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1.
Cancer Causes Control ; 34(7): 563-568, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37145262

RESUMO

INTRODUCTION: The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community. METHODS: We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study. RESULTS: We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient-provider communication; feeling excluded from their loved ones' care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic. CONCLUSION: Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.


Assuntos
COVID-19 , Neoplasias , Minorias Sexuais e de Gênero , Humanos , Cuidadores , Projetos Piloto , Pandemias , COVID-19/epidemiologia , Comportamento Sexual , Neoplasias/epidemiologia
2.
Clin Auton Res ; 31(2): 303-316, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32323062

RESUMO

PURPOSE: Acute pain and resting arterial blood pressure (BP) are positively correlated in patients with chronic pain. However, it remains unclear whether treatment for chronic pain reduces BP. Therefore, in a retrospective study design, we tested the hypothesis that implantation of an epidural spinal cord stimulator (SCS) device to treat chronic pain would significantly reduce clinic pain ratings and BP and that these reductions would be significantly correlated. METHODS: Pain ratings and BP in medical records were collected before and after surgical implantation of a SCS device at the University of Iowa Hospitals and Clinics between 2008 and 2018 (n = 213). RESULTS: Reductions in pain rating [6.3 ± 2.0 vs. 5.0 ± 1.9 (scale: 0-10), P < 0.001] and BP [mean arterial pressure (MAP) 95 ± 10 vs. 89 ± 10 mmHg, P < 0.001] were statistically significant within 30 days of SCS. Interestingly, BP returned toward baseline within 60 days following SCS implantation. Multiple linear regression analysis showed that sex (P = 0.007), baseline MAP (P < 0.001), and taking hypertension (HTN) medications (P < 0.001) were significant determinants of change in MAP from baseline (Δ MAP) (model R2 = 0.33). After statistical adjustments, Δ MAP was significantly greater among women than among men ( - 7.2 ± 8.5 vs. - 3.9 ± 8.5 mmHg, P = 0.007) and among patients taking HTN medications than among those not taking hypertension medications ( - 10.1 ± 8.7 vs. - 3.9 ± 8.5 mmHg, P < 0.001), despite no group differences in change in pain ratings. CONCLUSIONS: Together, these findings suggest that SCS for chronic pain independently produces clinically meaningful, albeit transient, reductions in BP and may provide a rationale for studies aimed at reducing HTN medication burden among this patient population.


Assuntos
Dor Crônica , Estimulação da Medula Espinal , Pressão Arterial , Dor Crônica/terapia , Feminino , Humanos , Masculino , Estudos Retrospectivos , Medula Espinal , Resultado do Tratamento
3.
Can J Anaesth ; 68(10): 1485-1496, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34159567

RESUMO

PURPOSE: Little is known about program directors' knowledge, attitudes, and beliefs regarding parental leave policies in anesthesiology training. This study sought to understand program director perceptions about the effects of pregnancy and parental leave on resident training, skills, and productivity. METHODS: An online 43-question survey was developed to evaluate United States anesthesiology program directors' perceptions of parental leave policies. The survey included questions regarding demographics, anesthesiology program characteristics, parental leave policies, call coverage, and the perceived effects of parental leave on resident performance. Data were collected by Qualtrics (Qualtrics, Provo, UT, USA). RESULTS: Fifty-six of 145 (39%) anesthesiology program directors completed the survey. Forty-eight of 54 (89%) program directors had a female resident take maternity leave in the past three years. When asked how parental leave affects residents' futures, 24/50 (48%) program directors felt it delayed board certification and 28/50 (56%) thought it affected fellowship opportunities. Program directors were split on their perceived impact of becoming a parent on a trainee's work. Yet, when compared with male trainees, program directors perceived that becoming a parent negatively affected female trainees' timeliness, technical skills, scholarly activities, procedural volume, and standardized test scores and affected training experience of co-residents. Program directors perceived no difference in impact on female trainees' dedication to patients and clinical performance. CONCLUSIONS: Program directors perceived that becoming a parent negatively affects the work performance of female but not male trainees. These negative perceptions could impact evaluations and future plans of female residents.


RéSUMé: OBJECTIF: On ne sait que peu de choses concernant les connaissances, les attitudes et les croyances des directeurs de programme au sujet des politiques relatives aux congés parentaux dans le cadre de la formation en anesthésiologie. Cette étude visait à comprendre les perceptions des directeurs de programme au sujet des effets de la grossesse et du congé parental sur la formation, les compétences et la productivité des résidents. MéTHODE: Un sondage en ligne comportant 43 questions a été élaboré afin d'évaluer les perceptions des directeurs de programme d'anesthésiologie aux États-Unis à l'égard des politiques en matière de congé parental. Le sondage comprenait des questions sur les données démographiques, les caractéristiques du programme d'anesthésiologie, les politiques relatives au congé parental, la couverture des gardes et les effets perçus du congé parental sur la performance des résidents. Les données ont été recueillies par Qualtrics (Qualtrics, Provo, UT, USA). RéSULTATS: Cinquante-six (39 %) des 145 directeurs de programme d'anesthésiologie ont répondu au sondage. Quarante-huit des 54 (89 %) directeurs de programme ont eu une résidente ayant pris un congé maternité au cours des trois dernières années. Lorsqu'on leur a demandé comment le congé parental affectait l'avenir des résidents, 24/50 (48 %) des directeurs de programme estimaient que cela retardait la certification médicale et 28/50 (56 %) pensaient que cela affectait les possibilités de fellowship. Les directeurs de programme étaient divisés quant à la question de l'impact perçu de devenir parent sur le travail d'un résident. Pourtant, par rapport aux résidents de sexe masculin, les directeurs de programme étaient d'avis que le fait de devenir parent affectait négativement les résidentes en matière de ponctualité, de compétences techniques, d'activités académiques, de volume procédural, de résultats aux tests standardisés et de l'expérience de formation de leurs co-résidents. Les directeurs de programme n'ont perçu aucune différence d'impact sur le dévouement des résidentes à l'égard de leurs patients ou sur leur performance clinique. CONCLUSION: Selon les directeurs de programme, le fait de devenir parent a une incidence négative sur la performance professionnelle des résidentes, mais non des résidents. Ces perceptions négatives pourraient avoir une incidence sur les évaluations et les plans futurs des résidentes.


Assuntos
Anestesiologia , Internato e Residência , Estudos Transversais , Feminino , Humanos , Masculino , Licença Parental , Pais , Percepção , Gravidez , Inquéritos e Questionários , Estados Unidos
4.
Neuromodulation ; 24(8): 1341-1346, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31710405

RESUMO

OBJECTIVE: To assess the volume of spinal cord stimulation procedures performed by physicians in the state of Florida in 2018. MATERIALS AND METHODS: We obtained information from publicly available state databases for all patients undergoing procedures in 2018 at Florida hospitals, hospital-owned facilities, and independent ambulatory surgery centers. Cases in which a spinal cord stimulation procedure was performed were identified. We estimated for each physician office-based spinal cord stimulation trials (not subject to state reporting) based on the published Florida conversion factor of 25.6% of the total number of such procedures. The medical specialty of the listed performing physician was determined based on the national provider identifier. Counts of neurostimulation procedures performed by physician and within specialties were determined. The numbers of physicians and specialties performing various thresholds between 1 and ≥100 per year were determined, and the percentages of patients whose care was delivered by physicians below each threshold were determined. RESULTS: The data analyzed included 10,762 spinal cord stimulation cases. Among the 606 physicians who performed at least one spinal cord stimulation procedure, only nine performed at least 100 cases in 2018. During 2018, 78.4% of physicians performed, on average, <2 spinal cord stimulation procedures per month; there were 29.4% of spinal cord stimulation patients cared for by such physicians. Physicians performing less than four cases per month provided care for 56.9% of all cases. CONCLUSIONS: Few physicians performing spinal cord stimulation procedures in the state of Florida in 2018 would have been considered as "high volume." Although volume is only one among many criteria used to designate centers of excellence for other procedures, the potential impact on physician practice and patient access to care should be considered if a specific minimum number of annual cases by physician is to be established.


Assuntos
Médicos , Estimulação da Medula Espinal , Bases de Dados Factuais , Florida , Humanos
5.
Anesth Analg ; 131(3): 909-916, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32332292

RESUMO

BACKGROUND: Annual and/or semiannual evaluations of pain medicine clinical faculty are mandatory for multiple organizations in the United States. We evaluated the validity and psychometric reliability of a modified version of de Oliveira Filho et al clinical supervision scale for this purpose. METHODS: Six years of weekly evaluations of pain medicine clinical faculty by resident physicians and pain medicine fellows were studied. A 1-4 rating (4 = "Always") was assigned to each of 9 items (eg, "The faculty discussed with me the management of patients before starting a procedure or new therapy and accepted my suggestions, when appropriate"). RESULTS: Cronbach α of the 9 items equaled .975 (95% confidence interval [CI], 0.974-0.976). A G coefficient of 0.90 would be expected with 18 raters; the N = 12 six-month periods had mean 18.8 ± 5.9 (standard deviation [SD]) unique raters in each period (median = 20).Concurrent validity was shown by Kendall τb = 0.45 (P < .0001) pairwise by combination of ratee and rater between the average supervision score and the average score on a 21-item evaluation completed by fellows in pain medicine. Concurrent validity also was shown by τb = 0.36 (P = .0002) pairwise by combination of ratee and rater between the average pain medicine supervision score and the average operating room supervision score completed by anesthesiology residents.Average supervision scores differed markedly among the 113 raters (η = 0.485; CI, 0.447-0.490). Pairings of ratee and rater were nonrandom (Cramér V = 0.349; CI, 0.252-0.446).Mixed effects logistic regression was performed with rater leniency as covariates and the dependent variable being an average score equaling the maximum 4 vs <4. There were 3 of 13 ratees with significantly more averages <4 than the other ratees, based on P < .01 criterion; that is, their supervision was reliably rated as below average. There were 3 of 13 different ratees who provided supervision reliably rated as above average.Raters did not report higher supervision scores when they had the opportunity to perform more interventional pain procedures. CONCLUSIONS: Evaluations of pain medicine clinical faculty are required. As found when used for evaluating operating room anesthesiologists, a supervision scale has excellent internal consistency, achievable reliability using 1-year periods of data, concurrent validity with other ratings, and the ability to differentiate among ratees. However, to be reliable, routinely collected supervision scores must be adjusted for rater leniency.


Assuntos
Competência Clínica/normas , Educação de Pós-Graduação em Medicina/normas , Avaliação de Desempenho Profissional/normas , Docentes de Medicina/normas , Internato e Residência/normas , Manejo da Dor/normas , Humanos , Reprodutibilidade dos Testes , Análise e Desempenho de Tarefas
6.
Anesth Analg ; 130(5): 1296-1302, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31923001

RESUMO

BACKGROUND: The proportion of women medical school graduates in the United States has grown substantially; however, representation of women in anesthesiology lags behind. We sought to investigate factors associated with women recommending against a career in anesthesiology due to obstacles related to motherhood. METHODS: We surveyed 9525 women anesthesiologist members of the American Society of Anesthesiologists (ASA) with a web-based survey distributed via e-mail. Associations between whether women would counsel against anesthesiology due to obstacles related to motherhood and 34 related categorical variables were estimated. Fisher exact test was used for categorical binary variables, and Wilcoxon-Mann-Whitney test was used for ranked variables. RESULTS: The response rate for the primary question was 19.2%. Among the 1827 respondents to the primary question, 11.6% would counsel a female medical student against a career in anesthesiology due to obstacles pertaining to motherhood. Counseling against an anesthesiology career was not associated with ever being pregnant (P = .16), or whether a woman was pregnant during residency or fellowship training (P = .41) or during practice (P = .16). No association was found between counseling against anesthesiology and training factors: total number of weeks of maternity leave (P = .18), the percentage of women faculty (P = .96) or residents (P = .34), or the number of pregnant coresidents (P = .66). Counseling against a career in anesthesiology was significantly associated with whether respondents' desired age of childbearing/motherhood and desired number of children were adversely affected by work demands (with Bonferroni adjustment for the 34 comparisons, both P < .0001). The risk ratio of respondents whose desired childbearing age and desired number of children were affected by work demands counseling against a career in anesthesiology was 5.1 compared to women whose desired childbearing age and desired number of children were not affected (99% confidence interval [CI], 3.3-7.9; P < .0001; odds ratio, 6.2). CONCLUSIONS: In this study of 1827 women anesthesiologists, approximately 1 in 10 would counsel a student against a career in anesthesiology due to obstacles pertaining to motherhood, and this was associated with altering one's timing and number of children due to job demands. Further research is needed to understand how women's perception of a career in anesthesiology is related to factors influencing personal choices. Understanding women's perceptions of motherhood in anesthesiology may help leaders support career longevity and personal satisfaction in this growing cohort of anesthesiologists.


Assuntos
Anestesiologia , Escolha da Profissão , Internato e Residência , Mães/psicologia , Sociedades Médicas , Inquéritos e Questionários , Anestesiologia/estatística & dados numéricos , Feminino , Humanos , Internato e Residência/estatística & dados numéricos , Satisfação no Emprego , Gravidez , Sociedades Médicas/estatística & dados numéricos , Inquéritos e Questionários/estatística & dados numéricos
7.
Pain Med ; 21(10): 2298-2309, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32719876

RESUMO

INTRODUCTION: The introduction of successful neuromodulation strategies for managing chronic visceral pain lag behind what is now treatment of choice in refractory chronic back and extremity pain for many providers in the United States and Europe. Changes in public policy and monetary support to identify nonopioid treatments for chronic pain have sparked interest in alternative options. In this review, we discuss the scope of spinal cord stimulation (SCS) for visceral pain, its limitations, and the potential role for new intradural devices of the type that we are developing in our laboratories, which may be able to overcome existing challenges. METHODS: A review of the available literature relevant to this topic was performed, with particular focus on the pertinent neuroanatomy and uses of spinal cord stimulation systems in the treatment of malignant and nonmalignant gastrointestinal, genitourinary, and chronic pelvic pain. RESULTS: To date, there have been multiple off-label reports testing SCS for refractory gastrointestinal and genitourinary conditions. Though some findings have been favorable for these organs and systems, there is insufficient evidence to make this practice routine. The unique configuration and layout of the pelvic pain pathways may not be ideally treated using traditional SCS implantation techniques, and intradural stimulation may be a viable alternative. CONCLUSIONS: Despite the prevalence of visceral pain, the application of neuromodulation therapies, a standard approach for other painful conditions, has received far too little attention, despite promising outcomes from uncontrolled trials. Detailed descriptions of visceral pain pathways may offer several clues that could be used to implement devices tailored to this unique anatomy.


Assuntos
Dor Crônica , Estimulação da Medula Espinal , Dor Visceral , Dor Crônica/terapia , Humanos , Dor Pélvica , Transtornos Somatoformes , Medula Espinal , Dor Visceral/terapia
8.
Anesth Analg ; 129(2): 493-499, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31166229

RESUMO

BACKGROUND: Current guidelines for the administration of therapeutic epidural injections suggest that these be limited to a maximum of 4 per year. We sought to gain an understanding of the proportion of lumbosacral epidural injections administered to patients who had received ≥4 such injections during the preceding 364 days, and whether these proportions varied among hospitals. METHODS: This observational cohort study included data from all facilities owned by the 121 nonfederal hospitals in the State of Iowa, July 2012 through September 2017. One end point was the percentage of all lumbar or sacral transforaminal or interlaminar epidural injections where the patient had received ≥4 such injections during the preceding 364 days. Comparisons also were made among hospitals' percentages of injections that were the fifth or greater (ie, patient had already received ≥4 during preceding 364 days) using Bonferroni-adjusted conservative 95% confidence intervals. RESULTS: There were 48,270 unique patients who underwent at least 1 lumbosacral epidural steroid injection. The patients received care at 112 hospitals' facilities. Most patients received no additional steroid injections within 364 subsequent calendar days after the first steroid injection (54.1%). There were ≥5 steroid injections for 1.27% of patients (ie, the injection was the fifth or greater). Among the 39 hospitals in Iowa that performed overall at least 1 steroid injection every 4 days, there were 6 hospitals at which the percentages of injections that were the fifth or greater significantly exceeded the overall prevalence of 1.91% (range: 3.0%-6.4%). There were 14 of the 39 hospitals with prevalences significantly less. CONCLUSIONS: Although most patients received only 1 lumbosacral steroid injection within 1 year, 1.27% of patients received 5 or more, and 1.91% of injections were the fifth or greater. Several hospitals had significantly greater than the overall average percent of steroid injections which were fifth or more. This heterogeneity warrants study of whether annual steroid injections per patient should be a clinical quality measure for the care received by patients with lower back pain or whether payment should be greater when injections are in accordance with guidelines.


Assuntos
Disparidades em Assistência à Saúde/tendências , Hospitais/tendências , Dor Lombar/tratamento farmacológico , Esteroides/administração & dosagem , Adulto , Idoso , Esquema de Medicação , Feminino , Fidelidade a Diretrizes/tendências , Humanos , Injeções Epidurais/tendências , Iowa , Dor Lombar/diagnóstico , Vértebras Lombares , Masculino , Pessoa de Meia-Idade , Guias de Prática Clínica como Assunto , Indicadores de Qualidade em Assistência à Saúde/tendências , Estudos Retrospectivos , Sacro , Fatores de Tempo , Adulto Jovem
9.
Anesth Analg ; 128(2): 335-341, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-29958214

RESUMO

BACKGROUND: The use of cognitive aids, such as emergency manuals (EMs), improves team performance on critical steps during crisis events. In our large academic anesthesia practice, we sought to broadly implement an EM and subsequently evaluate team member performance on critical steps. METHODS: We observed the phases of implementing an EM at a large academic anesthesia practice from 2013 to 2016, including the formation of the EM implementation team, identification of preferred EM characteristics, consideration of institution-specific factors, selection of the preferred EM, recognition of logistical barriers, and staff education. Utilization of the EM was tested in a regular clinical environment with all available resources using a standardized verbal simulation of 3 crisis events both preimplementation and 6 months postimplementation. Individual members of the anesthesia team were asked to verbalize interventions for specific crisis events over 60 seconds. RESULTS: We introduced a customized version of the Stanford Emergency Manual on January 26, 2015. Fifty-nine total participants (equal proportion of anesthesiology attending physicians, resident physicians, certified registered nurse anesthetists, and student registered nurse anesthetist staff) were surveyed in the preimplementation phase and 60 in the 6-month postimplementation phase. In the postimplementation phase, a minority (41.7%) utilized the EM for the verbal-simulated crisis events. Those who used the EM performed better than those who did not (median 21.0 critical steps out of a possible 30 total steps [70.0%], interquartile range 19-25 vs 18.0 critical steps verbalized [60.0%], interquartile range 16-20; P < .001). Among all subjects, the median number of critical steps verbalized was 16 (53.3%) preimplementation and 19.5 critical steps (65.0%) postimplementation. CONCLUSIONS: Implementation of an EM in a large academic anesthesia practice is not without challenges. While full integration of the EM was not achieved 6 months after implementation, verbalization of critical steps on 3 simulated crisis events improved when the EM was utilized.


Assuntos
Centros Médicos Acadêmicos/normas , Anestesia/normas , Competência Clínica/normas , Serviços Médicos de Emergência/normas , Manuais como Assunto/normas , Centros Médicos Acadêmicos/tendências , Anestesia/tendências , Serviços Médicos de Emergência/tendências , Humanos , Fluxo de Trabalho
10.
Anesth Analg ; 128(6): e109-e112, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31094811

RESUMO

While the literature regarding physicians' childbearing experiences is growing, there are no studies documenting those of anesthesiologists. We surveyed a convenience sample of 72 female anesthesiologists to obtain pilot data. Sixty-six women completed the survey (91.7% response rate), reporting 113 total births from before 1990 to present. Of all birth experiences, proportions of respondents reporting parental leave, lactation facilities, and lactation duration as adequate were 52.3%, 45.2%, and 58.3%, respectively. Most mothers (51.8%) gave birth to their first child while they were trainees. The majority (94.9%) favored an official statement supporting parental leave. These results may serve as groundwork for larger studies.


Assuntos
Anestesiologistas , Anestesiologia/organização & administração , Licença Parental , Adulto , Idoso , Atitude do Pessoal de Saúde , Aleitamento Materno , Feminino , Humanos , Internato e Residência , Pessoa de Meia-Idade , Mães , Parto , Médicos , Projetos Piloto , Inquéritos e Questionários
11.
BMC Complement Altern Med ; 19(1): 174, 2019 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-31299970

RESUMO

BACKGROUND: The use of essential oils is growing in the United States, but clinician attitudes, experience, and beliefs regarding their use have not previously been studied. METHODS: One hundred five of 106 clinician attendees (99.1%) of an integrative medicine continuing education conference were surveyed using an audience response system to obtain baseline information. Response frequencies of each item were reported. Nonparametric correlations were assessed comparing the statement "In the last 12 months, I have used essential oils for myself and/or my family" with the other agree/disagree statements using Spearman's rho. RESULTS: A majority of participants personally used integrative medicine approaches other than aromatherapy (92.6%) and recommended them clinically (96.8%). Most had personally used essential oils (61%) and wished to offer essential oil recommendations or therapies to their patients (74.0%). Only 21.9% felt confident in their ability to counsel patients on safe use. Personal use of essential oils was highly correlated with confidence in the ability to counsel patients on safe use (Spearman coefficient 0.376, P = 0.000). CONCLUSIONS: This study indicates that clinicians interested in integrative medicine desire to provide aromatherapy recommendations, but do not feel confident in their ability to do so.


Assuntos
Aromaterapia , Medicina Integrativa/educação , Óleos Voláteis/uso terapêutico , Adulto , Idoso , Aromaterapia/tendências , Educação Médica Continuada , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
12.
Anesth Analg ; 135(1): e3-e4, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35709456
15.
Autism Adulthood ; 6(1): 25-35, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38435321

RESUMO

Background: There is a lack of research on autistic intimacy; however, a small body of research suggests that bondage, discipline, domination, submission, sadism and (sado)masochism (BDSM)/kink may be appealing to autistic people. We aimed at exploring how engagement in BDSM/kink related to autistic identity, using a phenomenological approach. Methods: We recruited six autistic adults through purposive sampling on social media. All participants took part in a one-to-one spoken interview about their engagement in BDSM/kink and how it related to their sense of identity. Results: We used interpretative phenomenological analysis to analyze the data and found three key themes. Theme 1, "Practicing safe 'sex'" highlighted how the clear communication and explicit focus on consent present in BDSM/kink facilitated a feeling of safety. Theme 2, "So many ways to touch and be touched" was focused on the sensory draw of BDSM/kink, and how it provided exciting ways to explore sensory joy (and sometimes revulsion). Theme 3, "Subverting (neuro)normativity" showed how autistic people can find pleasure in intimate practices that transgress normative expectations. Conclusion: Our findings highlighted the importance of exploring the perceptions of autistic adults in relation to their own intimate practices. Autistic intimacy is an emerging area of research, with very little focus on lived experience. Although engagement in BDSM/kink may appear niche, our findings suggest that there are aspects which are inherently appealing to autistic people. These findings can be used to destigmatize both autistic intimacy and engagement in alternative intimate practices more broadly.


Why is this an important issue?: Autistic intimacy is an under-explored area, with very little focus on the lived experiences of autistic adults and their preferences. Bondage, discipline, domination, submission, sadism and (sado)masochism (BDSM) and kink are alternative intimate practices. There are aspects of BDSM/kink that may appeal to autistic people (e.g., sensory experiences such being restrained during intimacy). However, to date, there is very little research to explore this. What was the purpose of this study?: This study aimed at exploring the experiences and motivations of autistic people who engage in BDSM/kink from their own perspectives. What did the researchers do?: We conducted online video interviews with six autistic adults. We purposefully recruited a small number of people, choosing to use a method called "interpretative phenomenological analysis" that emphasizes deep explorations of the experiences of a small number of people. This method is particularly suitable for areas where very little research exists. What were the results of the study?: We found three key themes: Theme 1, "Practicing safe 'sex'" highlighted how the clear communication and explicit focus on consent present in BDSM/kink facilitated a feeling of safety for our participants, who found uncertainty during intimacy stressful. The sense of safety fostered within these interactions also provided the participants with a space to be their authentic selves, and "switch off" from the outside world. Theme 2, "So many ways to touch and be touched" was focused on the sensory lure of BDSM/kink, and how it provided exciting ways to explore sensory joy (and sometimes revulsion) for autistic people. Theme 3, "Subverting (neuro)normativity" showed how autistic people can find pleasure in intimate practices that other people might find unusual. What do these findings add to what was already known?: To our knowledge, this is the first study to explore autistic engagement in BDSM/kink from a first-person perspective. Our findings show that some alternative ways of being intimate might attract autistic people, because they provide stability, pathways for sensory exploration, or because they are fun in ways that other people sometimes find unexpected. What are potential weaknesses in the study?: We only interviewed a small number of people, and most of them shared similar interests within BDSM/kink. In future, it would be good to find out about the interests of a larger number of autistic people. How will these findings help autistic adults now or in the future?: There is very little research exploring autistic intimacy from a validating perspective. Our findings will help to destigmatize autistic intimacy and normalize conversations about things that people might think of as "taboo.".

16.
Autism ; : 13623613231220418, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38230649

RESUMO

LAY ABSTRACT: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence.

17.
J Laryngol Otol ; : 1-8, 2024 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-38644734

RESUMO

OBJECTIVE: Evidence for necrotising otitis externa (NOE) diagnosis and management is limited, and outcome reporting is heterogeneous. International best practice guidelines were used to develop consensus diagnostic criteria and a core outcome set (COS). METHODS: The study was pre-registered on the Core Outcome Measures in Effectiveness Trials (COMET) database. Systematic literature review identified candidate items. Patient-centred items were identified via a qualitative study. Items and their definitions were refined by multidisciplinary stakeholders in a two-round Delphi exercise and subsequent consensus meeting. RESULTS: The final COS incorporates 36 items within 12 themes: Signs and symptoms; Pain; Advanced Disease Indicators; Complications; Survival; Antibiotic regimes and side effects; Patient comorbidities; Non-antibiotic treatments; Patient compliance; Duration and cessation of treatment; Relapse and readmission; Multidisciplinary team management.Consensus diagnostic criteria include 12 items within 6 themes: Signs and symptoms (oedema, otorrhoea, granulation); Pain (otalgia, nocturnal otalgia); Investigations (microbiology [does not have to be positive], histology [malignancy excluded], positive CT and MRI); Persistent symptoms despite local and/or systemic treatment for at least two weeks; At least one risk factor for impaired immune response; Indicators of advanced disease (not obligatory but mut be reported when present at diagnosis). Stakeholders were unanimous that there is no role for secondary, graded, or optional diagnostic items. The consensus meeting identified themes for future research. CONCLUSION: The adoption of consensus-defined diagnostic criteria and COS facilitates standardised research reporting and robust data synthesis. Inclusion of patient and professional perspectives ensures best practice stakeholder engagement.

18.
Ann Otol Rhinol Laryngol ; 122(10): 632-41, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24294686

RESUMO

OBJECTIVES: Laryngopharyngeal reflux (LPR) is associated with inflammatory and neoplastic airway diseases. Gastric pepsin internalized by airway epithelial cells during reflux contributes to oxidative stress, inflammation, and carcinogenesis. Several plant extracts and compounds inhibit digestive enzymes and inflammatory or neoplastic changes to the esophagus in models of gastroesophageal reflux. This study examined the potential of chemoprotective phytochemicals to inhibit peptic activity and mitigate pepsin-mediated damage of airway epithelial cells. METHODS: Cultured human laryngeal and hypopharyngeal epithelial cells were pretreated with curcumin (10 micromol/L), ecabet sodium (125 microg/mL), and anthocyanin-enriched black-raspberry extract (100 microg/mL) 30 minutes before treatment with pepsin (0.1 mg/mL; 1 hour; pH 7). Controls were treated with media pH 7 or pepsin pH 7 without phytochemicals. Cell damage and proliferative changes were assessed by electron microscopy, cell count, thymidine analog incorporation, and real-time polymerase chain reaction array. Pepsin inhibition was determined by in vitro kinetic assay. RESULTS: Micromolar concentrations of curcumin, ecabet sodium, and black-raspberry extract inhibited peptic activity and pepsin-induced mitochondrial damage and hyperproliferation. Curcumin abrogated pepsin-mediated depression of tumor suppressor gene expression and altered the subcellular localization of pepsin following endocytosis. CONCLUSIONS: Several phytochemicals inhibit the pepsin-mediated cell damage underlying inflammatory or neoplastic manifestations of LPR. Dietary supplementation or adjunctive therapy with phytochemicals may represent novel preventive or therapeutic strategies for LPR-attributed disease.


Assuntos
Antocianinas/farmacologia , Anti-Inflamatórios não Esteroides/farmacologia , Curcumina/farmacologia , Dano ao DNA/efeitos dos fármacos , Células Epiteliais/patologia , Pepsina A/antagonistas & inibidores , Proliferação de Células/efeitos dos fármacos , Quimioterapia Combinada , Regulação da Expressão Gênica/efeitos dos fármacos , Genes Supressores de Tumor/efeitos dos fármacos , Genes Supressores de Tumor/fisiologia , Neoplasias de Cabeça e Pescoço , Humanos , Imuno-Histoquímica , Refluxo Laringofaríngeo/patologia , Refluxo Laringofaríngeo/prevenção & controle , Microscopia Eletrônica de Transmissão , Mitocôndrias/patologia , Pepsina A/metabolismo , Compostos Fitoquímicos/farmacologia
20.
Autism ; 27(2): 500-511, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35735166

RESUMO

LAY ABSTRACT: Research suggests that autistic people are more likely to be hurt by someone they know (e.g. a friend or a family member) compared to non-autistic people. In this study, we wanted to know how being hurt by someone you know affects autistic people, and what might help them recover. In total, 102 autistic people took part in an interview, where we asked questions like how being hurt by people they know had made them feel and whether anyone they had asked for help had done a good job of supporting them. We analysed what they had said using thematic analysis, which involved reading what everyone said and looking for common themes. Our findings showed that a lot of autistic people think it is normal to be hurt by people you know because it has happened to them so much. This makes many autistic people feel like they need to mask parts of themselves to stay safe, but this also makes them really exhausted. It took some people a long time to realise what had happened to them was wrong, and it was hard to ask for help. People who did ask for help often had bad experiences with professionals (e.g. police) who did not know much about autistic people. They said better support would come from creating more autistic-run support groups and educating people about autism. These findings are important for working out how to help people who have been hurt by people they know.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Bullying , Humanos , Emoções , Família
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