This paper describes a pervasive form of psychological distress occurring among people undergoing a sudden and acute collapse of faith in the teachings of the Church of Jesus Christ of Latter-day Saints (aka LDS, or Mormon Church). Drawing on 18 months of fieldwork in Utah, I trace the cultural–historical etiology of this unique form of psycho-existential trauma, focusing on ex-Mormons’ narratives of ‘world collapse’—in which the all-encompassing symbolic-existential framework of reality once provided by religion disintegrated once they lost faith in the Mormon Church. Although marked by symptoms resembling depression, anxiety, dissociation and paranoia, this condition is however unlike mental health disorders described in psychiatric diagnostic manuals, and has thus been largely overlooked within the mental health professions. I thereby discuss the extent to which the distress of religious disenchantment constitutes a unique form of ‘cultural syndrome’ (Hinton and Lewis-Fernandez in Cult Med Psychiatry 34(2):209–218, 2010), reflective of complex historical, cultural, and religious transformations occurring within contemporary Utah Mormonism.
The dramatic increase in the consumption of antidepressants is one indicator, among others, of the contemporary cerebralization of human affliction. This process has been led by expert systems, creating new biosocialities or neurosocialities, and new models of self as well: the neural self. While some research minimizes the neuro-colonization of the self and its impact on lay knowledge systems, here I argue that synergy between neuropolitics and figures characteristic of neoliberal governamentality such as the “entrepreneur of oneself” can give rise to an interiorized, cerebralized, centripetal, inwardly-oriented self. This paper, based on long-term fieldwork among consumers of antidepressants in Catalonia, analyses the emergence of neuronarratives of affliction (NoAs). NoAs privilege neurochemical dysfunction as the source of distress, shortcircuiting an awareness of the social sources of suffering while at the same time obscuring the fact of this concealment. NoAs transform the self into structure and reduce the social world to event.
This paper attends to the sociality available in the clozapine clinic regimen and suggests that the social dimensions of clozapine treatment may be as important as the biochemical efficacy of clozapine. The clozapine clinic is where people diagnosed with chronic schizophrenia who take the antipsychotic clozapine go for routine monitoring of clozapine side effects, particularly haematological effects. Psychopharmaceutical treatments are often criticized for being reductionistic and dehumanizing, but clozapine clinics offer increased clinical contact in the age of deinstitutionalization. The inadvertent social benefits of biomedically reductive treatments have not previously been ethnographically attended to in the clozapine-only context. Drawing on 18 months of ethnographic fieldwork with 43 clozapine clients and 16 clinical caregivers in two clozapine clinics in the United Kingdom in Australia, I argue that routine clinical attachments in the clozapine clinic can serve a therapeutic role in terms of providing opportunities for clients’ health agency, social competence and accountability. This socio-therapeutic quality appeared to be available because the clinical emphasis was not on psychotic illness. It depended, however, on reliable and familiar social exchanges inside the clinic and on the predictability of clinical activity. The importance of unemotional but unfailing relationships and rhythms in the clozapine clinic context echoes cross-cultural findings about how schizophrenia is managed more productively in environments that invite more neutral and equal social exchanges.
‘It’s Always About the Eating Disorder’: Finding the Person Through Recovery-Oriented Practice for Bulimia
Kate Churruca, Jane M. Ussher, Janette Perz & Frances Rapport
Bulimia is an eating disorder characterised primarily by binging and ‘inappropriate’ compensatory behaviours, such as purging or excessive exercise. Many individuals with bulimia experience chronic disordered eating, dissatisfaction with treatment, and difficulty establishing a ‘new life’. Recovery-oriented practice, which focuses holistically on the person and their own aspirations for treatment, has recently been advocated in the treatment of eating disorders in Australia and other countries. However, questions have been raised about how this practice might be integrated into existing treatment approaches. Taking a social constructionist approach and using a case study of one woman’s account, together with literature on patients’ treatment experiences, we examined recovery from bulimia. Three themes were identified: bulimia was constructed as ‘consuming one’s life’, an experience protracted through treatment (‘treatment and becoming the eating disorder’), which makes life ‘beyond treatment and attempting to live without bulimia’ challenging. Based on this analysis, we argue that recovery-oriented practice, while seemingly commensurate with patients’ needs, may be challenged by long-standing meanings of mental illness and experience of bulimia specifically.
The outbreak of COVID-19 coronavirus and its impact on global mental health (open access)
Julio Torales, Marcelo O’Higgins, João Mauricio Castaldelli-Maia, Antonio Ventriglio
Background: The current outbreak of COVID-19 coronavirus infection among humans in Wuhan (China) and its spreading around the globe is heavily impacting on the global health and mental health. Despite all resources employed to counteract the spreading of the virus, additional global strategies are needed to handle the related mental health issues. Methods: Published articles concerning mental health related to the COVID-19 outbreak and other previous global infections have been considered and reviewed. Comments: This outbreak is leading to additional health problems such as stress, anxiety, depressive symptoms, insomnia, denial, anger and fear globally. Collective concerns influence daily behaviors, economy, prevention strategies and decision-making from policy makers, health organizations and medical centers, which can weaken strategies of COVID-19 control and lead to more morbidity and mental health needs at global level.
Psychotic experiences and psychiatric treatment utilization in Buenos Aires
Hans Oh,Ai Koyanagi, Jordan E DeVylder, Eduardo A Leiderman
Objective: Psychotic experiences are associated with psychiatric treatment utilization, though findings have not been entirely consistent. Furthermore, it is unclear how psychotic experiences relate to specific types of psychiatric treatment, and whether mental illness moderates these associations. Methods: In total, 1,036 adult residents of Buenos Aires were recruited through convenience sampling in public places. Multivariable logistic regression models examined the associations between psychotic experiences and psychiatric treatment, adjusted for age, sex and education. Analyses were then stratified by diagnosis of mental illness. Results: Approximately 17.95% (N = 186) of the sample reported at least one psychotic experience over the past week, about 22.39% (N = 232) of the sample was receiving some psychiatric or psychological treatment and 8.59% (N = 89) was receiving psychopharmacological treatment. In the total sample, psychotic experiences were associated with greater odds of being in psychiatric/psychological treatment (adjusted odds ratio (AOR): 1.52; 95% confidence interval (CI): 1.05–2.21) and psychopharmacological treatment (AOR: 2.49; 95% CI: 1.52–4.09), adjusted for age, sex and education. Mental illness did not moderate the association between psychotic experiences and psychiatric/psychological treatment, but did moderate the association between psychotic experiences and psychopharmacological treatment. Among people with mental disorders, psychotic experiences were associated with greater odds of receiving psychopharmacological treatment (AOR: 14.63; 95% CI: 1.73–123.45) versus people without mental disorders (AOR: 1.75; 95% CI: 0.98–3.15). Conclusion: Psychotic experiences are associated with psychiatric treatment utilization, particularly psychopharmacological treatment among people with a co-occurring mental illnesses. Translational research should explore the utility of psychosis screens in assessing need for medication or clinical responsiveness to medications.
Role of traditional healers in the pathway to care of patients with schizophrenia in Egypt
Mona Ibrahim Awaad, Nesreen Mohsen Ibrahim, Rehab Mohamed Naguib, Sherien Ahmed Khalil, Mahmoud Elhabiby, Zainab Khaled Mohamed
Background: Traditional healers are considered one of the important stages in the pathway to care of schizophrenia patients because of the confidence in the system, affordability and accessibility of the service, exposing patients to hazardous management, delay in seeking psychiatric help and bad prognosis. Aim: To assess the pathway to care of schizophrenia patients and role of traditional healers into it, the sociodemographic and clinical correlates of those patients. Methods: We assessed 232 patients with schizophrenia after confirmation of diagnosis with Structured Clinical Interview for DSM-IV Axis I Disorder (SCID-I) research version using a questionnaire designed by authors to assess help seeking behavior in schizophrenia patients and its sociodemographic and clinical correlates. Positive and Negative Syndrome Scale to identify the presence and severity of symptoms. Results: A total of 41.8% sought traditional healers first, 58.1% sought a psychiatric consultation first, main symptoms related to traditional healers seeking were hallucinations in 51.5%, delusions 29.9%, 9.28% bizarre behavior and 9.28% formal though disorder. Main causes of traditional healers’ preference were society acceptance 30.39%, affordability 24.74% and accessibility 16.49%. Conclusion:
This study shows that a significant percentage of the patients suffering from schizophrenia prefer to approach faith healers first due to their own beliefs, society acceptance, affordability and easy accessibility.
The impact of mental health diagnoses on perceptions of risk of criminality
Jessica L Garcia, Adanna J Johnson, Marianna E Carlucci, Rachel L Grover
Background: Previous research has examined the relation between mental illness (MI) and perceptions of dangerousness, but less research has focused on its relation to perceived risk of criminality. Individuals with MI are perceived to be more dangerous than those without, and individuals with schizophrenia or substance abuse diagnoses are viewed as being more dangerous. Research also supports that race of individuals with MI plays an important role in the conceptualization and experience of stigma. Aims: The current study investigated the relation between MI, perceived criminality and race of diagnosed individuals. Method: Two hundred ninety participants were randomly assigned to read one of the four vignettes and answer a series of questions. The first three vignettes depicted someone with MI (schizophrenia, depression or alcohol dependency), while the fourth vignette served as a control. Participants were asked to indicate likelihood of committing a future crime, severity of the future crime and the person’s potential for rehabilitation. Levels of sympathy and trust, as well as perceived race of the person, were also measured. Results: Presence of MI was a significant predictor where MI elicited higher levels of perceived risk of criminality. The remaining predictor variables (type of MI, familiarity with MI and criminality and perceived race) were not significant predictors. Exploratory analyses revealed the schizophrenia and alcohol dependency conditions elicited higher levels of perceived severity of future crimes. Perceived MI severity and likelihood of rehabilitation were all significantly correlated with perceived risk of criminality. Conclusion:
Presence of MI appears to be the most important in influencing participant attitudes about perceived risk of criminality, though type of MI may influence beliefs about severity of future crimes. The impact of race could not be examined but should be examined in future studies.
In twenty-first century US education, laboratory metaphors are used to frame school governance and classroom practices. To explore how non-laboratory and non-traditional laboratory settings are framed as sites for experimentation, science and technology studies (STS) has two parallel trajectories for conceptualizing the laboratorization of society: the literal implantation of laboratories into physical locations and the metaphorical application that looks at the world as if it were a laboratory, that is from a ‘laboratory perspective’. Concerning the latter, the laboratory perspective offers STS ways to study: (1) how laboratory metaphors frame social and cultural understandings of scientific knowledge production; (2) the work laboratory metaphors do when used to describe non-laboratory settings. Fieldwork in two classrooms reveals how laboratory metaphors reproduce different but coexisting images of scientific knowledge production. There is an ideal image of laboratories as orderly, with a controlled amount of outside influence. This image frames schools as places with which to experiment from the top-down. There is a more empirical image of laboratories as socially and culturally structured. This image frames schools as places to conduct experiments from the bottom-up. Though each framing positions teachers and students differently, both are useful for characterizing the dynamics of US education.
Marketing Experimental Stem Cell Therapies in the UK: Biomedical Lifestyle Products and the Promise of Regenerative Medicine in the Digital Era (open access)
Sonja Erikainen, Anna Couturier & Sarah Chan
Stem cell research has attracted much public and biomedical anticipation centred on the possibility of using stem cells to treat various diseases and conditions, but the number of evidence-based therapies is currently limited. Numerous commercial direct-to-consumer (DTC) businesses are nonetheless marketing experimental stem cell therapies online for myriad medical conditions and aesthetic ailments, which has attracted critique due to safety and efficacy concerns. Existing research has largely focused on the problem of unproven therapies and regulatory pathways for addressing it. The proliferation of these experimental products must also be examined, however, in the broader socio-technological context of consumer culture and changing practices of knowledge-making in the digital era. DTC stem cell therapies have emerged as a new biomedical ‘lifestyle’ product that blurs the boundaries between ‘science,’ ‘medicine,’ and ‘consumer culture.’ In using, conceptualising and marketing stem cells, commercial businesses build on and commercially co-opt alternative epistemic and ontological frames that challenge scientific medicine. They advance promissory narratives about their potential that tap on cultural aspirations around the future of medicine and health. This is key, not only for understanding how and why these therapies have proliferated but also in conceptualising what the ‘problem’ around them actually is.
Breaking Bad with the Participatory Turn? Accelerating Time and Intensifying Value in Participatory Experiments
Pierre Delvenne & Hadrien Macq
Science and technology studies (STS) scholars have long advocated a ‘participatory turn’ in science, technology and innovation. Decisively informed by STS, participatory experiments across the world have sought to overcome the limitations of technocratic approaches and traditional innovation processes, to allow for new forms of democratic engagement. Yet the interplay between modes of participatory experiments and their wider political-economic ordering is significantly evolving. Alongside traditional deliberative experiments of the so-called ‘participatory turn,’ participation is now also organized in various collective experiments during which technologies are tested, e.g. in ‘living-labs’ or ‘hackathons.’ Currently, participatory experiments are shaped by a double trend of accelerating time and intensifying value; they are now often organized as intense events seeking to extract as much value as possible from participants. This trend indicates a broader shift in the way participatory experiments are imagined, designed and implemented, away from participation in decision-making to participation in innovation-making, as well as a shift from civic values to productivist values with the pervasive expectation that publics should increasingly act as innovators and entrepreneurs. The relative abandonment of democratization warrants STS co-productionist analyses that question the values and objectives of participatory experiments in addition to their formats, issues, and publics.
London’s fatbergs and affective infrastructuring
This exploratory article considers the accumulations of fat and other materials in London’s sewerage system – known as fatbergs in the UK – in terms of the processes of infrastructuring. In particular, drawing on a range of media, including a major museum exhibition, numerous newspaper and online articles, and a TV documentary, this article analyses how London’s fatbergs have been affectively enacted. The affects identified include: disgust in the composition of the fatberg, pride in the London-ness of the fatbergs, admiration at the ‘flushers’ courage, generic horror at the sewers, shame in the flushing of wet wipes, and anxiety about microbial threats. Such enactments simultaneously perform the fatbergs, the sewerage infrastructure, and the public audiences, through what we can call ‘affective infrastructuring’. This extends the analysis of infrastructuring to encompass the ways in which public audiences are affectively ‘made’. The article also suggests that the various affective enactments of the fatberg cumulatively perform London as spatially uniform and the sewerage system as temporally naturalized. A critical implication of this is an effacement of, on the one hand, class and cultural difference and, on the other, historical specificity.
In smell’s shadow: Materials and politics at the edge of perception (open access)
This article examines the politics of smell at the edge of perception. In January 2014, the municipal water supply of Charleston, West Virginia was contaminated by an under-characterized chemical, crude MCHM. Even when instrumental measurements no longer detected the chemical, people continued to smell its licorice-like odor. In a space where nothing was certain, smell became the only indicator of potential harm. Officials responded by commissioning state-funded sensory testing of crude MCHM to determine its sensory threshold. Via the critical passage point of sensory science, some instances of embodied attunement were allowed to enter into the evidentiary regimes of perception, while other, similarly trained moments of attunement were excluded from the process. This, I show, produced knowledge about the spilled chemical that maintained the systems that contributed to the spill in the first place. Drawing on new materialist thought, I riff on biology and ‘transduce’ the ephemeral phenomena of smelling crude MCHM into a new medium: Rather than thinking of smell as a volatile molecular material (an odorant), I show that consideration of smell as a manipulable object that one can imagine as having tangible substance and shape offers a way to experiment with disciplinary forms. I suggest an alternate future, where sensory science acts to record sensory labor that produces facts about collective experience that cannot (easily) travel through current systems, a process that is one possible way of beginning to unravel entrenched systems of toxic harm.
This article provides an experience-oriented relational account that goes beyond a human control of the world. Rather than working with the notion of intersubjectivity (commonly evoked in sensory STS, and still conserving the subject/object opposition), the article reports on how the sense of smell affords a rethinking of our relationship with the world. It does so by challenging the assumption of olfactory ineffability as it turns to a place whose inhabitants speak about smell as a part of their everyday affairs: a laboratory of olfactory psychophysics. There, we attend to a multimodal, embodied language that participates in preparing, running and analyzing scientific experiments. While Western languages are short on specialized vocabulary for expressing olfactory qualities and it feels difficult to talk about smell, laboratory events manifest smell language in its enmeshing with the sensory realm and the world. Noticing these ties destabilizes the idea of agential subject, highlighting instead our pre-intentional sensibility, in its connection with the world. A sister article on ‘troubles with the Object’ (Alač, 2020) continues to argue that the notion of intersubjectivity is overly narrow, highlighting our immersion in the world (rather than assuming our dominance of it).
This article takes advantage of the sense of smell’s peculiar spatiality to reflect on how we may render our engagement with the world other than through manipulating well-defined objects. The lived spatiality associated with olfaction is not reducible to the known parameters of ‘distant observation’ and ‘reaching toward’, familiar from the visual and tactile modalities. Instead, olfactory spatiality is one of immersion: Odors ask us to give up our dominance while we continue to be involved. The article attends to this immersive quality of the sense of smell by tracing multimodal, embodied qualities of mundane events in a laboratory of olfactory psychophysics, also considering the spatial organization of laboratory chambers, and how researchers fashion their bodies while they recognize the frailty of their enterprise. To engage these complexities, the article illustrates an exercise in experimenting with re-production, re-enactment and re-experiencing. While the exercise functions as a reflection on how to orient a laboratory study to non-ocular dimensions of science, the article, in parallel, enquires into semiotic articulations of smell experiences. By pointing out how smell language, rather than being ‘mute’, speaks the spatial quality of our olfactory experiences, it concludes the argument against the olfactory ineffability, initiated in the sister essay on ‘troubles with the Subject’.
This paper will consider the history and politics of autoethnography in relation to the activist scholarship of Mad Studies. As part of ethnographic research about ‘recovery in/from serious mental health problems’ in the UK, I accessed an NHS community “arts for mental health” service as a service-user would do, situating this data in broader socio-political debates concerning the meaning, management and lived experience of madness and distress. This paper examines the framing of this research as autoethnographic and the relationship of personal and/or lived experience to the knowledge produced. I explore the classificatory, confessional and Mad politics of experience, identity and identification, and embodiment for research subjectivities. Employing autoethnographic means, I consider the ways in which I situate myself, and am situated by others, in relation to my research, evaluating the methodological implications of the crisis of representation in anthropology, and the post-structuralist criticism of identity politics. Through an engagement Mad Studies, I seek to move beyond these two established responses to the use of personal experience and autobiography in research.
Am I a researcher or a self-harmer? Mental health, objectivity and identity politics in history (open access)
The different models of self-harm in other eras can challenge the presumed universality of modern concepts, from psychiatric diagnoses to the very idea of objectivity in science and medicine. In this paper I argue that the history of psychiatry is not a neutral set of ideas by which we understand the past but an opportunity to reflect on, critique and improve modern mental healthcare. By writing as omniscient narrators of the past, historians often do create the impression that there is only one interpretation of a set of ideas. Incorporating personal material into a narrative is one way of countering this tendency, reminding the reader that the researcher is a part of his or her field of research. Yet there are challenges here as well. In identifying as a particular kind of person—a mental health service user—we run the risk of narrowing the field. By exploring the tensions between research and experience, I highlight the importance of critical reflection on identity politics within mental health care and practice today.
Tactical authenticity in the production of autoethnographic mad narratives
Simon P Clarke, Colin Wright
First-person accounts of madness and of encountering psychiatric services provide important sociocultural and psychological knowledge about the subjectivity of distress. The importance of such accounts is often based upon a claim of the authenticity of personal experience. However, authenticity is a highly heterogeneous concept: a popular current manifestation of the discourse of authenticity is in positive psychology, where it is often underpinned by humanist assumptions such as the rational autonomous self. The post-structuralist critique of humanism challenged such essentialist notions some time ago and has been adopted explicitly by research methodologies such as autoethnography. The purpose of this article is to argue that this tension—between the value of methods such as autoethnography that offer a legitimate source of knowledge regarding the subjective experience of madness on the one hand, and the problems with an essentialist conception of the ‘authentic’ self on the other—can be addressed by the deployment of a reconceptualised form of authenticity based on Spivak’s (in: Guha and Spivak (eds.) Selected subaltern studies, Oxford University Press, Oxford, 1988) notion of ‘strategic essentialism’, especially when modified by De Certeau’s (The practice of everyday life, University of California Press, Los Angeles, 1984) distinction between ‘tactics’ and ‘strategies’. The implications of this distinction in terms of developing autoethnographies of distress are then discussed.
Air care: an ‘aerography’ of breath, buildings and bugs in the cystic fibrosis clinic (open access)
Nik Brown, Chrissy Buse, Alan Lewis, Daryl Martin, Sarah Nettleton
With significant relevance to the Covid‐19 pandemic, this paper contributes to emerging ‘aerographic’ research on the socio‐materialities of air and breath, based on an in‐depth empirical study of three hospital‐based lung infection clinics treating people with cystic fibrosis. We begin by outlining the changing place of atmosphere in hospital design from the pre‐antibiotic period and into the present. We then turn to the first of three aerographic themes where air becomes a matter of grasping and visualising otherwise invisible airborne infections. This includes imagining patients located within bodily spheres or ‘cloud bodies’, conceptually anchored in Irigaray’s thoughts on the ‘forgetting of the air’ and Sloterdijk’s immunitary ‘spherology’ of the body. Our second theme explores the material politics of air, air conditioning, window design and the way competing ‘air regimes’ come into conflict with each other at the interface of buildings, bodies and the biotic. Our final theme attends to the ‘cost of air’, the aero‐economic problem of atmospheric scarcity within modern high‐rise, deep‐density healthcare architectures.
The biohabitus of scarcity: bio‐social dispositions and the “obesity epidemic” in Mexico
Alejandro Martínez, Iván Anduro, Ietza Bojorquez
In this article, we explore the potential of Warin et al .’s concept of biohabitus (a set of embodied biological and social dispositions) as a conceptual tool for the understanding of mechanisms behind the “obesity epidemic.” Elaborating on this concept, we argue that a context of food scarcity gives rise to a biohabitus geared to energy‐saving, expressed in both biological (the thrifty genotype/phenotype hypotheses) and symbolic dispositions (Bourdieu’s “taste of necessity”), and the interaction between this type of biohabitus and changes in the food‐related environment results in increased body mass index. We exemplify the use of this framework by applying it to the case of Mexico, a middle‐income Latin American country with one of the highest prevalences of obesity worldwide. The example shows how the concept of biohabitus can help researchers move beyond disciplinary explanations, towards a more complex understanding of the conjunction of social and biological processes that result in differential patterns of health and disease.
Making body work sequences visible: an ethnographic study of acute orthopaedic hospital wards
Tamara Backhouse, Simon P. Hammond, Jane L. Cross, Nigel Lambert, Anna Varley, Bridget Penhale, Chris Fox, Fiona Poland
Within health and social care, academic attention is increasingly paid to understanding the nature and centrality of body work. Relatively little is known about how and where body work specifically fits into the wider work relations that produce it in healthcare settings. We draw on ethnographic observations of staff practice in three National Health Service acute hospital wards in the United Kingdom to make visible the micro‐processes of patient care sequences including both body work and the work contextualising and supporting it. Our data, produced in 2015, show body work interactions in acute care to be critically embedded within a context of initiating, preparing, moving and restoring and proceeding. Shades of privacy and objectification of the body are present throughout these sequences. While accomplishing tasks away from the physical body, staff members must also maintain physical and cognitive work focussed on producing body work. Thus, patient care is necessarily complex, requiring much staff time and energy to deliver it. We argue that by making visible the micro‐processes that hospital patient care depends on, including both body work and the work sequences supporting it, the complex physical and cognitive workload required to deliver care can be better recognised. (A virtual version of this abstract is available at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA)
Callers to telephone helplines often seek advice beyond the authorisation of those staffing the service. On health helplines, this poses a problem to the call‐taker. How do they manage the dilemma between, on the one hand, exceeding their competence and authority to give medical advice, and, on the other, leaving the caller unsatisfied with the service? We offer a framework in which to set newly identified practices along with those identified in previous studies. Using a set of calls to a medical helpline run by Parkinson’s United Kingdom, we show that the call‐taker manages the problem by (i) only suggesting courses of action highly marked for impersonality or contingency (displaying a ‘low deontic stance’, Stevanovic and Peräkylä 2012), and (ii) limiting the interactional risks of tailoring the advice to callers’ personal circumstances. We show how our suggested framework of ‘advising without personalising’ may guide research into the difficult job of delivering advice where the service provider must observe a limit on what they can say.
Caregivers’ causal attributions of their relatives’ mental illness and the association with stigma
Vathsala Sagayadevan, Ying Wen Lau, Yunjue Zhang, Anitha Jeyagurunathan, Saleha Shafie, Sherilyn Chang, Siow Ann Chong, Mythily Subramaniam
Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives’ diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings.
Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal
Mayra Delalibera, Alexandra Coelho, Pedro Frade, António Barbosa, Isabel Leal
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
“If somebody could just understand what I am going through, it would make all the difference”: Conceptualizations of trauma in homeless populations experiencing severe mental illness (open access)
Andrew Gilmoor, Smriti Vallath, Barbara Regeer, Joske Bunders
Exposure to violence, vulnerability due to lack of shelter, alienation due to stigma, the experiences of severe mental illness (SMI) and subsequent institutionalization, make homeless persons with SMI uniquely susceptible to trauma exposure and subsequent mental health consequences. This study aims to contribute to the development of culturally sensitive interventions for identifying and treating trauma in a population of homeless persons with SMI in Tamil Nadu, India by understanding the manifestations of trauma and its associated consequences in this population. Free-listing exercises followed by in-depth interviews were conducted with a convenience sample of 26 user-survivors who have experienced homelessness or were at risk of homelessness, and suffered from SMI. Topics explored included events considered to be traumatic, pathways to trauma, associated emotional, physical and social complaints, and coping strategies. Results indicate discrepancies in classification of traumatic events between user-survivors and the Diagnostic and Statistical Manual of Mental Disorders. Traumatic experiences, particularly relating to social relationships and poverty, mentioned by user-survivors did not match traditional conceptualizations of trauma. Positive coping strategies for trauma included being mentally strong, knowledge and awareness, whereas the main negative coping strategy is avoidance. User-survivors attributed their experiences of homelessness and SMI to past traumas. Differing views of trauma between user-survivors and mental health professionals can lead to misdiagnosis and under-recognition of trauma in this population of homeless persons with SMI.