URLEND Leadership / Research Project Guide 2014-2015
Revised 08/27/2014
The goal of the URLEND Leadership / Research Project is to identify projects that are consistent with the mission and purpose of MCH & URLEND – to foster excellence in service provision for children and youth with special health care needs and their families, based on respect for the family, cultural sensitivity, and active cooperation among service providers and family members. The following link is provided as a reminder of the MCH and URLEND competencies. Please review this resource in preparation for participation in your project.
http://urlend.org/documents/mch_leadership_comp_3-0.pdf
In order to best meet the MCH & URLEND competencies, URLEND requires each trainee to participate in a team leadership project. In addition, trainees may wish to work as a “consultant” on other projects if asked, not making a full commitment to the entire project, but providing supportive guidance in his/her area of expertise. In order to achieve these competencies, the URLEND management team has developed the following goals in order to develop leadership skills required by leaders of today and leaders for tomorrow.
Leadership Projects Goals:
1. The project will result in a deliverable with impact
· Type I: a product that is publishable
· Type II: a product that could be in the public domain and have an impact in systems, families (faculty note: the type of product that is reportable in NIRS)
2. The project will result in a meaningful interdisciplinary team experience
· Learning from the team process
· Learn skills in the team process
· To facilitate a productive interdisciplinary team experience, groups will be organized according to the following:
· Clustering trainees with similar long term professional goals
· Diversity of trainee disciplines within projects
· Diversity of geographical locations
· Cluster AE-only trainees together
3. The project will be used to complement/enhance the trainees leadership experience that occurs concurrently in the didactic portion of the curriculum.
Beginning on page 13 of this document, you will find the following supportive documents:
· Timelines for development and submission of the paper and presentation (pg. 13)
· Guidelines for writing an APA Style Paper and for your leadership paper (pg. 13-14)
· Template for the Initial URLEND Leadership/Research Project Description (pg. 15)
· Guidelines for the Leadership Project Presentation (pg. 17)
· A document entitled, Creating Working Norms and Agreements, a required reading (pg. 18)
· Team Charter Template – a resource for teams who wish to formalize their working relationships (pg. 21)
All projects are intended to be evidenced based and may focus on one or more of the influence areas described by MCH (Self, Others and Community). Each team of trainees will produce a product at the completion of their project (see descriptors above). Each team must identify a methodology in which they will disseminate their information as well. This may include submitting to AUCD or other professional associations for presentation at conferences, preparing an article to a journal for publication, development of a website with linkages identified so that information may be widely accessible.
All projects will follow the same procedures outlined here. Each project team will present a draft of their project (see outline below starting on page 14) by the end of the first semester and the results of the project at the end of the second semester. By the end of the academic year, trainees must complete and turn in a professional write-up of their project(s) in APA style (see guidelines below). Projects that will result in a product other than a journal ready paper will still follow the procedures and outlines below as much as possible and submit their final product at the end of the academic year. Each project mentor will guide their team more specifically.
Examples of previous projects and presentations can be found at www.urlend.org (lower right hand side). Please refer to the presentations under the link Previous Trainee Presentations to see the format that is required. Any projects that are in print or accepted for publication will be posted following publication.
As you work together in teams to develop your project, consider these questions:
· Does your project involve children / young adults with special health care needs and/or their families?
· Will you need IRB approval?
· Does your project consider cross-cultural differences and foster inclusion?
· Are you considering an interdisciplinary approach to service delivery, or taking a larger systems view rather than that of a single discipline?
Protecting Human Subjects: When to Get Institutional Review Board (IRB) Approval
Please read through the document “Is Your Project Human Subjects Research,” (http://www.umt.edu/research/compliance/IRB/Docs/Is%20it%20Human%20Subjects%20Research.pdf) created by the University of Montana, to help you determine whether or not IRB approval will be necessary for your leadership project (a copy of this document has also been placed on the Canvas website).
It is important to start the IRB process as early as possible, in order to ensure your group will get approval for your research and still have enough time to complete your project. If you have questions or concerns about your project, please contact your University’s IRB. You will need faculty approval in order to submit to the IRB, in order to keep things moving smoothly, your faculty mentor will submit the IRB application.
IRB Information
University of Utah, (801) 581-3655
Utah State University, (435) 797-1821,
University of Idaho, Contact Gwen Mitchell () prior to any submissions
University of Montana, (406) 243-6672
University of North Dakota, (701) 777-4279
University of Wyoming, (307) 766-5322
URLEND Program Leadership Projects 2014-2015
1. Montana Systems Change
URLEND faculty mentor - Kyle Colling, PLUK liaisons, Roger Holt and Mary Hall
Teresa Molina Social Work (Judith) SLC
Ann Douglas Clinical Psychology (Kyle) Missoula
Howard Fulk Sp. Education (Gwen) Boise
Laura Ambrose School Psych (Kyle) Missoula
Initial Concept
In conceptualizing a process that would be of most benefit, we came to the following conclusions: 1.) Doing this research across states would be too large a task; and without some careful controls, the findings would be confounded by systems variability and lacking the kind of specificity that creates buy-in and best lends itself to systems change. 2.) Targeting Montana as the focus of this project could result in two important outcomes: data and a process to support systems change in Montana; and a model for data collection and outcomes application that could be used as a framework for other states. 3.) In order to gather extensive and sufficient data, and to bring this data forward as a catalyst for systems change, 3 years would be required. I assume IRB application would be required (ours?) and the students would be responsible for drafting the application.
Rough Design
Target population: Young adults who have ASD and do not quality for DD services, and parents of the same target group. The purposive sampling process used in years one and two would be led by PLUK. PLUK would have a partnership role throughout the entire three-year process and would contribute materials, supplies, transcript preparation and other supports as possible (within their role and scope and fiscal limitations).
Year One
Year one would generate qualitative data to be used to bring depth of understanding of the challenges of transition. Four focus groups would be conducted: Two groups that would include parents (group size approximately 10 each), and two groups of young adults with ASD (group size approximately 5 each). LEND students would lead the focus groups, and they would be assisted by a second moderator for each group. The parent group second moderator is TBD. The second moderator for the student group would be Mary, but again the LEND student would be primarily responsible. Students would develop the questioning route with review, feedback and approval by the group leader, as well as Roger and Mary, and possibly others. Sites for the focus groups are TBD. Groups would be tape-recorded and verbatim transcriptions prepared with assistance by PLUK staff. Additionally, it may be desirable to conduct a number of telephone interviews to gain information from people living in rural areas (rural vs. ‘urban’ experience) to augment the focus group data. Analytic procedures would be determined by the group leader and the leadership students. Standard research protocols and subject safeguards would be used. Product: This qualitative work would: 1.) Generate a stand-alone paper suitable for wide distribution that summarizes this research, and 2.) Inform the development of the survey to follow in year two, and 3.) Possibly publication
2. Genetic Testing in Children with Autism Spectrum Disorder (AE only trainees)
URLEND faculty mentors - Paul Carbone, Lead Faculty Mentor
Other faculty mentors - Terisa Gabrielsen, Deb Bilder
Kristina Cottle Psychology (Terisa) SLC
Shelly Woeste Physical Therapy (Terisa ) SLC
The American Academy of Pediatrics and the American College of Medical Genetics recommends genetic testing (chromosomal microarray as a first tier test) for children with autism spectrum disorder (ASD). There are several studies suggesting that genetic services (genetic counseling and testing) are underutilized by families of children with ASD. The reasons for this are not clear but may involve lack of awareness of this recommendation by primary care providers, lack of insurance coverage for testing, lack of interest in this testing by parents, or lack of access to genetic services. The object of this study is to examine the prevalence of genetic services among children with ASD within the University of Utah Neurobehavior HOME Program (HOME). Compared with previous studies, we hypothesize that an interdisciplinary clinic that emphasizes family centered care will have a relatively high proportion of children with ASD that have used genetic services and had appropriate testing among children with ASD. As a secondary outcome we will also examine the results of genetic testing in children with ASD, and if this testing changed treatment plans. Several patient and family variables (sex, age, race/ethnicity, intellectual disability, insurance coverage, years enrolled in the program) will be included in the analysis to assess for significant associations with the primary outcome variables.
Because this study is part of a greater group of studies that examine the associations of children with ASD to a variety of outcomes, there is an existing IRB exemption from the University of Utah to perform this retrospective chart review. Thus, no time will be needed to wait for IRB approval.
Under the direction of the primary investigators, Drs. Carbone, Bilder and Gabrielson, trainees will perform a preliminary literature search on the topic, conduct a retrospective chart review, create a database, assist in data analysis and report results. We anticipate this work being disseminated as a poster, journal publication or both.
3. Spanish / English radio novella
Faculty Mentor - Eduardo Ortiz
Dallin Dance Dentistry (Duane/Jim) SLC
Elizabeth Lopes Education (Barb) SLC
Jessica Stevens Nursing (JoLynn) Minot
Jillian Fox Nutrition (Heidi W.) Logan
Culture plays a large role in parents’ expectations regarding developmental milestones. Racial and ethnic diversity is growing dramatically in the United States especially at younger ages. For example, more than half of our nation's population younger than age 1 were minorities in 2011 (US census https://www.census.gov/newsroom/releases/archives/population/cb12-90.html). Also, at present, there is a significant health and disability disparity gap among racial and ethnic groups. The need for accessible health care information, nuanced for children with special health care needs, and those with decreased access due to rural locations, poverty, language barriers, immigration status, lack of insurance, and low levels of education represent a challenge to develop effective ways to communicate meaningful information to minority audiences considering best practices, family centered, and cultural competent/sensitive approaches. Following the work developed by the Wisconsin Family Support 360 (WFS 360) project who created a radio novella in both Spanish and English about important issues related to a minority family having a child with disabilities (http://www.waisman.wisc.edu/familysupport360/pdfs/novela.pdf), we would like to expand this idea developing another radio novella but it will focus on our own regional/local issues and priorities related to the disabilities field. This project will develop several episodes identifying the values, best practices, challenges, cultural context, and take away message for each episode emphasizing one critical issue at a time. We will create an interdisciplinary and intercultural committee to guide the proposed work. A former URLEND trainee has a local radio program that might help facilitating its product dissemination. The overarching goal of this project will be to increase the families and communities’ understanding of their local health care system and to facilitate the dissemination of disability information to diverse families. URLEND program can play a pivotal role into this process.
Anticipated deliverable project – radio program that could be shared across our partner states
4. CMV video production – Part 2 (IPA project)
URLEND faculty mentor - Stephanie McVicar
Kristy Rogers Dentistry (Duane/Jim) SLC
Taylor Stevenson Audiology (Stephanie) SLC
Ana Caballero Cardova Audiology (Stephanie) Logan
Janine Wood Physical Therapy (Heidi L.) SLC
PSA for all partner states based on last year’s project. Utah is the first state in the nation to mandate a CMV Public Health Initiative. These extra funds would allow this next year's IPA Leadership Project to piggy-back on the excellent IPA project created by last/this? year's trainees (CMV Public Awareness Video). Amazing footage was captured in their interviews with Utah families affected by CMV. Only a small portion was utilized in this year's production. Extra funding would help take this project to the next level, e.g. creating a much longer video as a documentary containing increased educational content.
Anticipated deliverable project – video / PSA
Since this is a continuing project, please review the following information in preparation for this project:
YouTube Link
https://www.youtube.com/watch?v=EsqOb8wDY9c
Link to last years project
5. Self learning module, differentiating ASD from Hearing Loss (AE and IPA project)
URLEND faculty mentor - Vicki Simonsmeier
Lisa Rose Audiology (Stephanie) Logan
Lydia Rosado Rogers Audiology (Stephanie) SLC