This article considers key ethical, legal, and medical dilemmas arising for people with disabilities in the COVID-19 pandemic. We highlight the limited application of existing frameworks of emergency ...planning with and for people with disabilities in the COVID-19 pandemic, explore key concerns and issues affecting the health care of people with disabilities (i.e., access to information and clinician-patient communication, nondiscrimination and reasonable accommodations, and rationing of medical goods), and indicate possible solutions. Finally, we suggest clinical and public health policy measures to ensure that people with disabilities are included in the planning of future pandemic-related efforts.The devastation evoked by the COVID-19 pandemic raises challenging dilemmas in bioethics. It also speaks to social justice issues that have plagued historically marginalized communities in the United States.Responses to the pandemic must be bound by legal standards, principles of distributive justice, and societal norms of protecting vulnerable populations-core commitments of public health-to ensure that inequities are not exacerbated, and should provide a pathway for improvements to ensure equitable access and treatment in the future.
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CEKLJ, DOBA, FSPLJ, IZUM, KILJ, NUK, ODKLJ, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other ...disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion ...of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19.
To describe COVID-19 outcomes among people with IDD living in residential groups ...homes in the state of New York and the general population of New York State.
Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020.
People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates – 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality – 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate – 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region.
COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
Janus Kinase Inhibition in the Aicardi-Goutières Syndrome Vanderver, Adeline; Adang, Laura; Gavazzi, Francesco ...
New England journal of medicine/The New England journal of medicine,
09/2020, Volume:
383, Issue:
10
Journal Article
ABSTRACT
BACKGROUND
Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.
OBJECTIVE
To ...compare the healthcare experiences of autistic and non-autistic adults via an online survey.
METHODS
We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.
RESULTS
Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).
CONCLUSION
A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Abstract Background Community-based participatory research (CBPR) seeks to improve the responsiveness of science to community priorities and foster positive community change through equitable ...research collaborations between scientists and community members. CBPR resonates with disability rights principles, and is increasingly being used in disability research, though there are few studies of its use with people with developmental disabilities. Objective We conducted a prospective qualitative study to explore the experiences of scientists and community members in a multi-year CBPR project with people with developmental disabilities. Methods Over the four project years, we conducted periodic individual interviews and focus groups with members of the CBPR project, and used an inductive thematic analysis to identify and develop relational themes. Results We identified factors that contributed to the success of the CBPR project and factors that presented challenges to the CBPR project. We also identified potential individual, project, and societal level impacts of the CBPR project. Conclusions CBPR with people with developmental disabilities is possible and fruitful, and can serve as an effective model for the full inclusion of people with developmental disabilities in science and society at large.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
Background The hair pull test lacks validation and has unclear pretest guidelines. Objective We sought to quantify normal hair pull test values and elucidate the effect of pretest hair washing and ...brushing. The impact of hair texture and lifestyle was also examined. Methods Participants (n = 181) completed a questionnaire recording demographics, medications, and hair health/history. A single hair pull test (scalp vertex) was performed. Results The mean number of hairs removed per pull was 0.44 (SD 0.75). There was no significant difference in the mean number of hairs removed regardless of when participants washed ( P = .20) or brushed ( P = .25) their hair. Hair pull test values were similar between Caucasian-, Asian-, and Afro-textured hair. There was no significant difference in hair pull values between participants taking medications affecting hair loss and participants not taking these medications ( P = .33). Tight hairstyles did not influence hair pull test values. Limitations Participant hair washing and brushing could not be controlled during the study, but this information was documented and analyzed. Conclusion Normal values for the hair pull test should be reduced to 2 hairs or fewer (97.2% of participants). The current 5-day restriction on pretest hair washing can be reduced and brushing be made permissible.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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