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We have found
that most questions related to this study can be addressed by our FAQ
section below. Please read over thoroughly. If you have other questions
that are not addressed, you are welcome to contact
us.
Who is eligible to
participate?
Children
who are eligible meet the following requirements
--Are between the ages of 5-12 years old
--Have a formal diagnosis of SM from a licensed treatment professional
--The child must have SM symptoms NOW and not in the past. (meaning, if
they have a past diagnosis and are now verbal in ALL settings, they are
not eligible)
--The child cannot be pervasively mute (mute in all settings and with
all people)
-- Must present to the
Smart
Center
in
Jenkintown
,
PA
(
NE Philadelphia
)
What
if my child is a year or two out of the study age requirements?
If you child is not between the ages of 5-12 years of age, he or she
Is not eligible. The assessment forms used are standardized for children
between the ages of 5-12 years old. We cannot make any exceptions.
WHAT
is the purpose of this study?
---To determine the incidence of communication disorders among a
sample of children with SM.
---To determine if the child’s speech-language difficulty is
anxiety-based or if there is an added component of a receptive /
expressive speech-language disorder.
---To determine if parents can effectively administer selected
speech-language tests to their children suspected of having SM
(Click here for more detailed objectives)
WHO
is orchestrating the study?
The study is a
collaboration between LaSalle University Speech-Language-Hearing Science
Programs and The Selective Mutism Anxiety Research & Treatment
Center. The primary
investigators are Evelyn R. Klein Ph.D, CCC/SLP, a licensed psychologist
and licensed speech-language pathologist and board recognized specialist
in child language and Elisa Shipon-Blum DO,
is a board certified physician, director of the selective mutism anxiety
research and treatment center and a known expert in the field of
Selective Mutism.
What is the course of events for the research study?
Click here to View
Parent Consent Form for study details
Where will the study take place?
The study takes place at the Selective Mutism Anxiety Research and
Treatment
Center
(
Smart
Center
) located at
505 Old York Rd.
Jenkintown
,
PA
19046
. This is NE of Philadelphia, Pennsylvania. Directions
to the SMart Center
Participants must present to this location for study participation.
IF I
live in another state, can i participate?
Absolutely!, However, you must be able to present to the Smart Center in
Jenkintown, Pennsylvania at your scheduled time.
I am willing to go to the
Smart
Center
for the study, but will be traveling from another state. Can I receive
travel expense reimbursement?
NO, we do not have funding to reimburse families for travel.
Travel is tax deductible and can help reduce your tax liability.
My child is usually MUTE with all adults. He may not speak to me during
the evaluation and I am relatively sure he will remain mute with the
evaluator. How will this be
handled?
Your scenario is common. Since
your child does speak to you in at least one setting, our study tries to
create a one-on-one parent-child scenario. You and your child will be in
our large playroom without anyone else around. We have a two way mirror
and microphone and will be able to assess your child via his responses
to you. If your child remains mute with you, we will ask you to TAPE
your child at home doing the evaluations we trained you to do. You can
then send us the tape. You will need to tape your child without him
knowing since many children with SM ‘clam up’ and do not speak
during videotaping. If your
child is mute with the evaluator, which we know will happen in many
cases, then our study indicates this. This is important to know since
the results will show, based on the number of children we test, roughly
what percentage of children remain mute with ‘strangers’ (hence
outside SLP’s, therapists and school professionals). This is an
important fact to know! Our
hope is that we will at least receive your taped assessment with your
child to be able to STUDY your child’s speech and language skills and
compare them to our other study subjects.
My
child is mute in ALL settings and speaks to no one, not even her
immediate family. Can she still participate?
NO, your child must be able to speak to someone to participate. There is
no way to assess the skills we are trying to assess without ANY speech
at all.
My child is on medication, is he
still eligible for participation if he meets the other eligibility
requirements?
YES, your child can participate in the study while taking medication.
However we will need to know this for study analysis.
WILL my child’s privacy be
protected?
YES. Your child’s assessment forms are confidential and only seen
by the research and scheduling staff. Your child’s name will not be
used in any publication regarding this study. Video tapes are
confidential and seen only by the research staff for analysis. They will
be stored and kept in a private file that is exclusive for this study
only. The Videos may be used for training purposes (if you agree);
however, NO names will ever be disclosed. Your family’s contact
information including names will not be supplied to any other
organizations for potential research solicitation.
Will my child receive any gift
for participating in this study?
We will supply all children with small take-home gifts. These toys
or small items will be supplied to your child immediately following
participation.
My
child HAD SM, but is now verbal in all settings. Does she qualify for
testing?
Unfortunately, NO. Part of
the study requirements are that your child meets the criteria of SM at
the time of study participation. We are assessing S/L skills in children
who are SM now. NO exceptions can be made.
WHAT should I tell my child about the study?
Depending upon your child’s age, awareness to his or her
difficulty will dictate your response.I suggest you tell your child that you are going with him/her to an office where he will look at pictures, and listen to stories. The reason you are doing this is to learn more about his/her understanding and use of language. You can mention this to him/her a few days before you come. If he/she asks questions, try to answer them as best and honestly as you can. Reassure him/her that nothing will be done that hurts and it is more like play time. You will be with him/her in the same room for most of the time and for the rest of the time you will be in a room right next to him/her. You can also tell your child that many children the same age come and work with us at the SMART Center.
IS this study a full speech and language evaluation?
No. This is a research study and not a comprehensive speech-language
evaluation. This study assesses narrative language skills, one of the
strongest predictors of language outcomes and one of the best ways to
assess language and working memory using high interest stories. In
addition, speech intelligibility and vocabulary knowledge (receptively
and expressively) are assessed. A
questionnaire is also provided to obtain information about pragmatic
language skills (the functional use of language). A brief summary of the
findings will be provided, however this does not include a complete
diagnostic report.
What
is the difference between what this study assesses and a full S/L
evaluation?
Professionals
have a wide range of assessment measures to choose from when testing
speech-language skills. Previously,
traditional S/L evaluations assess syntax, morphology and semantics as
well as pragmatics using specific subsets. These tend to be separate and
do not comprise a single cohesive domain. In this study, we are
assessing the major parts of by using a measure of narrative language
which has proven to be of predictive value in the area of speech and
language (Botting, Faragher, Simkin, Knox, & Conti-Ramsden, 2001).
Narrative performance at age 7 has proved to predict many areas of
language ability at age 11. Children who have success in learning words
and sentences are better at acquiring narrative schemes.
What ‘specifically’ does this study assess?
The study tests
narrative skills (one of the strongest predictors of language outcomes
and one of the best ways to assess language and working memory). We are
assessing a child’s ability for comprehending language in the form of
a story and the child’s ability to answer yes/no and WH- questions
about information. The study also tests the child’s ability to repeat
a story heard and talk about a picture they see. The evaluator will be
listening to the child’s speech intelligibility and get a general
level of vocabulary knowledge both in understanding and naming.
In addition, via an assessment checklist, the evaluator will be
able to assess general pragmatic language skills (functional
appropriateness in conversation skills).
Is
this a formal SPEECH and LANGUAGE evaluation?
It
is formal because we are using standardized and norm-referenced
assessments. It is however looking at a specific area of speech and
language, tailored to this study and therefore may not be considered a
comprehensive evaluation, individualized to your child.
What are the benefits from being
in this study?
Research is designed to benefit society by gaining new knowledge.
You may also expect to benefit by learning about your child’s speech
and language skills. A brief
report will be supplied to you following the study.
What
are the possible risks or discomforts involved from being in this study?
There
are no risks to your child during study participation.
What if
I or my child has questions about this study?
You and your child have the right to ask, and have answered, any
questions you may have about this research. If you have questions, or
concerns, you should contact Dr. Evelyn Klein at: klein@lasalle.edu.
Or call our research center at: 215 887 05748.
Email is usually the fastest way to receive a reply!
How many people will take part in this study?
If your child is in this study, your child will be one of approximately
50 people in this research study.
How long will your child’s part in this study last?
Your child’s involvement will be approximately 2 to 3 hours. This will
include one-plus hours with you and about one hour with the evaluator.
Should
I bring anything with me during the day of the evaluations?
It is suggested that you bring a special toy, book or game so your child
may be occupied while you are being instructed on administering the
tests. You may also want to bring a snack and drink during the break. It
is a good idea to bring another adult with you, if possible.
WHY are we not doing a full S/L Evaluation and what is in this for me if
this is not a full speech language evaluation?
This study focuses on the functional and social aspects of speech and
language. This study offers children who are unresponsive using a
traditional testing approach an opportunity to respond using an
alternative type of assessment from which results can be shared with
school personnel, if desired. We are looking at speech and
receptive-expressive language with measures of narrative language,
vocabulary, and working memory. We will also note any major impairments
in speech articulation, fluency, and voice however these will be
assessed more informally and noted if there is a concern. The findings
will help determine abilities in understanding and
using language.
Is there any special information
that I will be asked prior to having my
child evaluated that could
possibly impact the results?
Yes. The evaluator needs to know if your child has any sensory
deficits in hearing or vision. It is recommended that you have your
child's hearing and vision screened prior to the testing day. You can
check this out with your pediatrician, family physician or school nurse.
CAN I use this testing
information to present to my school?
Yes. The assessment will provide valuable norm-referenced testing
information that may be used for planning and treatment purposes.
MY school cannot seem to assess
my child... can this eval be presented to
the school and accepted as
part of the IEP testing process?
The information should be beneficial to planning for the IEP process
since the tests used are standardized and norm-referenced and a
certified and licensed speech-language pathologist who is also a
licensed psychologist is supervising the evaluations.
My therapist can not seem to get
a full grasp on my child's skills since she
does not speak. Can I present
the summary to my SLP to help with treatment?
IS there anything else she
needs to test my child for or is everything
covered???
You can certainly share this information with your child's therapist.
Depending on your child's results, additional assessment information may
be desired. In any case, ongoing monitoring is important to track
treatment progress.
IF
i participate in this study, Can i receive treatment advice?
Unfortunately
no. Your child is not going through a full evaluation but participating
in a study to assess specific speech and language skills. We cannot
provide ‘advice’ on treatment since the professionals involved have
not performed a full evaluation. However, recommendations will be made
for follow-up.
The study is at the
SMart
Center
. Can I consult with Dr. Shipon-Blum about my child?
Although the study takes place at the Smart center, involvement in the
study is independent of an evaluation and treatment at the
Smart
Center
. Dr. Shipon-Blum is not available for consultation unless appropriately
scheduled.
Does my child have to be a
patient at the
Smart
Center
to participate?
Absolutely not! ANY
child who meets study requirements can participate?
My child is a patient at the
Smart
Center
. Can I schedule our follow-up evaluation for the same day as the study?
We will do our best to schedule you for the same day assuming you
are flexible with dates. Please
be sure to speak to JEN about this at the time of scheduling for both
your follow-up appointment and study participation.
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