Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19.

BACKGROUND: Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19. OBJECTIVE: The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic. METHODS: A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic. RESULTS: Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048). CONCLUSIONS: Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.

BACKGROUND: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research. METHODS: A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. RESULTS: Eleven key barriers to research participation were identified including gaps in researchers' knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. CONCLUSION: Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Health Narratives as a Therapeutic Tool for Health Care Access for People with Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) have unique and complex health care needs that require health care access. Barriers, such as decreased health literacy and a lack of experienced physicians working with this population, make access to inclusive health care increasingly difficult. Therefore, it is important for occupational therapists to intentionally create opportunities to improve healthcare access and utilization for this population. This paper describes the collaborative health narrative development process as well as the inclusion of three examples created by co-authors with intellectual or developmental disability.

Container Closure Integrity Test Method Development on Vials Stored at -80°C Using Headspace Carbon Dioxide Analysis.

Maintaining container closure integrity (CCI) is challenging for vials that are packaged at room temperature and stored and/or transported at a colder temperature, such as -80°C. Cold temperatures can affect the sealing mechanisms of the package because of the glass transition temperature (-50°C to -70°C) of the rubber stopper used to seal the vial and the different coefficients of thermal expansion of each of the primary packaging components. Most CCI tests are conducted at room temperature and detect leaks from permanent defects that always exist under all storage conditions. However, previous research shows that temporary leaks that develop during cold storage can reseal when the vials are brought back up to room temperature and, therefore, can no longer be detected. The following study demonstrates two methods for CCI testing that can be performed with product-filled, frozen vials, packaged with unmodified headspace conditions using carbon dioxide ingress as a leak indicator. The two methods utilize different gas flow depending on the storage conditions. The first method generates effusive flow through a leaking defect, whereas the second generates diffusive flow. Experimental data revealed the effusive procedure detected laser-drilled defects ≥2 µm in empty glass vials and microwire defects in empty glass and plastic vials with effective defect sizes ≥0.4 and 0.6 µm, respectively. The diffusive procedure detected laser-drilled defects ≥2 µm in empty glass vials and microwire defects in empty glass and plastic vials with effective defect sizes ≥ 0.8 and 2.6 µm, respectively. Liquid product interactions with the defect as well as length of the storage period were also explored.

Container Closure Integrity Test Using Frequency Modulation Spectroscopy Headspace Analysis with Carbon Dioxide as a Tracer Gas.

As described in USP <1207>, the container closure integrity (CCI) of a pharmaceutical package must be maintained throughout the product lifecycle to ensure sterility and stability. Current CCI test methods can be time-consuming, destructive, and lack the required sensitivity. This study presents a novel, fast, and nondestructive method for CCI testing that uses carbon dioxide as a tracer gas under effusive pressure conditions. Two types of defects were tested: laser-drilled defects located in the glass body (2, 5, and 10 µm nominal diameter) and tungsten wires inserted between the stopper and the landing seal of the vial (41, 64, and 80 µm outer diameter). During each test session, vials were placed in a pressure vessel, isolated from ambient conditions, and pressure-cycled by first pulling a vacuum and then applying an overpressure of pure carbon dioxide gas. After being exposed to 20 psig (34.7 psia) of carbon dioxide for 30 min, the overpressure was released and the vials were measured on an FMS-Carbon Dioxide Headspace Analyzer. This headspace gas analyzer utilizes a tunable diode laser absorption spectroscopy technique that employs frequency modulation to enhance measurement sensitivity. An increase of ≥1 torr in the headspace carbon dioxide content after completion of the pressure cycling procedure was intended to serve as confirmation of leak detection. All empty vials with either a 2 µm laser-drilled defect or 41 µm wire (effective defect size ∼2 µm), or greater, at the stopper-seal interface were detected by this method. Furthermore, vials filled with 1 mg/mL bovine serum albumin in phosphate-buffered saline containing a 5 µm laser-drilled defect below the liquid level or a 64 µm wire (effective defect size ∼6.1 µm), or greater, at the stopper-seal interface (defect above the liquid level) were detected. This test can be used for a wide variety of vial types and headspace compositions.