2. METHODOLOGY 1. Theoretical Framework 1.1 Overview of Cultural Epidemiology Theoretical framework of Cultural Epidemiology as suggested by Weiss et al., (1992) was applied for the present study. The framework and methods of Cultural Epidemiology arose from efforts to achieve an effective interdisciplinary collaboration for health research by integrating the concepts and methods of anthropology and epidemiology. To make this integration possible, a framework and research instruments were developed from the insider’s perspectives known collectively as EMIC interviews (Weiss, 1997; 2001). EMIC interviews are instruments used for assessing representations of illness or specified health problems from the perspective of affected persons, their family members or community members. Classical epidemiology concerns itself with the occurrence, distribution and determinants of disease in a population from the etic or professional point of view. This provides a way to identify priorities and to evaluate the impact of policies and programmes and these are essential in as much as findings from such research influence priorities and the allocation of resources. Such information however, is not enough to ensure that policy conforms to local needs and a different but complementary set of questions and ways to answer them are needed (Weiss, 2001). Cultural Epidemiology with its focus on the occurrence and distribution of local representation of illness experiences, meanings and behaviour (emic perspective) is positioned to play a supplementary role to basic epidemiology and anthropology. Cultural epidemiology therefore integrates these two perspectives to study locally valid illness representations and their distributions in the population to enhance local understanding and priorities for control (Weiss, 1997; 2001). Useful guidance for local programme implementation requires consideration not only of the classical epidemiology of diseases and disorders, but also attention to the local experience of illness, its meanings, and both risk-related and help-seeking behaviours in the community (Weiss et al., 1992; Weiss, 1997; 2001). Medical 22 anthropology is especially important for identifying local concepts, categories, and context of illness, which may indicate questions about their impact on risk, vulnerability, clinical course and public health outcomes (Weiss et al., 1992). By clarifying the distributions of variables that characterise illness and how these variables affect risk, behaviour and selected outcomes, the epidemiology identifies practical implications of illness experience, meaning, and behaviour, thereby informing clinical practice and public health (Weiss et al., 1992). 1.1.1 Development of Cultural Epidemiological Framework Traditionally, medical anthropologists considered aspects of health and illness that are not addressed in the biomedical model of health and disease (Loewe, 2004). Medical anthropologists therefore distinguished illness from disease (O'Neil, 2006). Diseases and disorders are defined with reference to professional concepts, training or practice (O'Neil, 2006). These are often biomedical, but may also be psychological, based on symptom criteria in the absence of underlying theory of cause, or with reference to other professional concepts on which a medical system is based, such as humoral concepts in Ayurveda (O'Neil, 2006; Weiss et al., 1992). Illness on the other hand, refers to patients’ ways of experiencing and explaining their health problems (Weiss et al., 1992; Weiss, 1997). Professional etic and local emic concepts may overlap, and the same term may also have different professional and lay meanings, which may complicate communications between health professionals and the general population (Weiss et al., 1992; Weiss, 1997; 2001). Elaborating this distinction between disease and illness, and recognizing that the distinction frequently created problems in the communications between patients and healers, anthropologist Arthur Kleinman formulated the concept of explanatory model to specify essential features of illness (Kleinman, 1980; 1995). As an emic elaboration of illness, the explanatory model framework was formulated to serve the interests of clinical history taking in the course of clinical consultations. The explanatory model framework takes its name from patients’ explanations of the nature of their suffering, often extending well beyond the scope of physical disease, and incorporating other non-biological features of the illness including social distress, financial disability, emotional suffering, fear and hopelessness, among others (Kleinman, 1980; 1995). The conceptual elements of the explanatory model 23 framework however were not well-suited for application in health research; cultural epidemiological categories enabled systematic investigation into patients’ explanatory models, and into the distribution of the experience, meanings and behaviours that constitute these models (Weiss et al., 1992). Like medical anthropology, cultural epidemiology studies locally valid representations of illness-related experience, meaning, and behaviour, but it is particularly concerned with the distributions and effects of these representations in a population (Weiss et al., 1992). These representations are specified by variables and narratives that account for the experience of a designated illness or other health problem, its meaning and associated illness behaviour. Based on the explanatory model framework, cultural epidemiology addresses the primary components of the framework – illness experience, its meaning, and related behaviour and operationalizes these concepts into reliable, valid, categories suitable for comparison as patterns of distress (PD), perceived causes (PC), and help-seeking (HS), which together represent the nature of illness (Figure 3) (Weiss et al., 1992). a. Patterns of Distress (PD): PDs are reported categories of personal distress. These categories represent the total illness experience, reflecting both somatic symptoms and other troubling features such as social disruptions, financial disability, psychological burden etc. b. Perceived Causes (PC): Many people believe that multiple factors contribute to becoming ill and nearly everyone constructs some sort of story explaining why they are ill. c. Help seeking (HS): Most people take some sort of action when they fall ill, including using home remedies, consulting with family or friends, seeking advice from a traditional healer or midwife, prayer, fasting, attending a local clinic, purchasing drugs from a pharmacy, going to a private doctor etc. Help seeking is an account of patients’ help seeking behaviours, from self-help to outside help. It includes both formal and informal forms of care and advice. Ethnographic research is an essential element of cultural epidemiology, and constitutes the first phase of cultural epidemiological research. All research occurs within an ethnographic context; in this context, illnesses are experienced, meanings 24 of illnesses are defined, and appropriate help seeking behaviours are agreed upon (Weiss et al., 1992; Weiss, 1997; 2001). Cultural epidemiological research, however, draws from this context to create a locally relevant study instrument (for the 2nd phase) capable of creating an account of what it is to be ill in that place, at a given time, under current circumstances (Weiss et al., 1992; Weiss, 1997; 2001). Thus, the integrated cultural epidemiological approach attempt to create linkages between disciplines that formerly had none and by doing so, to create a dialogue between those locally afflicted by disease, the researchers who address it, and the policy makers / clinicians etc. who implement change (Weiss et al., 1992; Weiss, 1997; 2001). Cultural epidemiology research typically uses Explanatory Model Interview Catalogue (EMIC) interviews, which are semi-structured interviews that are locally adapted to assess representations of illness from the perspective of affected persons with a designated health problem (Weiss et al., 1992; Weiss, 1997). EMIC refers to and is based on the formulation of an illness explanatory model that systematically clarifies the experience of illness from the point of view of the people who are directly affected. Individual variations in the socio-cultural meaning of illness have been recognized as important determinants in help seeking, choice of treatment, ability to cope, use of support and the quality of life (Weiss et al., 1992; Weiss, 1997). Behind the concept of EMIC is the recognition that individuals and their families often have their own concepts and categories for illness, which may differ from those, held by clinicians / professionals (Weiss et al., 1992; Weiss, 1997). How ill health is perceived, how experiences are interpreted and how choices are made about treatment may all form part of the total picture that needs to be taken into account (Weiss, 1997). The different views captured by EMIC can be related to the ethnographic terms ‘emic’ (ideologies of local communities) and ‘etic’ (ideology of professionals outside local communities) (Weiss et al., 1992; Weiss, 1997). Essentially, it is the dichotomy between ‘local insider’ and ‘professional outsider’ that is of interest (Kleinman, 1980; 1995). The concept and opposition represented by ‘emic’ and ‘etic’ perspectives in EMIC provide the framework for understanding the 25 relationship between biomedical models and people’s experiences (Weiss et al., 1992; Weiss, 1997). ILLNESS (Malnutrition)