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About this book

"David Jones has written a compelling book about the complex issues entailed in being family members of sufferers from mental illness. The book provides us with a critical appraisal of the sociological and psychological conceptual layers and the policy context necessary for understanding these issues, all too often missing in other books written about this subject...

Through in-depth interviews of forty carers, coached in a way which enables the carers to talk in their own voice, we get the rare opportunity of understanding the world of these carers...In letting the carers speak Jones is enabling all of us to listen to them with the respect they deserve...

All of us - but especially mental health professionals, policy makers and researchers - need to learn from the methodology utilised in this study, and the content of the rich experiential seam Jones exposes, as to how to listen better to carers, and on which themes to focus in our working partnership with users and carers."
- Professor Shulamit Ramon, Anglia Polytechnic University, Cambridge

This book fills a gap in our knowledge about the experiences of families of people suffering from severe mental illness. Original research material is used to support claims that families are struggling with complex feelings such as loss, anger and shame. It is also argued that the ideas families themselves hold about mental illness form an important part of the cultural world in which mental illnesses are understood.

This stimulating book challenges many conventional assumptions about family relationships by arguing that they have to be understood in terms of 'myths' that bring a certain amount of order to complex areas of emotional life. The author argues that families if properly understood, can provide significant support for people with severe mental illness.

Table of Contents

Introduction

Abstract
Carol Peters was interviewed as part of the study that informs many of the later chapters of this book. She is in her mid thirties and is married with two small children. She is also the sister of Donald, a man who has been treated for many years by the psychiatric services, having been diagnosed as suffering from schizophrenia.
David W. Jones, Jo Campling

1. The Family, the Asylum and Community Care

Abstract
This chapter will spell out why consideration of the world of the ‘family’ is so important to our understanding of serious mental illness. It will be argued that families, for various reasons, have been a significant factor in the lives of those who have come to be seen as suffering from serious mental illness. It is not only the actual behaviour of families but, perhaps even more importantly, it is also the ideas and assumptions about ‘the family’ that have been such critical features of the environment which has shaped not just the policies and practices that are aimed at mental illness, but our very definitions of sanity and madness.
David W. Jones, Jo Campling

2. Observing the Family

Abstract
Reviews of the literature concerned with families and serious mental illness (Biegel, Sales and Shulz 1990; Hatfield and Lefley 1987; Perring, Twigg and Atkin 1990) reveal a great volume of research, but very little of it sheds light on the experience, or the perspective, of families (Cook, Pickett and Cohler 1997). This stands in contrast to the growing literature that explores the perspective of the mental health service user (Barham and Hayward 1991; Goldie 1986; Reed and Reynolds 1996; Rogers, Pilgrim and Lacey 1993; McCourt-Perring 1993). This deficiency can be understood by reference to the issues discussed in Chapter 1. Families tend to be viewed through highly ideological lenses, as they are assumed to have power to shape the subjective and affective lives of individuals (Donzelot 1980; Foucault 1979; Rose 1989) and they play such vital social roles (Lewis 1992; Wilson 1977). Too much of the research has been guided by those concerns, such that families have usually only been studied as objects of professionals’ and policy makers’ interests. This chapter will briefly outline the main areas of research on families and mental illness and will then describe the approach that guided the research that informs the subsequent chapters of the book.
David W. Jones, Jo Campling

3. The Complicated Grief: ‘Living on the edge of the world’

Abstract
The analysis of the families’ experiences will begin with their grief. The significance of grief has been strongly emphasized by those who have looked at the impact of mental illness on families (Creer 1975; Davis and Shultz 1997; Lanquetot 1988; MacGreggor 1994; Spaniol, Zipple and Lockwood 1992; Wasow 1995). As the first section of this chapter will describe, this grief is triggered by the apparently universal perception that there was a very marked discontinuity in the behaviour and being of their relative. It is important to note that this discontinuity was invariably seen as a negative change and that a broadly medical explanation was assumed. This aspect of the families’ experience is important. For all the various ways of understanding mental distress — whether as organic disease, as psychological disorder, social construct or as intolerance of deviance — this is how this group perceived their relatives’ difficulties.
David W. Jones, Jo Campling

4. The Relationship with Psychiatry and Psychiatric Knowledge

Abstract
Critics working in the tradition of ‘anti-psychiatry’ (most famously Szasz 1970 in the United States, Laing 1959 in Britain) would suggest that the fact that relatives applied an illness model is a result of the dominance of psychiatric thought, which is itself a symptom of the medicalization of Western society (Illich 1977). Simply put, aspects of human experience connected perhaps to unhappiness, deviance or protest are neutralized and marginalized by being understood within medical and psychiatric frameworks. However, other work in medical sociology has suggested that professionals are not acting alone in the process of diagnosis but that ‘others, including the patients themselves, are full participants in the process of labelling, diagnosis, management and treatment of illness’ (Mishler 1981: 166). This latter view is consistent with the argument being made here that the relatives themselves are important actors in defining mental illness.
David W. Jones, Jo Campling

5. The Moral Construction of Diagnosis: ‘Sickness made for anyone’

Abstract
The previous chapters have argued that families are likely to feel as though they had lost the relative they knew and were therefore experiencing a complex grief. It has already been observed that families seemed to make recourse, with little hesitation, to a medical understanding of what had happened. The evidence of the previous chapter suggests that it might be wrong to suppose that the families were simply internalizing the model of illness from professionals. This chapter will explore the ideas that families had about what might have caused their relatives’ difficulties. These relatives generally held eclectic and often complex views. This finding that individuals could make use of different theories is in keeping with Furnham and Bower’s (1992) work on lay beliefs about mental illness and more general work on Western lay beliefs (Fitzpatrick 1989). This chapter is written with the aim of looking beneath that eclecticism in order to chart the forces that are shaping those ideas. Those forces, it will be argued, reveal a more complicated picture than that suggested by the idea that psychiatric diagnoses arise simply from the medicalization of Western culture.
David W. Jones, Jo Campling

6. Coping with Stigma: the Significance of Shame and Identity

Abstract
The study of the association of stigma and mental illness has a long and distinguished history. To some, the very existence of the concept of mental illness can be understood in terms of stigmatization. There has been an impressive literature on the impact of the label of mental illness on people’s behaviour and on the perceptions of others (Goffman 1961; Scheff 1975). Goffman (1963) has noted that the effects of stigma are not confined to those who are directly marked by difference, but reach those associated with that person, referring to this as ‘courtesy stigma’. It is very likely that families involved in mental illness will experience stigma (Wahl and Harman 1989). This is a potentially important issue since stigma may well restrict people’s willingness to seek help and support (Wasow 1995; Yarrow et al. 1954). In fact, whilst this concern is undoubtedly highly relevant, further exploration of the experience of stigma offers useful insight into the nature of identity and family relationships.
David W. Jones, Jo Campling

7. The Myth of the Family: ‘Love and all that business’

Abstract
This chapter introduces the metaphor of myth, that is, a story whose premises are not questioned (Barthes 1973; Lévi-Strauss 1968), as a way of exploring and explaining the significance of family relationships. Previous chapters have suggested that relatives of people suffering from mental illness are coping with a range of intense feelings that are often difficult to acknowledge and manage. They are frequently experiencing grief, which is complicated by feelings of ambivalence and anger. Feelings of shame, as discussed in the last chapter, may also be present. Shame impacts on people’s feelings of identity and taps into highly sensitive aspects of experience. It will be argued that the notion of family can usefully be regarded as a myth, which brings a degree of order to relationships that are often beset with troubling feelings that are sometimes, although by no means solely, connected to ‘sexuality’. The association of the constructs of insanity and deviant sexuality has been drawn attention to by many, particularly in relation to ideals of femininity (Chesler 1972; Skultans 1979). Whilst there is, no doubt, some truth in these observations, it will be argued here that there is a highly complex relationship between families, sexuality and sanity. It is not just that aberrant sexuality is sometimes seen as a mark of insanity, but that behaving within the ideals of family is seen as a crucial component of sanity.
David W. Jones, Jo Campling

8. Managing Myths: Reaching New Understandings

Abstract
Family relationships are in many ways impossible relationships. They are embedded in myths, and the hopes invested in them can be enormous and might be impossible to realize. What is important is the way that the gap between fantasy and reality is negotiated.
David W. Jones, Jo Campling

9. Concluding Discussion: Living with Ambivalence

Abstract
This book began by referring, in the Introduction, to Carol Peters’ questions, which she raised during an interview about how she feels about her brother’s difficulties:
How can we deal with this? How are we meant to react? What do you want us to do? … [C]an you explain to us what is going on in his brain that he is suddenly screaming and shouting at us, and abusing us and everything else, do you know why?
Previous chapters have highlighted the importance of the active ‘struggle’ for meaning that is going on underneath that questioning and the importance of dialogue in reaching resolution. As Chapters 1 and 2 emphasized, professionals have often approached families with their own rather strong, ideologically informed views that have made dialogue unlikely. For example one reading, or one hearing, of Carol’s questions could lead someone to provide answers in terms of practical action. The ‘expressed emotion’ specialist might suggest the families take a non-critical accepting stance. Leaflets and information might be provided by a psychoeducationalist, outlining the status of current knowledge of neurology, biochemistry or twin studies.
David W. Jones, Jo Campling
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