ObjectiveCo-morbid insomnia and sleep apnea is a common and debilitating condition that is more difficult to treat compared to insomnia or sleep apnea-alone. Emerging evidence suggests that cognitive behavioral therapy for insomnia is effective in patients with COMISA, however, those with more severe sleep apnea and evidence of greater objective sleep disturbance may be less responsive to CBTi. Polysomnographic sleep study data has been used to predict treatment response to CBTi in patients with insomnia-alone, but not in patients with COMISA. (...) We used randomized controlled trial data to investigate polysomnographic predictors of insomnia improvement following CBTi, versus control in participants with COMISA.MethodsOne hundred and forty five participants with insomnia and sleep apnea [apnea-hypopnea index ≥ 15] were randomized to CBTi or no-treatment control. Mixed models were used to investigate the effect of pre-treatment AHI, sleep duration, and other traditional, and novel [quantitative electroencephalography ] polysomnographic predictors of between-group changes in Insomnia Severity Index scores from pre-treatment to post-treatment.ResultsCompared to control, CBTi was associated with greater ISI improvement among participants with; higher AHI, less wake after sleep onset, and less N3 sleep. No quantitative electroencephalographic, or other traditional polysomnographic variables predicted between-group ISI change.DiscussionAmong participants with COMISA, higher OSA severity predicted a greater treatment-response to CBTi, versus control. People with COMISA should be treated with CBTi, which is effective even in the presence of severe OSA and objective sleep disturbance. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of (...) parental refusal based upon an infant’s projected quality of life. (shrink)

Co-morbidity of schizophrenia and autism is low because interpersonal concerns of schizophrenic patients presuppose developmental achievements that are absent in autism. Autism may arise if primary anxiety is not overcome at a key developmental stage by affective synchronisation between infant and caregiver. Schizophrenic patients will have learned to regulate primitive anxiety by affectively attuning to narrow social networks but remain highly vulnerable to exclusion from larger groups.

No two individuals with the autism diagnosis are ever the same—yet many practitioners and parents can recognize signs of ASD very rapidly with the naked eye. What, then, is this phenotype of autism that shows itself across such distinct clinical presentations and heterogeneous developments? The “signs” seem notoriously slippery and resistant to the behavioral threshold categories that make up current assessment tools. Part of the problem is that cognitive and behavioral “abilities” typically are theorized as high-level disembodied and modular functions—that (...) are assessed discretely (impaired, normal, enhanced) to define a spectral syndrome. Even as biology reminds us that organic developing bodies are not made up of independent switches, we remain often seduced by the simplicity of mechanistic and cognitive models. Developmental disorders such as autism have accordingly been theorized as due to different modular dysfunctions—typically of cortical origin, i.e., failures of “theory of mind” (Baron-Cohen et al., 1985), of the “mirror neuron system” (Ramachandran and Oberman, 2006), of “weak central coherence” (Happe and Frith, 2006) or of the balance of “empathizing” and “systemizing” (Baron-Cohen, 2009), just to list a few. -/- The broad array of autonomic (Ming et al., 2005; Cheshire, 2012) and sensorimotor (Damasio and Maurer, 1978; Maurer and Damasio, 1982; Donnellan and Leary, 1995; Leary and Hill, 1996; Donnellan and Leary, 2012; Donnellan et al., 2012) differences experienced and reported by people with autism have by such theories typically been sidelined as “co-morbidities,” possibly sharing genetic causes, but rendered as incidental and decisively behaviorally irrelevant symptoms—surely disconnected from cognition. But what if the development of cortically based mental processes and autonomous control relies on the complexities and proper function of the peripheral nervous systems? Through such an “embodied” lens the heterogeneous symptoms of autism invites new interpretations. We propose here that many behavioral-level findings can be re-defined as downstream effects of how developing nervous systems attempt to cope and adapt to the challenges of having various noisy, unpredictable, and unreliable peripheral inputs. (shrink)

Human social intelligence comprises a wide range of complex cognitive and affective processes that appear to be selectively impaired in autistic spectrum disorders. The study of these neuro- developmental disorders and the study of canonical social intelligence have advanced rapidly over the last twenty years by investigating the two together. Specifically, studies of autism have provided important insights into the nature of ‘theory of mind’ abilities, their normal development and underlying neural systems. At the same time, the idea of impaired (...) development of the neurocognitive mechanisms underlying ‘theory of mind’ has shed new light on the nature of autistic disorders. This general approach is not restricted to the study of impairments but extends to mapping areas of social intelligence that are spared in autism. Here we investigate basic moral judgment and find that it appears to be substantially intact in children with autism who are severely impaired in ‘theory of mind’. At the same time, we extend studies of moral reasoning in normal development by way of a new control task, the ‘cry baby’ task. Cry baby scenarios, in which the distress of the victim is ‘unreasonable’ or ‘unjustified,’ do not elicit moral condemnation from normally developing preschoolers or from children with autism. Judgments of moral transgressions in which the victim displays distress are therefore not likely the result of a simple automatic reaction to the distress and more likely involve moral reasoning. Mapping the cognitive co-morbidity patterns of disordered development should encompass both impairments and sparings because both will be needed to make sense of the neural and genetic levels. (shrink)

This review of Professor Marcos Cueto's Cold War Deadly Fevers: Malaria Eradication in Mexico, 1955–1975 discusses some of the historical, sociological, political and parasitological topics included in Dr. Cueto's superbly well-informed volume. The reviewer, a parasitologist, follows the trail illuminated by Dr. Cueto through the foundations of the malaria eradication campaign; the release in Mexico of the first postage stamp in the world dedicated to malaria control; epidemiological facts on malarial morbidity and mortality in Mexico when the campaign began; the (...) emergence of problem areas that impeded eradication; considerations on mosquitoes and malaria transmission in Mexico; the role of business and society in malaria eradication; the results of the campaign; the relationship between malaria and poverty; and the parasitological lessons to be learned from the history of malaria eradication campaigns. Dr. Cueto's excellent and well-informed exploration of malaria – not merely as a disease but as a social, economic and human problem – makes this book required reading. (shrink)

Popular and neurobiological accounts of addiction tend to treat it as a form of compulsion. This contrasts with personality disorder, where most problematic behaviours are treated as voluntary. But high levels of co-morbidity, overlapping diagnostic traits, and the effectiveness of a range of comparable clinical interventions for addiction and personality disorder suggest that this difference in treatment is unjustified. Drawing on this range of clinical interventions, we argue that addiction is not a form of compulsion. Rather, the misuse of drugs (...) and alcohol is like many of the problematic behaviours associated with personality disorder: it is typically a way of coping with psychological distress. We suggest that a satisfying explanation of why many addicts struggle to control their use can be given without departing from concepts employed in our basic folk psychological understanding of agency. In particular, we appeal to five rough-and-ready folk psychological factors to explain addiction: (i) strength of desire and habit; (ii) willpower; (iii) motivation; (iv) functional role; and (v) decision and resolve. (shrink)

Ontologies are being developed throughout the biomedical sciences to address standardization, integration, classification and reasoning needs against the background of an increasingly data-driven research paradigm. In particular, ontologies facilitate the translation of basic research into benefits for the patient by making research results more discoverable and by facilitating knowledge transfer across disciplinary boundaries. Addressing and adequately treating mental illness is one of our most pressing public health challenges. Primary research across multiple disciplines such as psychology, psychiatry, biology, neuroscience and pharmacology (...) needs to be integrated in order to promote a more comprehensive understanding of underlying processes and mechanisms, and this need for integration only becomes more pressing with our increase in understanding of differences among individuals and populations at the molecular level concerning susceptibility to specific illnesses. Substance addiction is a particularly relevant public health challenge in the developed world, affecting a substantial percentage of the population, often co-morbid with other illnesses such as mood disorders. Currently, however, there is no straightforward automated method to combine data of relevance to the study of substance addiction across multiple disciplines and populations. In this contribution, we describe a framework of interlinked, interoperable bio-ontologies for the annotation of primary research data relating to substance addiction, and discuss how this framework enables easy integration of results across disciplinary boundaries. We describe entities and relationships relevant for the description of addiction within the Mental Functioning Ontology, Chemical Entities of Biological Interest Ontology, Protein Ontology, Gene Ontology and the Neuroscience Information Framework ontologies. (shrink)

Patients with borderline personality disorder (BPD) are overrepresented in compulsory inpatient care for suicide-protective reasons. Still, much evidence indicates negative effects of such care, including increased suicide risk. Clinical guidelines are contradictory, leaving clinicians with difficult ethical dilemmas when deciding on compulsory care. In this study, we analyse the arguments most commonly used in favour of compulsory care of BPD patients, to find out in what situations such care is ethically justified. The aim is to guide clinicians when deciding on (...) compulsory care for BPD patients and reduce the use of potentially harmful care. The arguments analysed are (a) the patients lack decision competence, (b) the patients lack authenticity, (c) compulsory care saves the patient from suicide, (d) compulsory care safeguards against litigation, complaints, or doctor's anxiety, (e) compulsory care is a practical solution in emergencies, and (f) it is better for the caregiver to ‘err on the safe side’. We conclude that compulsory care is not ethically justified in most cases unless the clinician has probable reason to believe that the patient lacks decision capacity by suffering from a severe mental co-morbidity and stands to benefit from such care. (shrink)

Artificial womb technology for extracorporeal gestation of human offspring (ectogenesis or ectogestation) has profound ethical, sociological and religious implications for Muslim communities. In this article we examine the usage of the technology through the lens of Islamic ethico-legal frameworks specifically the legal maxims (al-Qawaid al-Fiqhiyyah) and higher objectives of Islamic law (Maqaṣid al-Shariah). Our analysis suggests that its application may be contingently permissible (halal) in situations of dire need such as sustaining life and development of extremely premature newborns, for advancing (...) fetal medicine and avoiding maternal co-morbidities during fetal treatment, and for enabling motherhood for women without functional wombs, or who face grave medical risks in pregnancy. However, its application may be proscribed (haram) for enabling healthy women to avoid pregnancy and childbirth, or to achieve parenthood equity. Specification of these views to particular policy, legal contexts and Fatwa will require multidisciplinary Shariah-based bioethical deliberations between jurists, policymakers, and scientists. (shrink)

People in extraordinary situations are vulnerable. As research participants, they are additionally threatened by abuse or exploitation and the possibility of harm through research. To protect people against these threats, informed consent as an instrument of self-determination has been introduced. Self-determination requires autonomous persons, who voluntarily make decisions based on their values and morals. However, in nursing research, this requirement cannot always be met. Advanced age, chronic illness, co-morbidity and frailty are reasons for dependencies. These in turn lead to limited (...) abilities or opportunities for decision-making and self-determination. Exclusion of vulnerable people from research projects would disadvantage them by not covering their needs, which would violate the ethical principles of justice and beneficence. Commonly, vulnerability is attributed to social groups. The consequence for individuals, attributed as belonging to such a vulnerable group, is that the principles of respect for autonomy, justice and beneficence are subordinated to the principle of non-maleficence, understood as avoiding the risk to cause more harm than good. In addition, group-specific attribution could lead to stigmatizing because labelling a person as deviation from a norm violates integrity. For clinical nursing research, the question arises how the protection of vulnerable people could be granted without compromising ethical principles. The concept of relational ethics provides a possible approach. It defines vulnerability as the relation between a person’s health status and the extent to which this person is dependent on the researcher and the research context. Vulnerability is not attributed solely to a person but to a situation, meaning the person is viewed in context. By combining vulnerability as a context-related and situational concept with existing approaches of informed consent, the different ethical principles can be balanced and preserved at every step of the research process. (shrink)

Investigations into the neurobiology of moral cognition are often done by examining clinical populations characterized by diminished moral emotions and a proclivity toward immoral behavior. Psychopathy is the most common disorder studied for this purpose. Although cocaine abuse is highly co-morbid with psychopathy and cocaine-dependent individuals exhibit many of the same abnormalities in socio-affective processing as psychopaths, this population has received relatively little attention in moral psychology. To address this issue, the authors used functional magnetic resonance imaging (fMRI) to record (...) hemodynamic activity in 306 incarcerated male adults, stratified into regular cocaine users (n = 87) and a matched sample of non-cocaine users (n = 87), while viewing pictures that did or did not depict immoral actions and determining whether each depicted scenario occurred indoors or outdoors. Consistent with expectations, cocaine users showed abnormal neural activity in several frontostriatial regions during implicit moral picture processing compared to their non-cocaine using peers. This included reduced moral/non-moral picture discrimination in the vACC, vmPFC, lOFC, and left vSTR. Additionally, psychopathy was negatively correlated with activity in an overlapping region of the ACC and right lateralized vSTR. These results suggest that regular cocaine abuse may lead to affective deficits which can impact relatively high-level processes like moral cognition. Moreover, they add to a growing body of research suggesting an important role for the mesocorticolimbic dopamine pathway in socio-affective processing. (shrink)

This article argues in support of the proposition that “A Personality Disorder May Nullify Responsibility for a Criminal Act.” Building upon research in categorical and dimensional controversies in diagnosis, neurocognitive science and the behavioral genetics of mental disorders, and difficulties in differential diagnosis and co-morbidity with personality disorders, this article holds that a per se rule barring personality diagnosis as a basis for a defense of legal insanity is scientifically and conceptually indefensible. Rather, focus should be upon the severity and (...) impact in specific cases of any legally relevant functional deficits arising from a mental disorder (including personality disorders). Failure to do so risks potentially misleading “battles of the experts” about a defendant's diagnosis in criminal responsibility defenses and improper usurpation of the role of the legal finder of fact as mental health expert witnesses are inserted as gatekeepers indefensibly based upon diagnosis. Implications for practice and public policy are considered, including a “modest proposal” for post-trial management of defendants found not guilty by reason of insanity on the basis of functional deficits arising from personality disorder. (shrink)

Given research and public interest for conditions related to an extended lifespan, we addressed the questions of what matters and what matters most for subsequent survival past age 80. The data was drawn from the population-based and multidisciplinary Swedish OCTO Twin Study, in which a sample consisting of identical and same-sex fraternal twin pairs, followed from age 80 until death, provided detailed data on health, physical functioning, life style, personality, and sociodemographic conditions. Information concerning date of birth and death were (...) obtained from population census register. We estimated heritability using an ACE model and evaluated the role of multiple predictors for the mortality-related hazard rate using Cox regression. Our findings confirmed a low heritability of 12%. As expected, longer survival was associated with being a female, an apolipoprotein E e4 allele non-carrier, and a non-smoker. Several diseases were found to be associated with shorter survival as well as certain health conditions. Stronger grip and better lung function, as well as better vision, and better cognitive function was related to longer survival. Social embeddedness, better self-evaluated health, and life-satisfaction were also significantly associated with longer survival. After controlling for the impact of comorbidity, functional markers, and personality-related predictors, we found that sex, cerebrovascular diseases, compromised cognitive functioning, self-related health, and life-satisfaction remained as strong predictors. Cancer was only associated with the mortality hazard when accounting for other co-morbidities. The survival estimates were mostly in anticipated directions and contained effect sizes within the expected range. Noteworthy, we found that some of the so-called “soft-markers” remained strong predictors, despite a control for other factors. For example, self-evaluation of health and ratings of life-satisfaction provide additional and valuable information. (shrink)

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each (...) guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics CommentaryTamra Lysaght, Senior Research FellowThe case scenario reflects the dilemmas frequently faced by researchers who discover incidental findings in the course of their studies. Indeed, the literature suggests that the prevalence of incidental findings in neuroimaging research is common,1 and a recent meta-analysis found that such findings increase significantly with age.2 Thus, given the age of the study population and increased likelihood of co-morbidities, it is puzzling that (...) the research team did not anticipate the possibility of finding an anomaly. Even more puzzling is that the reviewing IRB did not detect this omission and require that the team build a plan into the research protocol for managing incidental findings. Following international recommendations,3 such a plan would have likely included protocols for obtaining consent in dealing with an incidental finding, a procedure for evaluating the clinical relevance of the finding, and arranging for suitable follow-up care if necessary.Nevertheless, the research team, not having obtained consent to disclose an incidental finding to the participant, or not, must decide whether to break protocol and contact the participant with information that could have serious health implications for his or her health, especially if the observed lesion turns out to be cancer or some other life-threatening neuropathology. Any decision to break the research protocol should be made in consultation with the approving IRB. The principal investigator, Dr. M, who is ultimately responsible for the ethical conduct of this study, has a number of factors to consider when making this decision. First and foremost, Dr. M will need to weigh up the risks and benefits of disclosing the findings to this 72-year-old [End Page 283] research participant who is presumably already experiencing cognitive impairments, if not early stage symptoms of dementia.Numerous international scholars agree that disclosure of incidental findings should rely on the net beneficence to an individual research participant.4 Specifically, Wolf et al. argue that there should be a strong net benefit for disclosing an incidental finding, such that the information reveals a condition that is likely to be either life-threatening or grave and can be avoided or ameliorated through an intervention. In such instances, the researchers have an ethical obligation to disclose the findings and potentially follow up with clinical care. However, if there is only a net possible benefit, such that the condition is not life-threatening but may be grave or serious and cannot be avoided or ameliorated, then investigators may consider other factors, such as the respect that is owed to research participants and their needs and preferences for information about their health and well-being. Where the condition is not likely to be serious, researchers are not compelled to disclose an incidental finding.In determining the seriousness of an incidental finding, a specialist with expertise in assessing the clinical significance of MRI scans is needed to examine the participants’ images.5 In this instance, Dr. M has a neurologist on the research team who has detected the lesion but is unable to ascertain its clinical relevance without further investigation. The reasons why follow-up information is required is not detailed in the case scenario, but may have arisen because the scans were taken for research purposes and may not be clinically validated for diagnostic purposes — a possibility given the aims of the study (i.e., to elucidate the transition of minimal cognitive impairment to dementia, not brain tumours). For whatever reason, the detected lesion is only a suspected incidental finding that may or may not be life-threatening or grave. Thus, the net benefit to the participant in disclosing this unclear finding is harder to judge.Assuming that the lesion is a serious or life-threatening condition, the team may consider whether it can be avoided or ameliorated with an intervention. The cognitively impaired, although still mentally competent, participant is 72 years old and may respond poorly to a neurosurgical intervention if the diagnosis of a tumour or malignancy is confirmed. The physical and emotional distress of such a procedure may exacerbate the existing cognitive impairments, reducing the net benefit ratio of the disclosure. Indeed, the team should consider the impact that the disclosure... (shrink)

Controlled human infection (CHI) studies involve the deliberate exposure of healthy research participants to infectious agents to study early disease processes and evaluate interventions under controlled conditions with high efficiency. Although CHI studies expose participants to the risk of infection, they are designed to offer investigators unique advantages for studying the pathogenesis of infectious diseases and testing potential vaccines or treatments in humans. One of the central challenges facing investigators involves the fair selection of research subjects to participate in CHI (...) studies. While there is widespread agreement that investigators have a duty to select research participants fairly, this principle also yields conflicting ethical imperatives, for example requiring investigators to both exclude potential participants with co‐morbidities since they face increased risks, but also to include them in order to ensure generalizability. In this paper we defend an account of fair subject selection that is tailored to the context of CHI studies. We identify the considerations of fairness that bear directly on selecting participants for CHI studies and provide investigators and members of IRBs and RECs with a principled way to navigate the conflicting imperatives to which these considerations give rise. (shrink)

OBJECTIVE: This paper addresses the question of the circumstances which lead clinicians to use legal coercion in the management of patients with severe anorexia nervosa, and explores similarities and differences between such formal coercion and other forms of 'strong persuasion' in patient management. METHOD: Logistic regression and other statistical analysis was undertaken on 75 first admissions for anorexia nervosa from a sample of 117 successive admissions to an eating disorder facility in New South Wales, Australia, where an eating disorder was (...) the primary diagnosis. Admissions with other primary diagnoses, such as bulimia nervosa (25 episodes), and entries with a co morbid diagnosis (e.g. depression or opiate overdose), were discarded, leaving 96 admissions by 75 individuals. RESULTS: Resort to measures of legal coercion into treatment was found to be associated with three main indicators: the patient's past history (number of previous admissions); the complexity of their condition (the number of other psychiatric co morbidities); and their current health risk (measured either by Body Mass Index or the risk of re-feeding syndrome). CONCLUSIONS: Our study is consistent with the few earlier studies about indicators for legal coercion in anorexia nervosa management, and suggests that clinicians use legal coercion very sparingly, distinguishing legal coercion from other forms of close clinical management of patients. (shrink)

Treatment of military-related posttraumatic stress disorder is a major public health care concern. Since 2001 over 2.5 million troops have been deployed to Iraq or Afghanistan, many of whom have experienced direct combat and sustained threat. Estimates of PTSD rates related to these wars range from 8% to over 20%, or 192,000 to 480,000 individuals. Already, nearly 250,000 service members of Operations Enduring Freedom, Iraqi Freedom, and New Dawn have sought VA health care services for PTSD. This recent increased need (...) for mental health services comes in addition to the ongoing needs of Vietnam-era and other veterans who continue to suffer from PTSD. PTSD is related to high co-morbidities of other mental health difficulties, poorer physical health status, and increased medical care utilization. Such high demand for services is an important contributor to the large cost associated with combat-related PTSD. Accordingly, promoting successful, cost-effective treatment strategies for PTSD is a chief public health care priority. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Am Not Sure?Paul E. LevinIt was a beautiful Friday morning, a few weeks into the summer. My schedule appeared lighter than usual and I even envisioned leaving work a bit early. Maybe a challenging bike ride before dinner. I was sitting in the chairman’s office having our weekly meeting. One of our junior faculty members called... he needed help. He was on call and a 32–year–old pregnant woman (...) with a displaced femoral neck fracture had just been transferred to our emergency department (ED). Ms. B tripped in her kitchen last evening. She was unable to stand and was brought to the local ED by ambulance.My colleague was concerned that he wouldn’t be able to successfully reduce the fracture. The long–term prognosis of the hip joint depended on a successful reduction of the femoral neck fracture. In addition, there was an ongoing debate in the orthopaedic literature related to the urgency of operative care to prevent osteonecrosis of the femoral head. I reviewed the x–rays, didn’t anticipate a problem and let him know that I would come to the operating room (OR) to assist. “No”, he responded, “I am not comfortable caring for this patient”. I immediately left the office, went to the hospital and assumed care of the patient. Clearly, my plans for a bike ride were gone, but I had the opportunity to help a woman in need of expert orthopaedic care.Ms. B had been admitted to the obstetrical service. She was a 32–year–old woman of Haitian descent who had recently immigrated to the United States. She had very limited English comprehension and her primary spoken languages were French and Creole. She was alone, in a hospital in a foreign country. She was 24 weeks pregnant with her first child and had no other co–morbidities. Her pregnancy had ben progressing uneventfully.When I first met Ms. B she was lying on a stretcher in an observation unit on the obstetrical floor. She appeared frightened. Two orthopaedic residents were present and obtaining consent for surgical repair of the hip. In their minds there was nothing to discuss, the patient had a displaced femoral neck fracture and needed to have surgery immediately. In their minds, no other options were available and obtaining consent would be straightforward. I introduced myself, sat down on a lab stool by the bed and began a conversation. I needed to meet the patient, understand who she was and discuss treatment. I am not sure that obtaining an informed consent is ever “straightforward” when [End Page 14] a doctor is explaining to a patient that they require emergency surgery. This discussion surely would not be easy or straightforward.We utilized a telephone interpretation service. Every question and response required the transfer of the handset between the patient and physician. Ms. B was in pain and frightened. She immediately expressed concern about her pregnancy and her baby. I arranged for her to meet all of the physicians who would possibly be involved in her care and the care of her baby. Each consultant could explain their area of expertise and potential involvement in the care of Ms. B and her child. She met and had an opportunity to talk with the obstetrician on call, a maternal fetal medicine (MFM) fellow and a neonatologist. I supplied the orthopaedic information. I explained the severity of the injury, the risks of osteonecrosis either with or without surgery as well as concerns over non–union and traumatic arthritis of the hip. Undoubtedly, in a healthy 32–year–old woman who wasn’t pregnant, early surgical intervention would be the most appropriate management in hopes of preserving a normal hip joint. We also discussed the possibility of treating her without surgery. She would be administered pain medication, which were known to be safe during pregnancy, and allowed to begin to ambulate with a walker or crutches. I explained potential problems without surgery and what options would be available to treat any problems that developed with her hip after the child was born. Of course, hip fractures in pregnant woman are very rare, and as a result treating a... (shrink)

An abundance of data unequivocally shows that exercise can be an effective tool in the fight against obesity and its associated co-morbidities. Indeed, physical activity can be more effective than widely-used pharmaceutical interventions. Whilst metformin reduces the incidence of diabetes by 31% (as compared with a placebo) in both men and women across different racial and ethnic groups, lifestyle intervention (including exercise) reduces the incidence by 58%. In this context, it is notable that a group of prominent medics and exercise (...) scientists recently sent a well-publicised letter to the General Medical Council and Medical Schools Council calling for the introduction of evidence-based lifestyle education into all medical curricula. The letter warns that there is a lack of understanding of the impact that exercise and nutrition can have on physical health amongst doctors. In the absence of an educational overhaul, the signatories warn that the government is likely to fail to reach its goal of preventing tens of thousands of premature deaths from heart disease and cancer by 2020. Whilst we agree with the need to address this apparent lack of understanding, we argue that the ethical justification of doing so is not limited to this broadly beneficence-based justification. There is also a justification grounded in the duty of non-maleficence, that is, the duty to avoid unreasonably harming patients. This duty requires that doctors refrain from (i) preventing patients from undergoing beneficial treatment without good reason, (ii) exposing patients to unreasonable risks and (iii) reducing the therapeutic effect of an effective medical intervention. This requires an understanding of the physical impact of exercise. (shrink)

Background: Double degrees in nursing and midwifery have evolved in Australia as a proposed solution to possible impending shortages of qualified midwives in the healthcare workforce. The double degree is seen as a more acceptable option in non-metropolitan areas in particular. Concern has been expressed however, about dilution of midwifery philosophy and graduates opportunities in respect of future clinical practice. Aim: This study aimed to provide a better understanding of motivations and intentions of students who undertake the Bachelor of Nursing (...) Science/Bachelor of Midwifery double degree. Methods: A cross-sectional survey design was employed at four universities that offered double degrees in nursing and midwifery in three states of Australia. Students enrolled in first and fourth year of a double degree and graduates of a double degree were invited to complete an online survey comprised of Likertscales and items requiring free text responses. Quantitative data was analysed using SPSS and thematic analysis was used to analyse the qualitative data. Findings: Participants indicated a clear preference for midwifery as a career with this preference increasing for each cohort at each stage of study. Discussion: Primary reasons for selecting a double degree were perceived increased opportunity for employment and use of nursing skills to enhance midwifery practice in a population with growing co-morbidities. A strong identification with midwifery philosophy and identity was also demonstrated.Conclusion: An understanding of motivations and career intentions of students undertaking double degree studies can inform future program development and workforce planning. (shrink)

Next SectionBackground International and national agencies play a major role in setting HIV care-and-treatment priorities in low-income-countries. Little is known about priority setting at lower health-system levels. The objective of this article is to explore experiences of HIV priority decisions, at what levels these decisions are made and how they might influence the distribution of health benefits in a high-endemic region in Tanzania. Methods This is a qualitative study using observations, key documents and semistructured focus-group and individual interviews (43) with (...) health workers, patients and administrators at one regional and one district hospital. The analysis was based on an editing analysis style. Results Health workers did not perceive themselves as bedside rationing agents and they reported following national recommendations and felt they have little impact on important priority decisions. Health benefit distributions were largely determined by priority decisions made at a national level. External factors, such as eligibility criteria, inadequate funding and barriers to access seemed to play a major role in the actual distribution of health services and benefits in the region. Patient groups who were actually given high priority were the sickest patients, those living near a facility and those who could afford long journeys and frequent visits. Low-priority groups were those experiencing other co-morbidities or treatment failure, children, asymptomatic patients and the poorest. Conclusions/significance The interaction of priority setting across health-system levels and their impact on distribution of health outcomes in the population has been underestimated. The distributional pattern of health outcomes calls for further normative assessment. (shrink)

When a disaster occurs, adults over age 65 may be disproportionately impacted due to sensory deficits, chronic health conditions, diminished social support and isolation, and financial limitations. Although older adults comprised approximately 15 percent of the New Orleans population, they accounted for over 70 percent of the fatalities associated with Hurricane Katrina in 2005. Disasters can also impact older adults’ morbidity, as a disaster may disrupt established habits and routines and result in removal from a familiar environment, promoting disorientation. This (...) may raise particular challenges for older adults with mental and physical co-morbidities, and subsequently for their formal and informal caregivers.While some older adults may need care for physical health problems following a disaster, mental health needs are often overlooked or unmet. One study of Hurricane Katrina survivors found that, compared to older adults, middle-aged individuals were twice as likely to have received mental health services in the eight months after the hurricane. (shrink)

Little is known about health of the growing subpopulation of the working poor in Japan. We aimed to evaluate health status and healthcare utilization in relation to income among Japanese working adults. We conducted a one-month prospective cohort study using a health diary in working adults from a nationally representative random sample in Japan. Based on the government criterion, the working poor group was defined as earning an equivalent annual income of less than 1.48 million Japanese-yen. For health status, we (...) measured symptomatic episodes and health-related quality of life (HRQOL). For healthcare utilization, we measured frequencies of visits to a physician or pharmacy, and use of complementary and alternative medicine (CAM). We constructed multiple linear regression models for these measures adjusted for age, gender, and co-morbidity, using annual equivalent income as a 4-level categorical variable. (shrink)

The question of age as a factor in ethical decision-making takes two forms. The first form considers age as a factor at the societal, or policy, level, and the second as a factor in determining the capacity of the individual patient to make decisions regarding their own care. This article satisfies itself with a consideration of only the latter question. The issue of whether age is contributing factor in medical decision-making is frequently posited when one considers ethically charged instances of (...) medical decision making at the end of life. Few would argue that the person who has the capacity for decision-making should be denied the ability to exercise that facility and so, it is when a person has lost their ability for making those choices that the question of age as a contributing factor in ethical decision making is raised. The question therefore becomes one of capacity more then age, with age as a useful, but inexact, gauge of that capacity. The inexactitude of age as a surrogate of capacity is a contributing factor to the problem posed in this series of articles. Therefore, to define the relative contribution of age to the capacity for ethical decision-making this article will focus not on the loss of that ability, but rather on the factors that define the realization of that faculty. To do this it will be necessary to define how that faculty is to be to be measured and what are the characteristics of an ethical decision that define it apart from other decisions. Since at the beginning of life, if age is the only variable (adjusting for other co-morbid states) then the issue of surrogacy is a temporary one and is unlike the adult where the presumption is that the person is unlikely to regain decision-making capacity as they slip further into their morbid state. (shrink)

Background: Psychopathy and substance use disorders are highly co-morbid and their co-occurrence is associated with higher severity of addictive behavior and increased risk of violent offending. Both substance use disorders and psychopathy are related to prominent impairments in emotion processing, which are also central features of alexithymia. The nature of the relationship between psychopathy and alexithymia is not well understood and has been particularly understudied among substance dependent individuals. Aims: Our goal was to evaluate the levels of psychopathy and alexithymia (...) in a relatively homogeneous sample of heroin dependent individuals and healthy controls and to examine group differences in the pattern of associations between these constructs. Methods: We examined 62 participants (31 heroin dependent individuals and 31 healthy controls) with the Psychopathy Checklist: Screening version (PCL:SV, Hart et al., 1995) and the Toronto Alexithymia Scale-20 (TAS-20, Bagby et al., 1994). Results: Heroin dependent individuals were characterized by higher levels of both psychopathy and alexithymia as compared to the control group. In addition, heroin dependent individuals with higher levels of psychopathy reported more difficulties in identifying and verbalizing emotional states. In the heroin group, alexithymia was more strongly associated with the impulsive/antisocial characteristics (impulsivity, irresponsibility, antisocial behavior) than with the interpersonal/affective features of psychopathy (grandiosity, manipulativeness, lack of empathy and remorse). Conclusions: Our findings suggest that alexithymia may be one potential mechanism linking psychopathy with opioid use disorders. The development of interventions targeting alexithymia could have significant applications in relapse prevention programs and psychotherapy of substance use disorders with concurrent psychopathy. (shrink)

Hoarding disorder is a psychiatric condition characterized by difficulty discarding items and accumulation of clutter. Although studies have established the negative impact of HD and compulsive hoarding behavior, fewer have examined the impact on quality of life of hoarding behavior independent of obsessive–compulsive disorder. Moreover, specific aspects of QoL such as success in work/academics or satisfaction with interpersonal relationships have not been well-investigated. In this study, we examined, in a sample of 2100 adult participants obtained from Amazon Mechanical Turk, the (...) relationships between hoarding, OCD, and depression symptomatology and four QoL domains derived from a factor analysis of the Quality of Life Inventory. We performed linear regressions to examine associations between psychiatric symptomatology and QoL domains and then conducted mediation analyses to investigate the role of depressive symptomatology in the identified relationships. We found that while hoarding and obsessive–compulsive symptoms were both negatively associated with QoL, they were associated with different domains [hoarding was significantly associated, and was less strongly associated with success or enrichment. Mediation analyses confirmed the role of depression as a complete mediator of hoarding’s effect on total, environment, and family QoL, and as a partial mediator of hoarding’s effect on success and enrichment QoL. Further examination of the relationship between hoarding symptoms and QoL in those with mild, moderate, and severe depression indicated that in those with more severe depression, hoarding was associated with improved QoL, indicating a possible buffering or compensatory effect. The findings suggest a differential impact of hoarding and obsessive–compulsive symptoms on QoL and emphasize the importance of considering co-morbid depressive symptoms in designing more targeted interventions. Future studies should continue to investigate these complex relationships, given the high co-morbidity of hoarding and depression. (shrink)

As crucial interface organs gut and skin have much in common. Therefore it is unsurprising that several gut pathologies have skin co‐morbidities. Nevertheless, the reason for this remains ill explored, and neither mainstream gastroenterology nor dermatology research have systematically investigated the ‘gut‐skin axis'. Here, in reviewing the field, we propose several mechanistic levels on which gut and skin may interact under physiological and pathological circumstances. We focus on the gut microbiota, with its huge metabolic capacity, and the role of dietary (...) components as potential principle actors along the gut‐skin axis. We suggest that metabolites from either the diet or the microbiota are skin accessible. After defining open key questions around the nature of these metabolites, how they are sensed, and which cutaneous changes they can induce, we propose that understanding of these pathways will lead to novel therapeutic strategies based on targeting one organ to improve the health of the other. (shrink)

A new etiological model is proposed for schizophrenia that combines variability‐enhancing nonspecific factors acting during development with more specific risk factors. This model is better suited than the current etiological models of schizophrenia, based on the risk factors paradigm, for predicting and/or explaining several important findings about schizophrenia: high co‐morbidity rates, low specificity of many risk factors, and persistence in the population of the associated genetic polymorphisms. Compared with similar models, e.g., de‐canalization, common psychopathology factor, sexual‐selection, or differential sensitivity (...) to the environment, this proposal is more general and integrative. Recently developed research methods have proven the existence of genetic and environmental factors that enhance developmental variability. Applying such methods to newly collected or already available data can allow for testing the hypotheses upon which this model is built. If validated, this model may change the understanding of the etiology of schizophrenia, the research models, and preventionbrk paradigms. (shrink)

Intimate partner violence is an important problem that has significant detrimental effects on the wellbeing of female victims. The chronic physical and psychological effects of intimate partner violence are complex, long-lasting, chronic, and require treatments focusing on improving mental health issues, safety, and support. Various psycho-social intervention programs are being implemented to improve survivor wellbeing. However, little is known about the effectiveness of different treatments on IPV survivors' wellbeing. For this purpose, we conducted a systematic review and meta-analysis to assess (...) the effectiveness of interventions on improving outcomes that describe the wellbeing of adult female survivors of IPV. We searched PubMed, PsycINFO, and Cochrane Library. We explored the effectiveness of available interventions on multiple outcomes that are critical for the wellbeing of adult female victims of IPV. To provide a broad and comprehensive view of survivors' wellbeing, we considered outcomes including mental health, physical health, diminishing further violence, social support, safety, self-efficacy, and quality of life. We reviewed 2,770 citations. Among these 25 randomized-controlled-study with a total of 4,683 participants met inclusion criteria. Findings of meta-analyses on interventions indicated promising results in improving anxiety [standardized mean difference −7.15, 95% confidence interval −8.39 to −5.92], depression, safety, violence prevention, health, self-esteem, social support, and stress management at the post-test. We found that empowerment plays a vital role, especially when treating depression and Post-Traumatic Stress Disorder, which are difficult to improve across interventions. We found mixed findings on self-efficacy and quality of life. The effects of IPV are long-lasting and require treatments targeting co-morbid issues including improving safety and mental health issues. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Close Enemies: The Relationship of Psychiatry and Psychology in the Assessment of Mental DisordersPhilippe Le Moigne, PhDAs Peter Zachar rightly points out in his comment, the assessment of mental disorders underwent new developments with the release of the Diagnostic and Statistical Manual of Mental Disorders-V in 2013 (American Psychiatric Association, 2013). Whereas in 1980, the manual had been thought of in a rigorously categorical way, on the basis of (...) distinct and closed syndromic entities, this new version advocated the development of a radically dimensionalist approach, with the diagnosis aiming this time to restore the whole symptomatological picture of the patient on a spectrum of ratings are supposed to cover the entirety of psychiatric semiology (American Psychiatric Association, 2013).For its part, my article aimed to show how standardized assessment, guided by the return of psychiatry’s authority and the assertion of its legitimacy in the diagnostic field, gave the ascendancy in the 1980s to the classificatory tradition and thus to the categorical model, to the detriment of personality approach and test psychology which offered a competing solution here. This perspective, historically dated, may have led the reader to think that there is an antagonism that cannot be overcome here. Rather, it should be seen as a form of structuring opposition, or even a “complementarity inscribed in rivalry,” between psychiatry and psychology, which is naturally susceptible to change over time.Indeed, the reversal operated by the Diagnostic and Statistical Manual of Mental Disorders-V is not total because it cannot be total. The defense of the dimensionalist approach, dear to the psychological testing tradition, was intended here to allow the identification of co-morbidities, present in most patients but poorly apprehended by the categorical approach, and to open up diagnosis to prevention by screening for minor manifestations of psychopathology when they suggest the [End Page 259] development of a manifest episode of the disease in the more or less long term. The risk here is that we end up with overdiagnosis and thus an over-representation of false positives (Wakefield, 2015). In other words, this type of approach does not escape the obligation to determine threshold scores, likely to indicate the lower limit of the disorder, and thus to resort to a categorical approach. There is a first affinity between the two perspectives which obeys, beyond the divergences in principle, a technical requirement.But the two approaches have even more in common when we look at their epistemological background: they share the idea that the representation and the intervention on mental disorder, to use Ian Hacking’s expression (1983), must be based on the model proposed by the physical and natural sciences. And as Greta Kaluzeviciute aptly points out in her comment, this orientation leads to the idea of measuring mental disorder in particular to conduct elaborate quantification operations to determine, for example, whether two entities are statistically distinct or whether a drug has a significant effect on the evolution of a pathology.This is in fact an old question that can be formulated as follows, to use the expression of the psychometrician Joel Michell (1999): are psychological dimensions metric? In other words, if we want to apply the language of numbers to mental disorders, they must share its properties, two of which seem essential: it must be possible to establish that each mental disorder, in the same way as qualities attributable to length for example, has a zero and can be divided by means of gradients (or degrees of intensity) whose interval is constant (Le Moigne, 2018; Michell, 1999). For lack of space, let us only address the second condition. This one has already been denied by many, starting with Bergson at the end of the nineteenth century (1889). He does not believe in the quantification of psychological expressions, starting with sensations. What is the common point, he wrote, between the feeling of a mild pain, as one feels a stiffness, and the sensation of a needle being hammered into your flesh? For him, one and the other of these intensities are incomparable, so that they do not belong to a similar register of sensations that one could stage from a 0 toward a... (shrink)

This paper defends the idea that alterations in social perception of people with epilepsy may be crucial in the development of co-morbidities, involving a circular and mutual relationship between the person and her/his social environment, between the self and the world. We aim at exploring the role of these processes in psychopathological phenomena in people with epilepsy. Through a phenomenological and enactive account of intersubjectivity and the model of circular causality, enriched with interviews conducted with people with epilepsy, we develop (...) the hypothesis that the originary domain of a person’s experience with epilepsy expands and modifies the fundamental interrogation of the sense of self. Furthermore, we observe how disturbances in the dynamical coupling and coordination among agents may contribute to psychopathological phenomena, and to changes in intersubjectivity and social perception. (shrink)

_Aims:_ Cognitive and behavioral treatments (CBT) for sleep problems and chronic pain have shown good results, although these results could improve. More recent developments based on the psychological flexibility model, the model underlying Acceptance and Commitment Therapy (ACT) may offer a useful addition to traditional CBT. The aim of this study was to examine whether an ACT-based treatment for chronic pain is associated with improved sleep. Secondly, we examined the associations between changes on measures of psychological flexibility and sleep-related outcomes. (...) _Methods:_ The study used an observational cohort methodology. Participants were 252 patients (73.8% female) attending a 4-week, interdisciplinary, pain management program in London, United Kingdom. Participants completed standard self-report measures of pain and functioning, sleep outcomes, and processes of psychological flexibility. Pre- to post-treatment, and pre-treatment to follow-up measures were examined for statistically significant differences using paired samples t -tests. Secondarily, hierarchical multiple regression analyses were conducted to examine change in process measures in relation to change in treatment outcome. _Results:_ Participants showed statistically significant improvements (all p d = 0.45), sleep interference ( d = 0.61), and sleep efficiency ( d = 0.32). Significant improvements in insomnia severity and sleep interference were also observed at 9-month follow up. Small to medium effect sizes were observed across the sleep outcomes. Statistically significant changes were also observed on measures of psychological flexibility, and these improvements were significantly associated with improvements on sleep-related outcomes, independently contributing up to 19% of unique variance. _Conclusion:_ This study supports the potential usefulness of ACT-based treatments for chronic pain for addressing co-occurring sleep difficulties. Further research is needed to determine how to improve the impact of this treatment for co-morbid pain and sleep difficulties, possibly using a randomized-controlled trial design. (shrink)

We propose the “microbiota‐inflammasome” hypothesis of major depressive disorder (MDD, a mental illness affecting the way a person feels and thinks, characterized by long‐lasting feelings of sadness). We hypothesize that pathological shifts in gut microbiota composition (dysbiosis) caused by stress and gut conditions result in the upregulation of pro‐inflammatory pathways mediated by the Nod‐like receptors family pyrin domain containing 3 (NLRP3) inflammasome (an intracellular platform involved in the activation of inflammatory processes). This upregulation exacerbates depressive symptomatology and further compounds gut (...) dysbiosis. In this review we describe MDD/chronic stress‐induced changes in: 1) NLRP3 inflammasome; 2) gut microbiota; and 3) metabolic pathways; and how inflammasome signaling may affect depressive‐like behavior and gut microbiota composition. The implication is that novel therapeutic strategies could emerge for MDD and co‐morbid conditions. A number of testable predictions surface from this microbiota‐gut‐inflammasome‐brain hypothesis of MDD, using approaches that modulate gut microbiota composition via inflammasome modulation, fecal microbiota transplantation, psychobiotics supplementation, or dietary change. (shrink)

Philosophers of science have recently called for experts-by-experience to be involved in revising psychiatric diagnoses. They argue that experts-by-experience can have relevant knowledge which is important for considering potential modifications to psychiatric diagnoses. I show how altering one diagnosis can impact individuals with a different diagnosis. For example, altering autism can impact individuals diagnosed with Attention Deficit Hyperactivity Disorder and Schizoid Personality Disorder through co-morbidity and differential diagnostic criteria. Altering autism can impact the population making up the diagnosis of Attention (...) Deficit Hyperactivity Disorder and Schizoid Personality Disorder which can then influence which behaviour each diagnosis covers and which parts of the causal structure each diagnosis covers. Expanding one diagnosis can mean, if differential diagnostic criteria are present, that individuals who have a different diagnosis, or would one day have been diagnosed with that different diagnosis, are instead now diagnosed with the expanded diagnosis. Alternatively, if two diagnoses can be co-morbid then expanding one diagnosis can mean individuals who have a different diagnosis can now also receive the expanded diagnosis. Changing these can then impact the adequacy of symptoms formulated to cover behaviour and causal mechanisms formulated to cover the causal structure. This means experts-by-experience representing a range of diagnoses should be involved in decisions over modifying diagnoses they do not have. For example, Attention Deficit Hyperactivity Disorder individuals should be involved in decisions to modify autism. I discuss practical issues relating to how much say people with a range of diagnoses should have in relation to modifying a diagnosis which they do not have. We should employ a principle of equality whereby the level of say individuals with one diagnosis should have on another diagnosis should be equally reciprocated. (shrink)

Working memory deficits are pervasive co-morbidities of epilepsy. Although the pathophysiological mechanisms underpinning these impairments remain elusive, it is thought that WM depends on oscillatory interactions within and between nodes of large-scale functional networks. These include the hippocampus and default mode network as well as the prefrontal cortex and frontoparietal central executive network. Here, we review the functional roles of neural oscillations in subserving WM and the putative mechanisms by which epilepsy disrupts normative activity, leading to aberrant oscillatory signatures. We (...) highlight the particular role of interictal epileptic activity, including interictal epileptiform discharges and high frequency oscillations in WM deficits. We also discuss the translational opportunities presented by greater understanding of the oscillatory basis of WM function and dysfunction in epilepsy, including potential targets for neuromodulation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionParenting Children with Autism Spectrum Disorders During the Transition to AdulthoodKelly Dineen and Margaret Bultas, Symposium EditorsThis issue of Narrative Inquiry in Bioethics is devoted to the personal stories of parents or guardians whose children with ASDs are transitioning or have transitioned to adulthood. The same parents who navigated the educational and health systems with little support twenty years ago once again find themselves as pioneers in somewhat unchartered (...) territory. Transition to adulthood, again, presents new terrain without well–defined parameters or reliable expectations for individuals with ASD and the parents who support them. At current, very little has been studied or written about the unique perspectives of parents during transition. What does exist suggests that parents of individuals with autism perceive their experiences as novel, even as compared with parents of children with other kinds of disabilities (Woodgate, Ateach, & Secco, 2008).One in 88 children is estimated to have an autism spectrum disorder (ASD) in 2012, a 78% increase since 2007 (Centers for Disease Control and Prevention, 2012). Although a variety of factors are certainly involved, the rate of diagnosis of individuals with ASDs has increased dramatically over the last twenty years and by all accounts the level and quality of support in health and social systems have lagged behind.While support and interventions have progressed significantly over time, attention on older populations has played a secondary role to early interventions. The proliferation of young people with ASD has outpaced supportive efforts at all levels. ASDs are usually diagnosed in childhood and funding for and access to research and interventions for children have resulted from, in no small part, the zealous efforts of parents. As this growing population of individuals with ASDs transitions to adulthood, finding appropriate supports and interventions have proven more elusive and more complicated. The hallmark symptoms of ASDs include social skill deficits and communication and behavioral difficulties—all traits that especially strain typical teenage and young adult relationships. Recent research backs up these difficulties and indicates that individuals with ASDs fare relatively poorly in traditional measures of independence such as employment, education and social relationships. Parents like the authors in this symposium continue to work to help their teenage and adult children navigate the demands, challenges and rewards of adulthood and independence with all its uncertainties and surprises.The editors of this issue of Narrative Inquiry in Bioethics solicited the personal stories of the parents who have navigated this transition. The call for stories was distributed to autism awareness groups, autism list–serves, bloggers, and social media outlets. Personal appeals to thought leaders and advocacy groups to distribute the call for stories also produced a number of responses. The [End Page 147] people and organizations that passed along our request and responded are too numerous to list here but our gratitude is sincere: their help made this issue possible.We hope the stories will give readers a sense of what parents find rewarding as well as especially challenging during this time and what actions and supports make a difference for the better. Stories about any aspect of the transition were welcome, ranging from navigating the health system to issues surrounding romantic relationships. We welcomed parents’ thoughts on any topic, including gender, level of function, provider behavior, stigma, friendship, services (existing or needed), decision making, independent living, co–morbidities, expectations, work, school or relationships.These topics and more emerged. Stories primarily came from mothers; however one father and one uncle also contributed. Consistent with diagnostic trends, most tell stories of parenting young men. The 12 stories that were selected for this edition represent just a fraction of the diverse set of issues, needs and commonalities of this growing population of adults. We received more stories than we could put in print. Twelve were selected to represent a range of experiences. Many other stories were so powerful that they will appear on–line in the Project MUSE edition of the journal.Commentators also represent a diverse group of professionals whose work includes direct care and support of individuals with ASD and their families, education, research, scholarship and advocacy. Some of our commentators also have a child or a loved one with ASD.Patricia Bashe... (shrink)

Objectives: Posttraumatic stress disorder symptoms (PTSD) following past trauma could lead to psychological distress. Little is known, however, about the roles of defense mechanisms and alexithymia may play in the process. The current study aimed to examine the potential impact of alexithymia and defense mechanisms on the relationship between past trauma and distress among Chinese university students. Method: 455 university students completed a set of questionnaires: PTSD Checklists for DSM-5, Toronto Alexithymia Scale, Defense Style Questionnaire, and General Health Questionnaire-28. Results: (...) PTSD following past trauma was associated with increased psychological distress. Alexithymia and defenses (especially immature defense) mediated the path between PTSD and psychological co-morbidities. Conclusions: Following past trauma, people developed PTSD and other psychological symptoms. The severity of these distress symptoms was influenced by the way people defended themselves psychologically, as well as their ability to identify, express, and process distressing emotions. (shrink)

Surgeons are in a unique position, serving as gatekeepers to the operating room. They determine if operations are possible, are indicated, and have a reasonable risk–to–benefit profile. When an operation is indicated and the patient is amenable to it, the conversation between surgeon and patient is usually straightforward. On the other hand, when a patient’s co–morbidities substantially increase the risk of operative intervention, surgeons often question the utility of offering their services. These situations become immensely more difficult when patients have (...) the expectation of being offered surgical treatment. This case describes the clinical encounter between an endocrine surgeon and an 83–year–old woman who has been incidentally found to have adrenal metastasis from melanoma. The patient wants an operation that the surgeon is reluctant to offer because of her frailty and high operative risk. The case focuses on the ethical dilemma that arises when a patient wants an operation that a surgeon does not want to perform. I was the resident in the endocrine surgery clinic the day that Ms. M came in. Given my background in bioethics, the attending physician told me about the patient’s history beforehand and asked for advice on how to approach the clinical encounter. I then accompanied him into her room to talk with her and her husband. (shrink)

Anorexia nervosa, a disorder of voluntary food restriction leading to severe weight loss in female adolescents, remains an enigma. In particular, the appropriation of the starved thin body into the self-concept in AN is a process insufficiently researched and still poorly understood. Healthy humans undergoing starvation experience a slowing of movements and avoid voluntary exercise. By contrast, AN tends to be not infrequently associated with voluntary, sometimes excessive and/or compulsive exercise. Such deliberate exercise, not reported in starvation, seems to be (...) facilitated by an increased urge for movement and physical restlessness, particular to AN. The increased urge to move would reflect spontaneous daily activity, the energy expended for everything that is not sleeping, eating, or voluntary exercise. Our hypothesis is that the starvation-induced increased urge to move and restlessness may promote the development of AN. Reversal of the fasting state, by either high caloric food or by leptin administration, would be expected to reduce restlessness and the increased urge to move along with improvement in other symptoms in AN. This review explores the idea that such restless activation in AN, in itself and through accelerating body weight loss, might foster the integration of the starving body into the self-concept by enhancing the person’s sense of self-control and sense of achievement and through invigorating proprioception and through intensifying the perception of the changing body shape. Tentative evidence from studies piloting leptin administration in chronic AN patients which support this hypothesis is reviewed. The findings show that short term administration of high doses of leptin indeed mitigated depressive feelings, inner tension, intrusive thoughts of food, and the increased urge to be physically active, easing the way to recovery, yet had little influence on the patients’ personal commitment to remain at a low weight. Full recovery then requires resolution of the individuals’ personal unresolved psychological conflicts through psychotherapy and frequently needs specialized treatment approaches to address psychiatric co-morbidities. AN might be conceptualized as a hereditary form of starvation resistance, facilitated by the effects of starvation on fitness allowing for an exceptionally intense personal commitment to perpetuate food restriction. (shrink)

How might the psycho-social effects of chronic skin disease, its treatments (and discontents) be figuratively expressed in writing and painting? Does the art reveal common denominators in experience and representation? If so, how do we understand the cryptic language of these expressions? By examining the works of artists with chronic skin diseases—John Updike, Elizabeth Bishop, and Zelda Fitzgerald—some common features can be noted. Chronically broken skin can fracture the ego or self-perception, resulting in a disturbed body image, which leads to (...) personality disorders and co-morbid affective disorders such as anxiety and depression. The vertiginous feeling that results can be noted in the paradoxical characters, figures, and psyches portrayed in the works of these artists. This essay will examine the more specific ways in which artists disclose and/or conceal their experiences and the particular ways in which these manifest in their works. While certain nuances exist, the common denominators give us a starting point for developing an eczema aesthetic, a code for interpreting the ways in which artists’ experiences with skin disease manifest in their works. (shrink)

BackgroundDepression is common psychiatric morbidity in breast cancer survivors, seriously affecting patients’ quality of life and mental health. A growing body of research has investigated depression in breast cancer. However, no visual bibliometric analysis was conducted in this field. This study aimed to visualize the literature to identify hotspots and frontiers in research on breast cancer and depression.MethodsThe publications related to depression in breast cancer were retrieved in the Web of Science Core Collection between 1 January 2002 and 17 March (...) 2022. VOSviewer was used to identify co-occurrences and collaborations among countries, institutions, and keywords. CiteSpace was used to detect keyword bursts.ResultsA total of 7,350 articles and reviews related to depression in breast cancer were identified. From 2002 to 2022, the United States and the People’s Republic of China were the most productive countries in this field. The University of California, Los Angeles, and the University of Toronto were the most productive institutions in this field. The Journal of Psycho-oncology, followed by Supportive Care in Cancer and the Journal of Clinical Oncology, had the most publications on depression in breast cancer. Of the top 10 journals, seven were from the United States, two were from England, and one was from Germany. Five research hotspots of depression in breast cancer were identified by co-word analysis. Research on post-traumatic growth, spiritual interventions, cognitive-behavioral therapy, physical activity, and symptom cluster management of depression in breast cancer was relatively mature in the core hotspots. Burst detection of keywords on depression in breast cancer showed the latest hotspots, such as mental health, cancer survivor mortality, and activity.ConclusionThe research on depression in breast cancer is growing. Attention should be paid to the latest hotspots, such as mental health, cancer survivor, mortality, exercise, and physical activity. (shrink)

Vaccine refusal occurs for a variety of reasons. In this article we examine vaccine refusals that are made on conscientious grounds; that is, for religious, moral, or philosophical reasons. We focus on two questions: first, whether people should be entitled to conscientiously object to vaccination against contagious diseases ; second, if so, to what constraints or requirements should conscientious objection to vaccination be subject. To address these questions, we consider an analogy between CO to vaccination and CO to military service. (...) We argue that conscientious objectors to vaccination should make an appropriate contribution to society in lieu of being vaccinated. The contribution to be made will depend on the severity of the relevant disease, its morbidity, and also the likelihood that vaccine refusal will lead to harm. In particular, the contribution required will depend on whether the rate of CO in a given population threatens herd immunity to the disease in question: for severe or highly contagious diseases, if the population rate of CO becomes high enough to threaten herd immunity, the requirements for CO could become so onerous that CO, though in principle permissible, would be de facto impermissible. (shrink)