted’, entered into a word processing format (word perfect 5.1 DOS

version), and subsequently imported into a computer assisted qualitative data analysis software for retrieval analysis sessions (Text based Beta). A linked computer software programme, DBMS Copy, was used to import numerical data from DataEase into SAS and SPSS for statistical analysis. The total time taken from interview to data entry was approximately 18 hours (3 hours for the EMIC and HDRS interview, 8 hours for transcribing, 4 hours for coding and 3 hours for data ‘cleaning’ and data entry).

Training for administering EMIC interviews, coding responses, data base construction and management, and software skills was provided by Professor Mitchell Weiss, senior author of the EMICs. This involved continuing discussions and meetings in London, Boston and Basel over the full period of this research. Formal inter-rater reliability exercises were not done as, unlike other EMIC sites, all interviews were conducted solely by this researcher. Additionally, in view of this researcher’s extensive experience with earlier EMIC interviews, a formal inter-rater reliability exercise was considered unnecessary. Professor Weiss participated in pilot interviews and with Professor Roland Littlewood in subsequent discussions on coding narrative responses during Stage I of this research.

ICD-9 criteria for Neurotic Depression (WHO 1980)

A neurotic disorder characterised by disproportionate depression which has usually recognizably ensued on a distressing experience, it does not include among its features delusions or hallucinations, and there is often preoccupation with the psychic trauma which preceded the illness, e.g., loss of a cherished person or possession. Anxiety is also frequently present and mixed states of anxiety and depression should be included here. The distinction between depressive neurosis and psychosis should be made not only upon the degree of depression but also on the presence or absence of other neurotic and psychotic characteristics and upon the degree o f disturbance of the patients behaviour.