Conversations with Parents and SLPs about Early Intervention Metro Speech-Language Symposium, 2012...
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Conversations with Parents and SLPs about Early Intervention Metro Speech-Language Symposium, 2012 Kathleen Fahey University of Northern Colorado Katheryn Boada Children’s Hospital Colorado Shannon Robel Life Care Center - Greeley
Conversations with Parents and SLPs about Early Intervention Metro Speech-Language Symposium, 2012 Kathleen Fahey University of Northern Colorado Katheryn
Conversations with Parents and SLPs about Early Intervention
Metro Speech-Language Symposium, 2012 Kathleen Fahey University of
Northern Colorado Katheryn Boada Childrens Hospital Colorado
Shannon Robel Life Care Center - Greeley
Slide 2
Learning Outcomes Recall general trends in research about
parent involvement in early intervention Describe the
characteristics of a qualitative case study Consider themes from
parents and SLPs regarding early intervention Discuss implications
of the themes for working with parents and their children
Slide 3
Early Intervention Defined Early intervention is a broad term
that refers to a wide variety of therapy activities intended
specifically to enhance the development of young children who are
at-risk for or are developmentally delayed or disabled (ASHA, 2008;
Ramey & Ramey, 1998). Part C IDEA includes children birth to
three who are developmentally delayed, disabled, or are at-risk for
delay (American Speech-Language-Hearing Association [ASHA], 2008).
Part B IDEA (three to five) also eligible for services in early
intervention and preschool settings (ASHA, 2008).
Slide 4
Early Intervention Defined Infants and toddlers cannot be
appropriately served in isolation from their families. Services are
to be centered on families and children within the context of
families' activities and routines (American Speech-Language-Hearing
Association, 2008b, p. 2). Because communication growth relies on
social interactions, early intervention often takes on play-based
forms, occurs in natural environments, and utilizes natural
communicatorsthe childs family members (American
Speech-Language-Hearing Association, 2008a, p.3).
Slide 5
Early Intervention Defined IDEA, 2004 and NCLB 2001 stress the
importance of family/school partnerships as a more meaningful
method of educational intervention rather than a child-focused
strategy alone (Knight & Wadsworth, 1999). We define early
speech-language intervention to include children from birth to 5
years or prior to entrance into kindergarten.
Slide 6
What do we know about parents and early speech-language
intervention? Only nine studies target parent perceptions in early
speech-language intervention. Larger body of work regarding parent
perceptions of a wide variety of services available to children
ages birth to five and school-aged children. Themes in the
literature: Participation, Access to Services, Information,
Support, Finances, Time
Slide 7
Purpose of Study What Perceptions do Parents and SLPs have
about Early Intervention for Children with Speech-Language
Disorders? Our focus was to explore parent and child needs,
barriers to parent involvement, and speech-language pathologists
perspectives on working with families.
Slide 8
Qualitative Case Study A qualitative case study seeks to
uncover meanings and represent the voices of the participants.
Researchers use focus groups, interviews, and observations to
explore topics related to the research question. Researchers use
descriptive data to discover and interpret themes.
Slide 9
Qualitative Case Study Participants Multi-site: 5 RiteCare
supported clinics in Colorado 15 caretakers (parents/grandparents)
7 SLPs who provide early speech-language intervention and 15 SLPs
in a focus group at a conference Researchers Faculty Lead
Investigator and C0-Investigator 2Graduate Students at UNC -
Theses
Slide 10
Qualitative Case Study Methodology Individual interviews and
focus groups Open-ended questions to promote dialogue and gain
insight Researcher field notes and journals Analysis for
identifying themes Using themes to create a collective
perspective
Slide 11
Themes: SLP Roles & Factors Affecting Parent Participation
The SLPs Role 1) Parent-SLP Relationships 2) Experts &
Educators 3) Target/Maintain Functionality for Children &
Parents 4) Resource 5) Refer, Recommend, Navigate
Slide 12
Themes: SLP Roles & Factors Affecting Parent Participation
6) Factors Impeding Parent Participation Timely and appropriate
referral Access to information about who, when, where Availability
of services Waiting lists for services Amount of effort to find and
coordinate services Cost and inadequate insurance support Time for
therapy and homework
Slide 13
#1 Parent-SLP Relationship Understanding and supporting
feelings Reality of daily life and situations Special relationship
between parent and SLP and the child and SLP SLPs remind parents of
progress and developmental journey Its an intense, its an emotional
bond and you feel like theyre the only other person that really
gets it.
Slide 14
Parental Emotional Response We were struck by the emotive words
from our parents! CryingSatisfaction with Progress Frustration
Acceptance of Disability StressorsAlone ExhaustionHelpless
OverwhelmedFear of Failure DrainedEmpathy PressuredDont be
Complacent Burned-outAfraid Worried
Slide 15
Parent-SLP Relationship: Emotional Response - Parent Voices
Expectations and concern present and future I dont try to set a lot
of high goals for him. I dont know what his capacity is, so you
protect yourself. To actually say, Yes, he has a disability just
brought me to tears. It was devastating for me to speak it, because
when you say it, it's your accepting it. That was very difficult
because you want your kid to be normal. I dont care how perfect or
how much I love him, it is still hard for me to realize what hes
not going to have and not going to be. You feel alone and you worry
about your son. When Sandra first told me verbal apraxia, I looked
it up and I cried all afternoon and oh my gosh this is so bad.
Slide 16
Parent-SLP Relationship: Emotional Response - Parent Voices
Anticipation of events Is he going to be able to talk? Ever? And
she was like, I think so. I cant say. And thats super scary. I am
ridiculously anxious about kindergarten. I really am, which is so
funny that I am more nervous, hes ready to go, he cant wait, hes
excited! Parents need to see progress. Sally would say, Hang in
there. He's doing great, and she reminds me of all the things he
was doing or shell show me his test, Look where he was and look
where he is! Do you know what I mean? That constant feedback. Hes
growing, hes still learning. Its slow, but hes still learning.
Slide 17
Parent-SLP Relationship - SLP Voices Information, reassurance,
validation, support I think, especially the parents that I am
working with right now, the majority need to know that their kids
are okaythey just want to know what the kids abilities are going to
be and what the limitations are. They need validation, support to
help their child to learn the language skills that they havent
learned. I feel parents need some information about the
developmental process and some affirmation that what theyre doing
is the kind of support the child needs, but it varies for every
family.
Slide 18
Parent-SLP Relationship - SLP Voices Realistic expectations,
strong communication, individualized And just understanding what
progress can look like, so there is realistic expectation in mind
for parents; to establish an open line of communication and a
really healthy relationship with parents. I think early
intervention can be really overwhelming for parents. Its just the
amount of expectationand there is that care-giver burnout. I they
need reassurance that their child is in the right place doing the
right things and making progress. I think [they like] that someone
is taking a very personal interest in their child and family and
providing things for then to do at home with their child in mind,
not just some sort of canned thing.
Slide 19
Parent-SLP Relationship - SLP Voices Sincere and supportive
relationships I work with a lot of nonverbal severe needs kids and
I think a lot of what they appreciate is that youre telling them
theyre not crazy when [the child] is doing certain little things
that are communicative, and youre validating that for them, and
that the kid just doesnt exist, that there is really true intent
here. When they hear a professional say it, it makes them feel like
its worth it. I think they enjoy an adult that can talk back. I
think thats a big deal and that you have to be very supportive and
very careful of their - very fragile were all that way with our
kids.
Slide 20
#2 SLPs as Experts and Educators SLP is expert on
speech-language, but parent is expert on child --- two-way street
Provide information that parents need to assist their child Take
care to gauge the timing and amount of information SLPs set goals
and identify areas of potential growth
Slide 21
SLPs as Experts and Educators Parent Voices Shared learning
watching, reading, dialogue I like that I can watch through the
window because then I actually do home-based therapy with Erin. So
its nice that I can see what Lindsay is working on and the way she
cues and just everything. The handouts gave us different ways to
talk to him and to use different types of questions so we make an
effort to do that throughout the day. We do conversation modeling
in front of him.
Slide 22
SLPs as Experts and Educators Parent Voices One of the things I
really like is I feel that even though I may not be in for that
session, I still feel very involved in the process. I feel like I
get lots of information, and I always talk with Katie afterwards
and get feedback, and I know theyre very clear about what theyre
working on and very, very, savvy in terms of giving me techniques
and things to practice so I dont feel like Im out of the loop.
Slide 23
SLPs as Experts and Educators - Parent Voices I think speech
therapists are different people because you guys notice things and
hear things that I dont notice and I dont hear. I dont know if its
cause Im a mother or what, but they catch things. I call speech
therapists miracle workers. You tend to hold your children back,
because theyre a blessing. You're not realizing, well, maybe they
should be doing this. The therapists were able to teach us where
Todd should be, what he was lacking, and what things we should
expect him to do now and don't just kind of hold him and coddle him
and protect him. So it was giving us a lot more direction and
telling us where we needed to push Todd. I definitely don't think
he would be anywhere close to where he is without their help.
Slide 24
#3 SLPs Maintain Functionality for Children and Families
Considering the childs interest during session planning is a small
investment that may result in a significant generalization return.
Make suggestions for home practice fit in with daily routines.
Create individualized therapy goals and activities, but keep the
big picture in mind.
Slide 25
SLPs Maintain Functionality for Children and Families Parent
Voices Intervention requires integration of family priorities Its
kind of an eye-opener. Okay, he can do this. He should do this. He
knows how to do this. What, as a parent, can you do to facilitate
this? Because it doesn't stop. If it stops when you leave the
building, then you are not gaining anything from it, and I think
that is what I get from my therapist. My son has issues with food
textures and so the therapist says, Hey, bring in whatever you want
him to eat and well work on it here, so I feel like the therapists
really works on a very personal level with you and its not just a
cookie cutter therapy. They really make it what your child
needs.
Slide 26
SLPs Maintain Functionality for Children and Families Parent
Voices Fitting activities into daily events and routines We just
messed around and we just played. He is very intelligent, so it was
easy to create games on the spur of the moment wherever we were.
Wed fit it in here and there. We didnt really have a schedule of
were gonna go home and do this or that.
Slide 27
SLPs Maintain Functionality for Children and Families SLP
Voices Providing parents with tools for successful carryover We get
a lot of those social issues, you know. Well, I took him to the
store and he threw a fit cause it was time to go. We dont know how
to transition. Explaining to the parents how structure and routine
and consistency are so important. I think they should be part of
the planning. They need to be part of the whole process. We work
with kids on specific goals that are developmentally appropriate,
but maybe theres a bigger picture that the parents see that we dont
see.
Slide 28
SLPs Maintain Functionality for Children and Families SLP
Voices Listen to identify what families need now. The diagnostic
was scheduled for 2 hours. I stayed and visited with mom and dad
and played with the child [4- years-old] and we talked and they
were probably there for four hours. And at the end, Dad said to me,
All I want is to have a conversation with my son in the backyard as
we play ball, but it took four hours and a lot of pain to get to
that place.
Slide 29
#4 SLP as Resource SLPs Provide Out-of-Therapy Ideas and
Homework SLPs Generate New Ideas Parents Want More Education and
Resources from SLPs
Slide 30
SLP as Resource Parent Voices Develop the partnership and guide
parents Obviously they have much more knowledge than we will ever
have about speech and what needs to be done and where my child
should be. Youre not just having therapy for a kid, youre having
therapy for a parent. What do we need to do? This is where we want
to go, this is what we want. What do we need? When we work at home,
what I would like from Lindsay is to have lists of things that shes
working on so I know what shes doing.
Slide 31
SLP as Resource Parent Voices Guidance They give us handouts of
where to go to with some of the other therapies and what to do at
home, so I think they really work hard at making a therapy program
that is not just once a week. Its once a week here supported by
everything you do at home that they help you achieve. I really have
to watch more intently to make sure I get these skills. So it would
be great if there was something to teach me, the mother, that I
could continue.
Slide 32
SLP as Resource Parent Voices Create and maintain resources It
would be nice to have some central place to list these resources
because a lot of the resources I find is through word of mouth or
sitting in the room and people say, Hes on his way to this, and I
always go, Oh, whats that? Id like to be part of some type of group
for speech parents because the most that Ive learned is from a
friend of mine whose little boy has apraxia and asking her what
have you seen work and what else should I try?
Slide 33
SLP as Resource Parent Voices Define the purpose of home
activities what, why, how. You dont know things and theyre not
always mentioned to you. The familiarity wasnt explained to me. It
was just like, okay read this book again and work on the signs
again, and Im like ugh. So I wanted to move on, thinking that that
was the goal, not realizing that the familiarity in the repetition
was the goal. I think that could have been better explained to
me.
Slide 34
SLP as Resource SLP Voices Parents appreciate resources and
accessibility to therapist. They like things in writing. They love
it when you give them something that says this is what I think you
should do, or this is a resource to look at. I think the Internet
has made great strides in bringing parents together with blogs and
stuff. After an evaluation I try to give them something in writing
when they leave here, even though it is not a report. These are the
things we thought were good. This is an area just one area that I
would work on. I almost always give the parent my card, so that if
they go home and have questions they can call me back. I think it
is really important that parents know that they can contact
us.
Slide 35
SLP as Resource SLP Voices Power of motivation We have
backpacks and some families will bring those home. There is a book
in there and usually a little toy and game and maybe a set of cards
that go with it. So kiddos will check those out. And Ive heard
parents use that as leverage all the time. If you dont do
such-and-such you wont get a backpack today, so it is pretty
motivating for them to pick it out and take it home and play with
it. Parents want to know what to do. And they want stuff that is
very specific and very concrete that they can be doing to feel like
theyre being successful.
Slide 36
#5 SLPs Refer, Recommend, Navigate Advisor and entrance into
systems of care Communication helping parent communicate within
systems Overcoming obstacles
Slide 37
SLPs Refer, Recommend, Navigate Parent Voices Finding services
What if we could kind of get him into a therapy that doesn't feel
like therapy? And maybe he's going to be more willing to take that
in, so, helping parents find the right places to go to help
facilitate speech-language development or health, or help
facilitate social development or whatever their needs may be. I
think one of the most frustrating parts about the process is how I
felt like I had to go find all the information. You feel like youre
gonna miss something, that he should be involved in something
else.
Slide 38
SLPs Refer, Recommend, Navigate Parent Voices Providing
rationales for recommendations Originally I didnt want a small
group. I wanted it one-on-one but they really were able to educate
me and say, you know, Give it a try and made me feel comfortable
with being able to say, you know, this really is very beneficial
for him. Helping providers and parents access information Access to
information. I dont know whether it comes through the pediatrician,
day care providers, where we would find it. It definitely was word
of mouth or calling or finding or talking to someone. When we did
get the call from the district, it was like, Can you do Friday
mornings? So if you cant fit in those slots, I guess you would just
not have it or get it somewhere else.
Slide 39
SLPs Refer, Recommend, Navigate Parent Voices Listening,
validating, and acting on parent input The barrier we are feeling
right now is our input at school, what works best for Samuel. They
dont really seem to listen. Like with integrating him into regular
education or rewarding him for misbehaving. Were his parents. We
know what works best for him. Child Find did not fit with us. But
we were able to find Sally and it did fit. So its navigating the
system and figuring out what services are right for you, your
family, your situati0n.
Slide 40
SLPs Refer, Recommend, Navigate SLP Voices Point of access to
services I consider us to be navigators. Somebody to help because a
lot of kids arent in tidy little speech and language boxes. And
thats why collaboration with OT, PT, psychology, and medicalwill
help you figure out where youre going next. Being an assessor it
starts them on the road, whether its infant services, or if its
toddler services, preschool services. Were meeting the needs to
determine eligibility and that starts the process. Its the
entryway.
Slide 41
SLPs Refer, Recommend, Navigate SLP Voices Setting the tone So
I see parents a lot and you know the path is going to be long in
terms of having needs and communication for quite a while. Its kind
of like were setting a tone for what the district will be providing
them. Setting that path, being the first interface to set a good
tone for this relationship that will be long-standing with
district. From my perspective, maybe more uniformity. I am getting
the impression that models vary depending on how each district
interprets what the processes are, so I think parents have a very
difficult time navigating these processes.
Slide 42
SLPs Refer, Recommend, Navigate SLP Voices Tri role educate,
advocate, empower Sometimes I see the line kind of blur between
being an educator and being an advocate for parents. If theyre not
familiar with the educational system or how to navigate the medical
system, then we can educate them but at the same also advocate for
how they can really use and understand the system to get the best
possible education and medical services for their child.
Slide 43
#6 Factors Impeding Parent Participation Impeding factors
Timely and appropriate referral Access to information about who,
when, where Availability of services Waiting lists for services
Amount of effort to find and coordinate services Cost and
inadequate insurance support Time for therapy and homework
Slide 44
Factors Affecting Parent Participation Parent Voices Mismatches
concern/referral; families/systems It took until he was two years
and four months before we got a referral to [the agency]. And that
was because I was so frustrated with him not being able to say
anything. [The pediatrician said] Oh, you know, its a developmental
thing. Hell get there. Its been very frustrating not being able to
move on when I know theres something not right, you know. And I can
see it, its just like nobody believing you and finally people
believe you. Oh I see what you mean. So then what does a parent do
if you dont know what the next step is? Its not like theres a
manual out there going, Okay, heres whats out there available for
you.
Slide 45
Factors Affecting Parent Participation Parent Voices Mismatches
and Advocacy But I think that it has to be frustrating for a lot of
parents because were talking about early intervention and if you
have to wait six months, six months isnt a big deal when youre nine
or ten. But when youre four or five, thats a huge amount of time
that you could be helped and developed in better ways. And youre
not able to do that because you just have to sit and wait. I think
it really took an effort on your part because when we didnt do
anything, nothing happened. But when we started calling more
frequently, it seemed to move a little quicker.
Slide 46
Factors Affecting Parent Participation Family resources Money
and Time I think really awesome insurance would be helpful or a lot
of money, because I would be giving him even more therapy if I
could. Weve changed insurances several times so then, oh, its a
pre-existing condition, or you get three visits, it just doesnt cut
it. I kind of wish I had more time to practice more of it. But its
hard having five, you know, ideally Id like to practice every
single day theyre not [in therapy], 15 minutes or so with each of
the kids, but thats really hard to do.
Slide 47
Factors Affecting Parent Participation Parent Voices Family
resources - Schedules You almost want a coordinator to come on
board. Ill hire you and we can sit down and map through these cause
youre trying to navigate your own schedule and the schedules of
your other children and then, make sure they get to therapies, and
its overwhelming.
Slide 48
Summary and Implications Parents have much to tell us about
their needs and their childrens needs. Take time to listen! Parents
want to be involved in early intervention. They look to SLPs to
provide: emotional support for themselves and supportive
environment for their child, guidance in navigating and accessing
all services, information about disorders and interventions,
direction in working with their child on goals
Slide 49
Summary and Implications Converse with families to understand
how much information they desire recognizing that this need changes
over time. Use rounding from the grand rounds concept, talk with
parents about their experience and their needs. How is it going?
What else do you need? Is there anything else that I can help you
with? Use half-sheets with bullets that can be agreed upon: What
will work and how/when will it work for you? Expect and acknowledge
parent emotionality. These parents warrant sensitivity. SLPs need
information and practice in how to respond to these
situations.
Slide 50
Summary and Implications Deliberately ask parents, through
conversation, how they perceive your roles. This will indicate to a
parent that you value family input and desire to make his or her
practice family-centered. Repeat this dialogue throughout the
intervention process because family perceptions, needs and
questions can change over the course of their childs developmental
journey. Help the family identify factors that impede their
participation in intervention. Work with them to change as many
factors as possible.
Slide 51
Action Plan How will you implement the ideas into your
practice? Use the note page to record salient thoughts, ah-ha
moments, implementation ideas for your parents and their children.
Use the action plan to write one to two specific objectives for
your work in the next 6 months.
Slide 52
Your Questions & Comments THANK YOU FOR LISTENING AND
INTERACTING WITH US!