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1.
bioRxiv ; 2024 Aug 26.
Article in English | MEDLINE | ID: mdl-39253469

ABSTRACT

The brain is an organ comprised mostly of long-lived, quiescent cells that perform vital functions throughout an animal's life. Due to the brain's limited regenerative ability, these long-lived cells must engage unique mechanisms to cope with accumulated damage over time. We have shown that a subset of differentiated neuronal and glial cells in the fruit fly brain become polyploid during adulthood. Cell cycle re-entry in the brain has previously been associated with neurodegeneration, but there may be a more complex relationship between polyploidy and cell fitness in the brain. Here, we examine how known lifespan modifiers influence the accumulation of polyploidy in the aging fly brain. Flies aged at a low temperature, or with a low protein diet, accumulate polyploid cells in the brain more slowly than expected if this phenotype were solely regulated by lifespan mechanisms. Despite the slower accumulation of polyploid cells, animals under conditions that extend lifespan eventually reach similar levels of polyploidy in the brain as controls. Our work suggests known lifespan modifiers can influence the timing of cell cycle re-entry in the adult brain, indicating there is a flexible window of cell cycle plasticity in the aging brain.

2.
Disabil Health J ; : 101675, 2024 Jul 31.
Article in English | MEDLINE | ID: mdl-39142940

ABSTRACT

BACKGROUND: People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles. OBJECTIVES: We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities. METHODS: We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility. RESULTS: The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher. CONCLUSIONS: Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

3.
Eur J Surg Oncol ; 50(11): 108597, 2024 Aug 10.
Article in English | MEDLINE | ID: mdl-39173461

ABSTRACT

INTRODUCTION: Laparoscopic Complete Mesocolic Excision (CME) with Central Vascular Ligation (CVL) in colon cancer surgery has not been broadly adopted in part because of safety concerns. Pre-operative 3-D virtual modelling (3DVM) may help but needs validation. METHODS: 3DVM were routinely constructed from CT mesenteric angiograms (CTMA) using a commercial service (Visible Patient, Strasbourg, France) for consecutive patients during our CMECVL learning curve over three years. 3DVMs were independently checked versus CTMA and operative findings. CMECVL outcomes were compared versus other patients undergoing standard mesocolic excision (SME) surgery laparoscopically in the same hospital as control. Stakeholders were studied regarding 3DVM use and usefulness (including detail retention) versus CTMA and a physical 3D-printed model. RESULTS: 26 patients underwent 3DVM with intraoperative display during laparoscopic CMECVL within existing workflows. 3DVM accuracy was 96 % re arteriovenous variations at patient level versus CTMA/intraoperative findings including accessory middle colic artery identification in three patients. Twenty-two laparoscopic CMECVL with 3DVM cases were compared with 49 SME controls (age 69 ± 10 vs 70.9 ± 11 years, 55 % vs 53 % males). There were no intraoperative complications with CMECVL and similar 30-day postoperative morbidity (30 % vs 29 %), hospital stay (9 ± 3 vs 12 ± 13 days), 30-day readmission (6 % vs 4 %) and reoperation (0 % vs 4 %) rates. Intraoperative times were longer (215.7 ± 43.9 vs 156.9 ± 52.9 min, p=<0.01) but decreased significantly over time. 3DVM surveys (n = 98, 20 surgeons, 48 medical students, 30 patients/patient relatives) and comparative study revealed majority endorsement (90 %) and favour (87 %). CONCLUSION: 3DVM use was positively validated for laparoscopic CMECVL and valued by clinicians, students, and patients alike.

4.
Disabil Health J ; 17(4): 101669, 2024 Oct.
Article in English | MEDLINE | ID: mdl-38960791

ABSTRACT

BACKGROUND: In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion. OBJECTIVE: We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability. METHODS: We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis. RESULTS: Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions. CONCLUSIONS: Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one's own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights.


Subject(s)
Disabled Persons , Informed Consent , Intellectual Disability , Humans , Intellectual Disability/psychology , Disabled Persons/psychology , United States , Adult , Behavioral Research/methods , Decision Making
5.
Med Sci Sports Exerc ; 56(10): 1916-1925, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-38778470

ABSTRACT

INTRODUCTION: Children's anxiety is associated with decreased cognitive performance. One well-established behavioral intervention to transiently improve cognitive performance in children is acute aerobic exercise (AAE). Thus far, however, it is unclear whether the benefits of AAE on cognition vary based on individual differences in children's anxiety level. Therefore, we investigated whether trait anxiety levels mediate the effects of AAE on cognitive outcomes in preadolescent children. METHODS: Ninety-five preadolescent children (9 to 11 yr, 41 females) underwent two experimental interventions in a random, crossover, and counterbalanced design: an exercise protocol (20 min of walking at 65% to 75% of HRpeak) and a nonexercise control (seated rest). Behavioral indices of cognitive performance (accuracy, reaction times, response time (RT) variability) were assessed before and after each intervention using a modified flanker task. The effects of each intervention on cognitive performance were calculated as pre- to postintervention differences (effect scores). These scores were first correlated with children's personal characteristics: anxiety (STAIC), sex, age, body mass index, intelligence quotient, and aerobic fitness. Significant correlations guided subsequent hierarchical regression models, which specifically tested for associations between the effects scores and anxiety levels while controlling for remaining relevant covariates. RESULTS: Regression analysis revealed that anxiety was a significant predictor of the effects that AAE and rest had on cognitive performance. Specifically, higher anxiety scores were associated with greater exercise-induced cognitive benefits (increased accuracy, decreased RT variability; all P < 0.05) and greater rest-induced cognitive impairments (decreased accuracy, increased RT variability; all P < 0.01). CONCLUSIONS: These findings suggest that children reporting higher trait anxiety might experience greater cognitive benefits from a single bout of AAE.


Subject(s)
Anxiety , Cognition , Cross-Over Studies , Exercise , Humans , Child , Female , Male , Cognition/physiology , Exercise/psychology , Exercise/physiology , Reaction Time
6.
Article in English | MEDLINE | ID: mdl-38710013

ABSTRACT

IMPORTANCE: Restricting activity after midurethral slings is an unproven practice. OBJECTIVE: The objective of this study was to evaluate the effect of postoperative activity restriction on satisfaction and outcomes after slings. STUDY DESIGN: This was a multicenter, 2-arm, noninferiority randomized controlled trial. Patients aged 18-85 years undergoing treatment with a midurethral sling were randomized 1:1 to postoperative activity restriction or liberal activity. Restrictions included avoidance of strenuous exercise and heavy lifting. The liberal group was allowed to resume activity at their discretion. Our primary outcome was satisfaction with postoperative instruction at 2 weeks. Secondary outcomes included surgical failure, mesh exposure rates, and other adverse events. RESULTS: In total, 158 patients were randomized with 80 to the liberal group and 78 to the restricted group. At 2 weeks, 54 (80.6%) of patients in the liberal group and 48 (73.9%) of patients in the restricted group were satisfied. We found statistical evidence supporting the hypothesis that postoperative liberal activity instruction is noninferior to activity restriction with regard to patient satisfaction (P = 0.0281). There was no significant difference in strenuous activity at 2 weeks (P = 0.0824). The liberal group reported significantly more moderate activity at 2 weeks (P = 0.0384) and more strenuous activity at 6 weeks and 6 months (P = 0.0171, P = 0.0118, respectively). The rate of recurrent or persistent stress incontinence for liberal versus restricted groups was 18.52% versus 23.53% (P = 0.635). There were no statistically significant differences in complication rates. CONCLUSIONS: Postoperative liberal activity was noninferior to activity restriction with regard to patients' satisfaction. There was no evidence supporting a statistically significant association between postoperative instruction and negative surgical outcomes.

7.
Radiol Case Rep ; 19(6): 2483-2486, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38577129

ABSTRACT

A 51-year-old woman presented to her local emergency department with acute onset right-sided flank pain and nausea. Her blood results on admission were largely unremarkable aside from leucocytosis and neutrophilia. Two days after admission, she developed the following: stage 3 AKI with oliguria, anaemia, thrombocytopenia, and acute derangement of liver function tests. A computed tomography of the kidney ureter bladder demonstrated a right-sided 4 mm obstructing vesicoureteric junction stone with associated hydronephrosis and hydroureter. She was transferred to a tertiary care centre; gram negative sepsis was confirmed with a Proteus on blood culture and laboratory findings were in keeping with DIC. She was treated with Tazobactam/Piperacillin and intravenous fluids. In addition, further imaging showed improving right-sided hydronephrosis and left renal cortical necrosis. The aetiology of this presentation was sepsis complicated by disseminated intravascular coagulation. The coagulopathy likely contributed to the unilateral renal cortical necrosis. Cortical necrosis usually affects both kidneys, and is typically a complication of sepsis, shock, or obstetrical trauma. To our knowledge, there are only 2 reported cases of unilateral renal cortical necrosis and contralateral hydronephrosis with renal colic and septic shock. Potential pathogenetic mechanisms are discussed.

8.
iScience ; 27(4): 109408, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38523798

ABSTRACT

Post-learning sleep is essential for hippocampal memory processing, including contextual fear memory consolidation. We labeled context-encoding engram neurons in the hippocampal dentate gyrus (DG) and assessed reactivation of these neurons after fear learning. Post-learning sleep deprivation (SD) selectively disrupted reactivation of inferior blade DG engram neurons, linked to SD-induced suppression of neuronal activity in the inferior, but not superior DG blade. Subregion-specific spatial profiling of transcripts revealed that transcriptomic responses to SD differed greatly between hippocampal CA1, CA3, and DG inferior blade, superior blade, and hilus. Activity-driven transcripts, and those associated with cytoskeletal remodeling, were selectively suppressed in the inferior blade. Critically, learning-driven transcriptomic changes differed dramatically between the DG blades and were absent from all other regions. Together, these data suggest that the DG is critical for sleep-dependent memory consolidation, and that the effects of sleep loss on the hippocampus are highly subregion-specific.

9.
Matern Child Health J ; 28(7): 1178-1187, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38457098

ABSTRACT

INTRODUCTION: Increasing family planning xutilization in low-income countries to improve health outcomes of women and children is a global priority. The Federated States of Micronesia (FSM) has poor maternal child health outcomes; therefore, this study aimed to examine family planning utilization in Pohnpei State, FSM. METHODS: This cross-sectional study sought to characterize family planning utilization in adult women of reproductive age and high school age adolescents in Pohnpei using representative survey data collected in 2019 (N = 570 and N = 1726, respectively). Chi-square tests were used to determine significant factors associated with family planning utilization. RESULTS: Among adult women of reproductive age (18-49 years old) not trying to get pregnant, 31.6% reported using contraception during last intercourse. Contraceptive use was significantly lower among younger women (18-24 years old) (21.7%, p = 0.021), unmarried women (18.6%, p < 0.001), those without health insurance (28.7%, p = 0.030), those who have never had a pap smear (20.5%, p < 0.001), and those who have never been pregnant (14.5%, p < 0.002). Among adolescents who reported being sexually active, 28.5% reported using any contraception at last intercourse and 22.6% reported using a condom at last intercourse. Condom use among sexually active adolescents was lowest among 12th graders (13.5%, p < 0.001) and girls (16.8%, p = 0.004). CONCLUSIONS: Our findings suggest that young, unmarried, never pregnant women face an unmet need for family planning. Additionally, women with lower access to and use of healthcare services have lower use of family planning.


Subject(s)
Contraception Behavior , Family Planning Services , Humans , Female , Adolescent , Cross-Sectional Studies , Adult , Family Planning Services/statistics & numerical data , Micronesia , Contraception Behavior/statistics & numerical data , Middle Aged , Pregnancy , Young Adult , Contraception/statistics & numerical data , Contraception/methods , Surveys and Questionnaires
11.
Dermatol Surg ; 50(3): 272-276, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38113172

ABSTRACT

BACKGROUND: Patients with darker skin phototypes self-report less facial aging than their lighter-skinned counterparts. However, the association of skin phototype with the type of cosmetic procedures received, is yet to be established in a Canadian context. OBJECTIVE: To compare the pattern of nonsurgical cosmetic procedures performed on people with different Fitzpatrick SPTs. MATERIALS AND METHODS: Cross-sectional study of patient encounters from October 2020-April 2022. Charts and photographs were reviewed and analyzed for age, sex, SPT, and procedure type. Participants were stratified by SPT into 2 cohorts: SPT I-III and SPT IV-VI. SPTs were collapsed into groups based on definitions of "skin of color" (SPT IV-VI) in previous literature. RESULTS: We analyzed 350 patients with mean age 43.4, of whom 320 (91%) were female and 30 (9%) were male. The SPT I-III cohort was older (mean age 45 vs 38.5 years, p < .0001) and more frequently underwent neuromodulator injection. The SPT IV-VI cohort more frequently underwent microneedling, platelet-rich plasma, or electrodessication. CONCLUSION: There are distinct patterns of cosmetic procedures performed. The SPT I-III cohort more commonly received procedures to manage facial aging. The SPT IV-VI cohort was younger and more commonly underwent procedures to manage hyperpigmentation.


Subject(s)
Hyperpigmentation , Skin , Humans , Female , Male , Adult , Middle Aged , Canada , Cross-Sectional Studies , Hyperpigmentation/etiology , Hyperpigmentation/therapy , Aging
12.
Am J Community Psychol ; 72(3-4): 317-327, 2023 12.
Article in English | MEDLINE | ID: mdl-37853910

ABSTRACT

People living with physical, sensory, intellectual, and/or developmental disabilities experience complex social, environmental, political, and cultural challenges along with stigma and marginalization in education, employment, and community life. These multiple and complex barriers often hinder their full and effective participation in society. In this reflection, we curated articles on physical, sensory, intellectual, and/or developmental disabilities published in the American Journal of Community Psychology from 1973 to 2022. We reviewed titles and abstracts to identify themes that grouped manuscripts in relevant community psychology core concepts and values. From our analysis, five themes emerged: (a) promoting empowerment and advocacy; (b) promoting organizations and settings that support people with disabilities; (c) including people with disabilities in knowledge production; (d) promoting social justice in disability research, and (e) promoting support networks of families of people with disabilities. We conclude this reflection with a discussion of recommendations for future research, practice, and a call to action.


Subject(s)
Disabled Persons , Intellectual Disability , Humans , Social Justice , Employment , Intellectual Disability/psychology
13.
Am J Intellect Dev Disabil ; 128(6): 398-410, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37875271

ABSTRACT

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth.


Subject(s)
Intellectual Disability , Social Discrimination , Humans , Social Discrimination/prevention & control , Research/trends
14.
Front Surg ; 10: 1038952, 2023.
Article in English | MEDLINE | ID: mdl-36911616

ABSTRACT

Purpose: The free bilamellar autograft (FBA) procedure involves harvesting a free, full-thickness section of eyelid tissue from one of the patient's healthy eyelids to reconstruct a large defect of the involved eyelid. No vascular augmentation is employed. The purpose of this study was to determine the structural and cosmetic results of this procedure. Methods: A case series was performed, looking at patients who underwent the FBA procedure for large, full-thickness eyelid defects (>50% eyelid length) between 2009 and 2020 at a single oculoplastic surgical centre. Basal cell carcinomas most frequently met criteria for the procedure. OHSN-REB waived ethics approval. All surgeries were performed by one surgeon. A single operation, with surgical steps reported in detail, was completed with follow-up documentation at ideally 1 day, 1 week, 1 month, 3 months, 6 months, and 1 year. The mean follow-up period was 28 months. Results: Thirty-one patients (17 males, 14 females, mean age 78-years-old) were included in the case series. Comorbidities included diabetes and smoking. Most patients had known basal cell carcinomas removed from the upper or lower eyelid. The mean widths of the recipient and donor sites were 18.8 and 11.5 mm, respectively. All 31 FBA surgeries resulted in structurally functional, cosmetically pleasing, and viable eyelids. Six patients developed minor graft dehiscence, 3 developed an ectropion, and 1 developed mild superficial graft necrosis secondary to frostbite, which fully recovered. Three healing phases were identified. Conclusion: This case series adds to the currently sparse data on the free bilamellar autograft procedure. The surgical technique is clearly articulated and illustrated. The FBA procedure is a simple and efficient alternative to current surgical techniques in the reconstruction of full-thickness upper and lower eyelid defects. The FBA provides functional and cosmetic success, despite the absence of an intact blood supply, with decreased operative time and faster recovery.

15.
JAMA Cardiol ; 8(4): 366-375, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36884247

ABSTRACT

Importance: Pre-heart failure with preserved ejection fraction (pre-HFpEF) is common and has no specific therapy aside from cardiovascular risk factor management. Objective: To investigate the hypothesis that sacubitril/valsartan vs valsartan would reduce left atrial volume index using volumetric cardiac magnetic resonance imaging in patients with pre-HFpEF. Design, Setting, and Participants: The Personalized Prospective Comparison of ARNI [angiotensin receptor/neprilysin inhibitor] With ARB [angiotensin-receptor blocker] in Patients With Natriuretic Peptide Elevation (PARABLE) trial was a prospective, double-blind, double-dummy, randomized clinical trial carried out over 18 months between April 2015 and June 2021. The study was conducted at a single outpatient cardiology center in Dublin, Ireland. Of 1460 patients in the STOP-HF program or outpatient cardiology clinics, 461 met initial criteria and were approached for inclusion. Of these, 323 were screened and 250 asymptomatic patients 40 years and older with hypertension or diabetes, elevated B-type natriuretic peptide (BNP) greater than 20 pg/mL or N-terminal pro-b-type natriuretic peptide greater than 100 pg/mL, left atrial volume index greater than 28 mL/m2, and preserved ejection fraction greater than 50% were included. Interventions: Patients were randomized to angiotensin receptor neprilysin inhibitor sacubitril/valsartan titrated to 200 mg twice daily or matching angiotensin receptor blocker valsartan titrated to 160 mg twice daily. Main Outcomes and Measures: Maximal left atrial volume index and left ventricular end diastolic volume index, ambulatory pulse pressure, N-terminal pro-BNP, and adverse cardiovascular events. Results: Among the 250 participants in this study, the median (IQR) age was 72.0 (68.0-77.0) years; 154 participants (61.6%) were men and 96 (38.4%) were women. Most (n = 245 [98.0%]) had hypertension and 60 (24.0%) had type 2 diabetes. Maximal left atrial volume index was increased in patients assigned to receive sacubitril/valsartan (6.9 mL/m2; 95% CI, 0.0 to 13.7) vs valsartan (0.7 mL/m2; 95% CI, -6.3 to 7.7; P < .001) despite reduced markers of filling pressure in both groups. Changes in pulse pressure and N-terminal pro-BNP were lower in the sacubitril/valsartan group (-4.2 mm Hg; 95% CI, -7.2 to -1.21 and -17.7%; 95% CI, -36.9 to 7.4, respectively; P < .001) than the valsartan group (-1.2 mm Hg; 95% CI, -4.1 to 1.7 and 9.4%; 95% CI, -15.6 to 4.9, respectively; P < .001). Major adverse cardiovascular events occurred in 6 patients (4.9%) assigned to sacubitril/valsartan and 17 (13.3%) assigned to receive valsartan (adjusted hazard ratio, 0.38; 95% CI, 0.17 to 0.89; adjusted P = .04). Conclusions and Relevance: In this trial of patients with pre-HFpEF, sacubitril/valsartan treatment was associated with a greater increase in left atrial volume index and improved markers of cardiovascular risk compared to valsartan. More work is needed to understand the observed increased cardiac volumes and long-term effects of sacubitril/valsartan in patients with pre-HFpEF. Trial Registration: ClinicalTrials.gov Identifier: NCT04687111.


Subject(s)
Diabetes Mellitus, Type 2 , Heart Failure , Hypertension , Male , Humans , Female , Aged , Heart Failure/diagnostic imaging , Heart Failure/drug therapy , Heart Failure/chemically induced , Natriuretic Peptide, Brain , Angiotensin Receptor Antagonists , Neprilysin , Diabetes Mellitus, Type 2/drug therapy , Tetrazoles/adverse effects , Angiotensin-Converting Enzyme Inhibitors/therapeutic use , Stroke Volume , Valsartan/therapeutic use , Heart Atria , Hypertension/drug therapy
17.
Arch Dermatol Res ; 315(4): 735-749, 2023 May.
Article in English | MEDLINE | ID: mdl-36443500

ABSTRACT

Photoprotection is a critical health prevention strategy to reduce the deleterious effects of ultraviolet radiation (UVR) and visible light (VL). Methods of photoprotection are reviewed in this paper, with an emphasis on sunscreen. The most appropriate sunscreen formulation for personal use depends on several factors. Active sunscreen ingredients vary in their protective effect over the UVR and VL spectrum. There are dermatologic diseases that cause photosensitivity or that are aggravated by a particular action spectrum. In these situations, sunscreen suggestions can address the specific concern. Sunscreen does not represent a single entity. Appropriate personalized sunscreen selection is critical to improve compliance and clinical outcomes. Health care providers can facilitate informed product selection with awareness of evolving sunscreen formulations and counseling patients on appropriate use. This review aims to summarize different forms of photoprotection, discuss absorption of sunscreen ingredients, possible adverse effects, and disease-specific preferences for chemical, physical or oral agents that may decrease UVR and VL harmful effects.


Subject(s)
Drug-Related Side Effects and Adverse Reactions , Sunscreening Agents , Humans , Sunscreening Agents/adverse effects , Ultraviolet Rays/adverse effects , Light , Pharmaceutical Vehicles
18.
Autism ; 27(1): 65-75, 2023 01.
Article in English | MEDLINE | ID: mdl-35362339

ABSTRACT

LAY ABSTRACT: Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Disabled Persons , Humans , Workplace/psychology , Disabled Persons/psychology , Disclosure
19.
Am J Econ Sociol ; 83(2): 445-461, 2023 Nov.
Article in English | MEDLINE | ID: mdl-39290235

ABSTRACT

Here we develop two new social indices: The ADA PARC Absolute Economic Opportunity Index and the ADA PARC Relative Economic Opportunity Index. These indices allow us novel examinations of economic equity between people with and without disabilities within a U.S. State and between people with disabilities in different states using aggregations of multiple component economic indicators. These represent the first efforts to offer U.S. indices of this focus, an important development given the distinct economic needs of people with disabilities and the value in accounting for distinct national policies. The indices rely on U.S. Census and other data on economic opportunity by population. These indices provide comprehensive insight into economic disparities between people with and without disabilities and among people with disabilities in the US. We find that state/territory values for the two indices are moderately positively correlated, suggesting that relative and absolute economic opportunity for people with disabilities arise from both common and distinct processes. Policy implications for low economic opportunity states are discussed.

20.
Disabil Health J ; 15(4): 101368, 2022 Oct.
Article in English | MEDLINE | ID: mdl-36123292

ABSTRACT

BACKGROUND: Although scientific breakthroughs can promote health equity, there is concern that adults with intellectual disability, a health disparities population, may be excluded from clinical trials. OBJECTIVE: To determine the extent to which adults with intellectual disability are subject to exclusion from National Institutes of Health (NIH)-funded clinical trials. METHODS: We studied recent NIH-funded Phase 2/3, 3, and 4 clinical trials of United States-based working-age adults (>18 < 55 years of age) listed in ClinicalTrials.gov. We coded eligibility criteria for inclusion, direct exclusion, and indirect exclusion of adults with intellectual disability. RESULTS: We rarely identified studies that directly include adults with intellectual disability. Most studies (74.6%) had eligibility criteria that directly and/or indirectly exclude adults with intellectual disability. Approximately one-third of studies had direct exclusion criteria based on cognitive impairment or diagnosis of intellectual disability. Nearly 65% of studies indirectly excluded adults with intellectual disability based on factors likely associated with intellectual disability (e.g., functional capacity, inability to read/write, and/or research staff discretion). CONCLUSIONS: We found less exclusion based on diagnosis of intellectual disability than anticipated. Nonetheless, about three-fourths of studies had eligibility criteria which would likely lead to the direct and/or indirect exclusion of adults with intellectual disability. Our findings suggest substantial cause for concern that adults with intellectual disability experience widespread exclusion from NIH-funded clinical trials-exclusion that may lack appropriate justification and assessment. Consequently, this group is denied equal access to the potential benefits of scientific discovery. We provide recommendations for approaches to include adults with intellectual disability.

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