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This study evaluated stakeholders’ perspectives regarding participation in two hypothetical neuromodulation trials focused on individuals with Alzheimer's disease and related disorders (ADRDs). Stakeholders (i.e., individuals at risk for ADRDs [ n = 56], individuals with experience as a caregiver for someone with a cognitive disorder [ n = 60], and comparison respondents [ n = 124]) were recruited via MTurk. Primary outcomes were willingness to enroll (or enroll one's loved one), feeling lucky to have the opportunity to enroll, and feeling obligated to enroll in two protocols (transcranial magnetic stimulation, TMS; deep brain stimulation, DBS). Relative to the Comparison group, the At Risk group endorsed higher levels of “feeling lucky” regarding both research protocols, and higher willingness to participate in the TMS protocol. These findings provide tentative reassurance regarding the nature of decision making regarding neurotechnology-based research on ADRDs. Further work is needed to evaluate the full range of potential influences on research participation.

Empirical studies have found that altruism and self-interest are the two primary motivations for enrollment in clinical trials. Some studies have shown that in some cases these two motivations are contingent upon each other, which complicates our understanding of motivation. In this study, we interviewed 27 people with Parkinson’s disease about their willingness to enroll in a hypothetical clinical trial. Through inductive, grounded theory analysis of the interview transcripts, we find four different contingent relationships between altruism and self-interest. It is important for ethicists to be aware of these more complex motivations because some are ethically problematic and others not. Moreover, practitioners need to be aware of these contingent relationships so that they can understand the motivations of the research participants.

Supplementary data for the paper Tabone, W., Lee, Y.M., Merat, N., Happee, R., & De Winter, J.C.F. (2021). Towards future pedestrian-vehicle interactions: Introducing theoretically-supported AR prototypes.Data includes the code used to build the AR concepts, the supplementary video demonstrating the concepts working in a real environment, and photographs of the concepts operating on an iPad in situ.

“Respect for Persons” is an ethical principle demonstrated through the informed consent process. Participants at a large HIV research center were surveyed to identify important aspects of the consent process. Persons with and without HIV ( n = 103) completed a short pre/post questionnaire with both open-ended and forced choice response options. Qualitative analysis resulted in eleven themes about the most important consent elements which did not differ by HIV serostatus. Overall, participants rated the informed consent content and presentation by research staff as “extremely informative” and found the consent information to be “extremely consistent” with their study experience. Study results support the value of an interactive process and can be used to inform the design of a standardized, digital consent process.

This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer’s disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant’s autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members’ “mandated reporter” status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant’s trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.

Authorship represents a critical element of scientific research. This study evaluated the perceptions, attitudes, and practices of Jordanian researchers toward the International Committee of Medical Journal Editors (ICMJE) authorship criteria. An anonymous questionnaire was distributed to health sciences faculty ( n = 986), with 272 participants completing the questionnaire. Only 27.2% reported awareness of ICMJE guidelines, yet, 76.8% agreed that all ICMJE criteria must be met for authorship, and 55.9% believed that it is easy to apply the guidelines. Unethical authorship practices were reported by 16.5% to 31.3% of participants. A majority (73%) agreed that violation of authorship criteria is scientific misconduct. Well-defined criteria for authorship need to be disseminated and emphasized in less developed countries through training to avoid authorship disputes and unethical conduct.

Burnout among community mental health (CMH) therapists has been associated with poorer therapist health, high agency turnover, poorer client outcomes, and compromised quality of care. Recent mandates to learn and implement multiple evidence-based practices (EBPs) within CMH settings are intended to improve the quality of community care, yet there is mixed evidence concerning the impacts on workforce burnout. The current study sought to identify correlates of therapist emotional exhaustion, a key aspect of burnout, during the sustainment phase of a system-driven implementation of multiple EBPs in children’s mental health services. We hypothesized that high workload and unfavorable organizational climate would relate to therapist emotional exhaustion, but that positive experiences with EBPs adopted would relate to lower exhaustion. Although agency-level indices of organizational climate were unrelated to exhaustion, a multilevel model revealed that therapists’ weekly work hours, caseload, and number of EBPs delivered were associated with increased emotional exhaustion. Additionally, activities associated with the EBP implementation efforts (e.g., hours spent in EBP-related activities, supervision or consultation, or outcome monitoring), were not associated with emotional exhaustion. Therapists’ knowledge and confidence delivering EBPs and their positive perceptions of EBPs were protective against emotional exhaustion, but these perceptions did not buffer the risks associated with heavy workload. Findings point to implementation strategies to prevent burnout and associated turnover that compromise the returns on investments in EBP implementation.

Visual working memory (VWM) is the ability to maintain visual information in a readily available and easily updated state. Converging evidence has revealed that VWM capacity is limited by the number of maintained objects, which is about 3 - 4 for the average human. Recent work suggests that VWM capacity is also limited by the resolution required to maintain objects, which is tied to the objects' inherent complexity. Electroencephalogram (EEG) studies using the Contralateral Delay Activity (CDA) paradigm have revealed that cortical representations of VWM are at a minimum loosely organized like the primary visual system, such that the left side of space is represented in the right hemisphere, and vice versa. Recent functional magnetic resonance imaging (fMRI) work shows that the number of objects is maintained by representations in the inferior intraparietal sulcus (IPS) along dorsal parietal cortex, whereas the resolution of these maintained objects is subserved by the superior IPS and the lateral occipital complex (LOC). These areas overlap with recently-discovered, retinotopically-organized visual field maps (VFMs) spanning the IPS (IPS-0/1/2/3/4/5), and potentially maps in lateral occipital cortex, such as LO-1/2, and/or TO-1/2 (hMT+). Other fMRI studies have implicated early VFMs in posterior occipital cortex, suggesting that visual areas V1-hV4 are recruited to represent information in VWM. Insight into whether and how these VFMs subserve VWM may illuminate the nature of VWM. In addition, understanding the nature of these maps may allow a greater investigation into individual differences among subjects and even between hemispheres within subjects.

Epidemiological Clinicopathological Studies in Europe (EClipSE) is the harmonization of neuropathological and longitudinal clinical data from three population-based prospective longitudinal studies of aging. The EClipSE database (Version 1.0) comprises data from the first 970 people who donated their brain at death and this number will increase. EClipSE enables sociodemographic, health, cognitive, and genetic measures collected during life to be related to neuropathology at death, testing hypotheses which require more power than has been previously possible. EClipSE aims to help throw light on relationships between biological, health and psychological factors underlying ageing and the manifestation of clinical dementia.

Patients with chronic neuropathic pain (non-CRPS) and brush-evoked allodynia watched a reflected image of their corresponding but opposite skin region being brushed in a mirror. Unlike complex regional pain syndrome Type 1, this process did not evoke any sensation at the affected area ('dysynchiria'). We conclude that central nociceptive sensitisation alone is not sufficient to cause dysynchiria in neuropathic pain. The results imply a difference in cortical pain processing between complex regional pain syndrome and other chronic neuropathic pain.

The environmental justice literature has described differential health effects of environmental toxins and pollutants on people of different socio-economic status (SES) that may not always reflect differing levels of exposure. We offer four questions or contentions that together may contribute to understanding this conundrum and then present an empirical exploration of one of these questions: Does the relationship between SES and self-perceived status vary in space? Utilizing data from an original questionnaire survey of randomly selected adults conducted in twenty-five communities in British Columbia, Canada, a supplementary data set containing demographic and socio-economic characteristics of the communities themselves, and multilevel modelling techniques, this article describes relationships between objective and subjective measures of social status, by gender and in space. Our analysis contributes to the development of innovative environmental justice models by bringing some spatial sensitivity to interrelationships among these aspects of status.

Hundreds of thousands of children have had at least 1 parent deploy as part of military operations in Iraq (Operation Iraqi Freedom; OIF; Operation New Dawn; OND) and Afghanistan (Operation Enduring Freedom; OEF). However, there is little knowledge of the impact of deployment on the relationship of parents and their children. This systematic review examines findings from 3 areas of relevant research: the impact of deployment separation on parenting, and children's emotional, behavioral, and health outcomes; the impact of parental mental health symptoms during and after reintegration; and current treatment approaches in veteran and military families. Several trends emerged. First, across all age groups, deployment of a parent may be related to increased emotional and behavioral difficulties for children, including higher rates of health-care visits for psychological problems during deployment. Second, symptoms of PTSD and depression may be related to increased symptomatology in children and problems with parenting during and well after reintegration. Third, although several treatments have been developed to address the needs of military families, most are untested or in the early stages of implementation and evaluation. This body of research suggests several promising avenues for future research.

The purpose of this study was to describe fatigue and the utility of the Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF) to assess fatigue among Latino cancer patients. Twenty-two female and thirteen male Latino cancer patients participated in one of seven focus groups that took place in the southern California USA-Mexico border region. Participants were asked to describe their fatigue experiences; participants also completed the MFSI-SF and provided feedback about the items. Content analyses indicate that there are gender differences in the salience of the challenges that fatigue poses. Men tended to focus on physical symptoms, whereas women tended to focus on the impairment in role fulfillment. Findings have implications for intervention and health education efforts in Latino cancer patients.

Assisting patients to deal with loss is a major, yet unrecognized, role of general practitioners. Although instruments exist for measuring grief resulting from a given loss, such as bereavement, none exists that detects and measures grief from any loss. This study describes the development of the Grief Diagnostic Instrument for this purpose in general practice patients. Evaluation showed it to be a concise, valid, reliable and sensitive measure, and acceptable to general practice patients. The instrument investigates and measures grief from multiple losses rather than a single loss compared to other grief scales. Suggestions have been made for further validation studies. Its use in future grief research and clinical practice are described.

© 2015 Wiley Periodicals, Inc. The purpose of this study was to describe fatigue and the utility of the Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF) to assess fatigue among Latino cancer patients. Twenty-two female and thirteen male Latino cancer patients participated in one of seven focus groups that took place in the southern California USA-Mexico border region. Participants were asked to describe their fatigue experiences; participants also completed the MFSI-SF and provided feedback about the items. Content analyses indicate that there are gender differences in the salience of the challenges that fatigue poses. Men tended to focus on physical symptoms, whereas women tended to focus on the impairment in role fulfillment. Findings have implications for intervention and health education efforts in Latino cancer patients.

Community-based therapists are frequently faced with the complex task of applying existing research knowledge to clients who may differ markedly from those enrolled in controlled outcome studies. The current paper examines the utility of modular psychotherapy design as one method of facilitating the flexible delivery of evidence-based mental health services to ethnically and culturally diverse children and families. Modularity complements existing approaches to the provision of culturally-sensitive, empirically-informed treatment through its ability to balance the prioritization of research evidence and local practitioner cultural knowledge. Specific applications of modular principles to clinical work with diverse youth are highlighted. Special considerations and limitations relevant to modular psychotherapy and the overall mental health services research literature are discussed, as well as the continued importance of individual clinicians' cultural competence and use of treatment progress monitoring, both of which should be combined with identified treatment modules to support the delivery of high-quality care.

Objective: The aim of this research was to assess tertiary student distress levels with regards to (i) comparisons with normative population data, and (ii) the effects of discipline, year level, and student characteristics. Self-reported treatment rates and level of concern regarding perceived distress were also collected. Method: Students from all six years of an undergraduate medical course were compared with samples from Psychology, Law and Mechanical Engineering courses at the University of Adelaide, Australia. Students participated in one of three studies that were either web-based or paper-based. All studies included Kessler's Measure of Psychological Distress (K10), and questions pertaining to treatment for any mental health problems and concern regarding distress experienced. Results: Of the 955 tertiary students who completed the K10, 48% were psychologically distressed (a K10 score ≥ 22) which equated to a rate 4.4 times that of age-matched peers. The non-health disciplines were significantly more distressed than the health disciplines. Distress levels were statistically equivalent across all six years of the medical degree. Of tertiary students, 11% had been treated for a mental health problem. Levels of concern correlated with the K10 score. Conclusion: The results from this research suggest that high distress levels among the tertiary student body may be a phenomenon more widely spread than first thought. Low treatment rates suggest that traditional models of support may be inadequate or not appropriate for tertiary cohorts.

This paper explores the ways in which asylum seekers negotiate their relationship with British locals, who form a majority white indigenous British population in the rural region of East Anglia. Asylum seekers were dispersed to the region from London by a government program where accommodation was more readily available, and access to services could be localised. However, the reception provided by locals was not always welcoming. Fuelled by the media, there was a general negative perception that asylum seekers were linked to terrorism, gang violence and welfare exploitation. This resulted in a fear of violence by asylum seekers and locals, from each other. This paper illustrates that it is very difficult for asylum seekers to engage with locals without ‗giving weight to their cultural background or ethnic normative standards‘ (Fuglerud 1999:105), particularly for those identifiable as Muslim or of Iraqi origin. To locals then, an outsider has ‗no social markers other than [their ―otherness‖] and the fact that they are understood to be ―asylum seekers‖‘ (Fuglerud 1999:105). In response, asylum seekers draw on a situational identity which may circumvent the asylum seeker aspect of their identity according to the context. This paper explores such identity reworking that is evident in the coping mechanisms of blending in and avoiding interactions with locals. These coping mechanisms, employed by asylum seekers, allow them to negotiate their interactions with locals. Refereed/Peer-reviewed

Arousal from sleep is associated with transient and abrupt cardiorespiratory changes, and elevated arousals associated with sleep disorders may trigger adverse cardiovascular sequela. In this paper, we provide the first data in children on cardiorespiratory responses to cortical arousal. Heart rate and ventilatory responses to arousal from stage 2 and rapid eye movement (REM) sleep were investigated in 40 normal, healthy Caucasian children (age: 7.7 ± 2.6 years; body mass index z-score: 0.30 ± 0.8). All children underwent overnight polysomnography studies. Cortical arousals were scored according to standard criteria. Heart rate changes were assessed over 30 s, starting 15 s prior to cortical arousal onset. Breathing rates were quantified three breaths before and after arousal onset. Arousals from stage 2 as well as REM sleep resulted in an R-R interval shortening of about 15%, independent of age and gender. The R-R interval shortening initiated at least 3 s before the cortical arousal onset. The breathing interval immediately after cortical arousal onset was significantly shortened (P < 0.001). In conclusion, cortical arousals in children are associated with an increase in breathing rate and significant heart rate accelerations, which typically precede the cortical arousal onset. Refereed/Peer-reviewed

Rural families can find it difficult to access mental health treatment for children’s conduct problems. The current program was designed to provide immediate assistance to families who faced extended waiting times in the south-eastern region of South Australia. In this collaborative project, a primary care professional delivered a telephone-guided version of a clinically based parent training program (Barkley’s Defiant Children) with program support from mental health services. The 12-week trial included 29 children aged 2–12 years who were referred for disruptive behaviour, attention-deficit hyperactivity and learning difficulties. Children were randomised to either a parent training group or a waiting list control group. Parents in the training program were generally satisfied (Therapy Attitude Inventory overall rating = 4.3 measured on a 5-point Likert scale). The main behavioural measure showed significantly better outcomes for the training program (Eyberg Child Behaviour Inventory (ECBI): Intensity scale (F1,27 = 11.39, P

Summary: This study investigated whether children and adolescents diagnosed with the predominantly inattentive and combined subtypes of attention deficit/hyperactivity disorder (AD/HD-in and AD/HD-com, respectively) differed on psychophysiological indices of working memory updating off- and on-stimulant medication, as compared with control subjects and each other. ERPs were recorded in AD/HD and control participants during a one-back working memory task. The N100 (discrimination), P150 (selection), N300 (memory retrieval), and P450wm (updating) components after nontarget stimuli, which served to update working memory with target identity, were assessed. Premedication abnormalities were obtained for the N300 component, delayed in the child AD/HD-com group, and attenuated in the adolescent AD/HD-in group and P450wm component for all AD/HD groups, expressed as either delayed latency and/or attenuated amplitude. ERP abnormalities were predominantly ameliorated after stimulant medication. There were no psychophysiological differences between the subtypes. A general feature of the disorder relates to a deficit in the conscious updating of working memory systems with newly relevant information (P450wm), which varies with age and subtype. Children with AD/HD-com and adolescents with AD/HD-in also exhibit abnormalities in the retrieval of relevant prior memories (N300). This study indicates that AD/HD is related to abnormalities in the capacity to modulate the content of working memory stores.

The purpose of this study was to assess changes in psychophysiological fitness following reconstructive knee surgery and early phase (2.5 months) physical rehabilitation. Nine patients (7 male, 2 female; mean age, 29.9 years) electing to undergo anterior cruciate ligament reconstructive surgery (central third, bone-patella tendon-bone graft) were assessed on four separate assessment occasions post-surgery. Repeated measures ANOVAs showed significant condition (injured/non-injured leg) by test occasion (2 weeks pre-surgery and 6, 8 and 10 weeks post-surgery) interactions for knee ligamentous compliance (anterior tibiofemoral displacement), peak force and electromechanical delay associated with the knee flexors of the injured and noninjured legs (F3,24 = 4.7 to 6.6; p

Objective This study examines the utility of new measures of event-related spatio-temporal waves in the EEG as a marker of ADHD, previously shown to be closely related to the P3 ERP in an adult sample. Methods Wave activity in the EEG was assessed during both an auditory Oddball and a visual continuous performance task (CPT) for an ADHD group ranging in age from 6 to 18 years and comprising mostly Combined and Inattentive subtypes, and for an age and gender matched control group. Results The ADHD subjects had less wave activity at low frequencies (∼1 Hz) during both tasks. For auditory Oddball targets, this effect was shown to be related to smaller P3 ERP amplitudes. During CPT, the ∼1 Hz wave activity in the ADHD subjects was inversely related to clinical and behavioral measures of hyperactivity and impulsivity. CPT wave activity at ∼1 Hz was seen to “normalise” following treatment with stimulant medication. Conclusions The results identify a deficit in low frequency wave activity as a new marker for ADHD associated with levels of hyperactivity and impulsivity. Significance The marker is evident across a range of tasks and may be specific to ADHD. While lower ∼1 Hz activity partly accounts for reduced P3 ERPs in ADHD, the effect also arises for tasks that do not elicit a P3. Deficits in behavioral inhibition are hypothesized to arise from underlying dysregulation of cortical inhibition.

The current study aimed to investigate whether children and adolescents diagnosed with Attention Deficit/Hyperactivity Disorder Predominantly Inattentive (AD/HD-in; Child n = 24, Adolescent n = 33) and Combined (AD/HD-com; Child n = 30, Adolescent n = 42) subtypes were more distractible than controls (Child n = 54; Adolescents n = 75), by assessing event-related potential (ERP), performance and peripheral arousal measures. All AD/HD groups displayed smaller amplitudes and/or shorter latencies of the P3a ERP component — thought to reflect involuntary attention switching — following task-deviant novel stimuli (checkerboard patterns) embedded in a Working Memory (WM) task. The P3a results suggested that both AD/HD-in and AD/HD-com subtypes ineffectively evaluate deviant stimuli and are hence more "distractible". These abnormalities were most pronounced over the central areas. AD/HD groups did not display any abnormalities in averaged heart rate over the WM task, a measure of peripheral arousal. They did display abnormalities in performance measures from the task, but these were unrelated to P3a abnormalities. AD/HD groups also displayed a number of deficits on Switching of Attention and Verbal Memory tasks, however, the pattern of abnormality mostly reflected general cognitive deficits rather than resulting from distraction.