A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

The Community of Practice for Supporting Families of Persons With Intellectual and Developmental Disabilities.

It is important to continuously support families to improve the lives of people with intellectual and developmental disabilities and their family members. Using a life course approach to address strengths and needs of families, a National Community of Practice, infused with the Charting the LifeCourse framework, focused on systems change to improve policy and practices to enhance the lives of families. A qualitative analysis used the Value Creation framework to evaluate both process and product outcomes of 16 state communities of practice as to changes in knowledge and practices. Results emphasize the relative effectiveness of aspects of policy and overarching practices designed to support people with disabilities and their families in participating states.

Supporting Families Through the Charting the LifeCourse Framework.

Supporting families who have family members with intellectual and developmental disabilities (IDD) as they move through life is a critical need ( Reynolds, Palmer, & Gotto, 2018 ). The phrase, supporting families, juxtaposes the typical family support paradigm in response to the ongoing shrinkage of federal and state dollars and the recognition that parents and caregivers need services and supports to support their family member with IDD at home ( Amado, Stancliffe, McCarron, & McCallion, 2013 ). Within the family support movement, families are defined in the broadest terms, including those living in the same household, people who are affiliated by birth or choice, and others in the role of helping individuals with IDD succeed in life ( Reynolds et al., 2015 ; Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015 ).

Lessons from the Tohoku tsunami: A model for island avifauna conservation prioritization.

Earthquake-generated tsunamis threaten coastal areas and low-lying islands with sudden flooding. Although human hazards and infrastructure damage have been well documented for tsunamis in recent decades, the effects on wildlife communities rarely have been quantified. We describe a tsunami that hit the world's largest remaining tropical seabird rookery and estimate the effects of sudden flooding on 23 bird species nesting on Pacific islands more than 3,800 km from the epicenter. We used global positioning systems, tide gauge data, and satellite imagery to quantify characteristics of the Tohoku earthquake-generated tsunami (11 March 2011) and its inundation extent across four Hawaiian Islands. We estimated short-term effects of sudden flooding to bird communities using spatially explicit data from Midway Atoll and Laysan Island, Hawai'i. We describe variation in species vulnerability based on breeding phenology, nesting habitat, and life history traits. The tsunami inundated 21%-100% of each island's area at Midway Atoll and Laysan Island. Procellariformes (albatrosses and petrels) chick and egg losses exceeded 258,500 at Midway Atoll while albatross chick losses at Laysan Island exceeded 21,400. The tsunami struck at night and during the peak of nesting for 14 colonial seabird species. Strongly philopatric Procellariformes were vulnerable to the tsunami. Nonmigratory, endemic, endangered Laysan Teal (Anas laysanensis) were sensitive to ecosystem effects such as habitat changes and carcass-initiated epizootics of avian botulism, and its populations declined approximately 40% on both atolls post-tsunami. Catastrophic flooding of Pacific islands occurs periodically not only from tsunamis, but also from storm surge and rainfall; with sea-level rise, the frequency of sudden flooding events will likely increase. As invasive predators occupy habitat on higher elevation Hawaiian Islands and globally important avian populations are concentrated on low-lying islands, additional conservation strategies may be warranted to increase resilience of island biodiversity encountering tsunamis and rising sea levels.

Will the Effects of Sea-Level Rise Create Ecological Traps for Pacific Island Seabirds?

More than 18 million seabirds nest on 58 Pacific islands protected within vast U.S. Marine National Monuments (1.9 million km2). However, most of these seabird colonies are on low-elevation islands and sea-level rise (SLR) and accompanying high-water perturbations are predicted to escalate with climate change. To understand how SLR may impact protected islands and insular biodiversity, we modeled inundation and wave-driven flooding of a globally important seabird rookery in the subtropical Pacific. We acquired new high-resolution Digital Elevation Models (DEMs) and used the Delft3D wave model and ArcGIS to model wave heights and inundation for a range of SLR scenarios (+0.5, +1.0, +1.5, and +2.0 m) at Midway Atoll. Next, we classified vegetation to delineate habitat exposure to inundation and identified how breeding phenology, colony synchrony, and life history traits affect species-specific sensitivity. We identified 3 of 13 species as highly vulnerable to SLR in the Hawaiian Islands and quantified their atoll-wide distribution (Laysan albatross, Phoebastria immutabilis; black-footed albatross, P. nigripes; and Bonin petrel, Pterodroma hypoleuca). Our models of wave-driven flooding forecast nest losses up to 10% greater than passive inundation models at +1.0 m SLR. At projections of + 2.0 m SLR, approximately 60% of albatross and 44% of Bonin petrel nests were overwashed displacing more than 616,400 breeding albatrosses and petrels. Habitat loss due to passive SLR may decrease the carrying capacity of some islands to support seabird colonies, while sudden high-water events directly reduce survival and reproduction. This is the first study to simulate wave-driven flooding and the combined impacts of SLR, groundwater rise, and storm waves on seabird colonies. Our results highlight the need for early climate change planning and restoration of higher elevation seabird refugia to prevent low-lying protected islands from becoming ecological traps in the face of rising sea levels.

Obesity does not impair walking economy across a range of speeds and grades.

Despite the popularity of walking as a form of physical activity for obese individuals, relatively little is known about how obesity affects the metabolic rate, economy, and underlying mechanical energetics of walking across a range of speeds and grades. The purpose of this study was to quantify metabolic rate, stride kinematics, and external mechanical work during level and gradient walking in obese and nonobese adults. Thirty-two obese [18 women, mass = 102.1 (15.6) kg, BMI = 33.9 (3.6) kg/m(2); mean (SD)] and 19 nonobese [10 women, mass = 64.4 (10.6) kg, BMI = 21.6 (2.0) kg/m(2)] volunteers participated in this study. We measured oxygen consumption, ground reaction forces, and lower extremity kinematics while subjects walked on a dual-belt force-measuring treadmill at 11 speeds/grades (0.50-1.75 m/s, -3° to +9°). We calculated metabolic rate, stride kinematics, and external work. Net metabolic rate (E net/kg, W/kg) increased with speed or grade across all individuals. Surprisingly and in contrast with previous studies, E net/kg was 0-6% less in obese compared with nonobese adults (P = 0.013). External work, although a primary determinant of E net/kg, was not affected by obesity across the range of speeds/grades used in this study. We also developed new prediction equations to estimate oxygen consumption and E net/kg and found that E net/kg was positively related to relative leg mass and step width and negatively related to double support duration. These results suggest that obesity does not impair walking economy across a range of walking speeds and grades.

Population dynamics of Hawaiian seabird colonies vulnerable to sea-level rise.

Globally, seabirds are vulnerable to anthropogenic threats both at sea and on land. Seabirds typically nest colonially and show strong fidelity to natal colonies, and such colonies on low-lying islands may be threatened by sea-level rise. We used French Frigate Shoals, the largest atoll in the Hawaiian Archipelago, as a case study to explore the population dynamics of seabird colonies and the potential effects sea-level rise may have on these rookeries. We compiled historic observations, a 30-year time series of seabird population abundance, lidar-derived elevations, and aerial imagery of all the islands of French Frigate Shoals. To estimate the population dynamics of 8 species of breeding seabirds on Tern Island from 1980 to 2009, we used a Gompertz model with a Bayesian approach to infer population growth rates, density dependence, process variation, and observation error. All species increased in abundance, in a pattern that provided evidence of density dependence. Great Frigatebirds (Fregata minor), Masked Boobies (Sula dactylatra), Red-tailed Tropicbirds (Phaethon rubricauda), Spectacled Terns (Onychoprion lunatus), and White Terns (Gygis alba) are likely at carrying capacity. Density dependence may exacerbate the effects of sea-level rise on seabirds because populations near carrying capacity on an island will be more negatively affected than populations with room for growth. We projected 12% of French Frigate Shoals will be inundated if sea level rises 1 m and 28% if sea level rises 2 m. Spectacled Terns and shrub-nesting species are especially vulnerable to sea-level rise, but seawalls and habitat restoration may mitigate the effects of sea-level rise. Losses of seabird nesting habitat may be substantial in the Hawaiian Islands by 2100 if sea levels rise 2 m. Restoration of higher-elevation seabird colonies represent a more enduring conservation solution for Pacific seabirds.

Aging-related cocontraction effects during ankle strategy balance recovery following tether release in women.

Increased antagonistic muscle activation during balance recovery has been documented during proprioceptive reliant responses in older adults. The authors examined ankle muscle cocontraction levels in young and older adults during balance recovery from a tether-release-induced, vestibular-input-reliant perturbation. Nine healthy young adult and 9 older women without history of falls performed maximum isometric plantar flexion and dorsiflexion trials followed by balance recovery trials using the ankle strategy. Surface electromyography data normalized to isometric conditions were analyzed during the 100 ms prior to release, the 50 ms immediately after release, and the 100-ms epochs from 100-400 ms following release. No differences existed in gastrocnemius and soleus activity levels (p > .05), though antagonistic tibialis anterior activity was greater in the older adults during the 300-400 ms epoch (young: 23.5 ± 5.8%, older: 38.7 ± 9.4%; p = .001). Vestibular-dominated perturbations may increase antagonistic activity during the recovery phase in older adults, inhibiting efficient balance recovery during proprioceptive and vestibular reliant perturbations.

Avian botulism: a case study in translocated endangered Laysan Ducks (Anas laysanensis) on Midway Atoll.

Laysan Ducks are endemic to the Hawaiian archipelago and are one of the world's most endangered waterfowl. For 150 yr, Laysan Ducks were restricted to an estimated 4 km(2) of land on Laysan Island in the northwestern Hawaiian Islands. In 2004 and 2005, 42 Laysan Ducks were translocated to Midway Atoll, and the population increased to approximately 200 by 2007. In August 2008, mortality due to botulism type C was identified, and 181 adult, fledgling, and duckling carcasses were collected from August to October. Diseased birds were found on two islands within Midway Atoll at multiple wetlands; however, one wetland contributed most carcasses. The epidemic was discovered approximately 14-21 days after the mortality started and lasted for 50 additional days. The details of this epidemic highlight the disease risk to birds restricted to small island populations and the challenges associated with managing newly translocated endangered species. Frequent population monitoring for early disease detection and comprehensive wetland monitoring and management will be needed to manage avian botulism in endangered Laysan Ducks. Vaccination may also be beneficial to reduce mortality in this small, geographically closed population.

Re-evaluating the NCLEX-RN passing standard.

Setting passing standards is a critical component of the NCLEX examination process. This research was conducted to provide sufficient information to the National Council of State Boards of Nursing's (NCSBN) Board of Directors to,make a decision regarding the passing standard of the NCLEX-RN. This article illustrates the standard setting process that NCSBN uses. Surveys of educators and employers, a modified Angoff procedure, the Beuk compromise, and global assessments by content experts were methods used. The Rasch model and a presumed ability distribution were used as the framework to integrate these diverse perspectives regarding minimal competence. The revised passing standard was -0.28 logits. For many of the minimal competence estimates, the author did not have authorization to release the information. In those instances, estimates and results were fabricated to be similar to the actual results, yet different enough as to not disclose confidential information. The fabricated results are clearly marked. In conclusion, a variety of approaches, sources, and perspectives are necessary for the establishment of fair and appropriate standards on the NCLEX-RN.

Neoadjuvant and adjuvant chemotherapy with doxorubicin and docetaxel in locally advanced breast cancer.

Fifty patients with histologically confirmed stage III breast cancer were enrolled in this study of doxorubicin 50 mg/m2 and docetaxel 75 mg/m2 intravenously infused over 1 hour every 21 days with granulocyte colony-stimulating factor for 4 cycles. This was followed by surgery (mastectomy or lumpectomy) and 4 more cycles of doxorubicin/docetaxel postoperatively, then radiation and tamoxifen as indicated. Forty-six of the 50 patients (92%) completed neoadjuvant chemotherapy, and 38 patients (76%) completed adjuvant chemotherapy. Clinical response (defined as > 50% decrease in size of tumor) was achieved after 2 cycles in 37 patients (74%) and after 4 cycles in 42 of the 46 patients (91%) who finished neoadjuvant chemotherapy. Pathologic complete response (pCR; no pathologic invasive cancer) at the primary site was obtained in 7 of 46 patients (15%); 11 had no residual gross disease but did have microscopic persistence or microscopic complete response (mCR), for a combined pCR and mCR of 18 of 46 patients (39%). No treatment-related deaths occurred, but 3 patients died during treatment: 1 from progressive disease, 1 from a gastrointestinal bleeding, and 1 from unexplained sudden cardiac death. Dose-limiting toxicities were hematologic (grade 3 neutropenia in 5 patients and grade 4 in 23 patients). Congestive heart failure developed in 4 of 50 patients (8%), with a mean decrease in left ventricular ejection fraction (LVEF) of 20% in affected patients and 1 asymptomatic decrease in LVEF of 25%. At last follow-up, 10 patients had died of progressive disease, and 1 each from sudden cardiac death and lower gastrointestinal bleeding. In locally advanced breast cancer, neoadjuvant doxorubicin/docetaxel is a very active regimen that achieved pCR of 15% and a combined pCR and mCR of 39%, for an overall clinical response rate of 91%. Adjuvant chemotherapy was complicated by dropouts and congestive heart failure. This regimen should be used with close monitoring of cardiac function.

Supporting persons with developmental disability--a new model.

The way we think about and care for people with developmental disability has changed. Twenty-five years ago, society believed that caregivers always knew what was best for their individual and that he or she must be shielded, even shut away from, the harms that could occur in society. Now, people with disability participate in all aspects of community life. They are educated in local schools, live at home or in their own home, and compete with others in the job market. Caregiving for people with developmental disability is no longer modeled on medicine or stigmatizing labels. Instead, caregivers have become support persons who focus on identifying community resources and making the environment friendlier and safer for persons with disability.