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1.
Qual Health Res ; : 10497323231218137, 2023 Dec 11.
Article in English | MEDLINE | ID: mdl-38079522

ABSTRACT

As previous research has observed, medical students and physicians alike confront vast amounts of knowledge in their education and practice, such that no one clinician can know everything there is to know about biomedicine. Even before clerkships, medical students learn to cope with this impossibility by prioritizing certain information based on its perceived utility for exams and clinical practice. Many factors can shape this process, including teamwork, wherein individual medical students rely on one another to address gaps in knowledge at the level of the group. This paper will draw on qualitative data from two allopathic medical schools in the American Midwest to demonstrate that peer-to-peer learning, a widely utilized pedagogical modality in North American medical schools, is amongst the earliest places where future physicians learn how to rely on their peers in the profession as they make choices about what to know and what not to know about biomedicine: cultivating a culture of "intraprofessionalism" between students with different knowledges and values, as they prepare to enter the same profession. The paper will also consider how differences in the student populations at two field sites impact intraprofessional development. Drawing on scholarship of peer-based learning strategies and the sociology and anthropology of medical education, the authors argue that peer-to-peer learning is a key site in the professional socialization of medical students toward the effective management of medical knowledge.

3.
Prev Med Rep ; 28: 101881, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35855927

ABSTRACT

This study analyzed the physical health status of adults who belong to a sexual or gender minority (SGM) population, and whether health inequities correlate with access to quality healthcare. The Centers for Disease Control and Prevention (CDC) 2014-2020 Behavioral Risk Factor Surveillance System (BRFSS) included data for 64,696 adults who identified as gay, lesbian, bisexual, other, and/or transgender and 1,369,681 adults who identified as cisgender and straight. Multivariable logistic regressions of the weighted sample were conducted to examine associations between demographics and health and access outcomes. After accounting for demographic variables, drinking, and smoking behavior, SGM respondents reported poorer physical and mental health, which worsened after the start of the COVID-19 pandemic. SGM respondents had higher odds than non-SGM of having asthma, arthritis, diabetes, kidney disease, hypertension, cardiovascular disease, heart attack, stroke, and chronic obstructive pulmonary disease (COPD), as well as difficulties "see[ing] the doctor because of cost," particularly after the start of the COVID pandemic. SGM respondents had higher odds of lack of access to healthcare provider, delayed medical care, and issues taking medications due to cost and fewer routine checkups. Thus, the SGM group faced worse health and higher rates of some chronic conditions. This study found a significant relationship with cost barriers attributable to larger societal discrimination regarding SGM individuals, particularly in the workplace. Further research exploring these results is critical, but these findings have identified areas of healthcare inequity to be addressed via preventative health efforts in both public health and primary care settings.

5.
Autism Res ; 15(3): 570-585, 2022 03.
Article in English | MEDLINE | ID: mdl-35040590

ABSTRACT

Scholars and activists debate whether people on the autism spectrum should access autism-specific services or general/inclusive/mainstream services. This article presents quantitative results from a mixed-methods survey of autistic adults and parents/guardians of autistic people in Canada, France, Germany, Italy, and the United States. Respondents reported categories of services used (autism-specific, mixed-disability, or general/inclusive/mainstream), satisfaction, and overall service preference. Most respondents preferred autism-specific services, followed by different categories of services for different service types. Demographic factors had little influence on overall service preferences. No significant differences were found between adults' and parents/guardians' overall service preferences. For parents/guardians, using autism-specific services was associated with a preference for autism-specific services. There were significant associations between the services respondents reported having previously used and their overall service preference. Parents/guardians in Italy and France reported lower satisfaction with many services. These results suggest that a preference for autism-specific services pervades different groups. While most respondents did endorse autism-specific services, the strong secondary preference for different service categories encourages providers and policy makers to attend to diverse needs. While satisfaction was generally middling to high, there remain areas for improvement, especially in general job training services. General services can use a Universal Design approach and collaborate with autism-specific and mixed-disability services to increase accessibility to diverse populations. The influence of previous service use on preferences suggests that providers can leverage strengths of existing services, leverage and create connections, and ask users about previous experiences to better address their expectations. LAY SUMMARY: This study asked autistic adults and parents/guardians of autistic people what they think about autism services. Most parents/guardians and adults liked services that focus on autism, but many parents/guardians and adults liked them for some things and not others. All services can ask people about services they used in the past and learn from the strengths of good services through Universal Design and working with other services.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Autism Spectrum Disorder/therapy , Autistic Disorder/therapy , Humans , Parents , Personal Satisfaction , Surveys and Questionnaires , United States
7.
Ethics Hum Res ; 42(5): 2-16, 2020 Sep.
Article in English | MEDLINE | ID: mdl-32937033

ABSTRACT

Research ethics scholarship often attends to vulnerability. People with autism may be vulnerable in research, but are also vulnerable to unjust exclusion from participation. Addressing the needs of participants with autism can facilitate inclusion and honor the bioethics principle of respect for persons while accounting for risk and vulnerability. Drawing from a review of the literature and informed by a moral deliberation process involving a task force of stakeholders (including autistic people and parents of autistic people), we use the model of person-oriented research ethics to identify several practical strategies researchers can use to address these needs and foster inclusion. Strategies include using multiple means of communication, addressing the sensory environment, preparing participants in advance, and accounting for social context. These practical strategies are not just methodological or design choices; they are inherently related to ethical issues. Method and design choices fulfill ethical aspirations by facilitating inclusion, reducing discomfort, and focusing on individuals.


Subject(s)
Autistic Disorder/psychology , Ethics, Research , Patient Selection , Research Design , Stakeholder Participation , Communication , Humans , Vulnerable Populations/psychology
8.
Antioxidants (Basel) ; 9(10)2020 Sep 23.
Article in English | MEDLINE | ID: mdl-32977483

ABSTRACT

Diabetic retinopathy (DR), a common chronic complication of diabetes mellitus and the leading cause of vision loss in the working-age population, is clinically defined as a microvascular disease that involves damage of the retinal capillaries with secondary visual impairment. While its clinical diagnosis is based on vascular pathology, DR is associated with early abnormalities in the electroretinogram, indicating alterations of the neural retina and impaired visual signaling. The pathogenesis of DR is complex and likely involves the simultaneous dysregulation of multiple metabolic and signaling pathways through the retinal neurovascular unit. There is evidence that microvascular disease in DR is caused in part by altered energetic metabolism in the neural retina and specifically from signals originating in the photoreceptors. In this review, we discuss the main pathogenic mechanisms that link alterations in neural retina bioenergetics with vascular regression in DR. We focus specifically on the recent developments related to alterations in mitochondrial metabolism including energetic substrate selection, mitochondrial function, oxidation-reduction (redox) imbalance, and oxidative stress, and critically discuss the mechanisms of these changes and their consequences on retinal function. We also acknowledge implications for emerging therapeutic approaches and future research directions to find novel mitochondria-targeted therapeutic strategies to correct bioenergetics in diabetes. We conclude that retinal bioenergetics is affected in the early stages of diabetes with consequences beyond changes in ATP content, and that maintaining mitochondrial integrity may alleviate retinal disease.

9.
Autism ; 24(7): 1676-1690, 2020 10.
Article in English | MEDLINE | ID: mdl-32551887

ABSTRACT

LAY ABSTRACT: Research ethics means issues that concern the welfare and wellbeing of people who take part in research. It is important in all scientific studies. Ethics helps people who do research treat people who take part in research fairly and with respect. This article is about day-to-day ethics when autistic people take part in research. We present tips for researchers who want to do this type of study.We used two methods to create these tips. First, we wanted to know what other people said about this topic. We used a literature review to find out. Second, we wanted to know what autistic people, parents, and professionals thought, and had a working group meet to discuss it. The working group provided advice that researchers could consider around day-to-day ethics in research. This article talks about these methods and advice. The advice fits into five big groups:Tailor the research process for the unique needs of each person.Think about the world in which people who take part in research live.Make it easier for people to make their own choices.Value what people who take part in research have to share and consider their needs and strengths.Think about how researchers and people who take part in research work together.This project shows why it is useful for researchers and communities to talk about research ethics together.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autistic Disorder/therapy , Humans , Research Personnel , Respect
11.
Theor Med Bioeth ; 40(4): 253-278, 2019 Aug.
Article in English | MEDLINE | ID: mdl-31587142

ABSTRACT

Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics-and the specific role(s) it can or should play-remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: (1) function identification, (2) function enrichment, and (3) function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing (eudaimonia). We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts.


Subject(s)
Bioethics , Empirical Research , Ethics, Research , Ethical Analysis , Ethical Theory , Humans
12.
J Perinatol ; 39(2): 278-285, 2019 02.
Article in English | MEDLINE | ID: mdl-30568164

ABSTRACT

OBJECTIVE: Prognosis of Hypoxic-Ischemic Encephalopathy (HIE) remains challenging and uncertain. This paper investigates how physicians understand and address the ethical challenges of prognostic uncertainty in the case of neonatal HIE, contextualized within the social science literature. STUDY DESIGN: Semi-structured interviews were conducted with 12 Canadian neurologists and neonatologists, addressing their perspectives and clinical experiences concerning neonatal HIE prognostication. Interviews were analyzed using thematic content analysis. RESULTS: Participants unanimously recognized uncertainty in their prognostication. They identified several sources contributing to uncertainty in HIE prognostication, including etiology and underlying pathophysiologic mechanisms, statistical limitations, variable clinical data, the dynamic process of neurodevelopment, or the impact of hypothermia treatment. Unlike in some other literature, some physicians in this study talked about ways to render uncertainty explicit rather than hide it. CONCLUSION: Results from this study support the call for recognition of the ubiquitous uncertainty surrounding this act in medical education and training.


Subject(s)
Hypoxia-Ischemia, Brain/diagnosis , Neonatologists , Neurologists , Uncertainty , Canada , Humans , Hypothermia, Induced , Hypoxia-Ischemia, Brain/etiology , Hypoxia-Ischemia, Brain/therapy , Infant, Newborn , Interviews as Topic , Prognosis , Qualitative Research
13.
Account Res ; 25(3): 170-197, 2018.
Article in English | MEDLINE | ID: mdl-29451025

ABSTRACT

Research ethics is often understood by researchers primarily through the regulatory framework reflected in the research ethics review process. This regulatory understanding does not encompass the range of ethical considerations in research, notably those associated with the relational and everyday aspects of human subject research. In order to support researchers in their effort to adopt a broader lens, this article presents a "person-oriented research ethics" approach. Five practical guideposts of person-oriented research ethics are identified, as follows: (1) respect for holistic personhood; (2) acknowledgement of lived world; (3) individualization; (4) focus on researcher-participant relationships; and (5) empowerment in decision-making. These guideposts are defined and illustrated with respect to different aspects of the research process (e.g., research design, recruitment, data collection). The person-oriented research ethics approach provides a toolkit to individual researchers, research groups, and research institutions in both biomedical and social science research wishing to expand their commitment to ethics in research.


Subject(s)
Ethics, Research , Research Subjects , Researcher-Subject Relations/ethics , Guidelines as Topic , Informed Consent , Research Personnel/ethics
16.
Cult Med Psychiatry ; 39(2): 235-53, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25743186

ABSTRACT

Many therapies, interventions, and programs seek to improve outcomes and quality of life for people diagnosed with autism spectrum conditions. This paper addresses Italian professionals' perspectives on a variety of such interventions, including TEACCH, ABA, Defeat Autism Now!, and Doman-Delacato. Drawing on participant-observation and interviews collected in 2012-2013 in a northern region of Italy, it highlights the theme of "rigidity" that appears in professionals' discourses about both the characteristics of people with autism and the potential risks of adhering too strictly to any particular treatment protocol. The co-occurrence of the theme of rigidity across different domains demonstrates a way in which diagnostic characteristics become metaphors for medical practice. This paper proposes that such discursive moves may help bridge the gap between people with autism and people who work with them because a key attribute of people with autism-thinking and/or acting rigidly-is also a potential pitfall for people without autism.


Subject(s)
Attitude of Health Personnel/ethnology , Autistic Disorder/therapy , Health Knowledge, Attitudes, Practice/ethnology , Adult , Autistic Disorder/ethnology , Humans , Italy
18.
Transfus Med Rev ; 27(1): 50-5, 2013 Jan.
Article in English | MEDLINE | ID: mdl-22749059

ABSTRACT

Food and Drug Administration guidelines prohibit men who have sex with men (MSM) from donating blood to prevent the spread of the human immunodeficiency virus (HIV/AIDS). Although the deferral criteria leave "sex" undefined, donor educational materials distributed before the health questionnaire often offer a definition. This study analyzes educational materials for their contribution to the donation process and construction of HIV/AIDS. It applies a discourse analysis approach to a sample (n = 52) of such materials obtained in summer 2009 from blood collection organizations listed in the AABB (now referred to as "Advancing Transfusion and Cellular Therapies Worldwide") Directory of Community Blood Centers and Hospital Blood Banks [AABB. Directory of Community Blood Centers and Hospital Blood Banks. Bethesda, MD: AABB; 2009]. It finds that when materials define sex, the definition is "vaginal, oral, or anal sex whether or not a condom or other protection was used," and when materials define HIV/AIDS risk behaviors, the definition is, with few exceptions, "sexual contact with an infected person or by sharing needles or syringes used for injecting drugs." Widespread use of these definitions demonstrates the influence of "Making Your Blood Donation Safe." Through analysis of this document and variations upon it, this research finds that the category MSM therefore provides one component of the construction of HIV/AIDS as the providence of MSM, together with heterosexual Africans and other risk populations, conflating group membership with individual risk. Deferring MSM therefore fails as a behavior-based deferral because it collapses multiple sexual behaviors with varying risks into a single risk category. It constructs all MSM as HIV positive and implicitly constructs non-MSM as risk-free.


Subject(s)
Attitude , Blood Donors , Blood Safety/standards , Donor Selection/standards , HIV Infections/prevention & control , Health Education , Pamphlets , Sexual Behavior , Teaching Materials , Terminology as Topic , Unsafe Sex , Attitude to Health , Blood Donors/psychology , Humans , Male , Prejudice , Risk Assessment , Risk-Taking , United States , United States Food and Drug Administration , Vulnerable Populations
19.
Intellect Dev Disabil ; 50(3): 273-83, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22731976

ABSTRACT

The neurodiversity movement takes an identity politics approach to autism spectrum disorders, proposing autism spectrum disorders as a positive "neuro-variation" to be approached only with interventions that assist individuals without changing them. This article explicates the concept of neurodiversity and places it within the context of autism spectrum disorders advocacy and treatments. It draws from fieldwork conducted in a midwestern urban center, from June through October 2008, with support groups for parents of children with autism spectrum disorders. Neurodiverse sentiments were identified within these groups, despite the pursuance of treatments to which some neurodiversity advocates might object. Therefore, although neurodiversity has influenced parents of children with autism spectrum disorders in this sample, its role as a medical advocacy group has not been fully realized. This article attempts to place neurodiversity in better conversation with advocates and medical professionals.


Subject(s)
Child Development Disorders, Pervasive/psychology , Mothers/psychology , Self Concept , Adolescent , Adult , Attitude to Health , Child , Cultural Diversity , Emotions , Female , Humans , Interviews as Topic , Patient Advocacy , Self-Help Groups
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