Identity,community and care in online accounts of hereditary colorectal cancer syndrome

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically “at risk” are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing on online bloggers’ accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk.     

Extraordinary Care for Extraordinary Conditions: Constructing Parental Care for Serious Mental Illness in Japan

This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the “extraordinary condition” of schizophrenia to discuss “extraordinary care,” which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.     

Identity,Subjectivity, and Disorders of Self in Psychosis

Alterations in self-experience are increasingly attended to as relevant and important aspects of schizophrenia, and psychosis more broadly, through a burgeoning self-disorders (SD) literature. At the same time, issues of self, subject, and subjectivity within schizophrenia-spectrum illnesses have also gained attention from researchers across the social sciences and humanities, and from ethnographic research especially. This paper examines the subjective experience of disruptions in self-identity within a cohort of first episode psychosis (FEP) service users, critically engaging with the SD literature and bringing it into conversation with social sciences and humanities scholarship on self and schizophrenia. Drawing findings from an ongoing ethnographic study of young peoples’ experiences with psychosis, we explore meanings of mental distress relating to psychotic episodes and attend to issues of self, identity, and subjectivity. We critique the division between “normal” and “pathological” self-experience that is endorsed within the SD literature, arguing against the notion that fragmentation of self-experience in schizophrenia-spectrum illnesses is indicative of psychopathology. We highlight how experiences categorized as psychosis are also important and complete aspects of one’s social world and inner life and explore the ways in which at least some aspects of disruptions of self-identity stem from clinical situations themselves—in particular, from asymmetries of power within the mental health system. Relating our findings to feminist, postcolonial, and disability studies’ approaches to the “self,” we emphasize the complex interplay between interpersonal, cultural, and structural aspects of self-experience within FEP.

     

Age,gender and slavery in and out of the Persian harem: a different story

Despite the ever-growing literature on slavery and that of oppression of women in the harem and the expanding material on memories and autobiographies, it is difficult to find room to valorize experiences of those women who do not use writing as a medium of communication. Recollected memories of life histories of women are still hard to contextualize within mainstream feminist epistemology. It is the contention of this article that academic universal categories, formulated by Anglophone Western theorists, do not help to explain the lived experiences of most women the world over. Drawing on subjective experiences of one woman and autobiographical memories of the author, this article will argue that well-known categories such as “black” and “slave girl” fail to explain the remembered life of one “black” “harem slave girl”, who felt empowered by her harem years.     

Si Dios Quiere: Hispanic families' experiences of caring for a seriously mentally ill family member

Among Hispanics, the family is viewed as the primary care giver for seriously mentally ill family members. This paper reports on a study of minority families' conceptions of serious mental illness, of their interaction with mental health resources, and on the burdens experienced by families in caring for a seriously mentally ill family member. The focus of this paper is on Hispanic families in New Jersey, with some comparative data from other ethnic group families. Families' conceptions of serious mental illness are explored and analyzed to demonstrate the importance of concepts of nervios and fallo mental in shaping families' responses to their ill family member. Social support systems for families are also explored with particular attention to the role of religious institutions and religious healing as a major source of solace.     

Killing pigs and talking to nonna: “wog” versus “cosmopolitan” Italianitá among second-generation Italian-Australians and the role of family

This paper extends the literature on second-generation migrants by examining the construction of ethnicity (Italianitá) over time. We compare two cohorts of second-generation Italian-Australians: the post-World War II cohort and the post-1980s cohort. Ethnographic data for this research were collected with second-generation Italian-Australians in Perth over a thirty-year period. Our findings highlight important differences between these two groups based on socio-historical context and transnational experiences. Informants draw on these differences to distinguish between “wog” vs. “cosmopolitan” forms of Italianitá. While these contrasting identities highlight cultural discontinuities between cohorts, both groups construct their ethnicity through the trope of the Italian migrant family. Employing the theoretical notions of “intimate culture” and “familial habitus” we theorize family as integral to conceptualizations of ethnic field and show how it has been overlooked and devalued in analyses of diaspora politics and identity.     

A critique of the “ultra‐high risk” and “transition” paradigm

The transdiagnostic expression of psychotic experiences in common mental disorder (anxiety/depression/substance use disorder) is associated with a poorer prognosis, and a small minority of people may indeed develop a clinical picture that meets criteria for schizophrenia. However, it appears neither useful nor valid to observe early states of multidimensional psychopathology in young people through the “schizo”‐prism, and apply misleadingly simple, unnecessary and inefficient binary concepts of “risk” and “transition”. A review of the “ultra‐high risk” (UHR) or “clinical high risk” (CHR) literature indicates that UHR/CHR samples are highly heterogeneous and represent individuals diagnosed with common mental disorder (anxiety/depression/substance use disorder) and a degree of psychotic experiences. Epidemiological research has shown that psychotic experiences are a (possibly non‐causal) marker of the severity of multidimensional psychopathology, driving poor outcome, yet notions of “risk” and “transition” in UHR/CHR research are restrictively defined on the basis of positive psychotic phenomena alone, ignoring how baseline differences in multidimensional psychopathology may differentially impact course and outcome. The concepts of “risk” and “transition” in UHR/CHR research are measured on the same dimensional scale, yet are used to produce artificial diagnostic shifts. In fact, “transition” in UHR/CHR research occurs mainly as a function of variable sample enrichment strategies rather than the UHR/CHR “criteria” themselves. Furthermore, transition rates in UHR/CHR research are inflated as they do not exclude false positives associated with the natural fluctuation of dimensional expression of psychosis. Biological associations with “transition” thus likely represent false positive findings, as was the initial claim of strong effects of omega‐3 polyunsatured fatty acids in UHR samples. A large body of UHR/CHR intervention research has focused on the questionable outcome of “transition”, which shows lack of correlation with functional outcome. It may be more productive to consider the full range of person‐specific psychopathology in all young individuals who seek help for mental health problems, instead of “policing” youngsters for the transdiagnostic dimension of psychosis. Instead of the relatively inefficient medical high‐risk approach, a public health perspective, focusing on improved access to a low‐stigma, high‐hope, small scale and youth‐specific environment with acceptable language and interventions may represent a more useful and efficient strategy.     

Psychosis as a transdiagnostic and extended phenotype in the general population

A large body of research indicates that weak expressions of positive psychotic symptoms (“psychotic experiences”) can be measured in the general population, and likely represent the behavioural manifestation of distributed multifactorial (genetic and non‐genetic) risk for psychosis. Psychotic experiences are a transdiagnostic phenomenon: the majority of individuals with these experiences have a diagnosis of non‐psychotic disorder, particularly common mental disorder, in which psychotic experiences predict greater illness severity and poorer treatment response. Some of the people with common mental disorder and psychotic experiences will present to mental health services meeting criteria for “clinical high risk”. Treatment of the transdiagnostic dimension of psychosis in individuals with common mental disorder who meet “clinical high risk” criteria thus may improve outcome (which cannot be interpreted as prevention of “schizophrenia”). Subthreshold psychotic experiences are transitory in about 80% of individuals, while around 20% go on to develop persistent psychotic experiences and 7% a psychotic disorder, with an annual transition rate of 0.5‐1%. Persistence is associated, on the one hand, with environmental exposures, particularly childhood trauma, and, on the other, with network‐type dynamic interactions between psychotic experiences themselves (e.g., interactions between hallucinatory experiences and delusional ideation) and between symptom dimensions (e.g., interactions between affective symptoms and psychotic experiences, or interactions between subthreshold negative symptoms and psychotic experiences). The study of psychotic experiences is helping to elucidate the mechanisms by which environmental and genetic influences shape the transdiagnostic expression of psychosis proneness, that is mostly transitory but may first become persistent over time and eventually give rise to transition to a psychotic disorder.     

Mental Health: The Search for a Definition

Various attempts to define the concept of “mental health” are examined. Value judgments permeate much mental health literature. Their use militates against obtaining an objective definition, capable of universal application. The acceptance of a definition including a value judgment implies taking an attitude toward a particular society and its social ideals.Present limits of competence only allow us to describe “mental health” conceptually. Such “untechnical” proposals are liable to be confused with “technical” (“scientific”) propositions. Multiple criteria are likely to be helpful in improving our concept of “mental health”.The intrusion of morals into the world of health is discussed as part of the contemporary intellectual dilemma of determined human behaviour versus human responsibility and the reality of moral values.It is suggested that “mental health” might consist simply of an individual''s possession of insight into his own personality, combined with an honest recognition and acceptance of his condition.     

Ecosystem Health: Coming of Age in Professional Curriculum

The evolution of a new paradigm, ecosystem health, began with the coining of the term “ecosystem medicine” in the late 1970 s. From its humble roots, it has matured into a dynamic area of study with concepts relevant to every facet of life. Increasingly, ecosystem health principles are flourishing in professional curricula while its tenets transcend disciplinary boundaries. This article is part of the ongoing process, one in which shared experiences highlight new challenges and opportunities.     

Uses and abuses of recovery: implementing recovery‐oriented practices in mental health systems

An understanding of recovery as a personal and subjective experience has emerged within mental health systems. This meaning of recovery now underpins mental health policy in many countries. Developing a focus on this type of recovery will involve transformation within mental health systems. Human systems do not easily transform. In this paper, we identify seven mis‐uses (“abuses”) of the concept of recovery: recovery is the latest model; recovery does not apply to “my” patients; services can make people recover through effective treatment; compulsory detention and treatment aid recovery; a recovery orientation means closing services; recovery is about making people independent and normal; and contributing to society happens only after the person is recovered. We then identify ten empirically‐validated interventions which support recovery, by targeting key recovery processes of connectedness, hope, identity, meaning and empowerment (the CHIME framework). The ten interventions are peer support workers, advance directives, wellness recovery action planning, illness management and recovery, REFOCUS, strengths model, recovery colleges or recovery education programs, individual placement and support, supported housing, and mental health trialogues. Finally, three scientific challenges are identified: broadening cultural understandings of recovery, implementing organizational transformation, and promoting citizenship.     

Childhood Environment and Mental Wellbeing at Age 60-64 Years: Prospective Evidence from the MRC National Survey of Health and Development

Background

Mental wellbeing, conceptualised as positive affect, life satisfaction and realisation of needs that contribute to psychological growth, captures more than the absence of mental ill health. Several nations now aim to monitor and improve mental wellbeing. Whilst many studies document associations between adverse childhood experiences and mental disorders in adulthood, possible links between childhood experiences and adult mental wellbeing have so far received less attention.

Methods

Using data from 1976 men and women in the MRC National Survey for Health and Development, we investigated prospective associations between childhood socioeconomic and psychosocial environments and the Warwick Edinburgh Mental Wellbeing Scale, designed to capture both hedonic and eudaimonic facets of wellbeing, at age 60-64.

Results

Whilst there was no evidence that childhood socioeconomic circumstances were related to later wellbeing independently of other childhood experiences, elements of childrearing and parenting, parental health and adjustment, and childhood illness were related. More advantaged socioeconomic position was associated with greater wellbeing but this did not explain the links between these childhood exposures and adult wellbeing, suggesting alternative explanatory pathways should be considered.

Conclusions

Childhood illness and family psychosocial environment are associated with mental wellbeing in early older age, with effects sizes that are larger or comparable to socioeconomic circumstances in adulthood. Initiatives to improve the nation’s mental wellbeing that include programmes targeted to supporting families and children may additionally have benefits that continue into older age.     

Geometric versus topological clustering: An insight into conformation mapping

Clustering molecular conformations into “families” is a common procedure in conformational analysis of molecular systems. An implicit assumption which often underlies this clustering approach is that the resulting geometric families reflect the energetic structure of the system's potential energy surface. In a broader context we address the question whether structural similarity is correlated with energy basins, i.e., whether conformations that belong to the same energy basin are also geometrically similar. “Topological mapping” and principal coordinate projections are used here to address this question and to assess the quality of the “family clustering” procedure. Applying the analysis to a small tetrapeptide it was found that the general correlation that exists between energy basins and structural similarity is not absolute. Clusters generated by the geometric “family clustering” procedure do not always reflect the underlying energy basins. In particular it was found that the “family tree” that is generated by the “family clustering” procedure is completely inconsistent with its real topological counterpart, the “disconnectivity” graph of this system. It is also demonstrated that principal coordinate analysis is a powerful visualization technique which, at least for this system, works better when distances are measured in dihedral angle space rather than in cartesian space. © 1997 Wiley-Liss, Inc.     

Disability and <Emphasis Type="Italic">Depression</Emphasis>

Here, Ann Cvetkovich, interviewed by Abby Wilkerson, brings Cvetkovich’s influential cultural studies analysis of depression explicitly into conversation with disability studies. Cvetkovich understands “feeling bad” (a term she prefers to “depression”) as a defining affective state under neoliberalism. Drawing on a distinctive historical/cultural archive, she challenges the atomism of the neoliberal medical model that frames depression and affective distress more generally as the result of faulty brain chemistry—individual organisms gone awry. Instead, she traces these common experiences to sociopolitical phenomena ranging from current neoliberal demands for productivity as exemplified in university life, to histories of colonization, slavery, and displacement. The conversation considers the value of disability frameworks for understanding mental health diagnoses and the intersections of social institutions, bodily practices, and everyday affective life.     

Chronotype,gender and general health

Background: Light–dark alternation has always been the strongest external circadian “zeitgeber” for humans. Due to its growing technological preference, our society is quickly transforming toward a progressive “eveningness” (E), with consequences on personal circadian preference (chronotype), depending on gender as well. The aim of this study was to review the available evidence of possible relationships between chronotype and gender, with relevance on disturbances that could negatively impact general health, including daily life aspects. Methods: Electronic searches of the published literature were performed in the databases MEDLINE and Web of Science, by using the Medical Subject Heading (MeSH), when available, or other specific keywords. Results: Results were grouped into four general areas, i.e. (a) “General and Cardiovascular Issues”, (b) “Psychological and Psychopathological Issues”, (c) “Sleep and Sleep-Related Issues” and (d) “School and School-Related Issues”. (a) E is associated with unhealthy and dietary habits, smoking and alcohol drinking (in younger subjects) and, in adults, with diabetes and metabolic syndrome; (b) E is associated with impulsivity and anger, depression, anxiety disorders and nightmares (especially in women), risk taking behavior, use of alcohol, coffee and stimulants, psychopathology and personality traits; (c) E has been associated, especially in young subjects, with later bedtime and wake-up time, irregular sleep–wake schedule, subjective poor sleep, school performance and motivation, health-related quality of life; (d) E was associated with lowest mood and lower overall grade point average (especially for women). Conclusions: Eveningness may impact general health, either physical or mental, sleep, school results and achievements, especially in younger age and in women. The role of family support is crucial, and parents should be deeply informed that abuse of technological devices during night hours may lead to the immature adjustment function of children’s endogenous circadian pacemakers.     

The genetics of human fatness

Studies on the quantitative genetics of fatness are reviewed in the framework of the twin, adoption-cohabitation, and familial aggregation methodologies. Low to moderate heritability of adult static fatness is evident. Somewhat less than one-third of the variation appears ascribable to genetic causes. Genetic factors may play a greater role in childhood fatness, especially during adolescence. Comparison of studies is made difficult by many methodological shortcomings. These include a rarity of studies of adult first-degree relatives “adulthood being the period in which fatness has the greatest health consequences”, different criteria of body fatness among studies, a lack of a full variety of genetic and adoptive relationships, inadequate sample sizes “especially in twin studies”, and unreported precision of fatness variables. Fatness change in the life cycle and the anatomical placement of fat are important modifiers of the health effects of obesity. Yet the genetics of these characteristics are little understood. Innovative statistical methods and study designs including path analysis, the family set method, and families of monozygous twins need wider application to the genetics of human fatness.     

The hall of dragon metamorphoses: A unique,indigenous asylum for chronic mental patients in Taiwan

This paper describes the spontaneous rise of an indigenous asylum for the chronic mentally ill, called Lung Hwa Tang (The Hall of Dragon Metamorphoses), in contemporary Taiwan. Sociocultural factors relevant to the asylum, including the roles played by Chinese families and the current situation of mental health care in Taiwanese communities, are discussed. Despite its detrimental effect on patients, this asylum stands for an alternative mental health care system in the folk sector; it reflects a great demand from the communities for access to modern mental health services, the development of which have been very slow and inadequate in the past four decades in this rapidly developing country.     

Becoming voluntarily childless: An exploratory study in a Scottish city

Abstract

This paper looks at motives that inform the decision to remain voluntarily childless. It is assumed that voluntary childlessness is not a pathological condition nor is it determined by specific social situations. Situations provide the context within which motives emerge, in the case of voluntary childlessness providing individuals or couples with the opportunity to consider unconventional interpretations of family life that may eventually lead to its rejection. Individuals who become childless prior to finding a “partner” tend to come from families which deviated from the nuclear ideal and to reject parenthood. Those whose decision emerges after a “partnership” has been formed tend to have created alternative life styles and wish to protect the advantages of living without children. It is tentatively concluded that the proportion of couples remaining childless will increase.