Sign Up, Join In, and Participate in Research!

In laboratories, clinics, and rehabilitation hospitals across the country, scientists and practitioners are conducting research and development that will have an impact on you, your family, or someone you know. Somewhere a rehabilitation researcher is developing an intervention which may help a person with a disability walk farther without pain or grasp an object without tremors. In an engineering lab, a team is testing a prototype prosthetic that can sense potential pressure injuries. Elsewhere, a psychologist is analyzing survey data to understand how people with lived experience in psychiatric disability find and keep competitive, meaningful work in their communities. Those projects have something in common: people with disabilities participating in research. 

Why should you participate in research?

As a person with a disability, there are many reasons you might want to participate in a research study. You might benefit from an intervention or technology that improves your ability to live, work, and play in your community. You might have a professional or personal interest in the topic of the study. You might be interested in doing your part to ensure that researchers have data about the diversity of experience, including differences in lifestyle, biology, and environment, so that new interventions and technologies can benefit a wide array of potential users.

How can you participate in research?

Levels of participation can range from taking 5 minutes to complete an anonymous survey all the way to joining a research team:

  • Surveys and questionnaires are tools researchers use to collect data. Many surveys are anonymous. Surveys may ask about opinions or experiences, and will often collect demographic information such as age, education levels, race or ethnicity, types of disability, and so on. If you fill out a survey, you may find different types of questions like yes/no questions, rating items on a scale (i.e. 1 to 5, never to always), or longer written responses. Some researchers use questionnaires to measure a person’s quality of life, activity, or ability levels as part of a larger study.
  • Interviews and focus groups help researchers collect more information from participants about their experiences and opinions on different topics. Interviews are often one-on-one between an individual and a researcher and may be conducted face to face or remotely. Focus groups include several people brought together, either physically or virtually, to share their views and experiences on a topic. A researcher may lead discussions and ask question of the group. Here’s an example of a focus group study with law enforcement personnel about their experience in serving people with disabilities.
  • Clinical trials involve testing a product or intervention to see if it is safe and effective. There are different types of clinical trials, including randomized controlled trials in which participants are divided into groups where some receive a treatment and others do not, so researchers can compare the results.
  • Technology such as apps and assistive devices may go through beta testing or product testing with potential users. Participants in beta or product testing may receive early access to a product to use it “in real life.” Testers may find issues that didn’t come up in earlier laboratory testing. Beta testers with disabilities can provide feedback on the usability and accessibility of a product, identifying issues that a user without a disability might not encounter. They may also provide feedback on how a product can be improved in general before it goes to the marketplace.
  • Some research centers have consumer advisory boards to support their research efforts. These boards meet on a regular basis to review the center’s research program, advise on issues and concerns from the community, and act as a bridge between researchers and the people who will feel the impact of research and development activities. Consumer boards may include people with diverse abilities and backgrounds. The NIDILRR-funded Spaulding New England Regional Spinal Cord Injury Center has a consumer advisory board, a diverse group including people living with SCI, family members, advocates, and clinicians, which helps guide the center’s work.
  • Participatory action research is the “all in” of getting involved in research and development. Participatory action research teams include individuals with lived experience in disability, independent living, and rehabilitation – they may help design the project, they may be part of the data gathering or development teams, they may be the ones conducting interviews or focus groups. Having people with disabilities as part of the research team can be challenging but also rewarding for the whole project team, as participants gain research skills and the project benefits from direct input of the community it will impact. Cognitopia, developers of NIDILRR-funded technology supporting people with cognitive disabilities, uses a participatory research design in its development effort and shares some of the challenges and rewards.

What can you get out participating in research?

Participating in research and development can have benefits and drawbacks for those who join in. Participants may receive compensation for their time, sometimes in the form of gift cards or cash payments. Beta testers get early access to some of the latest technology and may be able to keep the products they test. Participants in clinical trials receive early access to new interventions which may improve their quality of life. Among the drawbacks: Participating in research takes time, whether you’re filling out a five-minute survey, visiting a clinic, or meeting with a focus group. You may need to travel to participate in the study. Finally, an intervention or a product may not work for you.

Are you ready to join in?

There are many places you can find studies, trials, and survey opportunities you can join. Read through the study description, including eligibility criteria and any risks or expectations, before you sign up.

  • Our News and Notes from the NIDILRR Community and Beyond features opportunities to participate in NIDILRR-funded studies. Each announcement includes what the study is about, eligibility and compensation details, and links to learn more. Subscribe to our weekly newsletter.
  • Clinicaltrials.gov is a central resource for trials across the US and abroad. The database is searchable by condition, country, recruiting status, and other criteria. SCItrials.org lists spinal cord injury clinical trials the US and Canada.
  • Rehabilitation centers and university hospitals may have a section of their website dedicated to opportunities to participate. For example, the Kessler Foundation (home to several NIDILRR-funded studies) has a page for 10 different study areas.
  • Learn about the All of Us Research Program at the National Institutes of Health, “a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.”
  • Disability-specific and professional organizations often publish calls to participate in their newsletters and social media feeds.

If the opportunity to participate in a survey, study, or trial comes your way, we hope you’ll seriously consider joining in. Research and development are happening all around, and your participation today may help bring new products, therapies, and interventions to your community in the future.

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¿Qué es la osteoporosis?

Según el Instituto Nacional de Artritis y Enfermedades Musculoesqueléticas y de la Piel (NIAMS, por sus siglas en inglés) (en inglés) en los Institutos Nacionales de la Salud (NIH, por sus siglas en inglés), la osteoporosis (en inglés) es una “enfermedad caracterizada por una baja masa ósea y un deterioro estructural del tejido óseo.” La baja masa ósea y el deterioro de hueso conduce a la fragilidad de los huesos y un aumento en las fracturas de las caderas, la columna vertebral, y las muñecas. Según la Clínica Mayo, la osteoporosis “afecta a hombres y mujeres de todas las razas,” pero “las mujeres blancas y asiáticas, especialmente las mujeres mayores que ya pasaron la menopausia, tienen el mayor riesgo” de desarrollar osteoporosis. Generalmente, no hay síntomas en las etapas tempranas de osteoporosis; sin embargo, una vez que sus huesos se hayan debilitado por la osteoporosis, es posible que tenga signos y síntomas que incluyen el dolor de espalda, pérdida de altura con el tiempo, huesos que se rompen mucho más fácilmente de lo esperado, y/o una postura encorvada. Tenga en cuenta: Hable con su médico si experimenta estos síntomas y/o si pasó por la menopausia temprana, tomó corticosteroides durante varios meses a la vez, o si alguno de sus padres tuvo fracturas de cadera.

Los factores de riesgo para la osteoporosis incluyen los riesgos inmutables, como su edad y antecedentes familiares; historial médico personal, como las condiciones médicas como trastornos alimenticios y lupus, y ciertos medicamentos, como el uso a largo plazo de medicamentos con corticosteroides; y riesgos cambiantes, como un estilo de vida sedentario, el consumo excesivo de alcohol, y el consumo de tabaco. Algunas personas con ciertas discapacidades también pueden tener un mayor riesgo de desarrollar la osteoporosis y posiblemente fracturarse los huesos, según los investigadores del Sistema Modelo Regional Noroeste de Lesiones de la Médula Espinal (en inglés). Una buena nutrición y ejercicio regular son esenciales para mantener los huesos sanos durante toda la vida. Tenga en cuenta: Hable con su médico sobre la nutrición y el ejercicio adecuados para usted.

A lo largo de su historia, NIDILRR (en inglés) ha financiado investigaciones sobre la osteoporosis (en inglés). Los especialistas en información de NARIC buscaron en REHABDATA y encontraron más de 1,240 artículos de la comunidad de NIDILRR y de otros lugares (en inglés) sobre la osteoporosis y los temas relacionados. Si desea obtener más información sobre la osteoporosis, comuníquese con los especialistas en información de NARIC para obtener ayuda.

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What is Osteoporosis?

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health (NIH), osteoporosis is a “disease characterized by low bone mass and structural deterioration of bone tissue.” The low bone mass and deterioration of bone lead to bone fragility and an increase in fractures of the hips, spine, and wrists. According to the Mayo Clinic, osteoporosis “affects men and women of all races,” but “white and Asian women – especially older women who are past menopause – are at highest risk” for developing osteoporosis. Typically, there are no symptoms in the early stages of osteoporosis; however, once your bones have been weakened by osteoporosis you might have signs and symptoms that include back pain, loss of height over time, bones that break much more easily than expected, and/or a stooped posture. Please Note: Talk to your doctor if you experience these symptoms and/or if you went through early menopause, took corticosteroids for several months at a time, or if either of your parents had hip fractures.

Risk factors for osteoporosis include unchangeable risks, such as your age and family history; personal medical history, such as medical conditions like eating disorders and lupus and certain medications, such as long-term use of corticosteroid medications; and changeable risks, such as a sedentary lifestyle, excessive alcohol consumption, and tobacco use. Some people with certain disabilities may be at higher risk for osteoporosis as well. For example, people with spinal cord injury have a high risk of developing osteoporosis and possibly breaking bones according to the researchers at the Northwest Regional Spinal Cord Injury Model System. Good nutrition and regular exercise are essential for keeping your bones healthy throughout your life. Please Note: Speak with your doctor about the right nutrition and exercise for you.

Throughout its history, NIDILRR has funded research on osteoporosis. NARIC’s information specialists searched REHABDATA and found over 1240 articles from the NIDILRR community and elsewhere on osteoporosis and related topics. If you would like more information on osteoporosis, please contact NARIC’s information specialists for assistance.

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Accessibility in Spain: The Accessibility Observatory

The Accessibility Observatory (in Spanish) in Spain, a project of the Accessibility Unit of COCEMFE (in Spanish), highlights the importance of accessibility and the use of support products that are essential to improve the quality of life of people with disabilities. The content of the Observatory is available to everyone, with or without disabilities, since accessibility benefits all people within society. The Observatory provides information and advice on assistive technology (AT) and support products, including a full database of AT products and support products (in Spanish), and a regularly-updated catalog of good practices in accessibility. The Observatory also informs the public about news regarding AT products, shares research reports and other publications related to accessibility, and issues reports on accessibility in different areas such as physical, urban, transportation, and communication accessibility. Finally, the Observatory provides links to information related to accessibility (in Spanish), such as universal design, independent living, accessible tourism, disability, accessible leisure, aging, and more. Users of the Observatory’s website may sign up to access features available only to those who register. These features include technical info sheets, info sheets for communities, information on legislation related to accessibility, and more.

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La accesibilidad en España: El Observatorio de la Accesibilidad

El Observatorio de la Accesibilidad en España, un proyecto de la Unidad de Accesibilidad de COCEMFE, destaca la importancia de la accesibilidad y el uso de productos de apoyo que son esenciales para mejorar la calidad de vida de las personas con discapacidades. El contenido del Observatorio está disponible para todos, con y sin discapacidades, ya que la accesibilidad beneficia a todas las personas dentro de la sociedad. El Observatorio proporciona información y consejos sobre los productos de tecnología de asistencia (TA) y de apoyo, incluyendo una plena base de datos de productos de TA y apoyo, y un catálogo actualizado regularmente de buenas prácticas en la accesibilidad. También, el Observatorio informa al público sobre las noticias relacionadas con los productos de TA, comparte informes de investigación y otras publicaciones relacionadas con la accesibilidad, y emite informes sobre la accesibilidad en diferentes áreas como la accesibilidad física, urbana, de transportación, y de comunicación. Finalmente, el Observatorio proporciona enlaces a información relacionada con la accesibilidad, como el diseño universal, la vida independiente, el turismo accesible, las discapacidades, el ocio accesible, el envejecimiento, y más. Los usuarios del sitio web del Observatorio pueden registrarse para obtener acceso a las funciones disponibles solo para aquellos que se registren. Estas funciones incluyen hojas informativas técnicas, hojas informativas para las comunidades, información sobre legislación relacionada con la accesibilidad, y más.

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Looking Back and Looking Ahead with Director Mark Odum

As we turn over our calendars to 2020, it’s a good time to reflect on our activities of the past year, taking note of our achievements and looking ahead to what’s to come.

During 2019:

  • We celebrated the 10th anniversary of our Spotlight blog, which saw its best year ever in total visitors (more than 28,000 visitors and almost 46,000 page views). Our Spanish pages remained among the most popular, so in addition to translating our English-language articles, we developed new features to highlight organizations in Spanish-speaking regions that support the independence and participation of people with disabilities.
  • We indexed our 80,000th journal article and grew our collection by more than 4,000 items, including over 700 publications from NIDILRR-funded studies.  These journal articles, books, factsheets, and other publications span the diverse field of research in disability and rehabilitation and document the impact of disability across the life span. Explore the most recent acquisitions and sign up for literature awareness alerts to see what we’re adding this month.
  • We supported the knowledge translation efforts of the NIDILRR grantee community through our Research In Focus series, highlighting interesting findings from their studies and presenting them in reader-friendly summaries. We also participated in advisory groups and boards, connected researchers working in similar or supporting areas, and partnered with our colleagues at AbleData to spread the reach of NIDILRR-funded research to the community.

We have much to look forward to in NARIC’s 42nd year, including:

  • We’ll publish the 400th issue of News and Notes, our weekly newsletter highlighting the resources, events, and achievements of the NIDILRR grantee community. This newsletter goes out to more than 4,500 subscribers in the US and abroad!
  • We’re getting to know the 64 newest projects to join the NIDILRR community. These projects are exploring mHealth, smart technologies, entrepreneurship, peer providers, and so much more!
  • 2020 may be an exciting year for technology. We expect to read more about topics like robotics, wearables, and the Internet of Things in the coming year. This week’s Consumer Electronics Show has more sessions and exhibitors showcasing accessibility and technology for independence.
  • July marks the 30th anniversary of the signing of the Americans with Disabilities Act (ADA). We will join with the NIDILRR community in recognizing the impact of this landmark civil rights legislation, how far we have come, and what barriers still need to be removed for full participation of people with disabilities.
  • The 2020 Paralympic Games kick off this Summer in Tokyo, with more medal events broadcast live than any previous games. We may have to set our alarms to catch the action, but we promise to tweet about it!

It’s gratifying to reflect on the NARIC team, all of whom have been together for more than a decade, and acknowledge what we’ve accomplished together. I’m equally gratified to ponder the work ahead of us and to know that it will have an impact on our community. Wishing you and your teams an exciting 2020 and beyond!

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Mirando hacia atrás y hacia adelante con el director Mark Odum

A medida que cambiamos nuestros calendarios a 2020, es un buen tiempo para reflexionar sobre nuestras actividades del año pasado, tomando nota de nuestros logros y mirando hacia al futuro.

Durante 2019:

  • Celebramos el décimo aniversario de nuestro blog Spot light, que vio su mejor año en total de visitantes (más de 28,000 visitantes y casi 46,000 visitas a la página). Nuestras páginas en español se mantuvieron entre las más populares, por lo que, además de traducir nuestros artículos en inglés, desarrollamos nuevas funciones para destacar organizaciones en regiones donde hablan español que apoyan la independencia y la participación de personas con discapacidades.
  • Catalogamos nuestro artículo de revista número 80,000 y aumentamos nuestra colección en más de 4,000 artículos, incluyendo más de 700 publicaciones de los estudios financiados por NIDILRR (en inglés). Estos artículos de revista, libros, hojas informativas, y otras publicaciones abarcan los diversos campos de investigación y rehabilitación y documentan el impacto de la discapacidad a lo largo de la vida. Explore las adquisiciones más recientes e inscríbase a las alertas de concientización sobre la literatura para ver lo que estamos agregando este mes.
  • Apoyamos los esfuerzos de traducción de conocimientos de la comunidad de concesionarios de NIDILRR a través de nuestra serie Enfoque De Investigación, destacando los hallazgos interesantes de sus estudios y presentándolos en resúmenes fáciles de leer. También participamos en grupos y juntas de asesores, conectamos a investigadores trabajando en áreas similares o de apoyo, y nos asociamos con nuestros colegas de AbleData para difundir el alcance de la investigación financiada por NIDILRR a la comunidad.

Tenemos mucho que esperar en el año 42 de NARIC, incluyendo:

  • Publicaremos el número 400 de News and Notes, nuestro boletín semanal que destaca los recursos, eventos, y logros de la comunidad de concesionarios de NIDILRR. ¡Este boletín está dirigido a más de 4,500 suscriptores en los EEUU y en el extranjero!
  • Estamos conociendo los 64 proyectos más nuevos uniendose a la comunidad de NIDILRR. ¡Estos proyectos están explorando “mHealth”, tecnologías inteligentes, emprendimiento, proveedores compañeros, y mucho más!
  • El año 2020 puede ser un año emocionante para la tecnología. Esperamos leer más sobre los temas como la robótica, usables, e Internet de las Cosas en este año. La Presentación de Objetos Electrónicos para el Consumidor de esta semana tiene más sesiones y expositores que muestran la accesibilidad y tecnología para la independencia.
  • El mes de julio marca el 30 aniversario de la firma de la Ley de Estadounidenses con Discapacidades (ADA, por sus siglas en inglés) (en inglés). Nos uniremos a la comunidad de NIDILRR para reconocer el impacto de esta legislación histórica de derechos civiles, qué tan lejos hemos llegado y qué barreras aún deben eliminarse para la plena participación de personas con discapacidades.
  • Los Juegos Paralímpicos de 2020 comienzan este verano en Tokio, con más eventos de medallas transmitidos en vivo que cualquier juego anterior. Es posible que tengamos que configurar nuestras alarmas para captar la acción, ¡pero prometemos twittear al respecto!

Es gratificante reflexionar sobre el equipo de NARIC, todos los cuales han estado juntos durante más de una década, y reconocer lo que hemos logrado juntos. Estoy igualmente satisfecho de reflexionar sobre el trabajo que tenemos por delante y saber que tendrá un impacto en nuestra comunidad. ¡Les deseo a ustedes y a sus equipos un emocionante 2020 y más allá!

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Preguntas y Respuestas: Noticias Mensuales para la Comunidad de la Discapacidad para Diciembre de 2019

Preguntas y Respuestas es un recurso mensual para la Comunidad de la Discapacidad de habla hispana que llena una necesidad de información. La pregunta de este mes es: Nuestro vecino tiene un trastorno de salud mental y ha tenido crisis en el pasado. ¿Hay información y recursos disponibles que pueden ayudarnos a ayudarlo antes, durante, y después de una crisis? Este número de Preguntas y Respuestas incluye artículos que se centran en construir la autodeterminación y mejorar la vida comunitaria y participación en personas jóvenes con enfermedad mental grave (EMG); apoyos por compañeros en la salud mental; cómo la tecnología puede abordar la salud mental global; la competencia cultural y la salud mental; información para las familias y amigos de personas jóvenes experimentando psicosis; información para los adolescentes con salud mental; instrumentos de bienestar y la recuperación autodirigida; y una presentación sobre cómo discutir la salud mental en la comunidad latina/hispana. Obtenga más información sobre Preguntas y Respuestas.

Tenga en cuenta: Si usted o un ser querido está experimentando una crisis, llame al 911. Si usted o un ser querido está pensando en suicidarse, llame a la Línea Nacional de Prevención del Suicidio al 800/273-8255.

Proyectos Financiados por NIDILRR:

De la Colección de NARIC:

  • Los análisis recientes han sugerido que un mayor compromiso con los servicios de especialistas en compañeros está asociado con menos síntomas psiquiátricos. El artículo, Predicción del compromiso con los servicios especializados en compañeros de salud mental (en inglés), discute un estudio que evaluó los predictores del compromiso de personas con EMG con los servicios de especialistas en compañeros. Los investigadores encontraron que una mayor esperanza, síntomas psiquiátricos, y la utilización de servicios predijeron una mayor participación con los especialistas en compañeros. Los resultados de este estudio sugieren subpoblaciones de personas con EMG con las cuales los especialistas en compañeros tendrían más probabilidades de interactuar con éxito.

Enfoque De Investigación:

Tecnología:

  • El bajo número de profesionales de salud mental, junto con el estigma asociado con la enfermedad mental y la ausencia de intervenciones integradas, pueden afectar la recuperación. El artículo, Tecnología para abordar la salud mental global: Un informe del Banco Mundial, discute un informe interesante sobre el aprovechamiento de la tecnología para abordar la crisis de salud mental global y explora las tecnologías para ayudar a tratar una enfermedad mental o prevenir el suicidio. El artículo incluye ejemplos de tecnología que pueden mejorar el acceso a los tratamientos de alta calidad, tales como la tele-salud y plataformas digitales de aprendizaje. Los autores también discuten cómo la inclusión de la tecnología en el tratamiento de enfermedades mentales puede ser clave para enfrentar el desafío de los problemas globales de salud mental.

Competencia Cultural:

Recursos:

Instrumentos:

Cursos y Programas:

  • El programa, Compartiendo Esperanza: Hablando con Latinos Sobre la Salud Mental (en inglés) de NAMI (en inglés), es una presentación bilingüe de 90 minutos que ayuda a aumentar la concientización de la salud mental en comunidades latinas/hispanas al abordar el número de temas importantes, incluyendo los signos y síntomas de varios trastornos, dónde encontrar apoyos y servicios, y cómo hablar sobre la salud mental y disminuir el estigma.

Más Investigaciones:

REHABDATA:

PubMed:

Investigaciones Internacionales:

Más información sobre Preguntas y Respuestas

Cada mes, revisamos las búsquedas que aparecen en nuestro blog y a través de las solicitudes de información hechas por nuestros clientes que hablan español y elegimos un tema que llena la necesidad mayor. Cada recurso mencionado anteriormente está asociado con la necesidad de información de este mes. Buscamos varios recursos y fuentes de noticias en español durante todo el mes para traerle estos artículos. Con la excepción de los Proyectos de NIDILRR, De la Colección de NARIC, y Más Investigaciones, todos los enlaces a los artículos y recursos se encuentran en español.

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Answered Questions: Monthly News for the Disability Community for December 2019

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: Our neighbor has a mental health disorder and has had crisis in the past. Is there information and resources available that can help us help him before, during, and after a crisis? This edition of Answered Questions includes items that focus on building self-determination and enhancing community living and participation in young people with serious mental illness (SMI); peer supports in mental health; how technology can address global mental health; cultural competence and mental health; information for family and friends of young people experiencing psychosis; information for teens with mental illness; wellness and self-directed recovery tools; and a presentation on discussing mental health with the Latinx/Hispanic community. More about Answered Questions.

Please note: If you or a loved one is currently experiencing a crisis, please call 911. If you or a loved one are thinking about suicide, please call the National Suicide Prevention Lifeline at 800/273-8255.

NIDILRR-Funded Projects:

From the NARIC Collection:

  • Recent analyses have suggested that a greater engagement with peer specialist services is associated with fewer psychiatric symptoms. The article, Predicting engagement with mental health peer specialist services (in English), discusses a study that assessed the predictors of engagement of people with SMI with peer specialist services. Researchers found that greater hope, psychiatric symptoms, and service utilization predicted greater peer specialist engagement. The results of this study suggest subpopulations of people with SMI with whom peer specialists would be most likely to engage successfully.

Research In Focus:

Technology:

  • The low numbers of mental health professionals, along with the stigma associated with mental illness and the absence of integrated interventions can affect recuperation. The article, Technology to address global mental health: A World Bank report, discusses an interesting report on harnessing technology to address the global mental health crisis and that explores technologies to help treat a mental illness or to prevent suicide. The article includes examples of technology that can improve access to high quality treatments, such as telehealth and digital learning platforms. The authors also discuss how including technology in the treatment of mental illnesses could be key to face the challenge of global mental health issues.

Cultural Competence:

Resources:

Tools:

Courses and Programs:

  • The program, Compartiendo Esperanza: Speaking with Latinos About Mental Health (in English) from NAMI, is a 90-minute bilingual presentation that helps to increase mental health awareness in Latinx/Hispanic communities by addressing a number of important topics, including the signs and symptoms of several disorders, where to find supports and services, and how to talk about mental health and decrease stigma.

Further Research:

REHABDATA:

PubMed:

International:

About Answered Questions

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.

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Let’s Take a Peek at NIDILRR’s Outcome Domains: Community Living and Participation

Welcome back to our series that highlights NIDILRR’s Outcome Domains. This month, we will be looking at NIDILRR’s Community Living and Participation Outcome Domain. Through this research program, NIDILRR seeks to encourage independent living and community integration, to achieve more successful outcomes for people with disabilities, and to foster the development of innovative methods to achieve these outcomes and to measure achievement.

For Fiscal Year 2019, 36 active projects looked at community living and participation for people with disabilities from different angles. These projects include:

  1. The Rehabilitation Research and Training Center (RRTC) on Family Support bridges aging and disability research, practice, and policies to generate new knowledge in family supports that contributes to improvements in community living, participation, health and function, and other outcomes for people with disabilities from different racial and ethnic backgrounds who are supported by family members. The RRTC conducts six projects which include Understanding Experiences, Trends, and Needs in Self-Directed Programs, which looks at national trends in self-directed support, and the experience and satisfaction of caregivers in self-directed care, and Parents Taking Action: A Parent Training Program for Latino Families of Children with Autism Spectrum Disorders (ASD), which tests the efficacy of an intervention that engages parents of children with ASD in providing education and training to other parents.
  2. The Temple University RRTC on Community Living and Participation of People with Serious Mental Illness (TU Collaborative) advances the development of interventions that help to maximize community living and participation of people with severe mental illness (SMI). This RRTC also serves as a national resource center for people with SMI, their families, service and support providers, researchers, policymakers, and other stakeholders. As a resource center, the TU Collaborative also produce evidence-based resources on a variety of topics related to SMI, community living, and participation, which include resources on the basics of community inclusion, education, employment, physical activity, and welcoming communities. As part of the Center’s goal to encourage people with SMI to participate in the community, researchers create a yearly calendar that is based on research done by the Center and which provides monthly goals that promote community living and participation.

The projects within the Community Living and Participation Outcome Domain produce peer-reviewed articles, factsheets, videos, guides, and more. Here is a sample of what two of these projects have produced:

  1. The article, Differences in social connectedness and perceived isolation among rural and urban adults with disabilities, discusses a study that explored how reported satisfaction with social participation and perceived isolation relate to the health of people with disabilities in urban and rural areas. This study found that there were significant associations between reported health and measures of satisfaction with social participation and perceived isolation; an increased number of disability issues, not being employed, and living with at least one person were associated with reduced with social participation; and the number of disability issues and not being employed were associated with an increase in perceived isolation. The authors write that these data suggest that people with disabilities living in rural areas may be have an increased risk for low levels of satisfaction with social participation and that people with disabilities living in urban areas may have an increased risk for feeling isolated. This study and article were published by the Place-based Solutions for Rural Community Participation, Health, and Employment and the Collaborative on Health Reform and Independent Living.
  2. The article, Attachment, hope, and participation: Testing an expanded model of Snyder’s hope theory for prediction of participation for individuals with spinal cord injury, discusses a study that evaluated an expanded model of Snyder’s hope theory, which is comprised of constructs from hope theory and attachment theory, for predicting participation outcomes of people with spinal cord injury (SCI). The study found that secure attachment, avoidant attachment, anxious attachment, and the hope constructs were significantly related to the participation of people with SCI. The results of this study provide support for the use of hope-based interventions by rehabilitation practitioners for improving the global participation outcomes for people with SCI who experience attachment-related difficulties. This study and article were published by the Rehabilitation Research Training Center on Employment of Individuals with Physical Disabilities.

If you would like to learn more about NIDILRR’s Outcome Domains, other projects or products within the Community Living and Participation Outcome Domain, or would like more information about community living and participation for people with disabilities, please contact NARIC’s information specialists.

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