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- ItemAbstract concepts and aging: An embodied and grounded perspective(Frontiers Media, 2017-05-22) Borghi, Anna M.; Setti, AnnalisaHow do we represent abstract concepts, as “justice” and “phantasy”? This issue has become hotly debated within embodied and grounded cognition views (for reviews: Pecher et al., 2011; Dove, 2016; Borghi et al., 2017). It is in fact unclear how such views can explain how we represent concepts that do not have single concrete referents and are rather detached from sensory experience (Barsalou, 2003; Binder, 2016). In spite of the increasing interest for this issue, to date evidence on abstract concepts across the lifespan is limited. Assuming that the representation of abstract concepts changes from adulthood to older age, in this paper we discuss how a new embodied and grounded proposal, the Words As social Tools (WAT) view (Borghi and Binkofski, 2014), can explain how abstract concepts are represented by older individuals. More specifically we will advance hypotheses on abstract concepts in aging focusing on WAT, and reinterpret previous findings in light of it. We propose that WAT can account for existing findings and provide a suitable framework to test conceptual knowledge in older adults
- ItemAccuracy of diagnostic testing in primary ciliary dyskinesia(European Respiratory Society, 2016-02-29) Jackson, Claire L.; Behan, Laura; Collins, Samuel A.; Goggin, Patricia M.; Adam, Elizabeth C.; Coles, Janice L.; Evans, Hazel J.; Harris, Amanda; Lackie, Peter; Packham, Samantha; Page, Anton; Thompson, James; Walker, Woolf T.; Kuehni, Claudia; Lucas, Jane S.; Heart of England NHS Foundation Trust; National Institute for Health Research; Wellcome Trust; Seventh Framework ProgrammeDiagnosis of primary ciliary dyskinesia (PCD) lacks a “gold standard” test and is therefore based on combinations of tests including nasal nitric oxide (nNO), high-speed video microscopy analysis (HSVMA), genotyping and transmission electron microscopy (TEM). There are few published data on the accuracy of this approach. Using prospectively collected data from 654 consecutive patients referred for PCD diagnostics we calculated sensitivity and specificity for individual and combination testing strategies. Not all patients underwent all tests. HSVMA had excellent sensitivity and specificity (100% and 93%, respectively). TEM was 100% specific, but 21% of PCD patients had normal ultrastructure. nNO (30 nL·min−1 cut-off) had good sensitivity and specificity (91% and 96%, respectively). Simultaneous testing using HSVMA and TEM was 100% sensitive and 92% specific. In conclusion, combination testing was found to be a highly accurate approach for diagnosing PCD. HSVMA alone has excellent accuracy, but requires significant expertise, and repeated sampling or cell culture is often needed. TEM alone is specific but misses 21% of cases. nNO (≤30 nL·min−1) contributes well to the diagnostic process. In isolation nNO screening at this cut-off would miss ∼10% of cases, but in combination with HSVMA could reduce unnecessary further testing. Standardisation of testing between centres is a future priority.
- ItemAdvancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats(BioMed Central Ltd., 2022-09-11) Dwyer, Andrew A.; Uveges, Melissa; Dockray, Samantha; Smith, Neil; National Institutes of HealthBackground: Rare disease research is hampered in part by the fact that patients are geographically dispersed. Rare disease patient communities are recognized for their use of the internet to learn about their condition and find peer-to-peer support. As such, web-based technologies offer promise for overcoming geographic barriers in rare disease research for many. Qualitative focus groups (FGs) are a widely used methodology used to understand patients and parents/families ‘lived experience’ and unmet needs is important to improve care for rare diseases. It is unclear if web-enabled (virtual) FGs are comparable to traditional in-person approaches. We conducted in-person (n = 3) and virtual (n = 3) FGs with rare disease patients to determine if virtual FGs produce similar results in-person FGs. Results: Three in-person (n = 33 participants) and three virtual (n = 25 participants) FGs were conducted examining attitudes and beliefs regarding genetic testing and family communication of risk. Participants included 30 males, 18 females, and 10 parents/guardians. Two independent investigators identified excerpts (meaningful sections of text) and coded themes/sub-themes using a codebook. Inter-coder agreement across identified excerpts (n = 530) in both FG formats was 844/875 (96.5%). Two additional investigators reviewed coded excerpts and did not identify additional themes/sub-themes—supporting data saturation across FG formats. Virtual FGs accounted for 303/530 (57.2%) of total excerpts and 957/1721 (55.7%) of all identified themes/sub-themes. Formats were similar in terms of overall number of excerpts (101 ± 7.8 vs. 75.7 ± 18.8, p = 0.26) and themes/sub-themes (319 ± 6.1 vs. 254.7 ± 103.6, p = 0.34) between virtual and in-person FGs. However, virtual FGs had significantly more coded excerpts specifically relating to sensitive/intimate topics including ‘attitudes and beliefs’ (n = 320 vs. n = 235, p < 0.001), ‘information and support’ (n = 184 vs. n = 99, p < 0.001), and ‘family communication’ (n = 208 vs. n = 114, p < 0.001). Conclusions: Virtual FGs yielded similar numbers of coded excerpts compared to traditional in-person FGs. Virtual FGs appear to support the relative anonymity of participants, resulting in richer discussion of highly sensitive, intimate topics. Findings support the validity and methodologic rigor of using web-enabled technologies for conducting FGs in rare diseases.
- ItemAgeing: Not only an age-related issue(Elsevier B.V., 2021-09-15) Navarro-Pardo, Esperanza; Suay, Ferran; Murphy, MikeDevelopments in the last century have led to an unprecedented increase in life expectancy. These changes open opportunities for humans to grow and develop in healthy and adaptive ways, adding life to years as well as years to life. There are also challenges, however - as we live longer, a greater number of people will experience chronic illness and disability, often linked to lifestyle factors. The current paper advances an argument that there are fundamental biological sex differences which, sometimes directly and sometime mediated by lifestyle factors, underpin the marked differences in morbidity and mortality that we find between the sexes. Furthermore, we argue that it is necessary to consider sex as a key factor in research on healthy ageing, allowing for the possibility that different patterns exist between males and females, and that therefore different approaches and interventions are required to optimise healthy ageing in both sexes.
- ItemAgency, power and confrontation: the role for socially engaged art in CSCW with rurban communities in support of inclusion(Springer Nature Ltd., 2023-10-07) Murray, Maria; Pantidi, Nadia; McCarthy, John; Munster Technological UniversityRapidly expanding rural communities (often termed ‘rurban’) face complex social challenges around inclusion of newcomers and resulting changes to long-established community identity. Although participatory CSCW provides resources to support rurban social inclusion, complementary approaches may be needed to facilitate potentially uncomfortable creative and political responses to questions of agency, power, inclusion and confrontation. We suggest that socially engaged art (SEA) has the appropriate qualities and track record to complement better known CSCW approaches in these settings. SEA offers a specifically experiential and dialogical approach to community participation in design, where the kinds of interactions made available by SEA can provide a space for a more dissensual participation. As well as introducing SEA and explaining its potential contribution to participatory CSCW, the paper presents a focus group study undertaken in an Irish rurban community, and considers the implications of insights from that study in future SEA-informed CSCW with this community. The focus group analysis highlighted supportive organised community action, queried social encounters in public space, examined misperceptions and poor communication, and problematised the role of powerful organisations in fostering inclusion. SEA-informed design considerations in support of social inclusion in this community include: supporting volunteerism; examining the evolution of community institutions; reimagining interactions in public place; and dispelling misconceptions through building mutual understanding. We propose that the dialogical aesthetic of SEA complements other CSCW approaches by drawing attention to tacit, visceral and emotional experiences; dialogue and conflict in collaborative processes; and increasing participant (including emerging community) agency in enacting alternative possibilities.
- ItemAlexithymia and intolerance of uncertainty predict somatic symptoms in autistic and non-autistic adults(Sage, 2022-07-15) Larkin, Fionnuala; Ralston, Brianna; Dinsdale, Sophie Jayne; Kimura, Sakura; Hayiou-Thomas, Marianna EmmaAutistic people experience heightened rates of physical health problems but may also experience elevated levels of somatic symptoms (e.g. pain, headache, gastrointestinal symptoms) due to psychological factors which are common in autism. This online study sought to compare rates of somatic symptoms (Patient Health Questionnaire-15) in older adolescents and adults who were autistic (n = 51), non-autistic (n = 119) and who suspected they were autistic (n = 32), while controlling for health conditions. We investigated psychological risk factors that may predispose individuals to experience somatic symptoms, including alexithymia (General Alexithymia Factor Score), interoception (Body Awareness Questionnaire) and intolerance of uncertainty (Intolerance of Uncertainty Scale). Diagnosed autistic individuals had higher rates of alexithymia and intolerance of uncertainty. We also found higher somatic symptoms in diagnosed autistic individuals, controlling for mental and physical health. However, hierarchical regression showed that somatic symptoms were predicted by physical and mental health conditions, female gender, alexithymia, and intolerance of uncertainty, regardless of autism status. The results suggest that autistic and non-autistic individuals experience more bodily discomfort in part due to gender, physical and mental health, alexithymia, and difficulty tolerating uncertainty. Implications for mental and physical health care in autism are discussed.
- ItemAllergy to Peanuts imPacting Emotions And Life (APPEAL): The impact of peanut allergy on children, teenagers, adults and caregivers in the UK and Ireland(Public Library of Science, 2022-02-07) Tsoumani, Marina; Regent, Lynne; Warner, Amena; Gallop, Katy; Patel, Ram; Ryan, Robert; Vereda, Andrea; Acaster, Sarah; DunnGalvin, Audrey; Byrne, Aideen; Aimmune TherapeuticsThe Allergy to Peanuts imPacting Emotions And Life study (APPEAL) explored the psychosocial burden of living with self-reported peanut allergy experienced by children, teenagers, adults and caregivers in the UK and Ireland. A two-stage (quantitative survey and qualitative interview [APPEAL-1]), cross-sectional study of the psychosocial burden of peanut allergy (APPEAL-2) was conducted. Quantitative data were evaluated using descriptive statistics and qualitative data were analysed using MAXQDA software. A conceptual model specific to UK and Ireland was developed using the concepts identified during the analysis. A total of 284 adults in the UK and Ireland completed the APPEAL-1 survey and 42 individuals participated in APPEAL-2. Respondents reported that peanut allergy restricts their choices in various situations, especially with regard to choosing food when eating out (87% moderately or severely restricted), choosing where to eat (82%), special occasions (76%) and when buying food from a shop (71%). Fifty-two percent of survey participants and 40% of interview participants reported being bullied because of PA. Psychological impact of peanut allergy included feeling at least moderate levels of frustration (70%), uncertainty (79%), and stress (71%). The qualitative analysis identified three different types of coping strategies (daily monitoring or vigilance, communication and planning) and four main areas of individuals' lives that are impacted by peanut allergy (social activities, relationships, emotions and work [adults and caregivers only]). The extent of the impact reported varied substantially between participants, with some reporting many negative consequences of living with peanut allergy and others feeling it has minimal impact on their health-related quality of life. This large survey and interview study highlight the psychosocial burden of peanut allergy for adults, teenagers, children and caregivers in the UK and Ireland. The analysis demonstrates the wide variation in level of impact of peanut allergy and the unmet need for those individuals who experience a substantial burden from living with peanut allergy.
- ItemAm I lazy, a drama queen or depressed? A pluralistic analysis of participant and researcher data when analysing accounts of depression posted to an Ireland-based website.(Taylor & Francis, 2019-10-17) Dempsey, Maria; Foley, Sarah; Frost, Nollaig; Murphy, Raegan; Willis, Niamh; Robinson, Sarah; Dunn Galvin, Audrey; Veale, Angela; Linehan, Carol; Pantidi, Nadia; McCarthy, JohnThe application of Pluralism in Qualitative Research (PQR) allows for a multi-perspective approach to understanding the nuanced social and psychological phenomenon. The complexity of what it means to qualitatively analyse and respond to sensitive data from the reflexive position of the analyst, is the focus of this paper. We introduce previous work in pluralism, and data from ReachOut.com, an online resource for young people in need of mental health advice in Ireland. We present our analysis of the posts from ReachOut.com which conveys the varied understandings of depression, from a medically understood illness, to a socially constructed lived experience. Analysis of the reflexive positioning of our group of experienced qualitative researchers highlights the need for support for those who engage with such data. Our findings reflect the outcomes and experience of using pluralism to examine mental health concerns which require further social, cultural and technological responses.
- ItemAPPEAL‐1: A multiple country European survey assessing the psychosocial impact of peanut allergy(John Wiley & Sons, Inc., 2020-05-13) Dunn Galvin, Audrey; Blumchen, Katharina; Timmermans, Frans; Regent, Lynne; Schnadt, Sabine; Podestà, Marcia; Sánchez, Ángel; Couratier, Pascale; Feeney, Mary; Hjorth, Betina; Patel, Ram; Lush, Tessa; Ryan, Robert; Vereda, Andrea; Fernández‐Rivas, Montserrat; Fisher, Helen R.; Aimmune Therapeutics, United StatesBackground: Peanut allergy (PA) is a common, potentially life‐threatening, and typically lifelong condition with a significant burden of illness. However, information is lacking on how persons with PA (PwPA) and their caregivers perceive the psychosocial impact of living with PA. The Allergy to Peanuts imPacting Emotions And Life study 1 (APPEAL‐1) survey, conducted across Europe, investigated the experience and impact of living with PA. Here, we report data evaluating the psychosocial impact of PA on PwPA and their caregivers. Methods: APPEAL‐1 was an online survey conducted in 8 European countries. Representatives of 8 patient advocacy groups and 5 healthcare‐research specialists developed the survey. Eligible respondent groups included: adults diagnosed with PA (self‐report); parent/nonparent caregivers (proxy‐report for a child with PA); and parent/nonparent caregivers (self‐report of PA impact on themselves). Results: Of 1846 total study respondents, 419 were adults with PA (self‐report); 546 were parents/ caregivers (proxy‐report) ; 881 were parents/caregivers (self‐report). Most respondents reported lifestyle restrictions regarding food (84‐93%) and additional domains including parties and socializing, holiday activities and destinations, and taking public transport (53‐89%). Approximately 40% rated themselves as “very” frustrated and “very” stressed. Two‐thirds (65%) felt socially isolated; 43% were bullied. Less than half felt confident in knowing when to use an adrenaline autoinjector. Several intercountry differences were observed such as high levels of uncertainty and stress in respondents from Ireland, highest rates of anxiety in respondents from Germany, and social exclusion and isolation most common in respondents from France. Conclusions: PA imposes an adverse psychosocial impact on patients and caregivers, leading to frustration, stress, and isolation. Attention to the impact of PA is needed in research and clinical practice to improve PA healthcare and public education programs.
- ItemAPPEAL‐1: A pan-European survey of patient/caregiver perceptions of peanut allergy management(John Wiley & Sons, Inc., 2020-05-21) Blumchen, Katharina; Dunn Galvin, Audrey; Timmermans, Frans; Regent, Lynne; Schnadt, Sabine; Podestà, Marcia; Sánchez, Angel; Couratier, Pascale; Feeney, Mary; Hjorth, Betina; Patel, Ram; Lush, Tessa; Ryan, Robert; Vereda, Andrea; Fisher, Helen R.; Fernández-Rivas, Montserrat; Aimmune Therapeutics, United StatesBackground: Peanut allergy (PA) is associated with marked quality‐of‐life (QoL) impairment. However, data are lacking on the experience and impact of living with PA from the perspectives of persons with PA (PwPA) and their caregivers. A llergy to P eanuts imP acting E motions A nd L ife study 1 (APPEAL‐1) was a pan‐European survey investigating these perspectives. This first of two articles reports clinical characteristics of PwPA and PA management practices. Methods: APPEAL‐1 was a quantitative, online survey conducted in eight European countries, developed by eight representatives of patient advocacy groups and five healthcare professionals and researchers. Eligible participants included adults with PA and parents/caregivers of PwPA who responded by self‐report and provided proxy‐report for the PwPA under their care. Data were summarised using nonweighted descriptive statistics. Results: Of 1846 completed/analysed questionnaires, 528 were from adults with PA (self‐report); 437 by proxy for children with PA (34 aged 0‐3 years, 287 aged 4‐12 years, 116 aged 13‐17 years); 881 from parents/caregivers (self‐report). Of PwPA (N=965), 95% reported diagnosis by healthcare professionals, mostly by clinical history and peanut‐specific allergy testing. Rates of allergic rhinitis, asthma, and other food allergies in PwPA were 50%, 42%, and 79%, respectively. Only 31% of PwPA received HCP advice/support following their worst allergic reaction, and 28% had not been prescribed an adrenaline auto‐injector. Results were similar by country but varied by age group. Conclusions: The APPEAL‐1 findings contribute to greater understanding of PA impact on PwPA, caregivers, and family members and the need for improved PA management across Europe.
- ItemAre exergames exercise? A scoping review of the short-term effects of exertion games(Institute of Electrical and Electronics Engineers (IEEE), 2020-05-18) Marshall, Joe; Linehan, Conor; Engineering and Physical Sciences Research CouncilBackground: Exertion games are video games that require exercise. They are widely presented as health interventions, to encourage sedentary populations to take exercise at levels recommended by health professionals. Objectives: We consider whether games encourage acute exercise at levels sufficient to engender exercise-related health benefits, and in what conditions that occurs. Methods: In this article, we performed a scoping review of empirical research that examines whether exertion game play engenders exercise, searching Google Scholar, Scopus, and PubMed. Results: From 3171 search records, we found 243 studies of acute short-term exercise in games. While some observed moderate levels of exertion, players of many games fail to meet recommended levels. Few games encouraged vigorous levels seen in sports. Variation in results for games across different studies suggests that exertion motivation is highly dependent on nongame contextual factors. There is evidence games make exercise more enjoyable or reduce perceived exertion, but many studies suffer the methodological problem of comparison with boring control conditions. Conclusions: Exergames have only been found comparable to exercise such as walking, jogging, and dancing under very specific circumstances. To improve evidence for games as exercise interventions, we must improve study designs and focus on understanding better the circumstances likely to bring about genuine exergame exercise.
- ItemAsexual identity development and internalisation: a scoping review of quantitative and qualitative evidence(Taylor & Francis, 2022-03-23) Kelleher, Sinéad; Murphy, Mike; Su, XinIndividuals who do not experience sexual attraction and adopt an asexual identity are the focus of increasing amounts of psychological and sociological research. A scoping review was conducted to identify current knowledge of asexuality and components of asexual identity development and internalisation that emerge within literature. Findings from 29 articles were analysed and formed into themes that best describe the key events and sense-making processes underlying identity development, such as coming-out, the reactions of others and how asexuals interpret their identity. These findings indicate that heteronormativity and compulsory sexuality play a role in how individuals internalise their asexuality, which in turn, shapes their identity development. Despite this, considerable gaps in the literature concerning partner relationships, stigmatisation, isolation and the impact that this has on asexuals’ wellbeing continue to exist. Thus, future research should examine the challenges faced by asexuals such as identity development within a heteronormative and allonormative context and the resources available to ameliorate them.
- ItemAssessing efficiency of prompts based on earner characteristics(MDPI, 2017-02-10) Backhaus, Joy; Jeske, Debora; Poinstingl, Herbert; Koenig, SarahPersonalized prompting research has shown the significant learning benefit of prompting. The current paper outlines and examines a personalized prompting approach aimed at eliminating performance differences on the basis of a number of learner characteristics (capturing learning strategies and traits). The learner characteristics of interest were the need for cognition, work effort, computer self-efficacy, the use of surface learning, and the learner’s confidence in their learning. The approach was tested in two e-modules, using similar assessment forms (experimental n = 413; control group n = 243). Several prompts which corresponded to the learner characteristics were implemented, including an explanation prompt, a motivation prompt, a strategy prompt, and an assessment prompt. All learning characteristics were significant correlates of at least one of the outcome measures (test performance, errors, and omissions). However, only the assessment prompt increased test performance. On this basis, and drawing upon the testing effect, this prompt may be a particularly promising option to increase performance in e-learning and similar personalized systems.
- ItemAssessing the comprehensiveness of the Co-operative Performance Metric: A mixed-method analysis using Portal 2(Springer Nature Switzerland AG, 2022-06-16) Gorman, Gregory; Linehan, Conor; Fang, XiaowenThe Co-operative Performance Metric (CPM) is the only existing tool for evaluating co-located game play experiences but has not yet been extensively studied. To observe how effectively the CPM captured co-located and co-operative player behaviour, this study investigates the comprehensiveness of the CPM by comparing a CPM analysis of co-located gameplay with a much more time-consuming video ethnographic analysis. Five pairs of participants played the puzzle game Portal 2 for one hour, while their interactions were video recorded and analysed. Results indicate that the CPM successfully captures many co-operative behaviours relating to player experience, with some exceptions. The most important missing components were the social effects; 1) prior experience playing the game, and 2) whether players were friends. Thus, with some small modifications, the CPM can function as a quick but comprehensive assessment of co-operative player behaviour, social effects, and game genre.
- ItemAttitudes towards feminism predict susceptibility to feminism-related fake news(John Wiley & Sons, Inc., 2021-05-29) Murphy, Gillian; Murray, Emma; Gough, DoireannFalse memories may be especially likely when one is exposed to misinformation that is consistent with one's beliefs. Here, we assessed whether feminist attitudes predict susceptibility to feminism-related fake news. In Experiment 1 (n = 1537), the more negative participants' attitudes towards feminism, the more likely they were to report a false memory for a fabricated event that negatively reflected on the feminist movement, and vice-versa. This effect was only evident for those who interpreted the event as expected (e.g., those who rated the event as bad for feminism). When the purpose of the study was revealed, feminist attitudes also predicted ability to identify the stories as fake. We replicated these findings in Experiment 2 (n = 786), using fake stories that were less ambiguous. This study suggests that individuals are more susceptible to false memories for fake news stories that are ideologically congruent, even after a warning.
- ItemBaby got back: some brief observations on obesity in ancient female figurines: limited support for waist to hip ratio constant as a signal of fertility(OMICS Group, 2013) King, Robert J.Venus figurines such as the famous Willendorf Venus--provide a possible window into the reproductive preferences of ancestral humans. These figurines cover a period of about 20,000 years of human history and have been found across ice-age Europe. There are a number of unknowns about such figurines. For example, they may be votive offerings, idealisations, or have some as-yet, unguessed-at function. Ancient figurines typically display body types typically considered obese by modern standards of medicine and aesthetics. While some have averred that such figurines show a marked change in human body preferences over thousands of years it is possible that this has been an artifact of particular approaches to measuring such figurines. Measuring a fuller extent of the markers of fat deposition seems to support a case for arguing that male preferences have broadly tracked fertility markers over ancestral time. The waist-to-hip ratio is arguably a more important fertility marker than obesity per se and a 0.7 ratio has been found cross-culturally and in this sample. It is likely that such preferences have been further calibrated by local ecological variations for example as regards food supply but these calibrations would not have a great impact on proportionality preferences. Great caution must be taken in reading too much into such a limited sample.
- ItemBenzodiazepine use among young attendees of an Irish substance treatment center(Lippincott, Williams & Wilkins, 2014-05) Murphy, Kevin D.; Byrne, Stephen; McCarthy, Suzanne; Lambert, Sharon; Sahm, Laura J.Objective: To describe the demographic characteristics of those service users attending Matt Talbot Services, and their current and past substance use, and to explore the use of benzodiazepines among this group. Method: There were 198 service users who attended a substance misuse treatment center in Cork, Ireland, between January 2005 and August 2011. Results: Benzodiazepines had ever been used by 51.0%, and of these, 55.8% were regular benzodiazepine users. The mean age of first use was 14.9 ± 1.4 years. Regular users of benzodiazepines were regular users of significantly more substances (3, interquartile range [IQR] = 2-3) when compared with nonregular benzodiazepine users (1, IQR = 1-2). Regular benzodiazepine users showed more behavioral signs (12, IQR = 10-14) than nonregular users (9, IQR = 7-12). Physical signs were significantly different between regular (8, IQR = 6-11) and nonregular (5, IQR = 3-10) users. Conclusions: The effects of benzodiazepine misuse affect the individual, their family, and society as a whole through hospitalization, substance treatment, and crime. Identifying regular benzodiazepine users can help reduce the burden of benzodiazepines.
- ItemBest practices for ethical conduct of misinformation research: A scoping review and critical commentary(Hogrefe, 2022-12-13) Greene, Ciara M.; de Saint Laurent, Constance; Murphy, Gillian; Prike, Toby; Hegarty, Karen; Ecker, Ullrich K. H.Misinformation can have noxious impacts on cognition, fostering the formation of false beliefs, retroactively distorting memory for events, and influencing reasoning and decision-making even after it has been credibly corrected. Researchers investigating the impacts of real-world misinformation are therefore faced with an ethical issue: they must consider the immediate and long-term consequences of exposing participants to false claims. In this paper, we first present an overview of the ethical risks associated with real-world misinformation. We then report results from a scoping review of ethical practices in misinformation research. We investigated (1) the extent to which researchers report the details of their ethical practices, including issues of informed consent and debriefing, and (2) the specific steps that researchers report taking to protect participants from the consequences of misinformation exposure. We found that fewer than 30% of misinformation papers report any debriefing, and almost no authors assessed the effectiveness of their debriefing procedure. Building on the findings from this review, we evaluate the balance of risk versus reward currently operating in this field and propose a set of guidelines for best practices. Our ultimate goat is to allow researchers the freedom to investigate questions of considerable scientific and societal impact white meeting their ethical obligations to participants.
- ItemBias control in bodywork therapies: a review of methodological issues(Mary Ann Liebert Inc., 2005-04) Mehling, Wolf E.; Di Blasi, Zelda; Hecht, FrederickOBJECTIVE: To review and summarize the methodological challenges in clinical trials of bodywork or handson mind-body therapies such as Feldenkrais Method, Alexander Technique, Trager Work, Eutony, Body Awareness Therapy, Breath Therapy, and Rolfing, and to discuss ways these challenges can be addressed. DESIGN: Review and commentary. METHODS: Search of databases PubMed and EMBASE and screening of bibliographies. Published clinical studies were included if they used individual hands-on approaches and a focus on body awareness, and were not based on technical devices. RESULTS: Of the 53 studies identified, 20 fulfilled inclusion criteria. No studies blinded subject to the treatment being given, but 5 used an alternative treatment and blinded participants to differential investigator expectations of efficacy. No study used a credible placebo intervention. No studies reported measures of patient expectations. Patient expectations have been measured in studies of other modalities but not of hands-on mind-body therapies. Options are presented for minimizing investigator and therapist bias and bias from differential patient expectations, and for maintaining some control for nonspecific treatment effects. Practical issues with recruitment and attrition resulting from volunteer bias are addressed. CONCLUSIONS: Rigorous clinical trials of hands-on complementary and alternative therapy interventions are scarce, needed, and feasible. Difficulties with blinding, placebo, and recruitment can be systematically addressed by various methods that minimize the respective biases. The methods suggested here may enhance the rigor of further explanatory trials.