The Utah Parent Center receives many requests to distribute or advertise research and research surveys to our constituency through our email list. We have set up this web page to provide links to those opportunities to those who may be interested in participating. Some surveys or opportunities that are provided by our partners or funders may also be sent directly to the email list.
- Impact of Visual Impairment, Sensory Processing, Coping, Participation in and Quality of Life in Children
Rockhurst University Occupational Therapy Department
The study involves parents of children with visual impairment completing an online survey about their child’s sensory processing, coping, participation in and quality of life. In order to participate, parents or caregivers should have a child between the ages of 3 and 10 years old with a diagnosed visual impairment. The visual impairment can be ocular or neurological in nature. Children can also have multiple disabilities, in addition to the presence of a visual impairment. The online survey will take about 25 minutes to complete. Participation is optional and participants have the right to stop taking the survey or withdrawal from the survey at any time, with no penalty. Participants will have the opportunity to enter to win a $50 gift card at the end of the survey. After completion, these results will allow us to determine relationships among visual impairment, sensory processing ability, coping skills, participation in and quality of life in children. As a result, professionals, therapists, and teachers may receive information which may help create more effective interventions and therapies.
- Support Parent-Adolescent Relationships and Communication (ND-SPARC) Project
The Notre Dame SPARC Project
Over the course of a four-week program, families in the SPARC project get information about conflict and how it can impact marital, parent-child and sibling relationships, as well as information on how to resolve conflict and have more productive conversations as a couple and with their typically developing teens.
Participation also includes: Access to research-based information about family communication and conflict,contributing to research by completing surveys and Zoom sessions with our team, and the chance to earn up to $370 for completing the program
Who is eligible to participate? Couples who are married living together with: 1) A typically developing child between the ages
of 10 and 18 AND 2) A Child of any age who has an intellectual or developmental disability.
- The Relationship of Adaptive Clothing on the Social Participation and Self-Esteem of Adolescents with Disabilities
Emalee Brown and Dr. Lacee Boschetto, Utah State University
If your child is between the ages of 13-17, and is someone that fits the criteria of the study population, your child is asked to participate in the study. The study population includes, but is not limited to, the following situations: Currently uses a wheelchair, crutches, braces, or other mobility devices, Currently has a port or colostomy bag, Has other disabilities that affect use of their limbs or torso and/or Has other physical disabilities or impairments that require, or would benefit from, the use of altered or adapted clothing. This survey is online through Qualtrics, and is designed to provide information on clothing, self-esteem, and social participation of adolescents with disabilities or impairments. The survey will take approximately 10 minutes. No follow-up commitment is required. If your child is not physically able to complete the survey by themselves, you may provide assistance in answering the questions. Children that are not mentally capable of forming their own responses are excluded from this study and do not need to participate.
- Perceptions of Autism Characteristics in Females or Atypical Autism
Laurel Bishop and Professor Terisa Gabrielsen, McKay School of Education, Brigham Young University
Are you an educator or professional who works with people with autism? Do you or a family member have autism? Please help with research on identifying females with autism by completing our short survey. Please forward this survey on to anyone you feel would be willing to help with this research. We are looking for educators, service providers, parents, medical providers, or anyone who may work with children or adolescents.
- Care for Utah’s Rare
Abigail Isaac, and I’m a co-creator of the Care for Utah’s Rare movement
Our end goal is to increase funding for disabled children in Utah. Specifically, expanding the reach of the MCCW (Medically Complex Children’s Waiver). According to the Kaiser Foundation, Utah provides support for only 15% of all medically complex children. It is not enough. We plan to put pressure on the state legislature by creating a national movement through social media, and hopefully news networks. As my state representative Ray Ward said, “They’re not going to do anything unless there is public outcry.” What we need is people who can make noise. We need resources and facts. We would love for medically complex families all over the state to join us. We want people, and our government, to understand that life is hard for us. We want them to understand that there are families who are fleeing our state because they can not afford to keep their children alive here. We’d love for you to follow our account, share our posts, and fill out our survey.
- Infants Needed for Study at Brigham Young University
Dr. Rebecca Lundwall, Cognitive Development Lab, BYU
We are collecting data from infants who are between 8 and 12 months old and either have: An older, full biological sibling with ASD, or
Do not have any first-, second- or third-degree relatives with an ASD diagnosis. First-degree relatives are parents and siblings. Second-degree relatives include an individual’s grandparents, uncles, aunts, nephews, nieces, and half-siblings. Third-degree relatives include an individual’s great-grandparents, great uncles/aunts, and first cousins. Initial participation involves collecting fecal samples from the contents of the infant’s diaper, storing them in special test tubes, and allowing us to pick them up within 48 hours.Phase 2 and Phase 3 requires a visit to the Cognitive Development Lab.
- Parent Perceptions on School-based Parent Engagement Strategies in Secondary Transition
Wen-hsuan Chang and Ya-yu Lo, PhD, University of North Carolina, at Charlotte
The purpose of this study is to to identify school-parent collaborations, facilitators, and barriers through parents’ perspectives on school-based parent engagement strategies. To be eligible for this study, you must (a) be a parent of at least one transition-aged (ages 14-21) youth with disability(ies) who currently have an individualized education program (IEP) and receive special education services in the United States, (b) live in the United States at the time of the survey, and (b) have access to a computer/tablet and WiFi to access the survey. You will be asked to complete two-open ended questions about barriers that prevent you from engaging in your child’s school activities in addtion to demographic information. It will take approximately 20-30 to complete the survey.
- Interactive Social Behavior Assessments Performed by Parents
Jack Olson and Dr. Opal Ousley, Emory Autism Center at Emory University
The purpose of this study is to answer the question of feasibility for parents to perform interactive social behavioral assessments on their own children. By gathering information from parents that lead to a better understanding of the feasibility and workload of social behavioral assessments when performed by parents on their children. This assessment is for for parents and their children ages 6-60 months. To participate you will need to have a small ball (3-4 inches) and a child’s board book (2-4 inches). The assessment should take approximately 30 minutes to complete.