There are a number of reasons why prenatal medical outreach is an important priority for patient advocacy organizations and advocates who serve people with genetic conditions. Let’s explore them below:
Expansion of Prenatal Screening
Prenatal screening has been consistently expanding over the past decade as the technology has evolved since the release of cell-free DNA/NIPS/NIPT in 2011. Learn more about this technology from the ACOG Cell-free DNA Prenatal Screening Test (Infographic). In addition, screening has been adopted more into practice since the the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that all women be offered screening regardless of age, and ACOG outlined in 2016 how cell-free DNA screening can be utilized. For a full discussion of the evolution of prenatal screening, see the Hastings Center Report. Fundamentally, we can anticipate that the majority of families in the future will learn that their child has Down syndrome during pregnancy.
Defining moment for families
Dr. Brian Skotko describes the moment of receiving a diagnosis as a “flashbulb memory,” a memory people can describe with near perfect clarity years later. This moment creates the emotional framework for how expectant parents receive the news. Unfortunately, research by Nelson-Goff showed that 35% of patients reported a negative experience when their clinician delivered a prenatal diagnosis of Down syndrome compared to only 11% reporting a positive experience (2013). So for every one parent having a positive experience, three are having a negative experience. One of our goals with the prenatal medical outreach program is to give clinicians the resources and support they need to help make sure families have a positive experience.
First point on the life course for families
For many families, a prenatal diagnosis is the first point on the life course, and providing them with access to supports and services from the start can help improve longterm health outcomes and emotional well-being.
Limited training for clinicians
Medical professionals must focus on a broad array of topics in medical school from best practices for performing a c-section to treating endometriosis. This means that they may not have gotten much time to focus on genetic conditions, particularly information about life outcomes beyond common medical issues. Research by Cleary-Goldman showed that 45% of practicing obstetricians rated their residency training regarding prenatal diagnosis as “barely adequate or nonexistent.” Therefore, they may likely value additional tools to discuss these conditions.
Access to resources for underserved populations
Until the past few years, people with Down syndrome who were black or Hispanic had much lower life expectancies than white people with Down syndrome. This disparity was not because of increased medical conditions but was largely because of disparities in access to supports, services, and healthcare. Therefore, it’s critical that families from all ethnicities and cultures have access to information about available services right from the start. Our Lettercase resources are translated into 10 different languages and are recommended in the NIH HealthReach database for immigrants.
Provide up-to-date, balanced, accurate, and medically reviewed resources
The medical community and expectant parents need information that addresses the concerns of patients, medical providers, and the advocacy community. Research by Sheets and Levis, show that expectant parents want to learn about medical issues and also supports and services like early intervention. They also want to see photographs of people living with the conditions and to get information about family outcomes, adult life, and recreation to provide a more balanced view of what life is like for people living with genetic conditions. In addition, clinicians want resources that are recommended in guidelines, resources that cover medical issues, and resources that cite peer-reviewed research when making claims about life outcomes. Meanwhile, disability advocates want materials that get beyond the medical model of disability to also cover life outcomes, and they want materials to use respectful language and imagery. Prenatal medical outreach efforts can ensure that clinicians have access to credible and balanced resources to give expectant parents the information they need.
Build trust, respect, credibility and professional relationships between medical provider and the patient advocacy community
Ultimately, medical providers can benefit from a closer relationship with the patient advocacy community so that because advocacy groups can provide reputable contact information and inform clinicians about the most helpful sources of information. In addition, advocacy organizations can benefit from closer relationships with the medical community so that they can learn from the medical expertise and share helpful resources for expectant parents with the medical providers. As these relationships of trust grow, they can start to offer presentations together, serve as trusted advisors, engage in community service together, and more.
Learn more about what motivates the work we do at the Lettercase National Center for Prenatal and Postnatal Resources and how much medical outreach can mean to families learning about a diagnosis:
The Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute is the nation’s clearinghouse and comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions. Lettercase builds bridges between the advocacy and medical communities and leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis.
Please take the time to complete the evaluation of FET
10-11. All of your feedback is greatly
appreciated and will be used to help enhance the course and make changes as
needed.
Please complete the
anonymous course evaluation available below:
Your Training Coach, up to this point, has been working with
you and reviewing all uploaded course content.
Please make sure you have followed up with your Coach as needed
throughout the course.
Upon successful review of all of your FET assignments and
essays you will receive credit within 10 calendar days of the assigned end date
of FET, or when you have completed all necessary requirements – whichever is
later. Please note that if you finish all
content early, credit will still not be issued until after the official last
day of the course.
Please note: completion certificates are not issued. To verify completion of FET, log on to ECE-TRIS to view your training record.
Now it is time to complete your application for your Trainer’s
Credential.
Prior to submission of your application please make sure you
have completed all three of these trainings:
Introduction to Resources in Kentucky for Early
Childhood Professionals
ECE-TRIS Data Entry
Fundamentals of Effective Training.
Before your application can be approved all 3 trainings must
be completed. Once complete all 3
trainings can be found on your ECE-TRIS record within 10 days of completion.
To complete your Trainer’s Credential Application you will need to log onto ECE-TRIS (https://tris.eku.edu/ece/) and click Trainer Credential Applications.
You can then either choose to search for an application, if you have already started your Trainer’s Credential Application, or click “Submit Trainer Application”.
Please note that information is automatically populated
based on what has been provided to ECE-TRIS.
Please update any inaccurate or out of date information.
Remember that your Training Coach is also available as a
resource to assist you in reviewing your application documents and submitting
your application.
Thank you for your participation in FET. Please stay in
touch and let us know how we can continue to support you as a credentialed
trainer.
As you know, a summary activity should be included in the Closing Component of a training. The summary activity for FET is in the form of a Jeopardy online game.
1) Click on link above to open the game. 2) Select “1 team” and choose a captain’s avatar. 3) Click through the instructions, then on start game to begin. 4) Click on a $$ amount. 5) Read the clue and hold the answer in your head. 6) Click on “skip/see answer” to see if you are correct. 7) Update your score accordingly using the ✔️ or ❌. 8) Click continue to advance to the next question. 9) Take notes on anything you get wrong so you can review FET materials for more context on the correct answers.
In this section we will look at helpful questions that will
assist you in analyzing your training and determining the refinement that is
needed to make it more effective for future participants.
Necessary Step: Post-Training Reflection
If you are new to training, consistentlyengage in the post-training reflection exercise of analyzing information from participant evaluation forms and self-reflection.
If you are an experienced trainer, but not taking the time or effort to do this post-training reflection exercise, it is time to implement this step in your workshop process.
The questions asked on participant evaluations are very important. They are the premise for getting the answers needed for reflection, analysis and ultimately, refinement of that training. Likewise, the trainer should answer these same questions as part of his/her self-evaluation. This process of analysis; reflecting back, documenting observations and analyzing the level of effectiveness in implementing the training process, content, activities and of their own skills and knowledge as a trainer, should be a consistent part of a trainer’s workshop process.
Here are some important reflection questions a trainer
should use to guide the development of their evaluation forms and for
self-evaluation, post-training.
Each of these questions can be answered from two perspectives:
From information summarized off participant evaluations.
From the trainer’s own observations and experiences while conducting the training.
One very important message to get from this
section on Refinement of Training is that not only do you need to get and pay
attention to feedback from participants, you need to also self-analyze. Your
own observations of participant’s actions, interactions and reactions during
the workshop, as well as your observations of your own actions, interactions
and content delivery throughout the training session provides much information
on what went well and what needs to be refined to make the next workshop
experience more effective.
Post-Training Reflection
…a series of questions to
ask yourself:
In what ways did the training process do what it was designed to do in regard to the Workplace Outcome and Training Outcomes?
At what level of success did the content do what it was designed to do in regard to the Workplace Outcome and Training Outcomes?
In what ways should the process be revised?
In what ways should the content be revised?
In what ways (if any) does the training content need to be revised due to:
a need to align with revised Training Outcomes developed to meet federal, state, local regulations?
a need to meet changes in recommended practices?
If the training needs to be expanded, what are the reasons;
need for additional content, time issues, etc.?
If the training needs to be eliminated, what are the reasons;
lack of need, cost effectiveness, duplication of content, etc.?
‘Series of Questions’ Tool
Using the ‘Series of Questions’ tool, you
will
Gain useful information
Better analyze and determine future steps
Better prepare for subsequent training
Better meet your own goals as a trainer
You can customize this tool by
adding questions you deem useful!
You have completed Levels of Evaluation and the Training
Improvement Process!
The Training Improvement
Process provides a look at how evaluation information can be used and asks the
trainer specific questions regarding data that determines the training process,
the trainer’s personal performance and cost effectiveness/justification of the
training. Each of these areas is addressed within the four levels of
evaluation.
How
will the data be used?
How the evaluation information will be used directly impacts how the data
will be analyzed and reported.
Will data be used to determine the PROCESS→ how to
improve the training itself and/or the outcomes for the participants?
Will the data be used to determine the trainer’s
PERSONAL PERFORMANCE→ how well the trainer facilitated the training?
Level I and Level II Evaluation
typically cover these two areas.
Will the data be used to determine the COST EFFECTIVENESS? → Can the
training be justified to the administrators and/or to the funding
source?
Level
III and Level IV Evaluation
typically cover this area.
Analysis of data is important because those hiring you to train care about their “return on investment” otherwise referred to as ROI.
Who
will receive the results?
These individuals could be interested:
Director/Administrator
Session Participants
Funding Source
Families
What specific information will they need?
The information trainers need from an evaluation include:
Participant
Reactions
Results
and Impact
Behavior
Change
Content
Learned
What dissemination format?
What dissemination format will be most
appropriate?
Copies of Evaluations
Narrative Report
Graphs
Summary of Evaluations
How to disseminate
information?
How will the information be disseminated?
Face-to-Face Presentation
An emailed 1-2 page Summary of comments and
calculated averages
Written Narrative via email
Hard-copy
of Summary/Narrative; hand delivered/mailed
Review of Important Reporting Questions
Reporting questions that need to be asked and answered…
Who will receive the results?
What
specific information will they need?
What
dissemination format will be most appropriate?
How will the information be disseminated?
When you take the time to analyze your data, you then have the needed information to make refinements in your training style, the training content and the subsequent training delivery. The next part of the training improvement process is looking at the connection between evaluation and refinement of your training.
The purpose of evaluation is to measure and describe outcomes at scheduled points in time.
Evaluation involves a
variety of methods to measure whether the outcomes set for the learners have
been achieved. It is essential to plan not only HOW a trainer will measure
outcomes, but WHEN to do so.
Pros
& Cons of Evaluation
As you may recall from our “Debate” at
the face to face FET training, trainees may have differing opinions about the
use of evaluations to assess the effectiveness of training. In this next
exercise, read the statement and decide if you would consider it a “Pro”
or a “Con” of evaluation.
Participants will classify evaluation activities into four
major levels of evaluation.
Participants will submit an
evaluation plan for training they designed during the face to face session.
Participants will describe the purposes of the data analysis process
and uses for evaluation information.
Participants will select data analysis processes that can
inform them about refinement of one of their training sessions.
Participants will apply key data analysis questions in
analyzing a training session to determine the level of refinement needed.
Roadmap
Review
the purpose of evaluation
Identify
some pros and cons of evaluation
Explore
data collection techniques for evaluating effectiveness of training
Discuss
the three ways data can be used and how that influences analyzing and reporting
the data.
Identify
the four reporting questions that must be asked and answered by the trainer.
Identify
some reflection questions that guide the creation of Evaluation Forms
and support the trainer’s self-reflection of the training session.
[ms_panel title=”Handout” title_color=”#1a72bf” border_color=”#1a72bf ” title_background_color=”#f5f5f5″ border_radius=”0″ class=”” id=””]?Please refer to the FET Handout: Levels of Evaluation.?[/ms_panel]
Congratulations! You have now walked through all the steps necessary to complete a Training Plan. Looking forward to putting this into practice at our upcoming face-to-face training. For full details about the face-to-face location and agenda for the day go to FET-9 under My Courses.
Evaluation
Your feedback is valuable and greatly appreciated. FET recently transferred to a new learning management system and we are particularly interested in hearing about your experience.
Please complete the anonymous course evaluation available below:
*Note: This evaluation should only be completed once.
Thank you for your participation!
We know this is a lot of information to
digest. No need to worry, remember your
Training Coach will always be available to assist whenever you are developing a
Training Plan. Training Coaches are
available as a resource before, during, and after FET.
Contact information can be found here:
Training Coach Map
Visit the Partnership for Early Childhood Services Website to find the contact info you need!
By
now, you have been introduced to the Needs Assessment and the Training Plan
Worksheet. These two documents are essential to creating a Training Plan.
Creating
the Training Plan is step #7 (How?) of the 7 steps in developing a Training
Plan. The ‘how’ is all about the Training Plan.
The Training Plan is the
roadmap that guides how the trainer will….
Cover the content
Use appropriate methods and interesting materials
Provide practice opportunities
Meet learning styles
Remain focused
Stay within the timeframe agreed upon
Meet the training outcomes.
The
Training Plan also helps to ensure that participants can be more successful in
meeting the Workplace Outcome. The Training Plan is critical for successfully
addressing the ‘how’.
All
the work you have done up to now will provide the content and information that
is needed when creating your Training Plan.
A blank copy of the Training Plan Form can be found in your FET ?handout on pg 43-45. Please pull and refer to as needed. To download an electronic copy, please click the button below.
Training Aids are multi-sensory materials designed to also assist the trainer in addressing adult learner characteristics. It is an asset as a trainer to be more intentional to meet the needs of our learners.
Common Training Aids
PowerPoint
Handouts
Video clips
E-charts & graphs
Props
Demonstrations
This list will not surprise you as a trainer or as a participant. They are commonly used and when used appropriately and in balance with other strategies, they are effective, useful and keep the training sessions interesting. The key words here are “used appropriately” and “in balance.” Any strategy, method or aid that is overused loses its effectiveness, so you want to balance your use of the various things that are available to you.
More Training Aids
Flip charts/Posters
Dry-Erase Boards
Models/Mock-Ups
Photos/Pictures
Job Aids
This additional list of training aids is to remind you that you
have lots of options available. That said, these lists should help you to
always keep your training fresh and interesting. It is the trainer’s
responsibility to work on keeping participants “tuned-in” and “turned-on” to
what they have come to your training to receive.
Within this second part of Training Aids, you will be exposed to many kinds of training aids for you to consider implementing in your training sessions.
You will need your handout accessible in order to successfully complete this section; pages 31-37.
Training Aid Types, Benefits and Tips for Trainers
The following activity provides you with an opportunity to carefully look at the pages on Training Aids in your FET ?handout and to reflect on one that is of interest to you. As trainers, we use many if not all of these and they can all be useful and effective if matched with the correct content.
Read pages 31 – 37 to learn about the types, benefits and trainer tips for the various training aids described.
From the examples provided, choose one training aid and write a statement as to why you like it and how you use it.
Think of one Training Aid that you plan to use, and in the comment box below, respond to the following:
1) What makes this Training Aid effective?
2) How would you use that Training Aid in a training that you conduct ORhow
you have seen it used by another trainer?
This is an ungraded assignment but must be completed to proceed.
Once you complete the assignment, you will have completed FET: 7 Training Aids. Please move on to FET 8: 3 Components of a Training Plan – found under “My Courses”.
Multi-sensory materials that support the selected training method.
Rationale for using a variety of Training Aids:
Focus learner’s attention
Increase learner’s interest
Improve learner’s retention
This definition and rationale supports
the notion that everything we talk about has a purpose and is designed to help you
design and/or develop a more effective training opportunity for the
participants that will be in your training sessions.
On each box is a common training aid that supports learners.
Props, demonstrations, and testimonies help to focus a learner’s attention.
Graphs, charts, resources help to increase a learner’s interest
If you as a trainer continuously use the same training methods that you enjoy as a participant …
You will be at ease using that training method.
That training method will likely be successful for you.
You could get “stuck” using that training method too much and the result would be less interesting training.
You would not be meeting all of your audience’s learning needs.
You will need to expand your repertoire of training methods.
What should influence your selection?
The following four criteria must be considered and will
influence your selection of a desired “training method”:
Training Outcomes
The Learners
Size of group
Experience levels
Practical Requirements
Training room environment
Time involved (prep and execution)
Materials needed
Costs involved
Advantages and Cautions to Consider of the Training Method
The more familiar and comfortable you become in exploring and implementing various training methods, you will realize how important each of these criteria are in making decisions regarding the feasibility with any given method.
Process or strategy used to present and emphasize workshop
content.
Rationale for
using a variety of Training Methods:
Assists the trainer in addressing adult learner
characteristics as well as meeting the needs of diverse groups of learners.
Training methods are a trainer’s good friend. The effective use of training methods can help your training stay interesting, focused and active, therefore meeting the needs of your participants.
Below are the Training Outcomes and Roadmap that will show the path you will be taking to learn more about Training Methods.
Training Outcomes
Participants will describe basic
training methods that utilize principles of adult learning theory to effectively
present training content to diverse groups of adult learners.
Participants will select training methods that utilize principles of adult learning theory to effectively present training content to diverse groups of adult learners.
Roadmap
Provide the definition and rationale for ‘training methods’.
Discuss four criteria to consider when selecting training
methods.
Identify training methods that support specific principles
of adult learning theory.
[ms_panel title=”Training Methods” title_color=”#1a72bf” border_color=”#1a72bf ” title_background_color=”#f5f5f5″ border_radius=”0″ class=”” id=””]?Please refer to the Handout FET: Training Design pages 20-29.?[/ms_panel]
