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Importance: At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members. Observations: People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care. Conclusions and Relevance: Consensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.
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Discapacidades del Desarrollo , Política de Salud , Discapacidad Intelectual , Humanos , Discapacidad Intelectual/terapia , Discapacidades del Desarrollo/terapia , Estados UnidosRESUMEN
IMPORTANCE: Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. OBJECTIVE: To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. DESIGN: Quasi-experimental pretest-posttest design. SETTING: In-home via telehealth. PARTICIPANTS: Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. INTERVENTION: The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. OUTCOMES AND MEASURES: Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. RESULTS: Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. CONCLUSIONS AND RELEVANCE: The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.
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Trastorno Autístico , Cuidadores , Niño , Humanos , Cuidadores/educación , Padres , Autoeficacia , Carga del CuidadorRESUMEN
Attention-deficit/hyperactivity disorder (ADHD) commonly co-occurs in autistic children. However, additional research is needed to explore the differences in motor skills and sensory features in autistic children with and without ADHD, as well as the impacts of these factors on daily living skills (DLS). This observational study sought to fill this gap with 67 autistic children (6.14-10.84 years-old), 43 of whom had ADHD. Autistic children with ADHD demonstrated higher sensory features and lower motor skills than autistic children without ADHD. In examining autism and ADHD features dimensionally, we found that overall sensory features, seeking, and hyporesponsiveness were driven by both autism and ADHD features, whereas motor skills, enhanced perception, and hyperresponsiveness were driven by only autism features. Additionally, in using these dimensional variables of autism and ADHD features, we found that differences in motor skills, sensory and autism features, but not ADHD features, impact DLS of autistic children, with autism features and motor skills being the strongest individual predictors of DLS. Together, these results demonstrate the uniqueness of motor skills and sensory features in autistic children with and without ADHD, as well as how autism features, sensory features, and motor skills contribute to DLS, emphasizing the importance of a comprehensive understanding of each individual and complexities of human development when supporting autistic children.
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LAY ABSTRACT: Feeding challenges are common for autistic children. Currently, research and intervention for feeding challenges focuses on single factors (e.g. behavior or sensory). Research is needed to understand the complexity of feeding challenges. This study provides a comprehensive description of feeding challenges. Furthermore, this study identifies what factors predict the severity and type of feeding challenges experienced by autistic children. Using the Survey for Characterization of Feeding Challenges in Autistic Children-United States, 427 caregivers of autistic children provided information about their child's feeding challenges. Children were between the ages of 2 and 12 with an average age of 8.42 years. Children in the study had a wide variety of feeding difficulties including challenges in early childhood, sensory challenges, difficulty with family mealtime, and variable self-help skills. On average children's feeding challenges were present prior to their autism diagnosis. We found that children who had early feeding challenges had more severe feeding challenges in later childhood. Also, specific early feeding challenges predicted the types of feeding challenges children would have later in childhood. For example, children who had difficulty transitioning to table foods and who continued to restrict their diet over time were more likely to have sensory-based feeding challenges. Results from this study show how feeding challenges present in a wide variety of ways for autistic children. The findings also highlight the importance of screening for feeding challenges in early childhood and collaborating with families to understand individualized feeding challenge experiences. These results could be used to inform evaluation and intervention for feeding.
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The purpose of this study was to understand caregivers' experience of participating in a caregiver-mediated in-home feeding intervention, the Engaged Eaters Program, for their young autistic child. This qualitative study utilized a thematic approach to analyze post-intervention semi-structured interviews with thirteen mothers of autistic children between the ages of 2 to 7 years after they participated in the intervention. Interview questions focused on the child and family experience, what worked well, what could be improved, and how the intervention integrated into family routines. Four major themes were identified: In-Home Intervention, Parent Skill and Knowledge, Increased Social Participation, and Parent Responsibilities and Challenges. Sub-themes provided descriptions of learning practical tools to support their child, increasing self-efficacy, and impacts on family life. Mothers described an increase in tangible skills that were easily practiced in the home environment that improved their confidence and self-efficacy in feeding their children. They also described how participation did require more work and time commitment for them beyond their regular responsibilities. The caregiver experience is essential to understand for intervention effectiveness while simultaneously addressing child, caregiver, and family needs. By focusing on the mothers' experiences, individualized needs, and self-efficacy, we were able to better understand how integrating an intervention into the family context and daily routines may be beneficial for the whole family.
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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.
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COVID-19 , Personas con Discapacidad , Discapacidad Intelectual , Adulto , Niño , Humanos , Calidad de Vida , Vacunas contra la COVID-19 , Discapacidades del Desarrollo/psicología , Personas con Discapacidad/psicología , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/psicologíaRESUMEN
BACKGROUND: Differences in responding to sensory stimuli, including sensory hyperreactivity (HYPER), hyporeactivity (HYPO), and sensory seeking (SEEK) have been observed in autistic individuals across sensory modalities, but few studies have examined the structure of these "supra-modal" traits in the autistic population. METHODS: Leveraging a combined sample of 3868 autistic youth drawn from 12 distinct data sources (ages 3-18 years and representing the full range of cognitive ability), the current study used modern psychometric and meta-analytic techniques to interrogate the latent structure and correlates of caregiver-reported HYPER, HYPO, and SEEK within and across sensory modalities. Bifactor statistical indices were used to both evaluate the strength of a "general response pattern" factor for each supra-modal construct and determine the added value of "modality-specific response pattern" scores (e.g., Visual HYPER). Bayesian random-effects integrative data analysis models were used to examine the clinical and demographic correlates of all interpretable HYPER, HYPO, and SEEK (sub)constructs. RESULTS: All modality-specific HYPER subconstructs could be reliably and validly measured, whereas certain modality-specific HYPO and SEEK subconstructs were psychometrically inadequate when measured using existing items. Bifactor analyses supported the validity of a supra-modal HYPER construct (ωH = .800) but not a supra-modal HYPO construct (ωH = .653), and supra-modal SEEK models suggested a more limited version of the construct that excluded some sensory modalities (ωH = .800; 4/7 modalities). Modality-specific subscales demonstrated significant added value for all response patterns. Meta-analytic correlations varied by construct, although sensory features tended to correlate most with other domains of core autism features and co-occurring psychiatric symptoms (with general HYPER and speech HYPO demonstrating the largest numbers of practically significant correlations). LIMITATIONS: Conclusions may not be generalizable beyond the specific pool of items used in the current study, which was limited to caregiver report of observable behaviors and excluded multisensory items that reflect many "real-world" sensory experiences. CONCLUSION: Of the three sensory response patterns, only HYPER demonstrated sufficient evidence for valid interpretation at the supra-modal level, whereas supra-modal HYPO/SEEK constructs demonstrated substantial psychometric limitations. For clinicians and researchers seeking to characterize sensory reactivity in autism, modality-specific response pattern scores may represent viable alternatives that overcome many of these limitations.
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Trastorno Autístico , Adolescente , Humanos , Teorema de Bayes , Cognición , Análisis de Datos , FenotipoRESUMEN
Eating and mealtime challenges are common in autistic children, yet intervention access is limited. Telehealth may provide opportunities to address this gap and increase access for underserved families. This study examined the occupational therapy practitioner's perceptions of transitioning from a caregiver-mediated, in-home eating, and mealtime intervention for autistic children to telehealth owing to COVID-19 while considering the impact on accessibility, challenges, and benefits. Family characteristics were compared between groups. Thematic analysis of semi-structured interviews explored practitioners' experiences of telehealth. Statistical findings and themes were directly compared and contrasted. The following three themes emerged: Intervention Adaptations, Challenges for Interventionists, and Benefits of Telehealth. The differences in the families' geographic location were identified. Themes and family characteristic differences supported increased intervention accessibility for the telehealth group. This study provides preliminary evidence that telehealth can increase access to specialized services. There are benefits and challenges to implementing telehealth with families and autistic children.
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Trastorno Autístico , COVID-19 , Terapia Ocupacional , Telemedicina , Humanos , Niño , ComidasRESUMEN
IMPORTANCE: Limited research has elucidated factors predicting occupational therapy-specific service utilization by children with autism. Such research is needed to inform reasons for receipt of services. OBJECTIVE: To examine factors associated with occupational therapy service utilization by children with autism. We hypothesized that elevated sensory hyperresponsiveness; greater sensory interests, repetitions, and seeking; and lower adaptive behavior would predict more service utilization. DESIGN: Analysis of extant data from a prospective, longitudinal survey study about autism symptom severity, adaptive behavior, sensory features, and demographic and service utilization information of children with autism ages 3 to 13 yr. SETTING: Online parent survey regarding child behaviors during daily activities and contexts. PARTICIPANTS: 892 parents of children with autism from 50 U.S. states. OUTCOMES AND MEASURES: We used scores on the Vineland Adaptive Behavior Scale-Second Edition, the Social Responsiveness Scale, and the Sensory Experiences Questionnaire Version 3.0 and responses to a demographic questionnaire. We formulated hypotheses after data collection but before analysis. RESULTS: Predictors of higher occupational therapy service utilization were lower enhanced perception; lower adaptive behavior; elevated sensory interests, repetitions, and seeking behaviors; younger child age; and higher household income. CONCLUSION AND RELEVANCE: Results partially support our hypotheses. Sensory interests, repetitions, and seeking behavior predicted occupational therapy service utilization, whereas other sensory response patterns did not, suggesting a possible referral bias for certain sensory response patterns. Occupational therapy practitioners can educate parents and teachers about the scope of practice, which includes addressing sensory features beyond sensory interests, repetitions, and seeking behaviors. What This Article Adds: Children with autism who have impairments in adaptive functioning and high levels of sensory interests, repetitions, and seeking behaviors receive more occupational therapy services. Occupational therapy practitioners should be well trained to address such concerns and advocate for the profession's role in mitigating the impact of sensory features on daily life.
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Trastorno del Espectro Autista , Trastorno Autístico , Terapia Ocupacional , Niño , Humanos , Preescolar , Adolescente , Estudios Prospectivos , PadresRESUMEN
In the 2016 Zika virus (ZIKV) pandemic, a previously unrecognized risk of birth defects surfaced in babies whose mothers were infected with Asian-lineage ZIKV during pregnancy. Less is known about the impacts of gestational African-lineage ZIKV infections. Given high human immunodeficiency virus (HIV) burdens in regions where African-lineage ZIKV circulates, we evaluated whether pregnant rhesus macaques infected with simian immunodeficiency virus (SIV) have a higher risk of African-lineage ZIKV-associated birth defects. Remarkably, in both SIV+ and SIV- animals, ZIKV infection early in the first trimester caused a high incidence (78%) of spontaneous pregnancy loss within 20 days. These findings suggest a significant risk for early pregnancy loss associated with African-lineage ZIKV infection and provide the first consistent ZIKV-associated phenotype in macaques for testing medical countermeasures.
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Aborto Espontáneo , Complicaciones Infecciosas del Embarazo , Virus de la Inmunodeficiencia de los Simios , Infección por el Virus Zika , Virus Zika , Embarazo , Femenino , Animales , Humanos , Virus Zika/genética , Macaca mulatta , Primer Trimestre del EmbarazoRESUMEN
BACKGROUND: Understanding gait development is essential for identifying motor impairments in neurodevelopmental disorders. Defining typical gait development in a rhesus macaque model is critical prior to characterizing abnormal gait. The goal of this study was to 1) explore the feasibility of using the Noldus Catwalk to assess gait in infant rhesus macaques and 2) provide preliminary normative data of gait development during the first month of life. NEW METHOD: The Noldus Catwalk was used to assess gait speed, dynamic and static paw measurements, and interlimb coordination in twelve infant rhesus macaques at 14, 21, and 28 days of age. All macaque runs were labeled as a diagonal or non-diagonal walking pattern. RESULTS: Infant rhesus macaques primarily used a diagonal (mature) walking pattern as early as 14 days of life. Ten infant rhesus macaques (83.3%) were able to successfully walk across the Noldus Catwalk at 28 days of life. Limited differences in gait parameters were observed between timepoints because of the variability within the group at 14, 21, and 28 days. COMPARISON WITH EXISTING METHODS: No prior gait analysis system has been used to provide objective quantification of gait parameters for infant macaques. CONCLUSIONS: The Catwalk system can be utilized to quantify gait in infant rhesus macaques less than 28 days old. Future applications to infant rhesus macaques could provide a better understanding of gait development and early differences within various neurodevelopmental disorders.
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Marcha , Caminata , Animales , Macaca mulattaRESUMEN
Background Differences in responding to sensory stimuli, including sensory hyperreactivity (HYPER), hyporeactivity (HYPO), and sensory seeking (SEEK) have been observed in autistic individuals across sensory modalities, but few studies have examined the structure of these "supra-modal" traits in the autistic population. Methods Leveraging a combined sample of 3,868 autistic youth drawn from 12 distinct data sources (ages 3-18 years and representing the full range of cognitive ability), the current study used modern psychometric and meta-analytic techniques to interrogate the latent structure and correlates of caregiver-reported HYPER, HYPO, and SEEK within and across sensory modalities. Bifactor statistical indices were used to both evaluate the strength of a "general response pattern" factor for each supra-modal construct and determine the added value of "modality-specific response pattern" scores (e.g., Visual HYPER). Bayesian random-effects integrative data analysis models were used to examine the clinical and demographic correlates of all interpretable HYPER, HYPO and SEEK (sub)constructs. Results All modality-specific HYPER subconstructs could be reliably and validly measured, whereas certain modality-specific HYPO and SEEK subconstructs were psychometrically inadequate when measured using existing items. Bifactor analyses unambiguously supported the validity of a supra-modal HYPER construct (ω H = .800), whereas a coherent supra-modal HYPO construct was not supported (ω H = .611), and supra-modal SEEK models suggested a more limited version of the construct that excluded some sensory modalities (ω H = .799; 4/7 modalities). Within each sensory construct, modality-specific subscales demonstrated substantial added value beyond the supra-modal score. Meta-analytic correlations varied by construct, although sensory features tended to correlate most strongly with other domains of core autism features and co-occurring psychiatric symptoms. Certain subconstructs within the HYPO and SEEK domains were also associated with lower adaptive behavior scores. Limitations: Conclusions may not be generalizable beyond the specific pool of items used in the current study, which was limited to parent-report of observable behaviors and excluded multisensory items that reflect many "real-world" sensory experiences. Conclusion Psychometric issues may limit the degree to which some measures of supra-modal HYPO/SEEK can be interpreted. Depending on the research question at hand, modality-specific response pattern scores may represent a valid alternative method of characterizing sensory reactivity in autism.
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BACKGROUND: Elevated or reduced responses to sensory stimuli, known as sensory features, are common in autistic individuals and often impact quality of life. Little is known about the neurobiological basis of sensory features in autistic children. However, the brainstem may offer critical insights as it has been associated with both basic sensory processing and core features of autism. METHODS: Diffusion-weighted imaging (DWI) and parent-report of sensory features were acquired from 133 children (61 autistic children with and 72 non-autistic children, 6-11 years-old). Leveraging novel DWI processing techniques, we investigated the relationship between sensory features and white matter microstructure properties (free-water-elimination-corrected fractional anisotropy [FA] and mean diffusivity [MD]) in precisely delineated brainstem white matter tracts. Follow-up analyses assessed relationships between microstructure and sensory response patterns/modalities and analyzed whole brain white matter using voxel-based analysis. RESULTS: Results revealed distinct relationships between brainstem microstructure and sensory features in autistic children compared to non-autistic children. In autistic children, more prominent sensory features were generally associated with lower MD. Further, in autistic children, sensory hyporesponsiveness and tactile responsivity were strongly associated with white matter microstructure in nearly all brainstem tracts. Follow-up voxel-based analyses confirmed that these relationships were more prominent in the brainstem/cerebellum, with additional sensory-brain findings in the autistic group in the white matter of the primary motor and somatosensory cortices, the occipital lobe, the inferior parietal lobe, and the thalamic projections. LIMITATIONS: All participants communicated via spoken language and acclimated to the sensory environment of an MRI session, which should be considered when assessing the generalizability of this work to the whole of the autism spectrum. CONCLUSIONS: These findings suggest unique brainstem white matter contributions to sensory features in autistic children compared to non-autistic children. The brainstem correlates of sensory features underscore the potential reflex-like nature of behavioral responses to sensory stimuli in autism and have implications for how we conceptualize and address sensory features in autistic populations.
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Trastorno Autístico , Sustancia Blanca , Humanos , Niño , Encéfalo , Calidad de Vida , Tronco EncefálicoRESUMEN
This project aimed to develop a comprehensive set of evaluation tools to assess the accessibility and inclusion of families with children on the autism spectrum in cultural institutions. A stakeholder team conducted interviews, reviewed museum artifacts, and observed museum programming. An evaluation toolkit was constructed by incorporating best practices from current literature and collected data. Tools were piloted and revised after being implemented in the museum context. The Toolkit to Increase Accessibility and Inclusion for Children on the Autism Spectrum and with Sensory Processing Differences in Cultural Institutions was developed with five unique tools, the Dimensions of Accessibility framework, and further resources to provide a self-assessment of cultural institutions. The toolkit can be used broadly across many types of institutions and self-assessment can lead to proactive development of public spaces, institutions, and programming that is accessible and inclusive of diverse groups of people, beyond families with children on the autism spectrum.
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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.
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Discapacidad Intelectual , Adulto , Comunicación , Humanos , Investigadores , UniversidadesRESUMEN
Background: Caregivers of children with autism spectrum disorders (ASD) and developmental disabilities (DD) implement myriad strategies to support their children during daily activities and routines, which are laden with sensory stimuli. Children's sensory features are often characterized by three patterns of response (i.e., hyperresponsiveness, hyporesponsiveness, sensory seeking), and little is known about how caregivers' strategies differ among these patterns. Therefore, we used a mixed methods analysis to examine the complex interplay between children's sensory response patterns, child characteristics (diagnosis, chronological age, mental age), and caregiver strategies. Specifically, we examined how children's sensory response pattern scores were associated with caregiver strategies within sensory response pattern and at the item level. Lastly, we described the differential strategies implemented by caregivers of children with ASD and DD by sensory response pattern. Materials and Methods: Participants included children with ASD (n = 77) and DD (n = 40) aged 2-10 years. Caregivers completed the Sensory Experiences Questionnaire-2.1. A convergent parallel mixed methods approach was used to analyze data. Results: Children's sensory response pattern scores were significantly, positively associated with caregiver strategies within each sensory pattern (hyperresponsiveness, hyporesponsiveness, seeking); however, child mental age, and chronological age were not significantly related to the rate of caregiver strategies across patterns. While caregivers of children with ASD reported using more strategies, child diagnosis did not moderate the association between child sensory response pattern scores and the rate of caregiver strategies used. Item analysis demonstrated specific child behaviors in response to sensory stimuli that elicited high rates of strategies among caregivers. Qualitative analysis revealed distinct themes characterized caregiver strategies within each sensory pattern for children with ASD and DD. Conclusion: Our findings demonstrated specificity of caregiver strategies to children's sensory response patterns in the context of families' everyday lives, which were not contingent on child diagnosis, mental age, or chronological age, thereby highlighting universal qualities of caregiving for young children who experience varying levels of sensory challenges. Targeted intervention approaches may differentially incorporate types of strategies based on sensory response patterns to more optimally facilitate children's activity participation.
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Countermeasures against Zika virus (ZIKV), including vaccines, are frequently tested in nonhuman primates (NHP). Macaque models are important for understanding how ZIKV infections impact human pregnancy due to similarities in placental development. The lack of consistent adverse pregnancy outcomes in ZIKV-affected pregnancies poses a challenge in macaque studies where group sizes are often small (4-8 animals). Studies in small animal models suggest that African-lineage Zika viruses can cause more frequent and severe fetal outcomes. No adverse outcomes were observed in macaques exposed to 1x104 PFU (low dose) of African-lineage ZIKV at gestational day (GD) 45. Here, we exposed eight pregnant rhesus macaques to 1x108 PFU (high dose) of African-lineage ZIKV at GD 45 to test the hypothesis that adverse pregnancy outcomes are dose-dependent. Three of eight pregnancies ended prematurely with fetal death. ZIKV was detected in both fetal and placental tissues from all cases of early fetal loss. Further refinements of this exposure system (e.g., varying the dose and timing of infection) could lead to an even more consistent, unambiguous fetal loss phenotype for assessing ZIKV countermeasures in pregnancy. These data demonstrate that high-dose exposure to African-lineage ZIKV causes pregnancy loss in macaques and also suggest that ZIKV-induced first trimester pregnancy loss could be strain-specific.
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Complicaciones Infecciosas del Embarazo , Infección por el Virus Zika , Virus Zika , Animales , Modelos Animales de Enfermedad , Femenino , Humanos , Macaca mulatta , Placenta , Embarazo , Resultado del Embarazo , Virus Zika/genéticaRESUMEN
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.