Saturday, September 06, 2014

The Psychologist: Special Issue on Hallucinogens - A Brave New World for Psychology?

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The new issue of The Psychologist, from The British Psychological Society, is a special issue on the future of hallucinogens in psychology - and it's all open access (i.e., free).

Here is the introductory essay from David Nutt. There are a couple of other articles from this issue that I will be posting.

Special issue: A brave new world for psychology?

David Nutt introduces a special issue considering the use of hallucinogens in research and therapy


Volume 27(9), September, 2014: Pages: 658-661

The psychedelic state is unquestionably one of the most interesting psychological experiences humans can have. Hallucinogenic drugs that have been used by humans for as long as we can determine to provide novel insights into the mind and enhance social bonding. For moral reasons, hidden behind spurious concerns about health harms, modern society has attempted to deny the value and importance of the use of these drugs and the study of this altered state of consciousness. This article explains why this scientific censorship has occurred and outlines the lost opportunities for neuroscience research and medicinal treatments that have resulted.

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(Please note that some pictures may have been removed for copyright reasons)
Psychedelics, used responsibly and with proper caution, would be for psychiatry what the microscope is for biology or the telescope is for astronomy. These tools make it possible to study important processes that under normal circumstances are not available for direct observation.
Stanislav Grof (1975)

Last year I had the pleasure of visiting Chile and spending a few days in the Atacama Desert, in the high Andes. To deal with the altitude-induced headaches I used the local remedy of chewing coca-leaves and drinking mate (coca-leaf tea). Following the Spanish conquest these local remedies were banned by the Catholic Church as being heathen, though the ban was rapidly overturned by the Spanish overlords as it resulted in work productivity of the ‘natives’ declining! In 1961 the coca-leaf was again banned, despite there being no evidence of its being addictive or harmful, as part of the absurd 1961 UN Single Convention on Narcotic Drugs. For most Andean coca-leaf chewers the ban has had little impact, although in some places the coca-farmers have had their crops and livelihoods destroyed as part of the US-driven ‘war on drugs’.

However, the original Andean inhabitants used drugs other than cocaine, as I discovered in a visit to the museum of the Atacama Desert. Of the many artefacts from the pre-Columbian period well over half were related to the use of hallucinogenic extracts of the peyote cactus. These comprised pestles and mortars for grinding the flowers, pots for storing the flower buds, belt pouches for carrying the powder and ceramic straws for snorting it. Many were beautifully decorated, showing that they had symbolic as well as practical uses. Moreover, much of the art of the period seemed influenced by the visions produced under peyote.

There is extensive evidence that many, possibly all, earlier cultures used hallucinogens such as mescaline, ayahuasca and ibogaine – see Ben Sessa’s book The Psychedelic Renaissance. They appeared to be used to gain personal insights and promote social bonding, and may also have had mood-promoting and resilience-inducing actions. The latter I suspect is why they were so widely used in the Andes, which is a particularly inhospitable and difficult environment in which to survive. Use of hallucinogens has survived to the present day in indigenous cultures and some churches, such as the Santo Daime church in Brazil (and now beyond) that uses ayahuasca in its church ceremonies, even in children. The use of ibogaine for  self-enlightenment in West Africa has now developed worldwide and has become popular as an aid to overcoming addiction. Psilocybin as ‘magic mushrooms’ have been used in many cultures across much of the world, and are still taken by many young people in the UK despite attempts to ban them by making their possession illegal. The reasons for – and benefits of – this widespread social use of hallucinogens throughout human society is an important question for social psychology.

In contrast, ‘Western’ society has promoted other drugs, particularly alcohol, for social engagement, worship and pleasure. When hallucinogens, particularly the new longer-acting synthetic one LSD, began to enter popular culture in the early 1960s (the ‘flower-power’ movement) it was seen as a major threat to the current political order and so LSD plus all other hallucinogenic chemicals such as psilocybin and dimethyltryptamine (DMT) were rapidly banned in the USA and then under the UN drug conventions.

To me – and I speak here as a former Chair of the UK government’s Advisory Council on the Misuse of Drugs – the justification for the banning was a concoction of lies about their health impacts coupled with a denial of their potential as research tools and treatments. Indeed their banning demonstrates the chilling power of drug regulators and enforcers to control the drug agenda, for the ban was enacted in the face of opposition from leading and open-minded politicians such as Bobby Kennedy (whose wife Ethel had undergone or was undergoing LSD therapy at the time at Hollywood Hospital). The discussion between him and them shows the challenge of getting to the truth.  
Why if [clinical LSD projects] were worthwhile six months ago, why aren’t they worthwhile now? We keep going around and around…If I could get a flat answer about that I would be happy. Is there a misunderstanding about my question? I think perhaps we have lost sight of the fact that LSD can be very, very helpful in our society if used properly.(Kennedy, quoted in Lee & Shlain, 1985, p.93) 
As is the case with almost all international drug-related legislation, the UK government slavishly followed the US  lead and psychedelics were banned here in 1964. The reason for this strict control is to prevent the recreational use of these drugs, particularly by young people. The controls are supposedly designed to reduce their harms, although in the case of hallucinogens these harms are clearly less than those from most other drugs, including legal ones such as alcohol (Nutt et al., 2010). This decision has efficiently stopped research into these drugs to the detriment of researchers; worse still, many thousands of patients have been denied potential new medicines.

Almost all nations in the world are signatories to the UN conventions, so the ban on use is almost totally worldwide, with the only exceptions being made for plants growing wild which contain psychotropic substances from among those in Schedule I and which are traditionally used by certain small, clearly determined groups in magical or religious rites (1971 Convention Commentary Article 32:4).

Before these UN regulations were brought in, LSD had been widely studied with about 1000 studies involving 40,000 subjects (Masters & Houston, 1971). The pharmaceutical company that invented LSD, Sandoz, saw its huge potential for understanding the brain and as a possible avenue to new treatments, so they made it widely available to the worldwide scientific community. In the 50 years since its ban, there has been almost no new research despite remarkable advances in neuroscience technologies such as PET and fMRI that could allow a much greater understanding of its actions than were possible in the 1950s. The limited research now developing in this field has already revealed remarkable and unexpected insights into how these drugs produce hallucinations (see Carhart-Harris et al., in this issue). They also offer a possible new human model of psychosis against which to test new antipsychotic agents.

The clinical potential of hallucinogens was always seen as one of the most important advances. The founder of Alcoholics Anonymous reportedly became abstinent after an LSD experience in which he saw he could escape from the control alcohol had over him, and many others tried the same approach. A recent meta-analysis of the old clinical trials in which LSD was used to treat alcoholism (Krebs & Johansen, 2012) found that the effect size of LSD was as great as that of any other treatment for alcoholism developed since. This apparent clinical utility of LSD has been denied to millions of patients, and alcoholism is now the leading cause of disability for men in Europe (Wittchen et al., 2011).

Another of the original benefits of LSD, as a way to come to terms with dying, could offer a more humane and positive alternative to sedatives and opioids. The value of this approach has just resurfaced with the first LSD study in 50 years (Gasser et al., 2014) where it again was shown to reduce anxiety in those with terminal illness. This complements the approach of Charles Grob in this issue, using psilocybin for cancer anxiety.

Other Schedule 1 psychedelic drugs have similar potential for treatment uses. Ibogaine is licensed for the treatment of addiction in New Zealand. Psilocybin, obtained from ‘magic mushrooms’, is a shorter-acting version of LSD that has been shown to be a possible treatment for obsessive-compulsive disorder (Moreno et al., 2006) and cluster headaches (Sewell et al., 2006). Roland Griffiths’ group in Johns Hopkins has shown that psilocybin given in a psychotherapy setting can produce very long-lived and profound improvements in mood and well-being (Griffiths et al., 2008).

That this small handful of studies represents all the clinical work in the last 50 years proves how destructive the banning of hallucinogens has been on treatment research. Regulators say that the UN conventions do not ban research – they just ensure that the drugs are subject to a level of control commensurate with their harmfulness and lack of clinical utility. Yet this Schedule 1 control is the highest level of security, meaning that hallucinogens are controlled to a level more extreme than that for heroin or cocaine, so belying the harm argument. The lack of clinical utility is self-fulfilling, since with virtually no research in this field clinical findings are not going to develop. Complying with the current regulations is very time-consuming and expensive. A Schedule 1 licence in the UK costs about £6000 in fees and other costs and takes a year to obtain. Obtaining the drugs is also difficult and expensive. We have been quoted more than £3000 per 2mg dose of psilocybin for an MRC-funded clinical trial on depression. Comparable compounds that are not controlled can be obtained for 1/100th of that price. Much of the expense is because there are almost no production facilities in the world that have the necessary licences for holding and dispensing Schedule 1 drugs.

I suspect that this ongoing dearth of research is tacitly encouraged by governments as it might challenge the status quo. Lack of new evidence also perpetuates the justification for severe controls on the grounds of the precautionary principle. Politicians have tried to stop our work on psilocybin on the grounds that it uses ‘illegal drugs’. They have also attempted to disrupt our psilocybin depression trial by using Freedom of Information requests to our universities and the MRC.

An exploration of the mind

One of the founding fathers of American psychology, William James, used hallucinogens as part of his exploration of the mind. From his experiences he concluded: 
Our normal waking consciousness is but one special type of consciousness. Whilst all about it, parted from it by the filmiest of screens, there lie potential forms of consciousness entirely different. No account of the universe in its totality can be final that leaves these disregarded. How to regard them is the question – for they are so discontinuous with ordinary consciousness.
Despite the massive influence of William James on the development of the discipline of psychology his interest in studying consciousness using drugs (in his case nitrous oxide) to produce alterations in it has been largely ignored, probably because of social pressure and the complexity of doing such work. I would argue that these drugs are central to key areas of psychology research such as consciousness and mood regulation. How can one explore consciousness without perturbing it? What mediates the positive mood effects of psychedelics and how can we use them to assist in treatments?

Psychedelics offer a remarkable and safe way of producing fast and profound changes in key psychological processes. I would support James’s desire to explore other forms of consciousness and assert that hallucinogenic drugs provide one way of mediating this research. One could in fact argue that understanding the psychedelic state is one of the great challenges for human psychology research.

The other great insight into the value of these drugs comes from the author/scientist Aldous Huxley. His self-experimentation with various hallucinogens is well documented in his books, such as the Doors of Perception, its title reflecting the writings of the visionary artist William Blake:
If the doors of perception were cleansed everything would appear to man as it is, infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern. (William Blake, 1993)
The article by Carhart-Harris, Mendel Kaelen and myself in this issue outlines just how hallucinogens open up the chinks in the cavern of the brain. We provide direct support for the idea that the brain dictates what is perceived not what is there; the human brain can and does truly close itself up to many things, and psychedelics can open it again

A way forward

The failure of the scientific community, particularly neuroscientists, to protest the denial of research on hallucinogens is one of the most disturbing failures of science leadership in the past century, and it must be rectified. Psychologists and other neuroscientists must demand the right to study these drugs. Our professional organisations should demand the overturn of the UN Schedule 1 status for hallucinogens and in the meantime push for hospital and university research groups to be given exemption from the need to hold these licences. The need for this field to be opened up to psychologists is beautifully put by Aldous Huxley himself: 
Great is truth, but still greater, from a practical point of view, is silence about truth. Facts do not cease to exist because they are ignored. By simply not mentioning certain subjects… totalitarian propagandists have influenced opinion much more effectively than they could have by the most eloquent denunciations.
We should value his insights not only because they derive from a broad knowledge of science and a deep understanding of his personal experience with hallucinogens, but also because he followed his beliefs to the end using LSD to ease his own death.

David Nutt is Professor of Neuropsychopharmacology at Imperial College London
d.nutt@imperial.ac.uk 


References
  1. Gasser, P., Holstein, D., Michel, Y. et al. (2014). Safety and efficacy of lysergic acid diethylamide-assisted psychotherapy for anxiety associated with life-threatening diseases. Journal of Nervous and Mental Disease. doi:10.1097/NMD.0000000000000113
  2. Griffiths, R., Richards, W., Johnson, M. et al. (2008). Mystical-type experiences occasioned by psilocybin mediate the attribution of personal meaning and spiritual significance 14 months later. Journal of Psychopharmacology, 22, 621–632.
  3. Krebs, T. & Johansen, P.-Ø. (2012). Lysergic acid diethylamide (LSD) for alcoholism: A meta-analysis of controlled trials. Journal of Psychopharmacology, 26, 994–1002.
  4. Lee, M.A. & Shlain, B. (1985). Acid dreams: The complete social history of LSD, the CIA, the Sixties and beyond. New York: Grove.
  5. Masters, R. & Houston, J. (1971). The varieties of psychedelic experience: The classic guide to the effects of LSD on the human psyche. Rochester, VT: Park Street.
  6. Moreno, F.A., Wiegand, C.B., Taitano, E.K. & Delgado, P.L. (2006). Safety, tolerability and efficacy of psilocybin in 9 patients with obsessive-compulsive disorder. Journal of Clinical Psychiatry, 67, 1735–1740.
  7. Nutt, D.J., King, L.A. & Nichols, D.E. (2013). Effects of Schedule I drug laws on neuroscience research and treatment innovation. Nature Reviews Neuroscience,14(8), 577–585.
  8. Sewell, R.A., Halpern, J.H. & Pope, H.G. Jr (2006). Response of cluster headache to psilocybin and LSD. Neurology, 66, 1920–1922.
  9. Sessa, B. (2012). The psychedelic renaissance: Re-Assessing the role of psychedelic drugs in 21st century psychiatry and society. London: Muswell Hill Press.
  10. Wittchen, H.U., Jacobi, F., Rehm, J. et al. (2011). The size and burden of mental disorders and other disorders of the brain in Europe 2010. European Neuropsychopharmacology, 21(9), 655–679.

Peter J. Marshall - Coping with Complexity: Developmental Systems and Multilevel Analyses in Developmental Psychopathology

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The article below is a follow-up to Willis F. Overton's "Relationism and Relational Developmental Systems: A Paradigm for Developmental Science in the Post-Cartesian Era" and Peter J. Marshall's "Beyond Different Levels: Embodiment and the Developmental System," (which is a more recent piece than the one below, but the one below is more in-depth).

This another installment in my continuing fascination with Relational Developmental Systems and its application in both psychology and epigenetics.

Full Citation:
Marshall, PJ. (2013). Coping with complexity: Developmental systems and multilevel analyses in developmental psychopathology. Development and Psychopathology; 25(4, pt 2): 1311–1324. doi:10.1017/S0954579413000631

Coping with complexity: Developmental systems and multilevel analyses in developmental psychopathology


PETER J. MARSHALL
Temple University

Abstract

Developmental psychopathology is not characterized by adherence to one specific theory but instead serves as an organizational framework in which research is driven by a number of key assumptions. In the developmental psychopathology approach, two primary assumptions emphasize the importance of systems thinking and the utility of multilevel analyses. As will be illustrated here, these emphases are inextricably linked: a systems approach necessitates a multilevel approach, such that a level of organization must bring coherence to a level of mechanisms.Given this assumption, coming to an integrative understanding of the relation between levels is of central importance. One broad framework for this endeavor is relational developmental systems, which has been proposed by certain theorists as a new paradigm for developmental science. The implications of embracing this framework include the potential to connect developmental psychopathology with other approaches that emphasize systems thinking and that take an integrative perspective on the problem of levels of analysis.


* * * *

Among the foundational emphases of developmental psychopathology are the necessity of a systems approach and the value of explanations that bridge multiple levels of analysis (Cicchetti, 2010; Sroufe & Rutter, 1984). Both of these emphases have played a significant role in the success of the developmental psychopathology approach by framing the understanding of adaptation and maladaptation across the life span. Accordingly, most contemporary developmental psychopathologists would view themselves as subscribers to some form of systems approach (e.g., as espoused by Cicchetti & Toth, 1997; Sameroff, 2000), and the encouragement and use of multilevel analyses remains a key theme (Burnette & Cicchetti, 2012; Cicchetti, 2008, 2011; Cicchetti & Curtis, 2007). It may therefore be objected that in undertaking a discussion of these familiar constructs I am preaching to the converted. However, my suggestion is that the 25th anniversary of the first volume of Development and Psychopathology presents an opportunity not only to reiterate the theoretical importance of systems thinking and multilevel analyses but also to consider the changing background for these emphases as we look ahead to the next 25 years.

The initial focus of this article concerns the influence of embryology and developmental biology on the systems approach in developmental science more generally and on developmental psychopathology more specifically. Although much of the original impetus for systems thinking came from classic work in embryology, recent advances in developmental and evolutionary biology have further underscored the necessity of a systems approach. These advances are illustrating the vast complexity involved in the construction of a phenotype, and they are putting a great deal of pressure on traditional approaches to conceptualizing the interplay of biology and environment in understanding developmental processes. With its status as an inherently integrative discipline, developmental psychopathology promises to be an important testing ground for these issues as we head into the next decades of the discipline.

One key premise of the current paper is that a systems approach and the need for multiple levels of analysis go hand in hand. This premise is based on the assumption that a systems approach requires the consideration of two types of explanations that can be seen as occupying different levels of analysis: a level of organization (i.e., a systems level) that serves to bring intelligibility to a different level of mechanisms. This key tenet is manifested in the central principle of organicism, which stipulates that mechanisms (i.e., the parts of a system) can only make sense in the context of a holistic systems level that, in turn, cannot be reduced to its parts (Pepper, 1942; von Bertalanffy, 1968).

Given the necessity of multiple levels of analysis, conceptualizing the relations between these levels becomes of utmost importance. Overton (2006, 2010) has written extensively on the contrast between a Cartesian worldview that imposes a “split,” or separation between levels, and a relational worldview that emphasizes their interdependence. A worldview constitutes a broad metatheoretical framework “that both describes and prescribes what is meaningful and meaningless, acceptable and unacceptable, central and peripheral, as theory . . . and method . . . in a scientific discipline” (Overton, 2007, p. 154). As described by Overton (2013), the split and relational worldviews give rise to different “midrange metatheories,” which in turn provide meaning contexts for more specific theoretical constructs. One such midrange metatheory that arises from the relational worldview is that of relational developmental systems, which Lerner and Overton have suggested provides a paradigm for the future of developmental science (Lerner, 2006; Lerner & Overton, 2008; Overton, 2006, 2010, 2013). As such, the relational developmental systems approach recognizes the dynamic complexity of developmental processes and exposes the inadequacy of split approaches, which emphasize simple interaction and the elevation of one level of analysis over another.

One goal of the current article is to explore the potential role for the relational developmental systems approach in maintaining the vitality of the study of adaptation and maladaptation in human development. To begin this exploration, I will first step back and briefly trace biological influences on systems thinking in developmental psychopathology. This tracing then leads to a discussion of the concept of the developmental system, its deep connections with developmental and evolutionary biology, and its place in the broader relational paradigm as formulated by Overton and Lerner (2012). This relational aspect is then more fully elaborated through an exploration of multiple levels of analysis.

Systems Approaches in Developmental Psychopathology: Biological Influences


As documented by Cicchetti (1990, 2010), the systems emphasis in developmental psychopathology has its origins in principles derived from the embryological studies of Kuo (1939), Spemann (1938), Waddington (1957), and Weiss (1939), among others. Key emphases from the classic work in embryology include the hierarchical nature of development, principles through which more complex forms arise from simpler ones, and the importance of context in early development. In turn, one even earlier influence was that of von Baer (1828/1956), who used his own findings concerning embryological development to formulate general principles of developmental change, particularly the concept of development as a continuing process of differentiation and integration.

One reason for the foundational quality of the classic work in 20th century embryology was that it was characterized by an organicist perspective that emphasized the emergent properties of higher level systems. Organicism is closely connected to the notions that parts of a system can only be understood through their relation to the whole system and that the behavior of a system cannot be predicted from, or reduced to, the simple aggregation of its parts (Pepper, 1942). Among other biological influences, the organicist perspective had received particular support from the embryological work of Spemann (1938), whose seminal findings with Mangold had highlighted the importance of plasticity, constraints, and context in early development (Mangold & Spemann, 1924, 2001).

Within developmental psychology, the influence of the organicist perspective in embryology was manifested in various ways (Cairns & Cairns, 2006; Sameroff, 1983). For instance, the orthogenetic principle of Werner (1948) and Piaget’s (1977) concept of equilibration were partly formulated with reference to evidence about the generation of novelty from the study of embryological development. More recently, Gottlieb (1992, 1998, 2007) drew on research in embryology (including his own) in delineating the theory of probabilistic epigenesis, which stands as an example of a biologically inspired systems approach that has also been specifically applied to the area of developmental psychopathology (Gottlieb & Willoughby, 2006). Probabilistic epigenesis is fundamentally an organicist, holist theory that emphasizes the interconnected nature of the parts of the developmental system. From this perspective, conceptualizing these connections goes beyond simple notions of interaction to a more dynamic set of reciprocal, bidirectional, coacting, interpenetrating processes (Overton, 2013).

Related to its influence on developmental psychopathology, Gottlieb’s seminal work played a formative role for a particular systems approach that is rooted in biology and that has been labeled developmental systems theory (DST). Here I wish to explore the contention that a broader extension of this approach, that of relational DST, can provide a potentially fruitful organizing framework for developmental science (Overton & Lerner, 2012). As a product of the relational worldview, this framework has at its core the related concepts of the developmental system and multiple levels of analysis (Overton, 2013). In this sense there is a distinct alignment between relational developmental systems and core tenets of the developmental psychopathology approach. However, noting this basic alignment is not enough for us to realize the transformative implications of the relational approach for developmental psychopathology. In order for that to take place, we also need to appreciate how the broader relational approach informs more specific, lower level theoretical approaches and how such approaches can inform empirical work in developmental psychopathology. As an initial step in this direction,we can now turn to the biologically inspired approach of DST as one such approach, and we can then consider how its extension through a broader relational aspect can expand the purview of this approach to the study of human adaptation and maladaptation across the life span.

DST

In the early 1990s, the term DST was introduced in two separate contexts and disciplines: by the developmental psychologists Ford and Lerner (1992) and then by two philosophers of biology, Griffiths and Gray (1994). Both sets of authors drew on the work of Gottlieb and other theorists (e.g., Lehrman, 1970; Oyama, 1985) who emphasized the importance of a systems perspective in the study of developmental processes. For current purposes, I will overlook differences between specific approaches (see Keller, 2005) and will simply introduce the core tenets of DST as a biologically oriented theory.

For proponents of DST, the explanandum (what is to be explained) is how the individual organism becomes constructed, and the explanans (the explanation) is the entire developmental system itself, which includes all biological and environmental resources available to the organism. This emphasis relates to the parity thesis of DST, which does not allow any one aspect of the developmental system to take an elevated causal role (Griffiths & Knight, 1998). From this perspective, parts of the developmental system derive their meaning from the context of the entire system, and the elevation of one developmental resource over another makes little sense (for a discussion, see Shea, 2011). This thesis gives rise to a fundamental tenet of DST, which is a strong objection to explanations of development that privilege the role of genes (see e.g., Ford & Lerner, 1992; Griffiths & Gray, 1994; Keller, 2010, 2011; Lerner, 2006; Lickliter & Honeycutt, 2003; Oyama, Griffiths, & Gray, 2001; Robert, 2004). Although DST theorists would acknowledge that the presence of genetic material is a necessary condition for cellular function, they emphasize that genes are not unmoved movers in that they only become causally relevant through their involvement in the entire developmental system.

In denying a privileged developmental role for genes, DST is diametrically opposed to any suggestion that DNA contains the information needed to construct an organism. The notion of a “genetic blueprint” has been the focus of intense criticism from a variety of developmental systems theorists (Ho, 2010; Jablonka & Lamb, 2005; Lerner, 2006). This criticism has arisen through recent developments in biology that have challenged traditional notions of genetics (Charney, 2012) and evolution (Ho, 2010; Jablonka & Lamb, 2005). These developments have included advances in epigenetics (Meaney, 2010) and the way in which the genome is conceptualized (Keller, 2011) as well as the converging appreciation that what is inherited by an individual organism is not only a complement of genes but also the biological and environmental scaffolding of the developmental system (Griffiths & Gray, 1994; Ho, 2010; Jablonka & Lamb, 2005). Although a full discussion of these issues cannot be entered into here, they hold a great deal of importance for developmental science (Overton, 2013).

Today the gene-centric notion that the genome contains a blueprint for development, which ensures a direct relation between genotype and phenotype, is antithetical to most developmental scientists. However, it may still have some implicit appeal to those who are seeking ways to manage the complexity of development. To understand why, consider the suggestion of 17th century preformationists, aided by van Leeuwenhoek’s advances in microscopy, that fully formed miniature adults could be glimpsed within sperm or eggs. As ridiculous as it seems today, this suggestion makes sense when placed in its historical perspective. At the time, the alternative to preformationism was a form of vitalism in which mysterious, unknowable forces direct the appearance of form in the initially formless material of the egg (Gilbert&Sarkar, 2000). Gould (1977) suggested that, when seen in this way, preformationism can be understood as an attempt to copewith the daunting complexity of embryological development. Its allure was that vital forces did not need to be invoked to explain the biological world: if development was mainly a process of getting bigger, it could be more readily placed within the mechanistic worldview of Newtonian science. However, the glimpses of the preformationists turned out to be misplaced, and explicit mentions of preformationism are now mainly confined to introductory lecture courses as an illustration of a failed and naıve attempt to understand human development. However, echoing back more than 300 years, proponents of DST argue that the preformation–vitalism debate remains relevant to contemporary developmental science. In short, they see the mission of DST as countering preformationism in its modern guise of genetic determinism with DST as a nonvitalistic, scientific, epigenetic organicism (Godfrey-Smith, 2000; Robert, 2004).

The rejection of preformationism or a simplistic genetic determinism may seem trivial to those who already endorse a developmental psychopathology approach. More broadly, it could be argued that the genetic blueprint metaphor represents a straw argument that is not the purview of contemporary developmental science. Perhaps we could take a less deterministic perspective on genes, denying them a fully explanatory or causal role and relaxing the literal blueprint metaphor to a kind of looser plan. In this arrangement, we could still see genetic information as specifying a latent, but potentially modifiable, representation of a trait and allowing other influences to play potentially important roles in determining the phenotypic expression of that trait. However, part of the challenge presented by DST is that even this looser conceptualization is seen as problematic: it is here that the stronger claims of DST take the approach into what may be less comfortable territory for many (Stotz, 2008). At the heart of DST is the view that the developmental system as a whole cannot be partitioned or split apart without a fundamental loss of intelligibility (Overton, 2007). Through its rejection of any such developmental dichotomy, DST stands in opposition to the notion that developmental outcomes are some combination of genetic and environmental influences (Oyama et al., 2001).

The oppositional stance of DST originally arose in part as a response to attempts by behavior geneticists to separate genetic and environmental influences into additive components (for a discussion, see Partridge, 2011). Although such attempts continue to be under distinct pressure from findings in developmental and evolutionary biology, Charney (2012) recently argued that they have not been replaced by an adequate paradigm that accounts for the immense complexity of how a phenotype is constructed. In response, Lerner and Overton (2012) suggest that the paradigm of relational developmental systems that combines DST with a broader relational worldview can provide such a framework. To support this contention, one can turn to a vast amount of work in developmental biology that has begun to unravel the complexities of developmental processes at the level of gene expression and regulation. Although the accommodation of these complexities is not possible from the Cartesian perspective of traditional behavior genetics, DST was itself founded on the acknowledgement and understanding of these complexities (Keller, 2010).

Lessons from developmental biology

A primary source of support for DST comes from ongoing work in developmental biology describing how spatial and temporal patterns of gene expression and regulation in the developing embryo relate to the development of bodily form (Gilbert, 2010). Although early work in this area suggested the existence of “master control genes” that direct the formation of certain morphological features (Gehring, 1998), it has become clear that such genes operate in a highly context-dependent fashion (Mikhailov, 2005). For instance, expression of the paired box gene 6 gene is essential for eye formation in species as diverse as fruit flies and humans, but only in the presence of other transcription factors that are also involved in pattern formation in the head region. In other parts of the body, expression of the same gene plays an important role in very different functions (e.g., the differentiation of the pancreas).

One key lesson from this work (much of which has been done in model organisms such as drosophila) is that there are no genes that specifically or solely determine major characteristics of bodily form, such as segments, eyes, or wings. The same could be said for all bodily structures, including the mammalian brain (Stiles, 2008). Similar principles also extend to the development of more abstract bodily characteristics, such as symmetry or polarity (e.g., of hands, limbs, or eyes), which are not predetermined, but instead arise through the organized activity of the system (Minelli, 2009). There are genes involved in the development of all these structures and characteristics, and changes to these genes, in specific temporal and spatial contexts, can impede or divert the typical course of development. However, morphology clearly arises not through a specific genetic plan but through the reciprocal coaction of component parts of the wider developmental system.

Another lesson from developmental biology is that genes are not simply switched on and off in a maturational or predetermined fashion, but rather gene expression and regulation operate in the context of a wider and highly intricate developmental system. In support of the original organicist work in embryology, the picture that has emerged from developmental biology is that construction of the organism proceeds through dynamic cellular and molecular coactions involving genes, but not directed by them (Gottlieb, 2007). Thus, what becomes crucial are the laws governing these coactions rather than the programmed expression of genes. Developmental biologists have begun to uncover the principles that govern embryological growth at a cellular and molecular level, including fate maps, induction, morphogenetic gradients, redundancy, pleiotropy, positive and negative feedback, and nonlinearity (Gilbert, 2010; Rudel & Sommer, 2003; Wolpert, 1994).

The above themes suggest how the organicist framework in embryology, which provided part of the foundation for the developmental psychopathology approach, has been further strengthened by more recent findings in developmental biology. It is worth noting that lessons for developmental psychopathology from contemporary developmental biology extend much further than this brief treatment allows (Cicchetti & Cannon, 1999; Cicchetti & Curtis, 2006). For instance, other connections have been made through the emergent subfield of evolutionary developmental biology, or what is commonly known as “evo-devo” (Hall, 1992). Through the consideration of evolutionary influences on life history development (Gilbert, 2001), aspects of evo-devo have served as the inspiration for recent work on phenotypic plasticity in relation to environmental circumstances and the consequences of this plasticity for adaptation and maladaptation across the life span (Ellis & Bjorklund, 2012). However, it could be argued that much of the field of evo-devo has neglected the lessons from DST concerning the extended nature of the developmental system and the implications of this extension for evolutionary theory (Robert, Hall, & Olson, 2001).

Another theme shared with developmental biology comes from the notion that the process by which a pattern is constructed cannot be deduced from the final pattern itself, but only from a serious consideration of development. This connects to the raison d’eˆtre of developmental psychopathology: that a disorder can only be meaningfully viewed through the lens of development (Cicchetti, 2010). This issue may be more familiar as the concept of equifinality, the observation that the same pattern can arise through different mechanisms, with only the study of development being able to shed light on what these mechanisms might be. What is particularly fascinating is how far this core developmental principle extends, from the development of the patterns of butterfly wings (Brunetti et al., 2001) to the development of psychopathology (Cicchetti & Rogosch, 1996).

Complexity in developmental systems: Finding a way forward

The findings gleaned from developmental biology (as modern day embryology) have provided important insights into development as an epigenetic process that proceeds through dynamic and reciprocal coactions among coding and noncoding DNA, transcription and translation factors, the cytoplasm, and the intra- and intercellular environments more generally. From this perspective, the function of a gene depends heavily on contextual factors, including its temporal and spatial coactions with other genes and gene products. Along these lines, there have been important changes in the definitions of what constitutes a gene and the genome as well as a reframing of the role of environmental influences on gene expression (Greenberg & Partridge, 2010; Jablonka & Lamb, 2005; Jablonka & Raz, 2009; Keller, 2011). These developments are very much in line with the core tenets of DST, which places the construct of the gene within the wider developmental system. These complexities are being increasingly recognized in terms of their implications both for developmental science more generally and developmental psychopathology more specifically (Grigorenko & Cicchetti, 2012; Rutter, 2012).

A related lesson can be seen in the realm of developmental disorders, where the appeal of a biologically oriented DST approach has been bolstered by the growing consensus that the original promise of the revolution in molecular psychiatric genetics has not been realized (Charney, 2012). For example, the hunt to isolate straightforward genetic effects in disorders such as autism and schizophrenia has been severely hampered by factors such as genetic heterogeneity, pleiotropic effects, de novo mutations, and polygenic inheritance (Wahlsten, 2012). This is not to imply that genetics is uninvolved in such disorders or that novel methodological combinations of genetic and neuroimaging methods cannot shed light on the development of psychiatric disorder (Addington & Rapoport, 2012). It is rather that the sheer complexity involved in the construction of a phenotype requires the adoption of revised sets of assumptions and principles that would essentially constitute a paradigm shift away from traditional approaches (Charney, 2012).

As noted earlier, acknowledging the complexity of development has long been a key aspect of DST, and in this sense it potentially provides a signpost for progress in developmental science. Taking this further, Overton and Lerner (2012) have suggested that the requisite paradigm shift can be achieved through the combination of DST with a broader relational worldview that emphases “co-acting, co-developing processes functioning according to the reciprocal causality entailed by complex positive and negative feedback loops” (Overton & Lerner, 2012, p. 376). However, to better understand what this approach entails, we need to look closely at the question of multiple levels, since the core of the relational developmental systems approach concerns a particular way of conceptualizing different levels of analysis and the relations between these levels.


* * * *

This work was supported by an award from the NIH (HD-68734) and by a Fellowship from the Center for Humanities at Temple University. This article is dedicated to Willis F. Overton on the occasion of his retirement from the Department of Psychology at Temple University. For more than four decades, Bill has espoused the value of the relational approach as a guiding framework for psychological science, with deep implications for the study of typical and atypical development. The influence of Bill’s thinking on my writing here is unmistakable, and I am very grateful for his mentorship and for his input on previous drafts.

Friday, September 05, 2014

40% of Women with Severe Mental Illness Are Victims of Rape or Attempted Rape


This statistic is sad, but it's not at all surprising. I would wager that number is low. But when you add childhood physical abuse and neglect, and those with narcissistic mothers or primary caretakers, we're edging up to 100%. Interestingly, 60% of the women with SMI were given a schizophrenia diagnosis.

This article is open access, and I have included the discussion and conclusion sections below.

40% of women with severe mental illness are victims of rape or attempted rape 


September 4, 2014

Women with severe mental illness are up to five times more likely than the general population to be victims of sexual assault and two to three times more likely to suffer domestic violence, reveals new research led by UCL and King's College London funded by the Medical Research Council and the Big Lottery.

The study, published in Psychological Medicine, found that 40% of women surveyed with severe mental illness had suffered rape or attempted rape in adulthood, of whom 53% had attempted suicide as a result. In the general population, 7% of women had been victims of rape or attempted rape, of whom 3% had attempted suicide. 12% of men with severe mental illness had been seriously sexually assaulted, compared with 0.5% of the general population.

The findings are based on a survey of 303 randomly-recruited psychiatric outpatients who had been in contact with community services for a year or more, 60% of whom had a diagnosis of schizophrenia. They were interviewed using the British Crime Survey questionnaire for domestic and sexual violence, and their responses were compared to those from 22,606 respondents to the 2011/12 national crime survey. The results were adjusted for a wide range of socio-economic factors including age, ethnicity and marital status.

"The number of rape victims among women with severe mental illness is staggering," says lead author Dr Hind Khalifeh of UCL's Division of Psychiatry. "At the time of the survey, 10% had experienced sexual assault in the past year, showing that the problems continue throughout adulthood. Considering the high rate of suicide attempts among rape victims in this group, clinicians assessing people after a suicide attempt should consider asking them if they have been sexually assaulted. Currently this is not done and so patients may miss opportunities to receive specialist support."

Men and women with mental illness were also found to be more likely to be victims of domestic violence than the general population. Domestic violence includes emotional, physical and sexual abuse.* 69% of women and 49% of men with severe mental illness reported adulthood domestic violence.

Domestic violence from family members (other than partners) made up 63% of total domestic violence cases against psychiatric patients compared with 35% of the general population. "Most domestic violence prevention policies for adults focus on partner violence, but this study shows that interventions for psychiatric patients also need to target family violence," says Dr Khalifeh.

The study shows a strong association between mental illness and sexual and domestic violence, but the direction of causality is not certain. In some cases, experiences of violence may have contributed to the onset of mental illness. However, violence experienced in the past year would have been after diagnosis of severe mental illness since all participating patients had been under the care of mental health services for at least a year.

The results were adjusted for drug and alcohol use in the past year, but this did not significantly affect the outcomes and causality is hard to determine. Drug and alcohol use may increase the risk of being a victim, but equally victims of violence may turn to drugs or alcohol as a way of coping.

Senior author Louise Howard, Professor in Women's Mental Health at King's College London, says: "This study highlights that patients with severe mental illness are at substantially increased risk of being a victim of domestic and sexual violence. Despite the public's concern about violence being perpetrated by patients with severe mental illness, the reality for patients is that they are at increased risk of being victims of some of the most damaging types of violence."


Article adapted by Medical News Today from original press release.

Citation:
H. Khalifeh, P. Moran, R. Borschmann, K. Dean, C. Hart, J. Hogg, D. Osborn, S. Johnson, and L. M. Howard. (2014, Sept 4). Domestic and sexual violence against patients with severe mental illness. Psychological Medicine; Open access publication.

*Definitions of domestic and sexual violence are given below:

Domestic violence: Emotional, physical or sexual abuse (as defined below) perpetrated by partner (boyfriend or girlfriend; husband, wife or civil partner) or family member other than partner (parents, children, siblings or any other relatives) 

Emotional abuse: perpetrator did any of the following: (a) Prevented them from having fair share of money (b) Stopped them from seeing friends or relatives (c) Repeatedly belittled them so they felt worthless (d) Threatened to hurt them or someone close to them (e) Threatened them with a weapon or threatened to kill them 

Physical violence: perpetrator did any of the following (a) Pushed them, held them down or slapped them (b) Kicked, bit or hit them, or threw something at them (c) Choked or tried to strangle them (d) Used some other kind of force against them 

Sexual violence: perpetrator did any of the following in a way that caused fear, alarm or distress: (a) Indecently exposed themselves to them (b) Touched them sexually when they did not want it (e.g. groping, touching of breasts or bottom, unwanted kissing) ( (c) Forced them to have sexual intercourse, or to take part in some other sexual act, when they made it clear that they did not agree or when they were not capable of consent (Serious Sexual Assault). 

We divided sexual violence by perpetrator into sexual domestic violence (perpetrated by partner or family members) and sexual non-domestic violence (perpetrated by strangers or acquaintances). The control study sample was randomly divided into two groups with slightly different questions on the perpetrator of sexual violence - such that it was possible to estimate domestic sexual violence in the whole study sample, and non-domestic sexual violence in only half the sample. We were able to estimate these subtypes for the entire patient sample. 

Adverse impact of serious sexual assaults (SSA): SSA led to one or more of the following: 
(a) Physical injuries / illness: Minor bruising or black eye, scratches, severe bruising or bleeding from cuts, internal injuries or broken bones/ teeth, other physical injuries, contracting a disease, becoming pregnant 
(b) Psychological/social problems: Mental or emotional problems, such as difficulty sleeping/ nightmares; depression; low self-esteem; stopped trusting people / difficulty in other relationships; stopped going out 
(c) Suicide attempt
Source: UCL (University College London)

* * * * *

 Here is the discussion and conclusion from the article, which is certainly worth looking at.

Discussion


This study compared the prevalence of domestic and sexual violence against patients with SMI under the on-going care of mental health services with a general population control group, and found a high prevalence and markedly excess odds of these experiences among patients with SMI. Among domestic violence victims, family violence was experienced by a greater proportion of SMI than control victims. Women with SMI were more likely to attempt suicide as a result of SSA than female victims without SMI, and more likely to disclose sexual violence to health professionals and the police.


The prevalence estimates for domestic and sexual violence among women with SMI are in line with previous studies (Goodman et al. 1997; Teplin et al. 2005; Hughes et al. 2012). To our knowledge, no past studies have compared domestic violence in psychiatric patients with a general population control sample (Oram et al. 2013). We found that people with diagnosed SMI in contact with psychiatric services had 2- to 4-fold elevated odds of all subtypes of domestic violence (emotional, physical and sexual) compared to the general population. These findings suggest that clinicians should routinely enquire not just about physical domestic violence, but also emotional and sexual abuse – especially given the increasing evidence that emotional abuse may have a greater health impact than physical violence (Yoshihama et al. 2009; Jewkes, 2010). The relationship between experiencing violence and SMI is likely to be bi-directional (Danielson et al. 1998; Chen et al. 2010; Jonas et al. 2014), but we report increased risk of recent violence occurring after illness onset. In this study, substance misuse appeared to account for a proportion of the excess violence risk, and may be a suitable target for intervention, although the direction of causality is unclear, since being a victim can lead to increased substance misuse as a coping mechanism (Coker et al. 2002).


We found that family violence comprised a greater proportion of overall domestic and sexual violence experiences among victims with SMI than general population victims (Krug, 2002). People with SMI are known to have elevated risks of childhood maltreatment, and abuse by family members, including parents, may extend into adulthood (Varese et al. 2012). Most domestic violence prevention policies among working-age adults have focused on partner violence, but our findings suggest that interventions among patients with SMI also need to target family violence.


We detected a 6- to 8-fold elevation in the odds of sexual assault among both men and women with SMI. This is lower than the 17-fold risk reported in a recent US study (Teplin et al. 2005), but we adjusted for a broader range of confounders, and included estimates for lifetime rather than just past-year sexual assaults (where prevalence is low and estimates are imprecise). Half of the women with SMI who experienced SSA reported attempting suicide as a result of these experiences. In patients with SMI, suicide attempts may be seen as a direct result of acute psychotic relapse (Fialko et al. 2006), with under-detection of trauma and related post-traumatic stress disorder as a trigger for suicidal behaviour.


The finding of substantially elevated risk of domestic and sexual violence victimization among patients with SMI mirrors the findings of a high prevalence of all types of victimization, including violent crime by strangers or acquaintances (Bengtsson-Tops & Ehliasson, 2012; Katsikidou et al. 2013), as well as non-violent crime such as thefts, burglaries and criminal damage (Teplin et al. 2005). Future research should explore shared and unique risk factors for these victimization experiences, in order to guide effective interventions. Patients with an abuse history may benefit from trauma-focused psychological therapy (Warshaw et al. 2013; WHO, 2013b). These interventions have an evidence base in non-psychiatric populations, mainly in antenatal or accident and emergency settings, but their effectiveness for patients with SMI has not been fully explored (Mueser et al. 2008).


Among victims of sexual assault, a higher proportion of SMI than control victims reported their experiences to the police, but there is evidence that they are often disbelieved and discriminated against within the criminal justice system (Hester, 2013; Pettit et al. 2013). Only 43% of patients had disclosed their experiences to a healthcare professional, despite the fact that this patient population had received intensive support from psychiatric services for at least a year in order to be included in the study. Health professionals often fail to detect trauma histories in patients with SMI, or where they do detect it, they often fail to address it in patients’ management plans, (Howard et al. 2010; Nyame et al. 2013). This may lead to treatment resistance for the primary mental disorder (Mueser et al. 2002). There is therefore a need for interventions that improve detection of violence by healthcare professionals, and the provision of subsequent support. There is evidence from a pilot study that a complex intervention which includes reciprocal training of mental health and domestic violence sector professionals, and a care pathway with integrated advocacy services, can improve detection and outcomes of domestic violence among psychiatric patients (Trevillion et al. 2014). Our findings suggest the need to include screening and support for sexual assaults in such interventions. Effective interventions would require joint working with voluntary sector organization and the criminal justice system (Krug, 2002; WHO,
2013b).


Strengths of this study include: the large randomly selected sample; reliable, validated measures of violence experiences; hypothesis-based analyses and careful adjustment for confounders. We adjusted for a broader range of confounders than most previous related studies (Hughes et al. 2012; Oram et al. 2013), including adjustment for demographics and individual/area deprivation. We also explored potential mediation by substance misuse. One limitation is the lack of data on violence perpetration among controls, so we could not adjust for the potential mediating effect of this factor.


Potential limitations include the cross-sectional nature of the study, which precludes firm conclusions about direction of causality. All patients had been under the care of mental health services for more than 1 year, so by definition past-year violence would have occurred after the onset of SMI (notwithstanding measurement error). Nonetheless the causal direction remains uncertain, since patients with SMI may have had historical victimization experiences, which may put them at risk of recent violence.


The response rate was somewhat low at 52%, but we researched a sensitive topic in a hard-to-reach population. Although domestic and sexual violence are sensitive topics for any group, they may be even more sensitive and complex for patients in secondary mental healthcare to discuss. This is because this particular group suffers from stigma related to violence risk (Link et al. 1999), and may worry about additional consequences of disclosure such as involuntary hospital admission (Pettit et al. 2013). We used a rigorous random sampling procedure rather than a convenience sample (unlike many previous related studies) (Hughes et al. 2012; Oram et al. 2013), and nonresponders had the same demographic profile (in terms of age and sex) as participants. We did not have additional details on the characteristics of nonresponders, so it is difficult to comment on the likely magnitude and direction of non-response bias.


It is worth noting that this study relates to patients with SMI in contact with secondary mental health services, so the findings may not generalize to those with similar mental disorders who do not require on-going psychiatric care. In national UK surveys, two thirds of patients with a diagnosis of a psychotic disorder were found to be in contact with mental health services (McManus et al. 2010). Those in contact with services may be at increased risk of victimization, due to a potential excess of risk factors such as social isolation, substance misuse or violence perpetration.


The crime survey definition of domestic violence does not have sufficient detail on context, severity and frequency to allow a distinction between recurrent, controlling severe abuse and incidents of violence reflecting relationship couple tension (Johnson, 2006). Reporting bias is possible, since patients and controls may have different thresholds for disclosing violence, although there is no evidence to suggest that people with SMI over-report these experiences (Goodman et al. 1999). Residual confounding is possible. This general population control sample may have included a small proportion of people with SMI (<3%) (Health and Social Care Information Centre, 2013) although the effect of this would have been to have biased the ORs closer to the null. We compared a London-based patient sample with a national control sample (to ensure adequate power), but violence prevalence did not differ by region of residence in the control group (ONS, 2013). The findings from the sensitivity analysis, which compared patients to London-based controls, were consistent with those comparing patients to national-based controls.



Conclusion


Men and women with SMI who are under the on-going care of psychiatric services are 2–8 times more likely to experience sexual and domestic violence than the general population, with a high relative burden of family violence. Women with SMI are more likely than women in the general population to suffer psychological ill health and attempt suicide following sexual assaults, but most do not disclose violence to healthcare professionals. Healthcare professionals need to work closely with the voluntary sector and criminal justice system in order to effectively address the high burden of violence in this population. Potentially effective support includes advocacy and trauma-focused psychological interventions (Mueser et al. 2008; Trevillion et al. 2014). Healthcare professionals need to consider victimization as a potential trigger for suicide attempts among patients. Future research should explore reasons for non-disclosure to healthcare professionals, and test the effectiveness of interventions to improve the detection of victimization and support offered by mental healthcare professionals.

Shrink Rap Radio #419 – Internal Family Systems Therapy with Jay Earley PhD

http://www.selfleadership.org/files/ifs_store/WBK-004-SELF-THERAPY-WORKBOOK-c.jpg

Aside from Richard Schwartz, the creator of Internal Family Systems Therapy, no one has done more to make the ideas and techniques available to therapists and lay readers than Jay Earley (along with his wife and frequent co-author, Bonnie Weiss).

On this week's episode of Shrink Rap Radio, Dr. David Van Nuys interviews Dr. Jay Earley.

Shrink Rap Radio #419 – Internal Family Systems Therapy with Jay Earley PhD

A psychology podcast by David Van Nuys, Ph.D.
Posted on September 3, 2014
Copyright 2014: David Van Nuys, Ph.D.


Jay Earley

Jay Earley, PhD, is a psychotherapist, group leader, author, teacher, and theorist. He teaches Internal Family Systems Therapy (IFS) IFS to the general public as a practice for self-help and peer counseling. He also teaches a variety of classes and workshops applying IFS to specific psychological issues such as procrastination, communication, relationships, and the inner critic. He is the author of Self-Therapy: A Step-by-Step Guide to Inner Wholeness Using IFS, Freedom from Your Inner Critic, Resolving Inner Conflict, Working with Anger in IFS, and Negotiating for Self-Leadership in IFS. Jay Earley and Bonnie Weiss have published a series of audio products related to IFS, including IFS Courses, Guided Meditations, and Demonstration Sessions.

Jay has created the Pattern System, a method for understanding parts, behavior, healthy capacities, internal dynamics, and underlying psychological issues. It is useful for mapping the psyche, understanding how people act and relate to others, and guiding IFS work. He has published a book entitled The Pattern System, and a book Conflict, Care, and Love that helps you to understand your relationship patterns and transform them.

Jay is the creator of Self-Therapy Journey, a web application for psychological exploration and healing, which is based on IFS and the Pattern System.

Podcast:

Play
Check out the following Psychology CE Courses based on listening to Shrink Rap Radio interviews:

"Schizophrenia Is a Dirty Word" - OnBeing Labeled Schizophrenic

http://www.yalescientific.org/wp-content/uploads/2010/12/Schizophrenia_William-Zhang_JZ.png

In a new open access paper from The Psychiatric Bulletin, three researchers investigated the schizophrenia diagnosis from those who have received it. All of the subjects had received a major depression diagnosis previous to the schizophrenia diagnosis because they tried to hide the symptoms from the doctors, mostly out of fear of the stigma attached to the diagnosis.

These subjects also experienced a sense that neither family nor physicians really know what schizophrenia is, other than the standard "chemical imbalance in the brain" response.

The situation is sad - these people are acutely aware that their diagnosis scares people due to the misconception that schizophrenia = violence.

‘Schizophrenia is a dirty word’: service users’ experiences of receiving a diagnosis of schizophrenia


Lorna Howe, Anna Tickle, and Ian Brown
  • Dr Lorna Howe is a clinical psychologist, Cambian Group, and Trent Doctorate in Clinical Psychology, the University of Nottingham. 
  • Dr Anna Tickle is an academic psychologist, Nottinghamshire Healthcare NHS Trust, and clinical tutor, Institute of Work, Health & Organisations, the University of Nottingham. 
  • Dr Ian Brown is principal clinical psychologist, Nottinghamshire Healthcare NHS Trust.
Declaration of interest: None.

Abstract


Aims and method To explore service users’ experiences of receiving a diagnosis of schizophrenia and the stigma associated with the diagnostic label. Seven participants were interviewed about their perceptions of these experiences. Interviews were analysed using interpretative phenomenological analysis.

Results Five superordinate themes resulted from the analysis: (1) avoidance of the diagnosis of schizophrenia; (2) stigma and diagnostic labels; (3) lack of understanding of schizophrenia; (4) managing stigma to maintain normality; (5) being ‘schizophrenic’. These, together with their subthemes, highlighted avoidance of the term schizophrenia by participants and use of alternative terms by professionals, which limited opportunities for understanding the label and challenging associated stigma. Participants strived to maintain normality despite potential stigma.

Clinical implications There is a need to address the process of giving a diagnosis as a phenomenon of consequence within its own terms. Implications relate to how professionals deliver and discuss the diagnosis of schizophrenia.

The diagnosis of schizophrenia may be contradictory: as a means of access and explanation v. a source of labelling and social exclusion.1,2 Evidence suggests it is an extremely powerful diagnosis that can have a devastating impact on a person’s self-identity.3 Stigma can lead individuals to internalise negative attitudes, resulting in low self-esteem and social isolation.4 Alternatively, individuals may resist stigma and have a strong sense of group identity and empowerment.5 Incorporating the ‘schizophrenic’ identity into a new self-concept may be part of the recovery process.6 However, the importance of this experience remains largely silent within psychiatry and mental health services.7

Research has neglected perceptions of diagnosed individuals about the experience, thus failing to substantiate diagnosis as a phenomenon of consequence.8 The current research aimed to contribute to existing literature and inform the practice of giving the diagnosis of schizophrenia by exploring individuals’ subjective experiences of receiving a diagnosis of schizophrenia and stigma relating to the diagnostic label.

Method

Participants


Seven participants diagnosed with schizophrenia were recruited from a community mental health team. Three were male, four female. All were White British and aged 29-60 years (mean 44 years). All had received a diagnosis of schizophrenia between 6 and 17 years earlier (mean 12 years). 

Procedure


Ethical approval was received from a National Health Service (NHS) research ethics committee and an NHS trust. Participants gave informed consent prior to an audio-recorded semi-structured interview lasting between 40 and 90 min, conducted by one of the authors (L.H.). The interview schedule was developed in consultation with colleagues familiar with interpretative phenomenological analysis (IPA) and working with individuals experiencing psychosis. 

Analysis

Data were analysed using IPA procedures,9 which explore how people make sense of experiences. All interviews were transcribed verbatim: each transcript was read and re-read with initial notes made regarding meanings and interpretations. Emergent themes were developed to emphasise patterns and connections across exploratory comments. The themes were then connected to develop ‘clustered themes’. Patterns across participants were explored to develop ‘superordinate’ and ‘subordinate’ themes for the entire data-set. Constant re-examination of data ensured the themes remained related to the primary source. Themes were not chosen purely on their prevalence, but also on the depth of data and how they illuminated other themes. Researcher self-reflection was used to maintain awareness of assumptions and their potential impact on analysis, in line with a critical realist epistemological stance.

Results



Five interconnected superordinate themes, with two or three subordinate themes each, were drawn from the analysis (Fig. 1). The terms reflect those used by participants (e.g. ‘schizophrenic’), while acknowledging potential difficulties associated with such expressions. Pseudonyms are used with the consent of the participants. 
http://pb.rcpsych.org/content/38/4/154/F1.large.jpg
Fig 1. Illustration of the interconnections between themes. [View full-size]

Theme one: avoidance of the diagnosis of schizophrenia


Participants described avoidance of being diagnosed with schizophrenia and of the term ‘schizophrenia’, which had a significant impact on help-seeking behaviour. Three participants self-identified their symptoms as schizophrenia but avoided seeking help to evade being diagnosed due to fearing the label itself. They talked about not wanting to be ‘ill’, wanting to avoid stigma attached to the label, and concerns that others would not understand: 
 I’d read about it and I knew I had it... but I was too scared to tell the doctors what my real symptoms were so they could treat me’ (Carol).
There appeared to be serious clinical implications of this avoidance of the diagnosis of schizophrenia, including unnecessary distress, misdiagnosis and preventing early intervention. All participants reported being misdiagnosed with depression due to actively avoiding being labelled with schizophrenia. 

Once diagnosed, participants furthered avoidance of the term schizophrenia by keeping their diagnosis secret from others, including close family, for fear of being treated differently: 
 ‘I’ve got two step-sons... they think I’m a bit weird but they don’t know I’ve got schizophrenia... we get on okay and I don’t think I want to jeopardise or spoil that’ (David).
In contrast, participants’ eagerness to talk about their diagnosis during the interviews seemed indicative of their desire to talk about it within a safe context. This need seemed largely unmet by professionals and members of participants’ social networks.

Theme two: stigma and diagnostic labels


Participants described avoidance of telling people about their diagnosis because of its ‘unique’ stigma, which seemed more shameful and hurtful than stigma relating to ‘mental illness’ and other diagnoses:
 ‘You can tell anybody you’ve got bipolar [disorder], it used to be called manic depression, they just say “oh you’re just depressed”... I think schizophrenia is a unique thing on its own, because it’s always associated with violence, which breaks my heart. It’s always associated with violence’ (Carol).
Participants raised the role played by the media in reinforcing such stigmatisation:
 ‘It’s really bad information... because everything you watch on television, if there’s [a murder] and that the person has always suffered from [schizophrenia] for a number of years, they always seem to say that’ (Janet).
Participants were specifically asked to describe the experience of receiving a diagnosis of schizophrenia. Responses to this were mostly unclear and reflected uncertainty about the time of diagnosis:
 ‘I don’t know if I was diagnosed with depression before schizophrenia or not... God I don’t know... I don’t know how they diagnosed me’ (Paul).
Professionals appeared to use alternative, seemingly more acceptable terms such as ‘psychosis’, leading one of the participants to discover his diagnosis in an unexpected way: 
 ‘Nobody really explained to me properly that I’d got schizophrenia... I had one of those [care programme approach reviews] and with the paperwork that got mailed through... I noticed it on there... for years I’ve been told that it was psychosis’ (Ben).
When talking about whether there is a difference between psychosis and schizophrenia, he said:
 ‘I think I’ve dealt quite well with the fact that I’m mentally ill and I sometimes tell people that I suffer from illness. But I think if I was to say to them that I suffer from schizophrenia I don’t think I’d particularly like that. I think there is a kind of stigma attached to it’, later adding ‘It just seems like a word that makes you seem more unwell’ (Ben).
One person noticed that, even after diagnosis, professionals tended to use alternative terms to schizophrenia: 
 ‘People are always afraid of saying that word to me and they’re always saying something else... My [community psychiatric nurse] was too afraid to say it... because it is a dirty word to even say that word schizophrenia. It’s like saying f*off or something’ (Carol).
The description of the word ‘schizophrenia’ as distinct from the experience was deemed indicative of stigma being attached specifically to the diagnostic label, suggesting that alternative labels may be perceived to reduce stigma. 

Theme three: lack of understanding of schizophrenia


Participants described how avoidance of the term schizophrenia inhibited understanding more about it. Most perceived a lack of knowledge and understanding from both professionals and family members. A stark contrast was indicated between professionals’ biological understanding and alternative views potentially held by others:
 ‘I feel doctors sit back and they don’t know... they might give you a diagnosis of schizophrenia... they think it’s some kind of chemical imbalance in the brain... but they can’t explain it’ (David).
‘My mother... all she said was “I told you, it’s because you’re psychic, nothing to do with you being schizophrenic... you’re just psychic” ‘ (Janet).
Professionals’ focus on biological causes led most participants to liken schizophrenia to an inherent physical illness, requiring long-term medical treatment. This conceptualisation seemed to limit hope for recovery and encourage individuals to become passive recipients of care, concluding schizophrenia would always be part of their lives: 
 ‘I think this illness is ongoing for me, I don’t think that I’m going to... miraculously get well from it, so I just go for an injection once a fortnight’ (Helen).
Most participants wanted to develop their understanding of schizophrenia and indicated this could aid acceptance of the diagnosis:
 ‘Maybe if I’d have had it explained better to me in the beginning I might have accepted it better, and I think that would have helped me... a great deal’ (Janet).
In the absence of discussion of schizophrenia by professionals, one person turned to others with the same diagnosis for information. He highlighted the importance of shared experiences and peer support, but also the potential for services to better support individuals develop their understanding: 
 ‘I’ve been to some seminars... where people who have got schizophrenia have got up on stage and talked about it... I’ve related to some of those things more so than [to] what doctors have said to me’ (David).
Theme four: managing stigma to maintain normality

All participants reported seeing themselves as ‘normal’ and resisted internalising stigma. This was perceived as difficult in light of experienced and anticipated stigma, which seemed to have an impact on participants’ semblance of normality. Most described personal experiences of stigmatisation from family members and professionals.
‘I’ve had police... not that I’ve done anything wrong, but when it’s someone I’ve been associated with, and they’ve said “You’re not going to bring an axe out to me are you?”. Police! Even police’ (Carol).
Subtle experiences of others’ benevolent ‘over-concern’ and judgements of incompetence and unintelligence also appeared to be common experiences: 
 ‘When the doctor comes here, she always turns to my social worker to ask him. They’re treating me like I’m subnormal because I think they saw me as not being able to understand’ (Janet).
All participants conveyed constant awareness of potential stigma if others learned of their diagnosis. They described trying to maintain normality and protect themselves from stigma by keeping their diagnosis secret and managing others’ perceptions of them.
‘I overcompensate by being extra kind I think... trying to ring people up you know, have a chat... just to feel like they think I’m normal’ (Carol).
These strategies reflected a desire to maintain relationships, but paradoxically prevented relational closeness; most participants described being ‘isolated’ and lacking ‘close friends’.
‘I’ve isolated myself. I have been invited to different things but I decline offers; I don’t want to be in a position where people get to know me. Nobody likes rejection, so I just don’t put myself in that position’ (Janet).
Most participants appeared to condemn stigma associated with schizophrenia and perceived themselves as ‘normal’: 
 ‘It does bother me because I am pretty normal in most ways... to have people treat me like that, you want to say “Look, I’m not that bad” ‘ (Ben).
This was interpreted as explicit attempts to delineate others’ expectations from their own expectations and resist internalising stigma. However, this strategy had not been successful for one person, who highlighted a conflict in managing her self-identity:
‘I was frightened of my own self because I’d only associated schizophrenia with people who hurt other people. I kept thinking, oh my God, I’m going to end up like that, I’m going to end up a killer, so I was terrified of going out. I personally put the stigma on myself’ (Janet).
Theme five: being ‘schizophrenic’

Participants described coming to terms with their diagnosis and accepting or rejecting schizophrenia as part of their identity. Most talked about diagnosis as enabling access to treatment, which paved the way to a greater sense of acceptance: 
 ‘It’s nice to get [the diagnosis] because then you get help. I bet there’s people not getting any help because they don’t believe they’ve got [schizophrenia]’ (Paul).
For some, being diagnosed confirmed what they already ‘knew’; this indicated acceptance of the label as a description of their difficulties: 
 ‘It was like a relief in a way that at least they knew now what I already knew, that I’d got this schizophrenia’ (David).
Such acceptance also required disconfirmation of the stigma surrounding schizophrenia, and a sense of group identity and self-identity as being ‘schizophrenic’:
 ‘If you’d took me when I thought I was alright and put me in the middle of a class full of schizophrenics I’d have been worried. I’d have thought “these could be violent”. But actually having [schizophrenia] myself and knowing it doesn’t really make you violent I can cope... they’re all nice people’ (Paul).
In contrast to other participants, one person rejected the label of schizophrenia and described a lack of group identity:
 ‘I went to [the mental health charity] Mind and there was supposed to be people there who were schizophrenics, but they were so different from me and their symptoms were different from mine. I didn’t fit into their category at all’ (Janet).
However, this did not mean that the person lacked ‘insight’ or refused the need for treatment: 
‘I knew I was quite ill... I did want them to give me something to make me feel a bit better... I know you’ve got to... put a name to a certain condition. I can accept that I’ve got mental health problems, but I will not accept that I’m schizophrenic’ (Janet)
This seemed linked to her fears of the image of schizophrenia, leaving her in the difficult position of needing a diagnosis to access treatment, but wanting to avoid diagnosis due to self-stigma.


Discussion


Participants were seen to describe constant social and psychological processes involved in avoiding schizophrenia, trying to understand it, managing the stigma surrounding it, and becoming it (i.e. ‘schizophrenic’).

The findings reflect and expand on the literature. Participants described the contradictory nature of being diagnosed with schizophrenia as a means of access v. a source of stigma and social exclusion,1,2 and reported being subject especially to perceptions of dangerousness and incompetence.10,11 The findings also reflect those found elsewhere that the diagnostic label of schizophrenia, in part reflected in media reporting, is associated with greater stigma than other psychiatric diagnoses.12 Participants also appeared to experience ‘benevolent stigma’, a reportedly common attitude towards people with other mental health problems but not specifically schizophrenia.13 There was an indication that professionals withheld detailed diagnostic information from participants,7,14 contributing to their anticipation of negative reactions, which resulted in diagnostic secrecy and decreased social relationships.12,15,16

Interestingly, there was a distinct lack of self-stigma in participants’ statements; all but one set concealment in the context of anticipating stigmatising reactions from others, rather than believing themselves to be in some way defective. This contradicts long-standing theories that represent self-stigma as inherent for individuals labelled as ‘mentally ill’.4 This finding draws on more recent literature on the apparent paradox of stigma as potentially resulting in a significant loss of self-esteem for some, whereas others may be energised or righteously angry about stigma and resist or denounce it.17

An important finding was that avoidance preceded diagnosis; participants hid their experiences to avoid being labelled with schizophrenia, consequently receiving inappropriate treatments. This highlights participants’ determination to evade the specific diagnosis of schizophrenia to protect themselves from stigma at the price of receiving more appropriate treatment. Previous research suggests individuals with longer duration of untreated psychosis have worse clinical outcomes regarding symptom severity and social disadvantage.18 Therefore, avoidance must be overcome to promote better outcomes for individuals.

Following diagnosis, professionals may have used alternative labels such as ‘psychosis’ to limit the impact of the unique stigma associated with schizophrenia. However, this led to some participants not knowing their diagnosis and appeared to maintain a lack of understanding of schizophrenia, both stemming from and perpetuating stigma related to the diagnosis.19 Consistent with existing literature, participants mostly understood schizophrenia as a biological illness, which reduced hope for change and increased reliance on medication as well as a sense of passivity.20 Professionals may need to take the lead and break their ‘conspiracy of silence’ surrounding schizophrenia to allow the public and those with the diagnosis to follow.7

Participants’ group identity appeared generally to relate to acceptance of diagnosis and even self-labelling as ‘schizophrenic’, in line with the ‘I am’ nature of the diagnosis.21 The present research suggests a dilemma whereby individuals required their diagnosis to access support and gain acknowledgement of their experiences, but struggled with their sense of self and prospect of being ‘schizophrenic’ permanently. As a result, a compromised identity incorporating the old self and the new ‘schizophrenic’ self was needed to manage stigma and maintain normality, while also accepting their diagnosis.

Limitations


This study relied on retrospective accounts at different time periods following diagnosis, possibly representing different stages of coming to terms with it. Those who received their diagnosis more recently may have had a different experience to those who were diagnosed many years ago, although this was not evident in the results.

Implications

The saliency of stigma in participants’ lives despite the alleviation of symptoms related to their diagnosis signifies the personal and social burden of being labelled with schizophrenia. It would appear that one response by professionals is to resort to alternative terms; however, this may lead to confusion. Professionals have an important role in addressing stigma associated with schizophrenia beyond psychoeducation and focusing on symptomatology and medication. Clinical practice and anti-stigma campaigns may benefit from focusing on the psychosocial causes of a person’s difficulties, and contextualising and making sense of people’s experiences rather than focusing on a biological approach. Due to the nature of stigma, it is unlikely that service users will bring it directly to the attention of professionals. Therefore, professionals should specifically ask about experiences of stigma, the extent of social networks, self-image and ‘new’ identity post-diagnosis.22

Further investigations focusing on the issues raised in the present study may greatly benefit clinical practice with individuals deemed to meet the diagnostic criteria for schizophrenia, including the use and communication of the diagnosis and the associated stigma which may have an impact on service users’ lives.


This is an open-access article published by the Royal College of Psychiatrists and distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.


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