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1.
Health Commun ; 39(3): 529-540, 2024 Mar.
Article in English | MEDLINE | ID: mdl-36734475

ABSTRACT

This paper focuses on the development and feasibility of a digitally-based educational intervention, titled Recognize & Resist (R&R), for writers of One Direction (1D) fanfiction on Wattpad.com. The goal of R&R is to reduce the prevalence of social norms that are supportive of sexual violence within 1D fanfiction. 1D fanfictions, or fictional romance stories written by fans of this British boy band, have hundreds of millions of views on Wattpad.com. Formative research has found that social norms supportive of sexual violence are prevalent in 1D fanfictions and that some authors have internalized these norms. R&R aims to motivate 1D fanfiction writers to highlight sexual consent and egalitarian gender roles in their writing. To evaluate the intervention's feasibility, 15 1D fanfiction authors completed a survey and participated in an interview or focus group. Results demonstrate R&R's feasibility, with high ratings of its acceptability and demand. Insights from the interviews and focus groups provide suggestions for revising R&R before rigorously evaluating its efficacy. Additionally, results demonstrate the utility of using popular culture as a vehicle for attitude-change regarding sensitive health issues.


Subject(s)
Gender Role , Sex Offenses , Humans , Sexual Behavior , Social Norms , Attitude
2.
Health Expect ; 26(3): 1318-1326, 2023 06.
Article in English | MEDLINE | ID: mdl-36989126

ABSTRACT

INTRODUCTION: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain-organized in a separate work package-included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. METHODS: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. RESULTS: Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. CONCLUSION: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. PUBLIC CONTRIBUTION: Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration.


Subject(s)
Health Services Research , Stakeholder Participation , Humans , Health Services Research/methods , Communication , Translational Research, Biomedical , Brain
3.
Violence Against Women ; 29(9): 1811-1831, 2023 07.
Article in English | MEDLINE | ID: mdl-36214267

ABSTRACT

In the United States, sex-trafficking awareness and prevention has increasingly become part of government-mandated health education. This exploratory study surveyed 250 U.S. adolescents to learn more about the use of media narratives in curricula about sex trafficking in light of research findings about victim-blaming responses to survivor narratives, as well as adolescents' still-developing emotion-regulation skills. Victim blaming is counterproductive to the goals of trafficking awareness and prevention curricula. Participants viewed one of four narrative messages about a sex-trafficking victim/survivor. Over half of participants reported victim-blaming responses after viewing the message. Participants reported low perceived efficacy regarding the ability to recognize the signs of trafficking, and some participants experienced intense fear responses to the messages. Victim blaming was not associated with fear or perceived efficacy, contradicting predictions from the Extended Parallel Process Model. This study concludes with recommendations for educators and others tasked with communicating with adolescents about sex trafficking.


Subject(s)
Crime Victims , Human Trafficking , Humans , Adolescent , United States , Human Trafficking/prevention & control , Narration , Fear , Curriculum
4.
Front Public Health ; 10: 998302, 2022.
Article in English | MEDLINE | ID: mdl-36339192

ABSTRACT

Brain health entails mental wellbeing and cognitive health in the absence of brain disorders. The past decade has seen an explosion of tests, cognitive and biological, to predict various brain conditions, such as Alzheimer's Disease. In line with these current developments, we investigated people's willingness and reasons to-or not to-take a hypothetical brain health test to learn about risk of developing a brain disease, in a cross-sectional multilanguage online survey. The survey was part of the Global Brain Health Survey, open to the public from 4th June 2019 to 31st August 2020. Respondents were largely recruited via European brain councils and research organizations. 27,590 people responded aged 18 years or older and were predominantly women (71%), middle-aged or older (>40 years; 83%), and highly educated (69%). Responses were analyzed to explore the relationship between demographic variables and responses. Results: We found high public interest in brain health testing: over 91% would definitely or probably take a brain health test and 86% would do so even if it gave information about a disease that cannot be treated or prevented. The main reason for taking a test was the ability to respond if one was found to be at risk of brain disease, such as changing lifestyle, seeking counseling or starting treatment. Higher interest in brain health testing was found in men, respondents with lower education levels and those with poor self-reported cognitive health. Conclusion: High public interest in brain health and brain health testing in certain segments of society, coupled with an increase of commercial tests entering the market, is likely to put pressure on public health systems to inform the public about brain health testing in years to come.


Subject(s)
Brain Diseases , Brain , Middle Aged , Male , Humans , Female , Cross-Sectional Studies , Surveys and Questionnaires , Self Report
5.
BMJ Open ; 12(4): e057999, 2022 04 18.
Article in English | MEDLINE | ID: mdl-35437254

ABSTRACT

OBJECTIVES: To investigate public perspectives on brain health. DESIGN: Cross-sectional multilanguage online survey. SETTING: Lifebrain posted the survey on its website and social media and shared it with stakeholders. The survey was open from 4 June 2019 to 31 August 2020. PARTICIPANTS: n=27 590 aged ≥18 years from 81 countries in five continents completed the survey. The respondents were predominantly women (71%), middle aged (41-60 years; 37%) or above (>60 years; 46%), highly educated (69%) and resided in Europe (98%). MAIN OUTCOME MEASURES: Respondents' views were assessed regarding factors that may influence brain health, life periods considered important to look after the brain and diseases and disorders associated with the brain. We run exploratory linear models at a 99% level of significance to assess correlates of the outcome variables, adjusting for likely confounders in a targeted fashion. RESULTS: Of all significant effects, the respondents recognised the impact of lifestyle factors on brain health but had relatively less awareness of the role socioeconomic factors might play. Most respondents rated all life periods as important for the brain (95%-96%), although the prenatal period was ranked significantly lower (84%). Equally, women and highly educated respondents more often rated factors and life periods to be important for brain health. Ninety-nine per cent of respondents associated Alzheimer's disease and dementia with the brain. The respondents made a connection between mental health and the brain, and mental disorders such as schizophrenia and depression were significantly more often considered to be associated with the brain than neurological disorders such as stroke and Parkinson's disease. Few respondents (<32%) associated cancer, hypertension, diabetes and arthritis with the brain. CONCLUSIONS: Differences in perceptions of brain health were noted among specific segments of the population. Policies providing information about brain-friendly health behaviours and targeting people less likely to have relevant experience may be needed.


Subject(s)
Brain , Public Opinion , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Life Style , Male , Middle Aged , Surveys and Questionnaires
6.
Front Public Health ; 8: 387, 2020.
Article in English | MEDLINE | ID: mdl-32923418

ABSTRACT

Background: Brain health is a multi-faceted concept used to describe brain physiology, cognitive function, mental health and well-being. Diseases of the brain account for one third of the global burden of disease and are becoming more prevalent as populations age. Diet, social interaction as well as physical and cognitive activity are lifestyle factors that can potentially influence facets of brain health. Yet, there is limited knowledge about the population's awareness of brain health and willingness to change lifestyle to maintain a healthy brain. This paper introduces the Global Brain Health Survey protocol, designed to assess people's perceptions of brain health and factors influencing brain health. Methods: The Global Brain Health Survey is an anonymous online questionnaire available in 14 languages to anyone above the age of 18 years. Questions focus on (1) willingness and motivation to maintain or improve brain health, (2) interest in learning more about individual brain health using standardized tests, and (3) interest in receiving individualized support to take care of own brain health. The survey questions were developed based on results from a qualitative interview study investigating brain health perceptions among participants in brain research studies. The survey includes 28 questions and takes 15-20 min to complete. Participants provide electronically informed consent prior to participation. The current survey wave was launched on June 4, 2019 and will close on August 31, 2020. We will provide descriptive statistics of samples distributions including analyses of differences as a function of age, gender, education, country of residence, and we will examine associations between items. The European Union funded Lifebrain project leads the survey in collaboration with national brain councils in Norway, Germany, and Belgium, Brain Foundations in the Netherlands and Sweden, the National University of Ostroh Academy and the Women's Brain Project. Discussion: Results from this survey will provide new insights in peoples' views on brain health, in particular, the extent to which the adoption of positive behaviors can be encouraged. The results will contribute to the development of policy recommendations for supporting population brain health, including measures tailored to individual needs, knowledge, motivations and life situations.


Subject(s)
Brain , Language , Adolescent , Belgium , Female , Germany , Humans , Netherlands , Norway , Surveys and Questionnaires , Sweden
7.
Gerontologist ; 60(6): 1050-1059, 2020 08 14.
Article in English | MEDLINE | ID: mdl-31682729

ABSTRACT

BACKGROUND AND OBJECTIVES: A healthy brain is central to physical and mental well-being. In this multi-site, qualitative study, we investigated views and attitudes of adult participants in brain research studies on the brain and personalized brain health as well as interest in maintaining a healthy brain. DESIGN AND METHODS: We conducted individual interviews with 44 adult participants in brain research cohorts of the Lifebrain consortium in Spain, Norway, Germany, and the United Kingdom. The interviews were audio recorded, transcribed, and coded using a cross-country codebook. The interview data were analyzed using qualitative content analysis. RESULTS: Most participants did not focus on their own brain health and expressed uncertainty regarding how to maintain it. Those actively focusing on brain health often picked one specific strategy like diet or memory training. The participants were interested in taking brain health tests to learn about their individual risk of developing brain diseases, and were willing to take measures to maintain their brain health if personalized follow-up was provided and the measures had proven impact. The participants were interested in more information on brain health. No differences in responses were identified between age groups, sex, or countries. DISCUSSION AND IMPLICATIONS: Concise, practical, personalized, and evidence-based information about the brain may promote brain health. Based on our findings, we have launched an ongoing global brain health survey to acquire more extensive, quantitative, and representative data on public perception of personalized brain health.


Subject(s)
Brain , Germany , Humans , Norway , Qualitative Research , Spain , United Kingdom
8.
Article in English | MEDLINE | ID: mdl-19208047

ABSTRACT

OBJECTIVES: To determine if different temperature monitoring devices routinely used in postpartum mothers and newborns provide similar temperatures and to compare the rectal and axillary routes for temperature monitoring in newborns. DESIGN: A method comparison design with randomization of the temperature device sequence was used to evaluate the level of agreement between the 3 different types of thermometers used. SETTING: A Level 3 (high risk) postpartum unit with 6,200 deliveries per year in a 450-bed, not-for-profit hospital in the Pacific Northwest. PARTICIPANTS: A convenience sample of 36 mothers and 36 newborns were studied during a 96 hours postpartum period. METHOD: Comparison of 3 different temperature devices (2 different electronic temperatures devices and a disposable temperature device) in mothers and newborns; comparison of different routes for temperature measurement in newborns (rectal, axillary). RESULTS: Statistically significant differences were found between the rectal and axillary temperatures obtained with the same electronic temperature device in newborns. In mothers, there was a statistically significant difference in oral temperatures obtained with the disposable temperature device and 1 of the electronic thermometers. CONCLUSIONS: The statistically significant temperature differences between the axillary and rectal routes in newborns using the same temperature device emphasize that axillary temperatures are not similar to rectal temperatures in newborns.


Subject(s)
Body Temperature , Monitoring, Physiologic/instrumentation , Neonatal Nursing/methods , Postnatal Care/methods , Thermography/instrumentation , Thermometers/standards , Adult , Analysis of Variance , Axilla , Clinical Nursing Research , Disposable Equipment/standards , Female , Humans , Infant, Newborn , Male , Monitoring, Physiologic/nursing , Monitoring, Physiologic/standards , Mouth Mucosa , Northwestern United States , Nursing Assessment/methods , Postpartum Period/physiology , Rectum , Thermography/nursing , Thermography/standards , Young Adult
9.
Int J Pediatr Otorhinolaryngol ; 72(6): 767-73, 2008 Jun.
Article in English | MEDLINE | ID: mdl-18403026

ABSTRACT

OBJECTIVE: Infants are diagnosed with severe to profound hearing loss at an earlier age due to the advent of universal newborn hearing screening. This offers the opportunity to provide intervention in the form of cochlear implantation at an earlier age than was previously possible. The purpose of this investigation is to evaluate the risk of cochlear implant surgery in children less than 12 months of age. DESIGN: Retrospective review of children who underwent cochlear implantation before 12 months of age. SETTING: Patients were identified from a database of pediatric cochlear implant patients at a tertiary care center. All patients were diagnosed with severe to profound hearing loss by otoacoustic emission and auditory brainstem response. Follow-up ranged from 2 months to 5 years. RESULTS: Fourteen of 15 patients had full insertions of the electrode hardware. Less than full insertion and post-operative CSF otorrhea occurred in one patient with severe cochlear abnormalities. There were no other perioperative surgical complications. The average speech detection threshold was 27.6 dB (20-45 dB) at approximately 1-3 months post-stimulation and 25 dB (15-30 dB) at approximately 5-7 months. CONCLUSION: In our experience, we feel cochlear implantation is safe for infants as young as 6 months of age. The current standard at our institution is to implant by 7 months of age for prelingual deafness as opposed to waiting additional time until 12 months of age before the brain is presented with speech.


Subject(s)
Cochlear Implantation , Hearing Loss/surgery , Audiometry, Pure-Tone , Auditory Threshold , Female , Hearing Loss/etiology , Humans , Infant , Male , Retrospective Studies , Speech Perception
10.
Am J Med Genet A ; 140(14): 1553-63, 2006 Jul 15.
Article in English | MEDLINE | ID: mdl-16770805

ABSTRACT

Osteocraniostenosis is a severe skeletal dysplasia characterized by a hypomineralized skull that has been previously described as kleeblattschädel (cloverleaf skull) and overtubulated long bones. Dysmorphic facial features include a short nose, short philtrum, and a small, inverted V-shaped mouth. Splenic a/hypoplasia is a constant finding. We report four infants (two unrelated and two siblings) with osteocraniostenosis and describe the clinical, radiographic and chondro-osseous morphology findings. The two siblings lack the moderate long-bone shortening that is typically seen. The skull configuration is likely caused by severely hypoplastic cranial bones (parietal) rather than true craniosynostosis, making the term "osteocraniostenosis" misleading. Histological examination of bone in all cases showed an abnormal growth plate with short irregular columns. The resting cartilage showed pleomorphic chondrocytes with increased cellularity and unique pseudocolumn formation. There are some radiographic and chondro-osseous morphologic similarities between osteocraniostenosis and severe Hallermann-Streiff syndrome (HSS), suggesting the two disorders may be pathogenetically related.


Subject(s)
Bone Diseases, Developmental/genetics , Skull/abnormalities , Spleen/abnormalities , Adult , Bone Density , Bone Diseases, Developmental/diagnostic imaging , Bone Diseases, Developmental/pathology , Facial Bones/abnormalities , Female , Growth Plate/abnormalities , Hallermann's Syndrome/pathology , Humans , Infant, Newborn , Male , Phenotype , Pregnancy , Radiography , Skull/metabolism , Syndrome
11.
Am J Med Genet A ; 120A(2): 169-73, 2003 Jul 15.
Article in English | MEDLINE | ID: mdl-12833395

ABSTRACT

We report a new disorder with diverse neurological problems resulting from abnormal brainstem function. Consistent features of this disorder, which we propose should be called the Atabascan brainstem dysgenesis syndrome, include horizontal gaze palsy, sensorineural deafness, central hypoventilation, and developmental delay. Other features seen in some patients include swallowing dysfunction, vocal cord paralysis, facial paresis, seizures, and cardiac outflow tract anomalies. All affected children described are of Athabascan Indian heritage, with eight children from the Navajo tribe and two patients who are of Apache background. The disorder can be distinguished from the Moebius syndrome by the pattern of central nervous system findings, especially the sensorineural deafness, horizontal gaze palsy, and central hypoventilation. Recognition of children with some features of Athabascan brainstem dysgenesis syndrome should prompt investigation for other related abnormalities. Published 2003 Wiley-Liss, Inc.


Subject(s)
Abnormalities, Multiple/diagnosis , Abnormalities, Multiple/genetics , Brain Stem/abnormalities , Child , Deafness/complications , Deafness/genetics , Developmental Disabilities/complications , Developmental Disabilities/genetics , Disease Progression , Fatal Outcome , Female , Hearing Loss, Sensorineural/complications , Hearing Loss, Sensorineural/genetics , Humans , Hypoventilation/complications , Hypoventilation/genetics , Indians, North American , Male , Mobius Syndrome/complications , Mobius Syndrome/genetics , Ocular Motility Disorders/complications , Ocular Motility Disorders/genetics , Syndrome
12.
Stud Health Technol Inform ; 80: 175-80, 2002.
Article in English | MEDLINE | ID: mdl-12026126

ABSTRACT

The pressure on Materials Managers, Information Technology Managers and Chief Executive Officer's has never been greater to re-imagine, re-invent, and re-architect their operations. The need for speed and for emerging Internet skills and sensibilities has led many operations to look to E-business service providers for assistance. The United States market for E-business services, including consulting, IT outsourcing, software development, and system integration has grown from $7.01 billion in 1998 to approximately $10.3 million in 2000 according to Dataquest. With the growth in E-business accelerating, the market is expected to mushroom to $59 billion by 2003. Material Managers know they must introduce E-commerce to their business strategy, but many are not sure how, which is driving them to consulting and services companies. There is confusion in the ranks on whether they need to change their business model and systems structure in order to do this, and the organization is reevaluating how to move forward in the dot.com world.


Subject(s)
Commerce/trends , Hospital Information Systems/trends , Internet/trends , Materials Management, Hospital/trends , Efficiency, Organizational , Forecasting , Health Care Sector/trends , Health Resources/organization & administration , United States
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