Clinicians’ perspectives on categorizing children’s
behavioral difficulties as ADHD in Pune, India
Supervisor: Dr. Christian Bröer -‐ Second reader: Dr. Maarten Bode
Medical Anthropology and Sociology
University of Amsterdam
GSSS
Inhoudsopgave
ACKNOWLEDGMENTS ... 3
INTRODUCTION ... 4
PROBLEM STATEMENT ... 5
RELEVANCE ... 7
1. SCALES OF ATTENTION ... 8
THEORETICAL FRAMEWORK ... 8
Globalization and creolization ... 8
Ecological niche ... 11
METHODOLOGY ... 12
Research location ... 13
Respondents ... 13
Sampling and sample ... 13
Data collection ... 15
Data analyses ... 16
Ethical consideration ... 16
Reflection and limitation ... 17
2. PRESENTING ISSUES ... 19
HELPSEEKING ROUTES ... 19
THE PRESENTING QUEST ... 21
WHAT IS AT STAKE ... 27
3. NEGOTIATING ADHD ... 30
WEBS OF MEANING ... 30
TO LABEL OR NOT TO LABEL ... 36
TOWARDS A MULTIPLICY OF UNDERSTANDINGS ... 41
PARTIAL CONNECTIONS ... 42
APPENDIX ... 46
APPENDIX 1 SAMPLE RESPONDENTS ... 47
APPENDIX 2 INTERVIEW GUIDELINE ... 49
APPENDIX 3 COMPARISON PERSPECTIVES CLINICIANS ... 52
APPENDIX 4 INFORMED CONSENT ... 53
APPENDIX 5 NEWSPAPER ARTICLE RISE ADHD ... 54
APPENDIX 6 PHARMA-‐ SPONSORED POSTERS ADHD ... 55
APPENDIX 7 NEWSPAPER ARTICLE STIMULANT DRUGS ... 56
Acknowledgments
This thesis is the product of a ten-‐week study in Pune, India and-‐a six month process of
constructing and deconstructing the quest for categorization of childhood behavior as ADHD in creolizing the world. This result would not have been possible without a range of people, to whom I wish to express my gratitude.
On my mission to learn more about professional’s perceptions of challenging behavior, I spent most of my time knocking on doors of hospitals, clinics and universities in the city of Pune. Luckily, those doors most often opened up, and so did the professionals to whom I spoke. I hereby want to thank all of those who gave time to participate in this study. I would not have knocked on so many doors if it wasn’t for the help of Hedyeh and Iman -‐ I owe my pleasant stay in Pune to your hospitality, friendship and handwritten maps of the city.
On my mission to write up the findings, my family and friends were most valuable. I wish to thank them for their continued encouragement in pursuing this study, and for tolerating my attention deficit in the last few months. Hannah, Marlies & Sebas, Elles, Lotte; who sat through numerous deja-‐vu’s of academic worries, and were kind enough to hear me out and take me out of my thesis bubble at the right time. Margriet, my mom, who hosted a number of thesis-‐camps and reminded me that learning has no set route nor an expiration date. I owe a special thanks to Rochana, who masters the art of changing perspectives and encouragement like no one else.
On my mission to pursue the art of doing research in Medical Anthropology and Sociology, I met several inspiring teachers who I wish to thank for their contribution to my process of learning.
To Christian Bröer, who guided me through this study in a series of thought provoking
conversations -‐ your style of supervision encouraged me not to take for granted what seemed self-‐ evident, and allowed me to build on my pre-‐ excising knowledge of mental health – and Maarten Bode, who was kind enough to make time to review my research plans prior to fieldwork and to discuss my findings during the stage of data analyses.
Introduction
Ever since I began working as a therapist in Dutch mental health care, I have been interested in the controversial area of classifying childhood struggles as psychiatric concern.
In my experience, childhood struggles might be presented as ‘he throws with chairs’, ‘she quit school’ or ‘he deals drugs’. It is upon the clinician, partly in collaboration with parents, to decide if these difficulties should be addressed as a psychiatric condition. With these experiences in mind, the issue of medicalization caught my interest during the master’s program Medical Anthropology and Sociology (Felipe, 2011:5; Rafalovich, 2013; Singh et al., 2013).
In my work in the Netherlands, I noticed great differences in the way clinicians approached children’s behavioral struggles. In community-‐based work in impoverished areas these struggles were often not perceived as psychiatric concerns, but instead were framed as a social problem. Mental health, in this community, was often perceived as a luxury ‘for famous people’ or suitable for ‘lunatics’ (Horton, 2007:806). In a clinical setting, however, similar struggles were more likely to be perceived as mental health problem and categorized accordingly. This is how I became interested in the empirical variations of medicalization, as mediated by the context in which clinicians practice and caretakers seek help.
I found a particular interest in readings diagnosing children’s mental health categories across the world. This is how I got introduced to writings on the ‘globalization of psychiatry’, and this is how I became acquainted with critical voices in this field of study and got drawn into ongoing debates on diagnosing Attention Deficit Hyperactive Disorder (ADHD) in ‘non Western’ settings. These debates, I noticed, often expressed concerns over the homogenizing effects of introducing ‘Western based psychiatry’ in a context where these categories had not originated (Timimi & Leo, 2009a). I also noticed that these writings often approached medicalization ‘after it has taken place’, in other words once a diagnosis was granted. When and how and which childhood difficulties are
medicalized, I suggest, can differ from context to context. The clinician, and the context he or she operates in, is key in this process of translating or not translating struggles as a mental health concern. The way that professionals give meaning to behavioral problems, I suggest, is partly embedded in and shaped by the context within which they work. By doing so, he or she mediates
between local knowledge on the one hand and universalistic knowledge on the other. Local, in this case, can refer to knowledge about needs, resources and beliefs in the given context -‐ and universal can refer to knowledge from western-‐based psychiatry and classification systems (Watters, 2010).
This is how I became interested in the process of categorizing behavioral difficulties as ADHD through the eyes of psychiatrists, psychologists and paediatricians in Pune, India (Singh et al., 2013). A body of literature suggested a worrisome impact of the spread of the ‘Western’ categorisation of ADHD in developing countries due to globalization. However, there are few writings from the emic perceptions of the designated ‘medicalizers’ and ‘globalizers’ themselves: the clinicians in India who asses reported behavioral difficulties and categorize these as ADHD, or not.
Problem statement
A range of studies has indicated a sharp rise of ADHD diagnosis worldwide (Singh, Filipe, Bard, Bergey, & Baker, 2013:385). India is one of the non-‐Western settings were this rise has been reported (David, 2013; Hasan & Tripathi, 2014). This global rise has been an object of study for medical anthropology and sociology: Singh (2011:889) described these studies ‘as fueled with worries and concerns over medicalization of childhood behavior’. Timimi argued that ADHD is wrongfully explained as universal psychiatric disorder. The rise of ADHD should rather be explained as a result of globalization, which creates the possibility of categorizing deviant behaviour as a mental health concern on a global scale (Rafalovich, 2013, Timimi, 2005, 2010). The spread of this category is facilitated through the work of psychiatrists, psychologists and pediatricians in low-‐income settings. This spread is argued to be worrisome, as the adoption of ADHD as a concept might go hand in hand with adopting built-‐in Western notions and the built-‐in Western approach. This is argued as challenging, as there are always local ideas and rules about acceptable and deviant child behavior and how this should be addressed in addition to local ideas about health, illness, causation and healing (Timimi, 2011). Using the category of ADHD, therefore, might shape which children’s behaviours are perceived as deviant and could replace local ways of interpreting and handling these. These critiques of cultural imperialism and homogenization are echoed in Ethan Watters’ book Crazy like us, the globalization of an American psyche. (Watters, 2010).
Amaral (2007) argued that ’a consistency of prevalence of ADHD, does not necessarily mean that the that phenomenon is interpreted the same way around the world’ (in:Singh et al., 2013:385).
This suggests that there are multiple approaches and pathways to ADHD, each shaped by the context in which caretakers live and clinicians practice. This was shown in a small-‐scale study in Goa, India, where parents expressed concerns such as ‘ear wax’, ‘physical weakness’, ‘headaches’ and educational difficulties upon seeing a psychiatrist (Wilcox et al, 2007: 1605). In cases where these difficulties were categorized according to the DSM category ADHD, parents did not adopt its biomedical meaning and did not perceive the difficulties as a mental health disorder (Wilcox et al, 2007: 1609). Instead parents framed children’s struggles differently (Wilcox et al, 2007: 1608). These findings indicate that clinicians might need to take living conditions, explanatory models, class, stigma, local healing traditions, ideas about childhood and perceptions concerning body and mind into account in their work (Wilcox et al., 2007; Patel et al., 1998). More so, these findings indicate a need to re-‐evaluate the current dominant frameworks to interpret the global rise of ADHD. To my best knowledge there has been no research on ADHD from a creolization point of view.
Philosopher Annemarie Mol (2002:23) argued that a doctor does not bring a disease into being; instead ‘there must be a patient who worries or wonders about something and a clinician who is willing to attend to it’. Present research has looked into parents, nurses, and teachers’ explanatory models for ADHD in India (David, 2013; Hasan & Tripathi, 2014; Wilcox, Washburn, & Patel, 2007). To my best knowledge there has been no research on categorizing behavioral difficulties as ADHD in India from a clinicians point of view.
This choice of study was informed by a multitude of recommendations for future empirical research on ADHD in low income and non-‐western settings. Timimi(Timimi & Leo, 2009b) proposed to study ‘what different behavioral norms and ideals are found in different settings? (Timimi & Leo, 2009b:214). Singh(2011:890) proposed to explore ‘ what is done prior to an ADHD diagnosis’ and to study ‘ how physical spaces, social spaces and national spaces help to create and to constrain an ADHD diagnosis?’ Lastly, Felipe suggested that future research on ADHD ‘should reconstruct the pathway to an ADHD diagnosis’. This research project aims to take up a small part of these quests. This resulted in the following question for this study:
“How and when do psychiatrists, psychologists and pediatricians in Pune categorize reported challenging behavior as ADHD?
Relevance
The study situates itself in the social science debate concerning medicalization in relation to
globalization (Watters, 2010) and cross-‐cultural validity of mental health diagnosis (Timimi, 2005; Watters, 2010). Specifically, it positions itself within ongoing debates on the impact of ‘
globalization of the Psy science’ in low-‐income settings (Watters, 2010). Creolization theory (Hannerz, 1987) and ecological niche theory (Singh, 2011; 2013) were used as a theoretical frameworks to approach this research. This study aims to contribute to ‘diversification and localization of ADHD analyses’ (Singh, 2011:889).
The first chapter, Scales of attention, reviews theoretical frameworks that have informed current studies on ADHD in non-‐western settings. Creolization theory and ecological systems theory are proposed as fitting analytical frameworks for this study. An insight is provided into how this framework shaped the methodological approach to this research.
The second chapter, Presenting issues, looks into clinician’s perceptions of help-‐seeking routes and help-‐seeking reasons. Building on the creolization and ecological niche perspectives, delaying factors for help seeking are distinguished and interpreted. It is argued that reasons to seek help have to outrank reasons not to do so; and what the presented complaints represent in the industrializing city of Pune is explored.
Chapter three, Negotiating ADHD, provides an insight into how clinicians explain and approach behavioral difficulties associated with ADHD. It is argued that ADHD is not a fixed diagnosis -‐ ADHD ‘happens’ in negotiation and in dialogue with what is most valued among parents and clinicians. This study distinguishes four strategies for categorization of behavioral difficulties and explores how these empirical variations of categorization can be explained through creolization and ecological niche theory.
1. Scales of attention
Undertaking research requires choosing from a number of theoretical and methodological approaches.
Theory was used in four ways in this study. Firstly, theory was used to map current debates on categorizing behavioral challenges as ADHD. Secondly, it was used to deconstruct and problematize existing paradigms on the ‘globalization of medicalization’. Thirdly, it served as a tool to inform and shape data collection. Lastly, theory was used as an analytic tool to explain and interpret the
empirical findings.
Different scales of attention allow for different analyses of data, and this chapter presents the theory and methodology that informed this study.
Theoretical framework
The central concepts in this study –namely globalization, medicalization and categorization– are all part of ongoing scholarly debates. Following Mol (2002:41), I chose to avoid words that ‘are central to raging controversies in the literature’, and followed the suggestion to find newer terms ‘that resonate fewer agendas’ instead. I noticed that the words diagnosis, globalization and
medicalization in the literature were often loaded words -‐ each had a great explanatory power connected to them. These terms were often accompanied by the connotation of a ‘significant
ethical problem’ (Singh et al., 2013:385). Following Annemarie Mol’s example, this research aims to approach these concepts ‘minus the negative connotations attributed to them’.
Globalization and creolization
The practice of diagnosis in cross-‐cultural psychiatry has been an area of interest for
anthropologists and sociologists for a long time. Studies on idioms of distress in non-‐Western settings, as well as studies on mental health care for migrant or refugee populations are well publicized (Kleinman, 1987; Kohrt et al., 2014; Nichter, 1981). These studies looked into ‘cultural differences in mode of onset, symptomatology, and help-‐seeking’ (Kleinman, 1987). The study of globalization of the ‘psy sciences’ is a relatively new area of debate and study. Theorist Robertson (1992) described globalization as a concept that refers to ‘both the compression of the world and the intensification of consciousness about the world as a whole’ (in: Eriksen, 2007:4).
trade and transnational economic activity, faster and denser communications networks and
increased tensions in -‐and between-‐ groups due to intensified exposure”. The study of globalization has many well publicizedfaces; though this thesis will only review those positions that are relevant for this study(Eriksen, 2007:4).
One position in the debate is that globalization is a one-‐directional process that ‘entails global uniformity’ (Eriksen, 2007:8) and ‘happens at an unprecedented speed’. In these writings, the terms ‘global1’ and ‘local’ are often used to indicate two opposing places, and two opposing types of knowledge. I refer to this concern as ‘globalization-‐as-‐hegemony’. It is argued that traditional ways of interpreting complaints can be rapidly replaced by interpretations informed by a biomedical, Western based concepts. The spread of these concepts is facilitated by the global use of -‐ and academic instruction in -‐ diagnostic and classification manuals DSM V and ICD10. These manuals provide benchmarks for ‘mental illness’, and thereby a ‘shared language for comparison’ (Eriksen, 2007:65). Consequently, a psychiatrist in India and the Netherlands can diagnose ADHD following the same descriptive indicators. This is often problematized as a case of ‘category fallacy’
(Kleinman, 1987): suggesting that the category of ADHD lacks coherence and validity in a low-‐ income setting. It is argued that ‘while this category might be valid in its original – Western -‐ context, it presents medicalization of social problems’ in a context such as India (Timimi & Leo, 2009a). This critique is prevalent in a multitude of studies on globalizing mental health
(Summerfield, 2012; Timimi & Leo, 2009a).
This is one connotation of ‘globalization’ in writings in medical anthropology and sociology on the rise of mental health diagnoses worldwide.
Another position the debate contests is this connotation of globalization: arguing that ‘at the very best, this is a truth with serious modifications’ (Eriksen, 2007). The counter voices in this debate argue that ‘it is wrongfully assumed that globalization implies westernization and standardization’ (Eriksen, 2007:5). Hannerz (1990) argued that ‘ no total homogenization of systems of meaning and expression has occurred, nor does it appear like that there will be one any time soon’(Eriksen, 2007:112). A need for a new concept was suggested; a concept that allows room to analyse ‘how apparent identical products are perceived in distinctly local ways’ (Eriksen, 2007:59). Creolization
1 Or universalistic
2 This interviewguide in included in appendix 2. 3 See appendix 4
(Hannerz, 1987) was proposed as an accurate term to refer to this phenomenon (Eriksen, 2007:6).
Creolization refers to ‘the intermingling and mixing of two, or several, formerly discrete traditions or cultures’. Hannerz argued that concepts and services are always adapted to a degree, so that they fit the local context. The concept of creolization emphasizes the malleability of meanings, and
allows us to see that people relate to global diversity in different ways. Eriksen argued that this process goes on nearly everywhere -‐ ‘ but there are important differences as to the degrees, forms and speed of mixing’ (Eriksen, 2007:112). The concept of creolization contributes to the
understanding that adopting and adapting ‘foreign’ flows is not a straightforward process of translating. This is echoed in the following definition of creolization by Glissant (2007): ‘I call creolization the meeting, interference, shock, harmonies and dis-‐ harmonies between the cultures of the world . . . [it] has the following characteristics: the lightening speed of interaction among its elements; the awareness of awareness: thus provoked in us; the reevaluation of the various elements brought into contact (for creolization has no presupposed scale of values); unforeseeable results. Creolization is not a simple cross breeding that would produce easily anticipated results’ (Kirmayer, 2006: 163).
Following Eriksen, I suggest that the criticism of the ‘global psy-‐skeptics’ is ‘at best is a truth with serious modifications’. I suggest that the current frameworks to study globalization of mental health do not allow enough room for interconnectedness and partial connections (Strathern, 2005). These paradigms of the ‘global psy-‐skeptics’ might not have moved along with new ways of
conceptualizing globalization. Psychiatrist Kirmayer (2006) proposed a creolization perspective as a paradigm to study ‘the new cross cultural psychology’. Anthropologist Pinto (Pinto, 2011:483) argued that studying mental health in India needs a concept that allows room to analyze how ‘the plurality of forms of healing and multiple ideas about the self’ are in constant negotiation. This framework should go beyond emphasizing differences between ‘Western psychiatry’ and ‘Indian culture.’
A creolization perspective informed this study in two ways. Firstly, it shaped the aim to not look for ‘how clinicians categorize ADHD differently’, but instead to study ‘how clinicians categorize ADHD adaptably’. The need to study negotiation and adaptation processes is stressed by medical
anthropologist Kienzler (2012:227), who found that the category of Post Traumatic Stress Disorder in Kosovo was not “implemented in cultural voids but are appropriated by local experts and lay people who change and adapt them to fit their respective local realities”.
Secondly, this concept contributed to problematizing and dividing clinicians into contrasting roles of being both ‘Indian’ and ‘trained-‐in-‐western-‐psychiatry’. Strathern, a feminist as well as an
anthropologist, contested that people ‘take turns’ to play different roles. She argued that ‘there are no ‘opposing roles’, instead there are partial connections’. Though clinicians are ‘entry points to an international flow of meaning into national cultures’, the author posed that ‘ there is no walking from one ‘place’ into another (Hannerz, 1987:556; Strathern, 2005:35). The different roles do not constitute half or whole’. Following Strathern, I propose that there is no ‘Indian side’ and ‘western side’(Strathern, 2005:35). Instead of looking for differences, or essentializing these as ‘Western’ or ‘Indian’, this study aims to look for partial connections.
In short, a creolization perspective contributes to analyzing categorization of ADHD as an
interactive process that is shaped by multiple flows and multiple localities, and effects groups in society in multiple ways.
Ecological niche
A core question in the globalizing-‐ADHD debate is ‘whether ADHD fits in the local culture’.
Culture, in one of many definitions, is described as ‘ a shared system of beliefs and practices’ (Singh et al., 2013:385). For this study, I have been hesitant to use ‘culture’ as an analytic concept, as it might refer to an endless amount of variables within one nation state. This complexity is
heightened as for India’s ‘multi every thingness’ -‐ with it’s multiplicity of religions, languages, ethnicity, kinship structures in a country of 1.4 billion people, India is deeply stratified along the lines of class, caste, gender, language and religion. Living conditions in rural and urban areas might differ greatly, and what might be true for a child growing up rural Bihar might not be true for a child growing up in urban Bombay. Or, what might be true for a male child might not be true for a female.
Due to this complexity I suggest that culture, in this research, is not a fitting analytical concept to study ‘how and when challenging behavior is categorized as ADHD’ industrializing urban Pune.
I have argued that the concept of culture in India’s ‘multi everythingness’ and industrializing Pune might not be a sufficient analytical concept for this study. I chose to adopt Singh’s ecological niche model as a less ambiguous concept, that allows more room for differentiation (Singh, 2011; Singh et al., 2013:385). Singh uses the concept of the ‘ecological niche’ to indicate a dominant, shared, preoccupation towards what is valued in a child(Singh, 2013).
An ecological niche model allows the highlighting of macro and micro factors that influence the process of defining behavior as problematic, the process of presenting these complaints in a
biomedical setting and the process of categorizing complaints as ADHD. Mol (2002:26) argued that there are ‘endless lists of heterogeneous elements that can be either highlighted or left in the background’ in a study. What is highlighted ‘depends on the purpose and character of the
description’ (Mol, 2002:26). Of the extensive number of layers that make up India, I have chosen to highlight ‘government policy’, ‘mental health infrastructure’, ‘ family structure’, ‘notions of
childhood’, ‘gender’, ‘class’ and ‘school’ in order to analyze the empirical findings. As Singh’s current model is implicitly built on the concept of the nation-‐state, I propose a slight modification to the model by adding by adding ‘modernization’ and ‘globalization’ as macro layers for analysis.
Figure 1 ecological niche model Methodology
Based on a review of literature, I have suggested that current analyses of globalizing ADHD have not sufficiently integrated experiences of clinicians’ practicing in low-‐income settings. Therefore, this research sets out to empirically explore categorization of behavioral-‐difficulties-‐as -‐ADHD from a clinician’s perspective, in relation to well-‐publicized concerns over globalization of medicalization (Filipe, 2011; Singh et al., 2013).
reporting behavior and diagnosing ADHD
school
family structure, class, gender, notions of childhood government policy, health infrastructure Globalization of mental health, modernization
An exploratory, qualitative research strategy was considered the best fit to approach the research questions and aims. By collecting and analyzing detailed accounts of clinicians perceptions, this study seeks to unbracket (Mol, 2002) and ‘de-‐mystify ‘(Barbour, 2013:17) categorization of behavioral difficulties as ADHD in India.
Research location
Literature on mental healthcare in India indicated that psychiatrists, psychologists and
pediatricians mostly practice in urban, economically prosperous areas (Carson & Chowdhury, 2000:394). A preliminary exploration on the Internet confirmed that there were both hospitals and private practices specializing in children’s mental health in Pune. Due to the number of practicing clinicians, and thus reasonable hope of getting access to these professionals, Pune was chosen as a research site.
Pune is in the state of Maharashtra, and is India’s eighth largest metropolis -‐ with a population of 2.4 million people. It is one of the most developed areas in India, with the 6th highest income per capita in the country. It is known for its high concentration of software companies, auto
manufacturers, government organizations and public sector organisations. Moreover it is known for its educational facilities and is sometimes referred to as ‘Oxford of the East’.
Respondents
The choice to study clinician’s perceptions of the issue was twofold. Firstly, I have argued the need to study categorization of behavioral-‐difficulties-‐as-‐ADHD from the point of view of ‘the designated medicalizers’. In this respect, I followed Annemarie Mol(2002:27), who argued that clinicians ‘might be listened to as if they were their own ethnographers’. This research approaches clinicians-‐ as-‐ethnographers in collecting their –subjective -‐ views on the research questions.
Sampling and sample
Purposive sampling was used to create a diverse sample (Barbour, 2013:23). Following Rafalovich (2005:309), I defined clinicians as ‘persons with the accredited authority to make ADHD diagnoses, outline methods of treatment and administer such treatments’. After an initial exploration, I found that ADHD-‐clinicians in Pune were predominantly psychiatrists, pediatricians and
(school)psychologists.
The sample consisted of twenty-‐one clinicians: seven psychiatrists, six pediatricians, six
psychologists and two school counselors. Sixteen were female, and five male. The clinicians were aged between 25 and 76 years old. Seventeen clinicians worked at private hospitals or medical colleges, two exclusively in private practices and two at a school. The majority of the clinicians worked in a private practice alongside their jobs in hospitals or schools. The selected clinicians worked with patients from high, middle and low income families.
For triangulation, I interviewed six scholars in Anthropology, Sociology, Psychology and Education, Ayurvedic Medicine and one director of an NGO for Mental Health.
Further details on clinicians, scholars and stakeholders in NGOs for mental health are presented in appendix 1. psychiatrist, 7 psychologist, 6 pediatrician, 6 school counselor: 2 Female, 16 Male, 5
Figure 1.1 Sample respondents
Three clinicians and scholars were initially recruited through the recommendations of a faculty member of the University of Amsterdam, and by using my own professional background. These contacts were established upon arrival in Pune, and resulted in personal recommendations and contact details for other colleagues. This was followed by a four-‐week period of being introduced to these ‘gatekeeper’ clinicians. After these initial introductory meetings, all of the contacted clinicians agreed to participate in the study. These meetings resulted in more recommendations and contact details: the sample can be said to have grown through the ‘snowballing’ approach.
A second strategy for obtaining access consisted of visiting conferences on Public health, Inclusive Education and visiting faculty members of the Sociology, Psychology, Anthropology and Education departments. The purpose of this network building was threefold. The first reason was to explore whether behavior of children came up as a concern during the conferences and, if so, which behavior was mentioned as a cause for concern. The second reason was to explore the language used to indicate behavioral problems, their root causes and preferred ways of handling them by non-‐clinicians. This was utilised as a way to triangulate data, and to explore in which existing viewpoints clinicians perspectives were embedded. Lastly, I discovered that personal
recommendations were crucial to get access to clinicians. The scholars I met were well connected in Pune, and were often willing to recommend me to a clinician in their network.
Data collection
Data was collected through semi-‐structured interviews and informal conversations. All of the formal interviews were conducted face-‐to-‐face, and structured around a semi-‐structured interview schedule2 that allowed the taking of a open-‐ended tone if required. The interviews were recorded with an audio-‐recorder and transcribed at a later stage. Each interview lasted for between 40 and 60 minutes, depending on the clinician’s schedule. My visits were often much more elaborate than the one hour time slot for an interview -‐ as these visits included waiting time, introduction to colleagues and being shown around the facilities.
Every interview was explained as consisting of two parts; the first asking ‘factual questions’, and the second asking about perspectives. This structure was chosen due to my noticing that some respondents were hesitant to participate owing to to uncertainty over what I might ask. This structure also proved to be a protective measure in preventing the interview being an open-‐ended
conversation. To acquire a perspective on the categorization of behavioral-‐challenges-‐as-‐ADHD, the first set of questions asked about reported complaints in general. In cases where behavioral
complaints were mentioned, I then asked for elaboration on this. As a rule of thumb, I would only ask questions about ADHD after this term had been used by the clinician.
Data analyses
The process of data analysis was characterized by connecting ‘the understood’ to ‘the need to understand’ (Strathern, 1999:6 in: Hastrup, 2013:149). The data were analyzed building on Glaser and Strauss’ grounded theory approach (Green & Thorogood, 2004182-‐184).
Nvivo 10 was used as a tool for data entry, coding, text searching and ‘counting’ the frequency of presentation of certain perceptions. An example of comparing multiple perspectives across the interviews is presented in appendix 3. The following steps characterized the data analysis process:
• Code, look for patterns across the data, conceptualize what these patterns might indicate and pose questions on what is difficult to understand. Then develop questions for the next round of data collection, and discuss the analyses with academic supervisor
• Look for ‘unusual cases or viewpoints’ in relation to commonly expressed viewpoints and conceptualize what these might point at, discuss the analyses with academic supervisor. • See how patterns, unusual cases and the conceptualization thereof fit or contrast with
existing theory, discuss the analyses with academic supervisor.
• Look for data that cannot be explained by theory, re-‐read interview data, search for new theoretical frameworks to understand the ‘gaps’, discuss the analyses with academic supervisor.
Ethical consideration
The ‘do no harm’ intent was central to the process of research. The following measures were taken to ensure this. Firstly, I disclosed my role as a researcher and the purpose of the study in contacting all the respondents. I asked the clinicians to read the consent form prior to interview, in order to make sure that respondents were operating with full understanding of the implications of the study. After showing willingness to participate, all clinicians were asked to sign for consent. This form, as included in appendix 3, emphasized that participation was anonymous and data would be held in confidence. This information was repeated verbally before starting the interview.
anonymity, all clinicians were granted a code (N1, N2 etc.), and remained anonymous in transcripts. I further chose not to list these codes in the appendix of respondents. As the community of
clinicians in Pune is relatively small, demographic data and direct quotes in this thesis could otherwise easily be linked back to a specific person
Reflection and limitation
A weakness of this study is that it is solely built on reported complaints from the perception of clinicians, and recollections of approaches to categorization. This study did not ask clinicians directly about their definitions of ADHD, but instead started out by asking about behavioral
difficulties as a way to gain insight into behaviors that are associated with ADHD. This indirect way of collecting perspectives on the categorization of ADHD has limitations -‐ suggested links between ‘complaints’ and ‘diagnosing ADHD’ are based on my own interpretation of the clinicians’ answers. Observation during consultation, and interviewing parents would have minimized this subjectivity. My decision to solely talk to clinicians was shaped by restraints of not speaking Maharati or Hindi, and also not having ethical consent to do participant observation.
I have tried to deal with this limitation by talking to non-‐ clinicians about their conceptualization of ADHD, by discussing my analyses with clinicians (after the interview had taken place) in the last weeks of fieldwork and by searching literature that looks into helpseeking routes and complaints associated with ADHD.
As I did not have access to information in the vernacular languages of Maharathi or Hindi, my
interpretation is solely based on studies and articles in the English language. Eriksen described that ‘content on the internet is believed to be English, but in fact, half of it isnt’ (Eriksen, 2007:74). Thus, there may have been studies on ADHD in Hindi or Maharathi that I did not have access to.
Lastly, choosing to do research among professional colleagues came with a range of both benefits and limitations. My professional background as a drama therapist in children’s mental health no doubt left a ‘footprint’ in this study (Barbour, 2013:44). Respondent’s remarks may also have been shaped by the perception that they were talking to a colleague. This reduced the chance of talking about categorization of ADHD in ‘laymen’s terms’, which increased the chance of assuming a shared meaning for shared concept. Wherever possible, I tried to be a ‘professional stranger’ and to reflect on my role after each interview. One measure that I undertook to minimize this influence was to postpone conversations on mental health care in the Netherlands until the end of the interview.
The choice of study was partly informed by my own experiences, as described in the introduction. My professional background might have influenced and emphasized certain statements on
categorization, whilst simaultaneously de-‐emphasizing others (Barbour, 2013:44). I recognized Strathern’s (2005: 35) argument that ‘one cannot simply take turns in oneself’. This led me to establish that it is indeed impossible to be an aspirant anthropologist/sociologist without being a therapist, as these roles are partly connected. This realization led me to present different ways in which data could be interpreted, before describing my own interpretations of events in the thesis. This encouraged me to be reflexive while writing, and to provide the reader insight into my analysis process throughout the thesis.
My background as a drama therapist also came with benefits, and I am under the impression that my professional background influenced many respondents’ willingness to talk to me.
2. Presenting issues
This chapter presents a detailed account of referral routes and presenting issues, as reported by ‘the clinician-‐as-‐ethnographer’. Drawing on a creolization perspective, I will argue that there are a range of factors that can delay or accelerate consulting a clinician for behavioral issues (Erikson; 2007). Presenting behavioral concerns interacts with layers such as mental health infrastructure, policy, education, gender and class in specific ways. Drawing on an ecological niche perspective, I will argue that consulting a clinician for behavioral issues should be understood in relation to what is valued most in a child, and a child’s future.
Helpseeking routes
The city of Pune is decorated with advertisements of private health care professionals; varying from cosmetic surgeons to gynecologists. A number of hospitals in the city have a Child
Development Center (CDC) and employ pediatricians, psychologists and psychiatrists. These facilities cater to parents of upper, middle and lower socioeconomic class. Prices for consultation range from 40 to 800 rupees. Governmental hospitals and NGO’s in slum areas offer mental health services at low-‐ or no-‐cost. Six hospitals in the city have a teaching program to train psychiatrists, and a number of universities and colleges offer a MA program in clinical psychology. All of the interviewed clinicians (N=21) indicated that they are frequently consulted for behavioral issues of children, and used the term ADHD to refer to a pattern of behavioral issues. This term was also used in national newspaper articles3 and on pharma-‐sponsered4 educational posters in clinician’s waiting rooms.
When asked about referral routes in Pune, clinicians indicated that children primarily come to them following a referral from a school counselor, or from a pediatrician or general practitioner. A small number of patients also come from word-‐of-‐ mouth or self-‐referral. The detailed accounts5 on referees are presented in table 2.1.
3 See appendix 4
4 For an example a newspaper article on the rise of ADHD, see appendix 5
5 In the table, a general practitioner and pediatricans are referred to as ‘MD’ as they are both medical
Type of referral Amount (N=20)
School counselor 19
School counselor and pediatrician 13 School counselor, MD and self referrals 10
MD’s only 1
Table 2.1. Referees
The central role of schools and pediatricians in referring is supported by findings from previous studies on ADHD in Goa and Kolkata (Mukhopadhyay, Misra, Mitra, & Niyogi, 2003; Wilcox et al., 2007). Clinicians suggested that referrals through schools are due to an increase in awareness of ADHD amongst teachers, and an increase in the number of school counselors. Under the Sarva Shiksha Abhiyan (SSA)6 act in 2000, clinicians were invited to educate schools in screening for developmental issues, including ADHD and autism (N15, N27). School counselors were made a mandatory requirement in 2009, under the Right to Education Act (RTE) -‐ partly in reaction to the high suicide rate amongst students, due to fear of educational pressure (Patel, Flisher, Hetrick, & McGorry, 2007:1303-‐1304) (N13). Though mandatory by law, it was indicated that school counselors mostly practice at private English or Maharati medium schools.
One route ,which has not been mentioned in the literature so far, is that of parents who come to clinicians as a self -‐referral and state ‘ I think my child has ADHD’. Twelve clinicians remembered seeing parents who reported this after consulting ‘ Dr Google’. These parents were referred to as ‘ the smaller portion of the parents’ . For examples on recollections of these moments, see table 2.2. ‘ Dr. Google’.
Table 2.2 Examples Dr. Google-‐referrals Examples
“Yes, they do that. [After] a newspaper article or so. Mostly they are individuals who are working in software companies. Parents, yes, they do do that... we have a lot of weekly articles in newspapers in local languages, and they will keep a paper cutting and come with that.”. (N4)
“Parents sometimes collect symptoms on the Internet. They will match the symptoms with the kid. They will come in and say “all these symptoms match with my kids”, and we will say: 'no, no, this is not autism” (N5).
Parents are getting a lot smarter these days, they read up a lot more on these things. They do read up and they do come up with diagnostic terms, asking us: is he this or is he this. Especially the educated parents, they do that They have paper cuttings and show us, saying: my child fits this. From the
newspapers and magazines that write about this. A lot of papers now write about ADHD, about autism. They read this and think: my child has all this (N6).
The presenting quest
The availability of mental health services and ‘referral parties’ could be interpreted in different ways. Firstly, it might indicate the presence of a ‘market’ for problematizing childhood behavior, and treating it as a medical problem(Timimi, 2010). In this line of reasoning, the market is not exclusively available for ‘the elitist population’ -‐ as it was suggested that the facilities to assess behavioral difficulties of children are accessible ‘for every pocket’. This might indicate that an awareness of behavioral-‐problems-‐as-‐ADHD is spreading across the different classes that make up Pune. Secondly, the phenomenon of self-‐referral on the basis of Internet-‐gleaned information might indicate a tendency to express distress in ‘Western ways’ (Watters, 2010). These
interpretations would be in line with Watters thesis that globalizing mental health ‘is teaching the world to think like us’.
Building on empirical data of presenting issues, I argue for a different interpretation of events. Observations from this study suggest that though the context of Pune is not necessarily defined by a shortage of facilities, there are delaying factors for help-‐seeking. These factors might keep a child from being consulted by a clinician altogether, but I will refer to these factors as ‘delaying factors’. On the basis of empirical data, I will argue that ‘societies are unequally affected by different
tendencies at a different speed’ (Eriksen, 2007:9). The findings from this study indicate that notions of childhood, the role of extended families, stigma, gender and class are all factors that interact with the decision to seek, or not seek, biomedical help.
