Mental Illness, Dementia and Family in China

Guy Ramsay

• Publisher: Routledge
• Year: 2013
• eBook ISBN:
  9781135094584
• Topic: Medicine
• Subtopic: Health Care Delivery

With rapid economic progress and increasing life expectancy in East Asian societies, more attention is being paid by their governments, the media and the academy to mental illness and dementia. While clinical research on mental illness and dementia in Chinese societies acknowledges the importance of culture in shaping people's experiences of these illnesses, how Chinese culture shapes people's understandings of and responses to mental illness and dementia has yet to be interrogated to any depth.

Mental Illness, Dementia and Family in China breaks new ground in exploring how Chinese culture, namely, the understandings, norms, values and scripts that people acquire through being members of a Chinese community, shapes contemporary stories of mental illness, dementia and family care-giving. This book is innovative in examining and comparing stories which have been drawn from both real life ('life stories'), as well as from film and television productions ('filmic stories'). These two forms effectively complement each other, with life stories generally presenting an 'insider's' account and filmic stories generally presenting an 'outsider's' account. What remains unvoiced in one kind of story may be voiced in the other kind. Drawing on the perspectives and analytic approaches of narrative analysis and cultural studies, Guy Ramsay uncovers culturally-shaped continuities and departures in representations of time, identity and cause of illness as well as in the language employed in contemporary stories of mental illness, dementia and family care-giving in China.

This book will be invaluable to students and scholars working on Chinese cultural studies and Asian social policy, as well as those interested in psychiatry, mental health and disability studies more broadly.

1 Introduction

With improvements in and perfection of the medical care for common physical and infectious ailments, more attention is being paid by governments, the media and the academy to illnesses that afflict the mind. The pervasiveness of serious mental illnesses such as schizophrenia and clinical depression in communities across the globe is becoming widely recognised. The increasing impact of dementia, likewise, is being acknowledged as average life spans lengthen across the globe. Chinese societies in mainland China and neighbouring Hong Kong can be considered cases in point, with economic progress leading to significantly increased life expectancy and, so, numbers of dementia cases (Au et al. 2010; Ikels 1998; Qiu 2007), as well as a greater focus on quality of life concerns, including mental health (Ramsay 2008).

This book draws attention to the illnesses in question by examining stories recounting Chinese people’s experiences of serious mental illness, mostly schizophrenia and related psychoses, but also clinical depression; and family caregiving in dementia. Examination of such accounts, it is believed, can provide great insight into the experience of mental illness and family caregiving in dementia in Chinese societies; more specifically, how this experience is made sense of and represented to others. In examining the stories of mental illness and stories of family caregiving in dementia which originate from a specific cultural community, namely, the Chinese, explication of the salient cultural understandings and forces in play constitutes a key concern of the book.

Research on mental illness and family caregiving in dementia in mainland China and Hong Kong

A body of clinical studies undertaken in mainland China and Hong Kong has drawn attention to the need to take culture into account when developing effective support programs and clinical interventions in mental illness. Pearson has pioneered research into service delivery and rehabilitation, government policy and legislation, and family education and therapy in schizophrenia in mainland China and Hong Kong (Pearson 1995a, 1995b, 1995c, 1996; Pearson and Lam 2002; Pearson and Ning 1997; Pearson and Phillips 1994; Pearson and Tsang 2004; Phillips et al. 2002; Wong et al. 2003, 2004; Yang and Pearson 2002). Kleinman has pioneered research into the clinical presentation of depression, in particular somatoform disorder, in mainland China, as well as examining stigma in mental illness in mainland China and Hong Kong (Kleinman 1982; Kleinman and Kleinman 1985; Kleinman et al. 2011; Lee et al. 2006; Lee and Kleinman 2007; Lee et al. 2007; Yang and Kleinman 2008). Yip (2007) has focused attention on mainland China in comprehensively examining the epidemiology of mental illnesses, service delivery and rehabilitation, service costs, government policy and legislation, family caregiving and the training of mental health professionals. Meanwhile, Au, Gallagher-Thompson and Ikels have contributed to a comparatively smaller body of clinical studies that draw attention to the role of culture in dementia care and family therapy in mainland China and Hong Kong (Au et al. 2009, 2010; Ikels 1998, 2002). Holroyd and Mackenzie have also published more generally in the area of elder care in mainland China and Hong Kong (Holroyd 2001, 2003; Holroyd and Mackenzie 1995, 1997; Mackenzie and Holroyd 1996).

Related humanities research into mental illness and family caregiving in dementia in mainland China and Hong Kong is more limited in amount and generally confined to literary studies of madness. Brassington (1995), Lan (2011), Linder (2011), Rojas (2011) and Yang (2011) have explored the portrayal of mental illness in mainland Chinese literature published in the republican era (1912–1949) and the post-Mao reform period of the late 1970s to date. A relentlessly negative portrayal is found to characterise these literary works. Dikötter (1998) includes some discussion of mental illness in his cultural history of eugenics in mainland China. In this discussion, the strong association between mental illness and heredity in Chinese culture is found to inform government policy and legislation from the republican and communist (1949 onward) periods. Taking a more contemporary focus, Ramsay (2008) has examined the discursive form of psychoeducational brochures and pamphlets put out by public health authorities in mainland China. Mainland Chinese psychoeducational brochures and pamphlets are found to be less biomedicalised and, yet, less empowering for the health consumer when compared to Australian counterparts.

Despite this breadth of clinical and humanities studies, Lee et al. (2007, 7) observe that ‘Little is known as to how psychopathology is experienced and articulated differently across cultures’, in particular, Chinese culture. This book undertakes an in-depth examination of how experiences of mental illness and family caregiving in dementia are articulated within contemporary stories of mental illness and contemporary stories of family caregiving in dementia told by Chinese people living in mainland China and Hong Kong. In so doing, insight is gained into how Chinese culture shapes contemporary stories about two illnesses that afflict the mind and which, at present, are of immense social and clinical importance to mainland China and Hong Kong. The book examines both ‘life’ (autobiographical and biographical) and ‘filmic’ (film and television serial drama) stories about the illnesses in question. As such, comparative insights are gained from analysis of contemporary stories told from both ‘inside’ and ‘outside’ of the illness experience (Hydén 1997).

The book draws on the perspectives and analytic approaches provided by narrative analysis and cultural studies in order to identify the ways in which Chinese culture shapes the life stories and filmic stories under study. A definition of culture as posed by Ting-Toomey (1999, 9) is embraced:

First, the term culture refers to a diverse pool of knowledge, shared realities, and clustered norms that constitute the learned systems of meanings in a particular society. Second, these learned systems of meaning are shared and transmitted through everyday interactions among members of the cultural group and from one generation to the next. Third, culture facilitates members’ capacity to survive and adapt to their external environment.

Life stories and filmic stories of mental illness and family caregiving in dementia, therefore, will be shaped by the understandings, norms, values and scripts that the storytellers have acquired through being members of a Chinese community. These understandings, norms, values and scripts, in turn, will be conveyed through the stories they tell. Moreover, in telling their stories in ways that are shaped by Chinese culture, the experience of mental illness and family caregiving in dementia, to some degree, is reconciled and made sense of. This can bring a degree of comfort and solace to the storyteller and her or his audience, albeit by necessarily yielding, at times, to the weight of the salient cultural understandings, norms, values and scripts in play.

Culture, stories and illness

The important role of culture in any experience of illness is acknowledged by a body of research to date (Cohen 1998; Hinton and Levkoff 1999; Kleinman et al. 2006; Lupton 2003; Squire 2007; Traphagan 2000). Culture informs and dictates people’s responses to illness, including views on causation, illness progress and prospective outcomes. It serves as a resource for assigning meaning to an illness, regardless of whether it has been personally experienced.

A principal means by which people fashion and elaborate the meanings assigned to an illness experience is through storytelling (Brody 2003; Lupton 2003; Thomas 2010). This is because, as Pinnegar and Daynes (2007, 4) maintain, stories comprise ‘the fundamental unit that accounts for human experience.’ Stories, nevertheless, are not incontestable, stable records of human experience (Babrow et al. 2005; Bury 2001; Couser 1997; Elliott 2005; Gabriel 2004; Garden 2010; Lieblich et al. 1998; Riessman 1993; Shapiro 2011; Thomas 2010). They comprise:

both less and more than the actual experience: less, in that remembering and writing are selective processes – certain facts are dropped because they are forgotten or because they do not fit the author’s narrative design; and more, in that the act of committing experience to narrative form inevitably confers upon it a particular sequence of events and endows it with a significance that was probably only latent in the original experience.

(Hawkins 1999, 14–15)

Through these processes of selection and conferral, stories provide insight into an experience of illness and its cultural foundations (Bhugra 2006; Charon 2006; Frank 1995, 2010; Garden 2010; Garro and Mattingly 2000a, 2000b; Kleinman 1988; Lupton 2003; Woods 2011). Hydén (1997, 64) states, ‘Narrative¹ is one of several cultural forms available to us for conveying, expressing or formulating our experience of illness and suffering. It is also a medium for conveying shared cultural experiences.’

The culturally shaped meanings attached to an illness experience are revealed in how a story rearranges past, present and prospective life events into a temporally and causally coherent sequence (Hurwitz 2004; Hydén and Brockmeier 2008; Riessman 2004) as well as in how the story asserts, refashions and positions emergent identities (Hunt 2000; Hydén 1997; Riessman 2004). The temporal dimension is elementary to any consideration of storytelling (Labov and Waletzky 1997; Ricoeur 1984). Through stories, people locate life events in particular points of time and, in so doing, give form to and provide connection between the seemingly random sequence of events that comprise a person’s life (Bakhtin 1981; Bamberg, De Fina and Schiffrin 2007; Brockmeier and Carbaugh 2001; Polanyi 1989; Riessman 1993). This includes the designation of cause in highly disruptive experiences like illness (Bury 1982, 2001; Hydén and Brockmeier 2008). Reordering life events into a temporally and causally coherent sequence not only involves drawing on the past and relating the past to the present, but also involves consideration and contemplation of the future (Clandinan and Connelly 2000; Daiute and Lightfoot 2004; Riessman 2004). Culture can shape when and how temporal and causal connections are made between these life events in a story and guide assessments as to which events are worthy of or suitable for mention (Babrow, Kline and Rawlins 2005; Frank 1995; Garro 2000, 2001; Gergen 2004).

In making sense of a life experience, stories also provide an opportunity for people to engage and cultivate senses of self (Woods 2011). The subjective nature of life experience often leads to considerations of how people locate themselves or others within a series of life events and the extent to which these positionings mediate existing identities or construct new ones (Charon 2006; Cheshire and Ziebland 2005; Harter et al. 2005; Hydén and Örulv 2009; Kirmayer 2000). The recursive nature of identity formulation is central to this: stories can both ‘present an inner reality to the outside world’ and ‘shape’ new conceptions of self (Lieblich et al. 1998, 7). In proclaiming identities, individuals also connect themselves to others in society (Brody 2003; Brockmeier and Carbaugh 2001; Charon 2006; Woods 2011). This may include those who suffer from the same illness. Both real and imagined community attachments, therefore, are often distinguished and affirmed in stories (Hunt 2000; Thornborrow and Coates 2005). Once again, the forms that the asserted or refashioned identities take and the community attachments that they signify will be shaped to a considerable degree by culture (Brody 2003; Hunt 2000).

Cultural meanings are also elaborated through the forms of language used in a story. The link between culture and language is well documented (Ramsay 1997). In research on illness stories, much attention has been given, in particular, to the figurative language characteristically employed in a cultural setting (Garden 2010; Sontag 1989; Wu et al. 2004). The communicative power of such language is seen to be derived from its cultural origins, meaningfulness and resonance (Berger 1997; Kleinman 1988). Metaphors, in particular, are of certain value where the aetiological basis of an illness is not well understood, such as in mental illness and dementia, in that they foster a sense of cultural familiarity and offer solace in the face of the unknown. A metaphor commonly employed to represent a person’s response to illness in the West is the battle metaphor (Lupton 2003; Sontag 1989). Originally appropriated in the late nineteenth century to characterise the medical response to bacterial infections (Sontag 1989), in more recent times the battle metaphor has come to frame responses to diseases such as cancer, where the aetiological ‘enemy’ resides within self rather than extraneously. The effective expression of the battle metaphor, Hawkins (1999, 69) states, requires ‘an adversary, an enemy “other”[;] …the patient must feel that the physicians are allies in the battle against disease; and there must be some therapeutic agent or procedure that can act as weaponry.’ Frank (2009, 168) views the need for an ‘antagonist’ in the response to illness as potentially problematic, as it can lead to tensions in self where the battle against the enemy is ultimately fought out. Couser (1997, 45) similarly warns that undue faith in the professional alliance and pharmacotherapeutic armoury ‘may encourage the use of “heroic” measures of questionable effectiveness.’ The inherent danger is that the adoption of culturally familiar ‘metaphors may subvert the project of narrative and come to dominate the sense of self’ (Kirmayer 2000, 153). These claims will be tested in the life stories and filmic stories under study.

Analysis of Chinese life stories and filmic stories of mental illness and family caregiving in dementia

Contemporary published life stories and filmic stories of serious mental illness and family caregiving in dementia which are from mainland China and Hong Kong comprise the data sources employed in this book. In line with a number of researchers, the book considers the cultural insights gained from filmic accounts to be as informative as those gained from life accounts (Bartlett et al. 1993; Brody 2003; Good and Good 2000; Hydén 1997; Lupton 2003; Miller et al. 2005; Roy 2009; Wiltshire 2000). There is deemed to be a potential complementarity between the two forms of stories with content silenced in one form possibly voiced in the other. Filmic stories, for example, tend to more singularly voice the prevailing meta-narrative that circulates in a cultural community, particularly where the meta-narrative is being drawn on for the purpose of broader social and political critique (Bordwell 1985; Branigan 1992; Chouinard 2009; Knight 2006; Lothe 2000; O’Shaughnessy and Stadler 2008; Wedding et al. 2005). In light of this, Hydén (1997, 64) has specifically called for studies which illuminate ‘the relationship between’ the culturally dominant ‘grand narratives about illness … and illness narratives constructed by the afflicted themselves.’ Such a comparison is undertaken in this book.

The analysis of the life stories and filmic stories under study involves a process of careful reading and scrutiny ‘in which patterns of association and contrast are uncovered’ (Stewart and Malley 2004, 225). Judgments made in this process are necessarily interpretative (Elliott 2005; Pinnegar and Daynes 2007; Thomas 2010). The process is somewhat complicated by using stories as a data source as this leads the analyst to interpret interpretations, the narrative account itself comprising an interpretation by the storyteller of a life experience (Babrow et al.2005; Daiute and Lightfoot 2004; Harter et al. 2005; Hawkins 1999; Riessman 1993). The process also involves interpreting what is said and what is not said in the stories (Beck et al. 2005; Kirmayer 2000; Riessman 1993; Squire 2005). The ‘narrative silences, the gaps in stories, the unmentioned or unmentionable, as well as the absence of certain stories altogether’ are of equal analytic interest as that which is clearly voiced (Harter et al. 2005, 13) (original emphasis).

As in any hermeneutic endeavour, alternative interpretations (and so alternative ‘realities’) will always be possible in relation to the stories analysed (Clandinin and Connelly 2000; Clandinin and Rosiek 2007; Freeman 2001; Lieblich et al. 1998; Lupton 2003; Riessman 2000). The aim of the analysis is not ‘explanatory completeness or exhaustiveness’ in relation to the form and functions of the stories in question (Freeman 2001, 297), but provision of a coherent and plausible account of how culture, as defined above, shapes these stories (Clandinin and Connelly 2000; Clandinin and Rosiek 2007; Harter et al. 2005; Riessman 1993). Coherence and plausibility are maintained throughout this book by the adoption of step-by-step methodological frameworks for analysis of the life stories and filmic stories; by making reasoned and ...

Table of contents

• Front Cover
• Mental Illness, Dementia and Family in China
• Routledge/Asian Studies Association of Australia (ASAA) East Asia Series
• Dedication
• Title Page
• Copyright
• Contents
• Acknowledgements
• 1 Introduction
• 2 Life stories of people with a mental illness
• 3 Life stories of family caregiving in mental illness
• 4 Filmic stories of people with a mental illness
• 5 Life stories of family caregiving in dementia
• 6 Filmic stories of family caregiving in dementia
• 7 Conclusion
• Notes
• References
• Index